NATIONAL CENTER Series 4 

For HEALTH STATISTICS Number 13 

VITAL and HEALTH STATISTICS 

DOCUMENTS AND COMMITTEE REPORTS 

Reportofthe 

TwentiethAnniversary 

Conference 

OftheUnited StatesNational Committee

onVitalandHealthStatistics 

Discussion of three problems in the gothering and use of 

health statistics: guaranteeing the basic rights of individual 

data sources; determining current needs for these dota; and 

indicating ways in which National Committees can contribute 

to their development. 

U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE


Public Health Service


Health Services and Mental Health Administration


Rockville, Md. September 1970 
Public Health Service Publication No. 1000-Series 4-No. 12 

F(.,r swle by the Superintendent of Documents, U.S. Government Printing Office 

Wushin:ton, D.C. 20402- Price 50 cents 
NATIONAL CENTER FOR HEALTH STATISTICS 

THEODORE D. WOOLSEY, Directo? 

PHILIP S. LAWRENCE, SC.D., Associate Director 

OSWALD K. SAGEN, PH.D.,, Assistant Director /or Health Statistics Development 

WALT R. SIMMONS, M.A., Assistant Director for Research and Scientific Development 

, Medical Consultant 

JAMES E. KELLY, D. D. S., Dental Advisor 

EDWARD E. MINTY, Executive O//icer 

MARGERY R. CUNNINGHAM, in/orrnatiorz O//icer 

OFFICE OF HEALTH STATISTICS ANALYSIS 

IWAO M. MORIYAMA, Ph. D., Director 

DEAN E. KRUEGER, Deputy Director 

Public Health Service Publication No. 1000.series 4-No. 13 

Library of Congress Catalog Card Number 7~-605825 
FOREWORD 

The U.S. National Committee on Vital and Health Statistics was established in 1948 at the recommendation of the First World Health Assembly to advise on matters relating to vital and health statistics and to 

promote and secure technical developments in the field of vital and health 

statistics. More recently the U.S. National Committee on Vital and Health 

Statistics was designated as a public advisory committee to the Secretary, U.S. Department of Health, Education and Welfare. 

To commemorate its 20th anniversary, all the past and present members of the Committee, and representatives of National Committees of 

several countries were invited to participate in discussion of some of 

the issues of the day in conducting surveys and collecting and using 

health statistics. 

... Ill 
CONFERENCE PARTICIPANTS


From Left to Rightu 

Front Row. Dr. Clyde V. Kiser, Dr. Conrad Taeuber, Dr. Philip M. Hauser, Dr. I. M. Moriyama, 

Mrs. Margaret F. Shackelford, Dr. Edwin L. Crosby, Dr. Robert L. Berg, Dr. Edward R. Schlesinger, 

Dr. B. Skrinjar, Dr. C. Horace Hamilton 

Second Row: Dr. John Storck, Dr. George Baehr, Dr. E. F. Krohn, Dr. Franklin D. Yoder, Dr. Donovan 

J. Thompson, Mr. Fraser Harris, Dr. Meindert J. W. de Groot$ Dr. Everett S. Lee, Mr. Walt R. 

Simmons, Dr. Ruth R. Puffer, Dr. William R. Gaffey, Dr. Robert Dyar, Mr. Theodore D. Woolsey, 

Professor Bojan Pirc 

Back Row: Dr. Forrest E. Linder, Mr. Donald J. Davids, Mr. Walter J. McNerney, Dr. Paul M. Densen, 

Dr. Herbert E. Klarman, Dr. O. K. Sagen, Dr. Elbridge Sibley, Mr. Michael Reed, Dr. Odin W. Anderson, Dr. Halbert L. Dunn 

Conferees not shown: Mr. Loren E. Chancellor, Dr. Brian MacMahon, Mr. Robert Parke, Dr. Eugene A. 

Confrey, Dr. Joseph T. English, Dr. Alice M. Rivlin, Mr. Lawrence Speiser 

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CONTENTS


Foreword


Conference Participwts


Introduction


Welcome byllr. English


Mr. WoolseyGreets theConference


Privacy snd Confidentiality in Collecting and Using Health Statistics


Situations Involving Risk of Invasion of Privacy and Breach ofConfi­


dentiality


Presentation by Dr. MacMahon -----------------------------------­


~scussion


Protection of the Rights of Participantsin Population Studies and Surveys-


Presentation by M. Speiser


Discussion


Issues in Confidentiality of Information,and WaysofAvoiding Breachesof


ConffdentialiW


Presentation by Dr. Taeuber


Discussion


Future Needs


Needs in Healti Statistics


Presentationby Dr. Linder


~scussion


Needs in Health Services Resources and Utilization Data ----------------


Presentationby Dr. Klarman


Mscussion


Needs in Demo~apMcStatistics


Presentation by Dr. Hauser


Discussion


Health Data Needs and Uses in Formulating Public Policy


Presentation byDr. Rivlin


International Collaboration ofNational Committees


Presentationby ~. Skrinjar


Discussion


Conclusion—Broad Conference Themes


Appendix:


Past and Present Committee Members


Observers and Guests of the Committee


Index -----------------------------------------------------------------

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THIS REPORT summarizes discussions thzzt took place at the 20th 

Anniversary Conference of the U.S. National” Committee on Vital and 

Health Statistics. Present and past members of the Committee met with 

invited guests, including foreign colleagues, to considev three problems 

of general concern to workers in the areas of demographic and health 

sta tis tics: 

(1) Whut steps should be taken to protect the basic humun tights of the 

individuals from whom the datu that yield these statistics are o btzained? 

Emphasized, on the one hand, weve the priwzcy rights of these data 

sources during the gathering, processing, and use of the statistics; and, 

on the other, maintenance of the confidentiality of the information secured. The individuals right to pvivacy and societyts needs for information must be reconciled. 

(2) What are currently developed needs i% (a) health statistics; (b) 

health swvices vesouvces and utilization &ta (c) demoqaphic statistics; and (d) demographic and health statistics to fomuikate public 

policy? 

(3) How can wovk in the areas of demographic and health statistics, 

national and international, be adwmced by National Committees? 

Eight invited papers are pvesented in abbveviuted fovm along with summavies of the comments by assigned discussants and the main points 

made in extensive general discussions. 
TWENTIETH ANNIVERSARY CONFERENCE


OF THE UNITED STATES NATIONAL COMMITTEE 

ON VITAL AND HEALTH 

Reported by 

John Storck, Ph.D., Consultant, National Centw for Health Statistics 

Past and present members of the U.S. National Committee on Vital 

and Health Statistics, a public advisory committee to The Secretary, Department of Health, Education, and Welfare, met in Washington, D.C., on 

June 3-5, 1969, together with some of their foreign colleagues to commemorate the 20th Anniversary of the Committee’s crest ion. The present	 document is structured according to the Conference agenda. 

The following presentation emphasizes substantive points receiving 

considerable emphasis, and therefore omits many of the contributions 

of individual conferees. Since the document merely summarizes a discussion, it should not be concluded that either a consensus is implied, 

or even a full presentation of individual opinions. Some rearrangements, 

condensations, and minor editings were made. It is regrettable that this 

summary does not do justice to the spirit—even gaiety and verve—that 

enlivened the meeting and enhanced its solid foundation on the varied experience and sturdy intellectual grasp of those who shared its deliberations. 
INTRODUCTION


The Conference was opened by its Chairman, 

Dr. Berg, who outlined its scope and described 

its Conference- related publication plans, which 

include the present summary and certain documents on the privacy-confidentiality problem that 

may be of use in the collection and use of statistics. He also introduced the foreign experts attending the meeting. Dr. Skrinjar conveyed the 

greetings of the World Health Organization (WHO) 

to the National Committee. She called attention 

to the fact that WHO is studying ways of fostering 

international collaboration by improving its information exchange service, and solicited the support and cooperation of the National Committee 

in this effort. 

WELCOME BY DR. ENGLISH 

In his welcome to the Conference, Dr. English 

stressed the current situation in providing health 

services to satisfy the country’s needs, and emphasized the functions that the National Center 

for Health Statistics (NCHS) must perform if current and rapidly developing needs are to be satisfactorily met. 

The Department of Health, Education, and 

Welfare is presently developing plans extending 

through fiscal year 1975. Fundamental facts are 

urgently required to give this planning a solid 

foundation, To an unusual degree, these facts must 

be of wide scope, detail, depth, and complexity if 

the planning is to meet the countryis current and 

expanding needs. While purely health considerations are highly important, 

evevy issue has to relate to the larger issue 

of what is going on inside the country . . . . It 

is impossible to have domestic tranquility 

in the land if the health care needs of the 

Amevican people are not met. 

Our problems in providing for these needs 

involve everyone, although they are more dramatically obvious among the poor. The planning problem has become more apparent and urgent because Americans are becoming more aware of 

these needs and of the possibility of satisfying 

them. Among other consequences, this has been a 

factor in producing “a galloping inflation in the 

cost of health care,” at double the rate of price 

increases in the rest of the economy. 

While the Federal Government obviously must 

participate in protecting and improving the country’s health, the Federal strategy of investment 

in health is undergoing extremely close examination at the present time. The Nation’s health is 

too valuable to the country and to its individual 

citizens, both immediately and as a future sourc~ 

of increased productive capacity, purchasing; 

power, and life satisfactions, to give point to tht: 

thought that access to them should be limited OIratione~ nor would any sector of the population 

be satisfied if health efforts directed toward them 

were curtailed. We must develop better ways of 

delivering health by increasing the capacity cf 

both private and public health care resources. 

As an example, Dr. English pointed out that 

30 percent of Medicaid funds are supporting 

nursing homes for the aged. The average length 

of stay in these homes is about 4 years, and t~ ­

ically terminates in death. While this use satisfies an important need and can easily be ju$ ­

tified, there is also, for example, a real need 10 

deliver high-quality health care to mcxhers ald 

children and young families, where the soci II 

and personal return in years of more healthy 

living would be very much greater. 

As the continuing and complicated integratt!d 

planning goes on, we must make certain that the 

planning structure itself does not needlessly proliferate after the earlier manner of the health 

services structure. “When you have good data 

you have the first leverage for rational and solid 

action. ” For such data the Department is depending largely on the National Center. But there i:: a 

need for more than national data, or data concerning large sectors of the country. As workers ag[Lin 

and again point out, they need data concerning tht:ir 

own communities. We can help here by conducting area surveys to measure local needs, as recently has been demonstrated with respect to htmger and malnutrition needs. Because of the SUccess of these surveys State Governors are row 

asking us for technical assistance so that they can 

conduct their own surveys. Here too the Center 

can help. 

2 
Needed also at the Federal level is a nat ional surveillance svstem to determine the nutritional status of our people. Here too the Center 

will help. The sampling must be of high quality, 

since many may be inclined to question the findings. Dr. English observed that the nutritional 

surveillance system will probably be only one of 

a number of major pro~lems on which the Department will be seeking help from the Center. 

Some of these needs will call for expansions of 

statistical expertise. 

Although we have a variety of ways for delivering health services to the American people, 

we need many others. We also need more cooperation between agencies. 

We have learned that if you set up ~esponsive and accessible comprehensive health 

care services, people will use them, including people who may not now be getting any 

cave at all. 

Dr. English noted a growing percentage of the 

country’s younger physicians wish to establish 

themselves in ghettos and rural areas. More physicians are participating in group practice, and 

more who are working in poorly served areas are 

organizing themselves into associations to handle 

the health problems of their areas. 

MR. WOOLSEY GREETS THE CONFERENCE 

Mr. Woolsey noted that recent developments 

in public health have increased opportunities for 

helpful associations between the Center and other 

agencies, including especially some of the newer 

organizations in the Public HeaIth Service whose 

missions have not yet been clearly defined. The 

excellent use which the National Committee made 

of earlier opportunities has had tremendous influence in the whole field of health statistics in 

the United States. Mr. Woolsey cited four examples: the studies which led to the creation of 

a continuing National Health Surve~ the long interest of the Committee in a classification of 

diseases which could be used to develop multiple 

causes — of death statistics; the Committee’s report

on medical economics; and its numerous reports 

on fertility measurement, culminating in the recommendation of a continuing fertiliW survey. 

The Center has not yet been able to get funds 

to implement this last recommendation, although 

it is strongly supported within the Department. 

PRIVACY AND CONFIDENTIALITY IN COLLECTING 

AND USING HEALTH STATISTICS 

Three principal speakers— Dr. MacMahon, Mr. Speiser, and Dr. 

Taeuber-developed phases of this topic. Here as in other substantive 

discussions, each speaker was followed by an assigned discussant, before the topic was opened up for general consideration. 

Situations Involving Risk of 

Invasion of Privacy and 

i)reach of confidentiality 

PRESENTATION BY DR. MacMAHON 

Dr. MacMahon confined his discussion to 

situations in the health sphere where 

documents are created by or about an individual and deposited outside his immediate 

control. Thwe may be a legal Yequirernent 

for the existence of the document, ov the individual may voluntaw”ly create it for some 

purpose that he himself has in mind. 

The problems to be discussed arise when such 

documents are used in other ways, or by other 

persons, than were originally contemplated. 

While even the preparation of statistical 

tabulations from legally required documents may 

be regarded as invasion of privacy—since it 

necessarily involves perusal of the documents by 

persons other than those for whom they were 

intended—Dr. MacMahon held that there are advantages in not demanding the narrowest interpretation of our rights to privacy: 

In spite of the potential problems, few people 

would argue against the need for State and 

Fedeval agencies to prepave statistical tabulations from vital records and Census 

schedules. 

3 
Dr. MacMahon cited many instances of the guidante made available to planners and researchers 

by routine statistical t~bulations, as likewise by 

closer study of more detailed. relationships: for 

example the impetus for our regional medical 

programs directed against heart disease, cancer, 

and stroke; campaigns to reduce the special 

health problems of minority groups or of particular localities, as tuberculosis among Negroes, 

cervix cancer among Puerto Ricans, water-borne 

infectious disease among American Indians; wide 

variations in infant mortality rates between ethnic groups and regions of the country, and even 

the general leveling off in the United States of a 

decline in infant mortality rates that had extended 

over many decades; and most dramatically, light 

on 

this centuvy’s remarkable epidemic of lung 

cancer-an epidemic which has cawsed more 

than a million deaths in this countiy alone in 

the last 50 yeavs. The hypothesis that cigarette smoking is the cause of this epidemic 

was sparked by the close correlation between 

the increasing consumption of cigarettes and 

the rising death rate from lung cancer . . . . 

It is questionable whether this trend would 

have been observed unless routine tabulations had been madefrom death cewtificates— 

certainly its extent could not huve been documented. 

However, much more concern about invasion 

of privacy is felt when the use of records requires identification of the specific individual. 

There are two general situations: when the record is used to identify a group of individuals with 

certain characteristics concerning whom additional data are sought (followback studies), and 

when the information on one record is linked to 

that on another record pertaining to the same individual who does not know that the records are 

being associated (record-linkage studies). In either instance, the records involved need not be 

vital records; for example they may be hospital 

records, or records obtained from disease or 

other registers, or the records may come from 

nonhealth-oriented sources. 

John Snow used the followback technique 

around 1850 to demonstrate that cholera was being transmitted through London’s water supply in 

certain areas. His studies enabled effective pre ­

ventive measures 40 years before identification 

of the microorganism responsible for the disease, 

Hundreds of followback studies involving man!’ 

health conditions related to many areas, have: 

been used to investigate public health problems, 

As a recent example sponsored by the Nationa 1 

Center, 

postul questionnaires to samples of wome~ 

identified from birth certificates and infant 

death certificates ave providing previously 

unavailable national cik!a on the relationship) 

of fevtility and infant mortality to social ami 

economic factors and to the motherts pre ­

vious reproductive histovy. 

Use of records for followback to the patier t 

or other informants has been undertaken for 

medical-care purposes or for the protection of the 

community’s health, as well as in research. An 

important instance, clearly requiring a breach c~f 

the patient’s confidence on the part of his physician, is the legal requirement for notification to 

governmental authorities of certain contagious 

and infectious diseases, including venereal dis -

eases. 

Records themselves can be linked without 

followback whenever they can be referred to an 

identical origin, as to a person, family, busin.ess 

firm, location, or other specific means of assc ­

ciating separated pieces of information. Such link -

ages are now commonplaces in the business wor. d 

and also to the Internal Revenue Service, in tl e 

effort to cope with a rapidly increasing VOII.UTe 

of information about an ever-growing populatio I. 

The computer greatly enlarges our capacity o 

make record linkages. However, there are spc’­

cific reasons in the health area for an increased 

interest in record linkages: 

These include the countryfs greatly expanded 

effort in medical research in general, the 

increasing recognition of the community’s 

responsibility for the health care of its individual members, and the shifi in concevn 

from the acute infections to the chvonic di.;­

eases which have insidious onsets and oftm 

intevwzls of several decades between the OJ:­

currence o.fcausative events and the appew’­

ance of clinical disease. 

Over such long periods memory of possibly cau gal 

events is a poor substitute when records mi ~ht 

be available. 

4 
The potentialities of record linkage in the 

health field have hardly been tapped. With a routine system linking the major sources of medical 

data, one might learn much about the long-term 

outcome for infants exposed to special circumstances during pregnancy and delivery, and 

trested indifferent ways; the long-term effects of a 

child’s environment on his physical and mental 

health as an adult; the later mortality and hospitalization experience of groups of persons inadvertently exposed to suspected noxious agents; 

the illness experience of persons whose occupations expose them to suspected toxic substances; 

the long-term mortality of persons receiving dif ­

ferent forms of surgical or medical therapy; and 

the risk of occurrence of specific diseases in the 

parents, children, and siblings of affected individuals. Centralized record linkage also would 

greatly facilitate diagnosis and therapy in providing medical care. Through the operations of 

the Follow-up Agency of the National Academy of 

Sciences, based chiefly on the records of the military services and the Veterans Administration, 

where filing of claims for veteran death benefits 

allows identification of over 95 percent of all veteran deaths, the long-term effects of specific military experiences and the possible relationship 

of these experiences to such consequences as 

subsequent risk of cancer have been studied. 

The addition of birth certificates in the study of 

the deaths of military veterans has enabled establishment of a roster of twins, on which a considerable number of special studies already have 

been based. 

The present decentralization of records in 

the United States imposes serious limitations on 

the use of record linkage. Here arises one reason for various proposals aiming at a more unified national statistical system. One step forward 

would be establishment of a national death index 

permitting identification of at least the time and 

place of death of indexed individuals. This would 

help at least to locate where the records of those 

included are filed, and at a minimum would help 

to clear files of these names. A more fundamental 

solution, at least for the employed population, 

would be to make the data on Social Security records available for medical research. To do so, 

however, would 

raise impovtant issues of privacy-including 

philosophical questions as well as the practical problems that would amuse from restrictions of access to files and limitation of 

access to authorized personnel. In my own 

opinion—and this is no more than a guess— 

the opening up of the Social Security System 

fovmedical research purposes would be pevhaps the most significant advance in the utilization of routine records that might be contemplated at the pvesent time. It is also one 

of the most sensitive aveas. 

In Dr. MacMahon’s judgment, the opening up of 

the Social Security files for medical researchof course under stringent safeguards— “would 

lead to an advance comparable to those brought 

about by the work of Graunt or Farr, and by the 

creation of the National Health Survey in 1957. ” 

Discussion 

Dr. Dyar, the assigned discussant of Dr. 

MacMahon’s presentation, sought to identify the 

basic reason why so many are alarmed at the 

proposed enlargement of available information 

relating to themselves and their affairs. “It seems 

to me that the basic reason for concern is to be 

summed up in one word, and that is the word 

uncertainty.” In the spectrum of possible queries, 

where does the need for privacy begin? Obviously 

the answer will vary according to circumstances. What is a sound working definition of 

confidentiality? Further, how much information 

does society need? Where should the right of the 

individual take precedence over the needs of 

society? 

We are uncertain also as to the bases on 

which our actions rest: 

One of OUYweaknesses as health people is 

that we have limited our discussion to ourselves, and have not involved others who 

might make a major contvilrution here: the 

lawyer, the philosopher, the sociolo~”st, and 

particularly the consumer himself. 

The problem is aggravated because we are 

living in a society that is undergoing changes in 

its values. There are discrepancies between 

standards of individual and public conduct. We 

5 
are apprehensive concerning our legal rights. 

We may even be worried by the ingenious reasonings of epidemiologists. “There is a whole new 

group of technologies and methodologies that 

heightens apprehension.” People worry about 

computers, case registers, data banks, and inferences drawn from combinations of records. 

We are going to have to devote some of ouv 

efforts to the resolution of the uncertainties 

that suwound situations involving the risk of 

privacy invasions. This is especially necessary when they velate to uncertainty of policy 

on the management of data, and secondly with 

~espect to the ways in which the consumer 

or the public may be involved in the making 

of policy and in decision determination. 

In the ensuing general discussion Dr. Hauser 

described the fear about invasions of privacy as 

“a cultural atavism not relevant to our presentday metropolitan mass society.” It is associated 

with a fear of government, which needs more information as a basis for policy and action and 

evaluation of ongoing programs. Actually, the 

private sector much more than government is 

actively and even viciously infringing on our privacy, as in the passing around of credit information 

and misinformation without any controls whatsoever. It is true in government also, however, that 

attention needs to be given to control agencies 

accumulating dossiers about individuals with inadequate critique of the statements that are 

allowed to enter the files. 

Dr. Hauser noted that statistical files are 

subjected to controls, checks, conformance requirements for accepting data, et cetera. In contrast with a defensive position, therefore, “what 

is needed is a very positive and aggressive program to provide the general public with an education on the actual situation. ” 

Dr. Gaffey felt that we should meet “the problem as it is perceived by most people,” which is 

based partly on such reactions as a vague general opposition to things like computerization. 

The present clumsiness of our record-keeping 

system is a sort of de facto protection of privacy. 

However, as the system is improved, “we must 

protect privacy by some sort of legal explicit 

safeguard, or code of ethics, or what have you.” 

At this point a number of speakers suggested 

the possibility of “trade-offs” as between private 

demands and public needs. Central to this would 

be the need for a “broader understanding of what 

we are up to”: 

OuY profession has failed to explain to lhe 

public that there is such a thing as collecting information for geneval use: not fo~ the 

sake of doing something to the individual OY 

about the individual, but rather for the sake 

of assembling a mass of information which 

is going to be used without any direct reference to the individuals who provided the information. 

It was emphasized, however, that this did not 

quite cover everything. The public wants both not 

to be tattled about and not to be annoyed: 

I think a lot of the public objection now to interviews and questionnaires is not that they 

ave afra;d somebody else is going to find out 

the answer. They are just annoyed at being 

asked too many questions too many times by 

too many people. It is an inwsion of PriwcY 

even if they are completely assuved that nobody will evev see their answer besides the 

interviewer. 

The Office of Management and Budget, Office of 

Statistical Policy was established in part to prevent undue annoyance of respondents. 

Other questions arise with respect to the at.. 

curacy and fairness of the information lodged 

even in statistical files. It was suggested that any 

person should have the right -to learn what information is located against his name “and t() 

respond to the record keeper with such corrections as may be necessary.” This becomes es” 

pecially important when a record is used not on~~ 

to produce statistical information, but as legal 0-

other evidence of particular facts. Not discusseli 

were the problems that might arise if record; 

were freely open to inspection, or the obstacles 

to their evidentiary value that might be create ~ 

if they were liberally amendable. 

It was pointed out that privacy invasion is ~ 

subjective variable: 

6 
What is an invasion of privacy to one person 

may be completely inconsequential to anothev 

pevson. Also this changes with the times. The 

social scientists and legal scholars should 

come up with something bettev than these 

pvivate judgments. 

Perhaps the point of control should be located in 

penalties for the misuse of information. Dr. de 

Groot held that “the question of privacy should 

not be within the discretion of the public. They 

will tell everything, not only to medical men, but 

to everybody.” 

There was considerable discussion as to who 

can now obtain certain specific kinds of health 

records, and as to who should be able to get 

these records. The principle that medical records 

should be made available to patients only with the 

consent of his physician sounds reasonable; but 

many questions and problems would remain. 

Would the permission be necessary to deposit 

the data in a computer? Is the physician equipped 

to decide who shall use the data? Can a permanent 

decision safely be made in what may be a changing’ situation? What would happen to medical research if records are open or closed according 

to obscure criteria? In particular, would followback studies languish? Dr. Crosby discussed the 

general question in terms of hospital medical records: 

To all intents and purposes, the hospikzl medical records are not confidential any more. In 

addition to the privacy of the individual, the 

pvitxzcy of the physician is at stake in many 

instances because of the malpractice suits 

now spreading tjzroughout the country. Then 

too, about 75 pe-rcent of all patients admitted 

to general hospitals in this country are covered by some form of insuvance, and the 

commercial insurance companies aye insisting that the records become available to them 

without the patient~s consent. 

While it is true that malpractice suits open 

Up the patient’s record to the court only if the 

patient has entered an action himself and theoretically only to the extent that the record is relevant to the damages claimed, there are ways of 

getting around this, as through issuance of subpoena by the court, or by opening the medical 

record to the insurance company through a condition in the initiating contract. 

Mr. Woolsey proposed that one ask what are 

the ways privacy might be invaded by surveys, 

assuming confidentiality y has been assured. There 

would appear to be five ways in which the citizen’s privacy may be interfered with: 

He is not left alone. Is this a dead issue in 

todayrs society? 

He is interrupted in his activities. 

He may be irritated, as by the number or 

nature of the questions. 

He can be frightened. “When people do not 

understand what you are doing they may be 

frightened. ” 

Sometimes he is put to some expense, especially when data are collected from establishments. 

In addition to seeking ways to protect the confidentiality of records used for statistics and research, this Conference might well address itself 

to privacy questions like the above, leaving it 

to others to work out their legal expressions and 

ramifications. 

Dr. Puffer sugge steal that the legal aspect of 

such events as birth and death be separated from 

the additional information now included on the legal certificates but required only for statistical 

and research purposes. For legal purposes there 

is a need for what might be called the fact of 

death and the fact of birth, including of course 

certain additional information such as names, 

date, place of occurrence, et cetera. The legal 

record would be open to the public. For analysis, 

as into congenital malformations, multiple causes 

of death, and so on, much more is needed than 

is required for the legal record, involving medical records, hospital records, autopsy records, 

and much else. 

Dr. MacMahon thought that permission to 

use hospital records for analysis might well be 

obtained when the records first originate. “I 

think that in fact both the people involved and the 

physicians are amazingly free with the information when their cooperation is requested. ” 

7 
Protection of the Rights of Participants 

in Population Studies and Surveys 

PRESENTATION BY MR. SPEISER 

Mr. Speiser accounted for the current concern with the privacy problem by the increasing 

adoption, since 1945, of surveillance technologies 

that had long been available, although largely in 

less developed forms. These spread in use among 

law enforcement officials, government regulatory 

agencies, businessmen, civic groups, behavioral 

scientists, and others. Simultaneously the arrival 

of the computer entirely altered quantitative possibilities with respect to information collecting 

and storing, at a time when American law and 

public opinion were slow in adapting themselves 

to the changing situation. As Westin has suggested, 

this lag may have occurred because of delays in 

the replacement of previously accepted assumptions about decision making. It had been assumed 

that decisions were best arrived at by individuals 

using a combination of direct judgments of situations and abstract reasoning. This basis for planning began to replaced by a “predictive theory of 

information” centering around the massing of 

data interpreted through the techniques of statistical methodology. 

The right to privacy, which Judge Thomas M. 

Cooley in 1878 was first to call “a right to be let 

alone”- a phrase quoted by Warren and Brandeis 

in a famous 1890 Harvard Law Review article 

and by Brandeis in Olmstead v. United States 

(1928)–even now is “being worked out on a caseby-case basis. f! Hence as regards the rights of 

participants in population studies and surveys, 

“we do not yet know what they are. ” We do know, 

however, that Americans are very sensitive as 

to questions asked in certain areas, especially 

by government agencies, One of these areas is 

religion, although from 1850 through 1936 the 

Bureau of the Census did make a half dozen 

counts of religious affiliation. Sex questions have 

been another sensitive area, as likewise details 

as to reading habits: 

It is cleav that any compulsory questioning 

of Americans by the government about what 

they have read and what books they kave i?. 

their homes, would be unconstitutional. Wkxa,? 

is not clear is whether a voluntary government survey would be unconstitutional, although my judgment would be against its validity. 

In a free society, we are entitled to have 

“hidden ihoughts, hidden practices, hidden interests, H to live safely behind our “psychological 

armor,” to be assured of “the emotional relit !f 

of letting one’s hair down in private. ” Such preferences and requirements reach far beyond a~­

surances of confidentiality. 

When we talk about the right of privacy, %]e 

mean the Yight of an individual to keep information about himself or access to his pwsonality completely inaccessible or secr?t 

from othe-rs. 

Confidentiality, on the other hand, is co%­

cerned with the disclosure of certain info rmation to another pezson for particular puvposes. It is dependent on either an exprem 

or implied agreement between the two to Testiict the information to themselves. 

The widely recognized doctrine of consent 

requires that permission to divulge inlormat ion 

be freely given and that it be informed. Volunta ry 

consent agreements 

do not really help much if theve is a disclosure beyond that agreed to, or if theve is an 

invasion of privacy which is not warran led 

by the type of survey conducted. 

Indications to respondents that a survey is volmtary are often less than candid, leaving shadowy 

suggestions of compulsion. 

While the Public Information Act of 1966 

makes Federal Government records and information more accessible to the public, it specif icitlly 

exempts “personnel and medical files and similar files, the disclosures of which would constitute a clearly unwarranted invasion of persxmal 

privacy.” 
Mr. Speiser next considered various proposed techniques for protecting the public against 

information intruders. Imposing criminal penalties for breaches do not hold much promise, especially where the breaches have been made not 

for personal gain but in the interest of science 

or social good. “Over-zealousness by statisticians” probably would even less frequently be 

punished than over-zealousness in upholding the 

law on the part of enforcement agencies. 

Civil remedies against disclosures through 

court actions for damages usually must prove actual financial loss or physical or mental suffering as a result of the disclosure; and such legal 

actions are slow and expensive. Injunctions 

against future disclosures are of questionable 

value after the disclosure has occurred. In addition, a suit circulates the information, false or 

true. 

Administrative controls may be developed 

to prevent breaches of confidentiality: 

Here in the District of Columbia, the United 

Planning Organization has created a trusteeship in which the three trustees are legally 

responsible for maintaining confidentiality 

and anonymity of those on whom information 

is collected. It remains to be seen how this 

will operate in pvactice and how effective it 

will be. 

As a final possibility y, an advisory committee 

composed of statisticians, lawyers, representatives of public groups, and others might be created 

to determine how information is collected, what 

measures are being taken to maintain confident ialit y, and what should be done to deal with individual complaints against breaches of the system. 

Here as elsewhere, “it is the human equation and 

not the methodology that can provide the final 

measure of protection. ” 

In conclusion, Mr. Speiser spoke of 

the seeming insensitivity of many sociul 

scientists because of theiv feeling that because they are men of good will acting for 

the public good, neither their motives nor 

their methods may be questioned. The furor 

ovw the proposed National Data Center is 

an example of the public concern which arose 

because of the apparent lack of conce?n of 

government efficiency experts toward the 

right of privacy. 

Mr. Speiser characterized this as “a combination of bad politics and poor thinking. ” 

Discussion 

The assigned discussant, Dr. Confrey, cited 

Alexis de Tocqueville and John Stuart Mill to show 

that the need to balance fundamental rights is no 

new problem in democratic societies. As liberals, 

both staunchly believed in egalitarianism and 

majority rule, but they also saw that too great 

emphasis in this direction could threaten individual development. They went on to a concept 

of balance as one of the continuing needs in a 

democratic society. 

Dr. Confrey circulated a document (dated 

May 1, 1969) prepared by the Division of Research 

Grants, National Institutes of Health, entitled 

“Protection of the Individual as a Research Subject” which in seeking to maintain this balance 

in research conducted by the Public Health Service, 

relies veYy heavily on a local committee at 

an academic institution to stwdy the protocol 

of its research pvoject proposals to make 

cwtain that the rights and welfare of the individuals involved are adequately pvotected; 

thxzt theve is sufficient and propar attention 

to informed consent, and that the risks in 

the reseavch are outweighed by its benefits 

or the importance of the knowledge to be 

gained. 

The booklet states that acceptable assurance 

of compliance must cover the following: 

t~~~temmt Ofpinciples concaning the treatment of human subjects. ” 

Description of membership of the review 

committee, which “must be composed of sufficient members with varying backgrounds to 

assuve complete and adequate review of the 

research, ” and not include any persons who 

aye involved in the Yeseavch activity. 

~fDes~iption of the initial and continuing Yeview procedures to be followed by the committee.’t 

The position taken by the National Institutes 

of Health on the conduct of research attempts to 

9 
maintain balance. This has not been the case 

with all of those who have been warning the public 

that their privacy is being endangered by almost 

any research whatsoever. Balance is not being 

maintained when the proposal for a national data 

system is characterized as aiming to set up a 

great expensive garbage pail. (Dr. Berg interposed 

to say that McLuhan had called it “one big gossip 

column.”) 

Mr. Speiser was asked during the ensuing 

general discussion whether confidentiality could 

in fact always be maintained in court actions— 

whether, for example, data on narcotism obtained 

by a sociologist could be subpoenaed when one 

of his respondents was accused of a criminal act. 

He replied that this would depend on the law of 

the particular State. The common law recognizes 

only two confidential relationships—between husband and wife, and between attorney and client. 

Most States now include doctor and patient, while 

some add religious leaders and their communicants, or newspaper reporters and their informants. Information collected for statistical purposes certainly can be subpoenaed: 

A judge may be willing to quash a subpoena 

because he has the right to do so and concludes that vavious social interests would be 

bettev se-rued in that way, tit confidentiality 

is not othwwise protected from subpoena in 

the absence of a specific statute. 

Mr. Speiser did not feel able to decide whether 

a researcher might be subject to a damage suit if 

he divulged confidential information under subpoena. He felt, however, that the case would not 

be likely to arise; the researcher might be pushed 

by a subpoena threat, but not to the final point of 

its being issued. So too with priests; they are not 

likely to be required to disclose what they hear 

during confessions, even in States where they have 

not been granted the confidentiality privilege. 

Mr. Woolsey wondered whether the legal compulsion to answer census questions had not been a 

good thing so far as the public is concerned. “The 

questions certainly get far more public scrutiny, 

and Census has been more careful in the questions 

that are asked.” But what of the thousands of 

purely statistical investigations where there is no 

compulsion to reply? 

What does informed consent mean in these 

sitzuztions? Is it enough simply not to say 

that the information is required by law? Some 

say you mwst definitely tell the respondent 

that his response is not requived. If we do not 

say this in so many words, I think most statisticians would agree that they get a large 

enowgh degree of response to make the results valid; but what would happen to the olztn 

if we made a specific statement of nonrequirement? Would the information become 

essentially unusable? 

Mr. Speiser replied that the Iaw on consent is 

currently being spelled out by the Supreme Court 

in the criminal law field. After years of battling, 

in the famous Miranda case the Court helc 

thatthe police had to state, you have the right 

to remain silent; anything you say can be usei 

against you; you have the vight to have an 

attorney; if you cannot aflord an attorney, one 

will be provided for you; and you can sto,b 

answering questions any time you want to. 

Mr. Speiser felt that only research could determine the consequences that would flow from com ­

plete candor in the case of statistical studie:i, 

Dr. Hauser stated that, although he recogniz~ d 

that the American Civil Liberties Union is an e::­

sential part of our society—’ ‘we need this kind >f 

watch dog’‘—like any person or organization it 

can go too far. “I too think the key word is balance.” We are not acting in a balanced way if we 

try to handle 20th century problems with 18th x 

19th century ideas. “This is to ignore the context 

in which the problem arise s.” By applying 1F,th 

century guarantees and limitations, perfectly reasonable in their time, to organized crime in the 

20th century, the United States has made itsslf 

incapable of protecting itself against its deprecations. A mass society needs to recognize ha sic 

rights possessed by the collectivity —includ ing 

security—which are of equaI importance with che 

individual rights emphasized by our Constitution: 

We must weigh the welfare of the puldic 

against the priwcy of the individual. He can 

be fully protected so far as statistics are 

concerned by the confidentiality requirement. 

10 
Mr. Speiser replied, “I don~t think you are running with the tide there. ” 

I think you are bound to be a loser on that. 

The Bureau of the Census could vevy easily 

head off a great deal of criticism and save 

some of the time spent in defending itself by 

providing bettev justification fovasking questions rather than basing its argument solely 

on confidentiality. 

Dr. Klarman doubted that the concept of balance 

in the end would prove very helpful: 

Implicit in the notion of balance is the assumption that ultimately there is a havmony 

of interest among the objectives of the parties. But there is the possibility that they 

may be in real conJlict. In that event balance 

offers no satisfactory solution. Much better 

is the ndion of bade-offs. To what questions 

must we have the answers? What questions 

can we give up? To what questions can answers be obtained by other mechanisms? FOY 

example, perhaps we should require everyone to file an income tux vetw+n, and stop 

tvyinr to include income reporting in the 

census. 

Dr. Dunn proposed a double set of files: one 

consisting of the statistical data, the other relating 

these data to their sources—individuals, firms, 

or whatever, This second file would be put under 

ironclad controls. Dr. Berg noted that the District 

of Columbia United Planning Organization has 

established just this dual system. There is one file 

containing only the names of respondents, with 

their identity numbers, while the second file, arranged by these numbers (and without the names), 

contains the statistical information. Mr. Speiser 

had briefly described this system, but now observed that “ironclad controls” are impossible— 

“you cannot guarantee that the system will never 

be broken.” Nor can you guarantee that the system 

can be used only for statistical purposes, as opposed to surveillance uses. You cannot guarantee 

that the key code will not be subject to subpoena. 

Nor can safety be guaranteed against blackmail. 

Dr. Iiauser suggested a solution through use 

of a triple system. Let the ability to open the 

system at all be located at some place in the Executive Office of the President, possibly in the 

Office of Statistical Policy. Here only would 

the key be located. IlThe president can resist subpoena, and he can resist Congressional pressure 

under the check and balances ystem. ” Information 

would be located in machine readable form in the 

statistical system, separate both from the list of 

information sources and from the key which enables these two to be united with each other. 

This kind of system ha been working fov 

yeavs in other contexts. Here it would be 

fimther protected by the separation ofpowers, 

and by the fact that the statistics are stored 

only in machine-veadable form. 

In further discussion, Dr. Hauser suggested that 

data might be submitted in sealed envelopes, with 

personal identification appearing only on the envelope itself. The system identification number for 

that person is put on the envelope, which is destined for secret storage. The enclosed data, with 

the system identification number added to it, 

enters the statistical file. Such a process would 

make personal identification extremely difficult. 

With respect to the Current Population Survey, 

maintained by Census without the compulsory provision, response is much higher than for private 

collection agencies. Of course most of the public 

assumes they must answer these questions, since 

they come from the Bureau of the Census. Recently, because of the publicity, nonresponse has 

increased somewhat for the Current Population 

Survey, and considerably for some private surveyors. 

It was noted that all the Census questions should 

be on a comparable basis, so that they can be 

related statistically to each other. Methods should 

not be mixed needlessly. It also was pointed out 

that Census has had to invoke its compulsory 

powers only very infrequently. Mr. Reed stated 

that about 80 persons had been prosecuted for nonresponse on each of the last two United Kingdom 

censuses, with convictions secured in all cases. 

The penalty ran from about two to a maximum of 

10 pounds. Incidentally, birth and death records in 

Britain in no way are confidential documents: 

Anybody who knows the name and date of birth 

of anybody born in England ov Wales can dis -

cover whether ov not he was ille~”timate, 

whethev he was adopted. He cannot discover 

who his natwal parents weve; that is confidential by statute. 

11

General browsing in the records usually is not 

allowed, although even permission to do this sometimes is obtained by researchers. 

Mr. Reed suggested that “Surely there is a 

real difference between asking a person what his 

religion is and interfering with his religion. And 

so too with race.” Some conferees doubted this. 

He also thought that the data-collection agency 

might be made responsible, not to the executive, 

but to the legislature. “The press also could make 

a good trustee.” Other suggestions of an overseeing group mentioned in the discussion were a 

general control commission and professional 

association. 

In France, Dr. Guidevaux noted, only routine 

information on the population is compulsory, including recently a few cultural and educational 

questions. On deaths, only the legal registration 

of death is compulsor~ the physician may entirely 

omit the cause of death. At the central agency in 

Paris there is no way of linking a cause of death 

to an individual patient; if reported, it is on a separate document. 

In Yugoslavia, Dr. Pirc testified, all routine 

birth and death data can be obtained from the local 

registrars. Whatever questions are asked in a 

given year must be answered. 

In Scandinavia, Dr. Krohn stated, the whole 

question is not considered important; open access 

to records has never led to any trouble. Only detailed medical information is confidential. Yet 

copies of certificates including the cause of death 

are fairly freely available. Scandinavian countries 

have a unique registration number for each individual which goes on every record pertaining to 

him. 

Dr. Berg stated that the Gallup organization has 

found quite uniform refusal rates of about 5 to 7 

percent irrespective of country, in spite of the 

many differences in the availability of governmentally gathered data. 

It was suggested that statisticians should find 

out in what degree lack of compulsion in answering 

affects the data. 

Issues in Confidentiality of 

information and Ways of Avoiding 

Breaches of Confidentiality 

PRESENTATION BY DR. TAEUBER 

Dr. Taeuber focused discussion on information collected by the Federal Government for 

statistical purposes. Whether the information is 

obtained on a voluntary or mandatory basis, the 

collectors invariably seek to prevent misuse of 

the data, by themselves as well as by others. Only 

persons specifically entitled to handle the source 

documents are permitted to do so, and disclosure 

analysis guarantees that published compilations 

do not directly or indirectly reveal individual 

information. 

Replies to our decennial census are mandatory, 

while the Current Population Survey is largely 

conducted without the power to compel a reply. 

In both cases the same confidentiality and privacy 

provisions apply. Thus with respect to the latter, 

Every proposed new inquiry is subjected to 

carefil consideration from the point of view 

of essentiality, as well as the possibility that 

the query would be considered as an imjiroper 

invasion of individwl privacy by a significant 

numbev of people. Collecting information on 

possible public reaction is an important part 

of any pretest. 

The provisions against disclosure of individual infonna tion make no distinction between 

gvodand badwses, nor do they gz”vethe Divector of the Bweau the option of deciding that a 

piece of information might be wed to the advantage of the individual and, therefore, may 

be released to a third party without the prior 

written authorization of the individtuzl concerned. 

12 
The Bureau of the Census hasestablishedspecial safety criteria that allow it to maintain confidentiality while making special tabulations based 

on Current Population Survey returns. When computer tapes or punchcards are made available at 

locations away from the Bureau’s headquarters, 

they remain in the custody of Census employees, 

even though names and addresses are not included, 

so that inadvertent disclosures do not ensue. 

After other records have been matched with 

Census information these records cannot be returned to their sources, since unusual items on 

them might provide a basis for recognizing individuals to whom specific census information applied. Under the Census law, even the address of 

an individual which was received in connection 

with the Bureau of the Census activity must be 

treated as confidential. 

Identifying information in censuses dating 

from 1900 and thereafter is never released to the 

public. This sometimes irks genealogists. 

As the time for taking a census approaches, 

special care is taken to let the public know that 

Census schedules are kept fully confidential. 

Thus a Presidential Proclamation in 1960 assured 

the public that “There need be no fear that disclosure will be made regarding any individual 

person or his affairs.” In greater detail: 

Individual information collected in the Eighteenth Decennial Censws will not be used for 

pu@oses of taxation, investigation ov regulations, or in connection with military OYjury 

service, the enforcement of school attendance, 

the regulation of immigration, or the enforcement ofany individual State ov local law OY 

ordinance. 

Census has supported its confidentiality provisions by resisting subpoena in court actions. In 

1962 Congress amended Title 13 of the United 

States Code when a Supreme Court decision concluded that a business firm’s file copies of its 

replies to a Census questionnaire were not subject to the same confidentiality treatment as the 

original filed with Census. As a result they now 

have the same confidentiality status as the original 

questionnaires. 

In concluding his paper, Dr. Taeuber stated 

that “the statistical system needs both the fact 

and the image of treating individual information 

as confidential. ” 

Discussion 

The assigned discussant was Dr. Sagen. He 

found the confidentiality-privacy problem simple 

only on the surface. “Informed consent” for example is a nice phrase, but what does it really 

mean? Again, how do we balance the right to privacy against the right to know? In Missouri the 

St. Louis Post-Dispatch got State legislation making birth and death records completely open to 

publication, much to the chagrin of registration 

people. New York State has printed a release form 

on the back of its birth certificates. The Tobacco 

Institute has been challenging survey findings 

about cigarette smoking, and may want to inspect 

the basic records. Photographers try to get the 

names and addresses of all births in their areas, 

and the records can usually be obtained in local 

vital registration offices, even though they cannot 

be obtained from the State registrar. 

Perhaps, Dr. Sagen concluded, we should have 

two vital documents for each kind of event: a legal 

document of record, and a statistical document 

including whatever information we think we need. 

Or 

We could develop some direct way, by taking 

advantage of computw technology, for reporting the health information and the confidential 

infomationfiom hospitals or doctors directly 

to the appropriate statistical agencies. This 

would have othar merits besides preventing 

breaches of confidentiality. 

In the general discussion, Mr. Reed saw problems in setting up two birth certificates. As an 

example, the names of the parents certainly would 

be needed on the legal document, but this immediately identifies illegitimacy and adoption. 

Dr. Sagen strongly advised that consideration 

be given to keeping jurisdiction over bodies of 

data decentralized while developing linkages between the data. Those who are collecting the information have the best knowledge of its reliability 

and the best understanding as to what data can be 

released. It would be a virtual impossibility for 

some super-agency to make good decisions of 

13 
these kinds over the entire data spectrum. It 

should not be imagined that local jurisdictions 

are incapable of maintaining confidentiality. In 

New York City for something like 25 years only 

an official civil servant is entitled to know what 

cause of death appears on any particular death 

certificate. Insurance companies have challenged 

this policy a number of times, but always without 

success. In discussion, it came out that the policy 

originated in an effort to improve the reporting 

of deaths from alcoholism, venereal disease, 

et cetera. There was little evidence of improvement, except temporarily. 

Dr. Sagen doubted that the National Center 

should confine itself to information collected by 

its own mechanisms. “Should we not also take 

advantage of hospital records and other information collected for special purposes?” He also 

thought that public policy on safeguards against 

the invasion of individual privacy should be accommodated to the public interest, particularly 

research which benefits all. 

In the ensuing general discussion, skepticism 

was voiced by Dr. Lee as to the wisdom of trusting 

to decentralization as a protection of confidentiality. Too many people with low confidentiality y 

standards would be involved. Dr. Berg observed 

that two different kinds of problems are involved; 

unauthorized use of a whole set of records is comparatively easy, but finding records for particular 

individuals can be extremely difficult unless you 

know the exact jurisdiction. 

Mr. Woolsey has found that unexpected difficulties arise in attempting to protect individuals 

while also serving the public interest. Thus after 

the National Center had carried out the difficult 

process of setting up a list of all the country~s 

inpatient establishments to be used as a sampling 

frame for studies of the patients and the establishments, many—including some of the establishments—thought the Center should make the list 

public. They were being harrassed by others who 

were also setting up lists. At first it was felt that 

the Center could not publish even the names and 

addresses of the establishments, since doing so 

would violate the confidentiality assurance that 

appeared on the questionnaire. This aroused so 

much criticism that the questionnaire was divided 

into two parts. The public part gave the name and 

address of the establishment and certain identifying information such as number of beds, avera};e 

patient load, et cetera. The confidential part il(­

cluded such items as policies regarding admis ­

sion of certain types of patient, the racial composition of patients and others. 

Dr. Linder questioned the wisdom of this decision: 

As soon as an agency has diffevent sets of 

records, some of which aye confidential and 

some of which ave not, the pvinciple that the 

agency is operating under s tvict confidentiality is eroded. You cannot expect the public to differentiate cleavly between what will 

happen to ptxrticula~ pieces of paper. I think 

the Federal agencies are in their present difj?culties because they created this problem by 

not taking a clear and categorical position on 

the question of confidentiality. 

With respect to the nursing homes, it would 

not be enough to publish the names and addresses. To get a usefil list, you need to add 

something about the kind of place it is. Immediately you reveal charactwistics of the 

p.lute that the establishments may not wish to 

have revealed, in ~elation say to income tax 

mattezs or civil rights procedures. 

Within the Fedeyal Government, when I was 

Divectov of the National Center for Health 

Statistics, we got vwy inadequate support 

from the Budget Bureau about maintaining a 

policy of confidentiality. I think the problems 

that have arisen were brought about by the 

lack of a clear policy position on the part of 

Fedeval agencies with regavd to material 

collected for statistical purposes. 

Dr. Crosby stated that the American Hospital 

Association releases its list of some 50,000 hospital trustees only by explicit permission of its 

own Board of Trustees. The American Medical 

Association has sold its list of physicians to a 

commercial concern, and gets a royalty whenever 

that concern sells the list to one of its customers. 

Their list is quite accurate, and includes such information as whether this is a foreign practitioner, 

et cetera. 
I 

In reply to a question, it was stated that the 

Center probably receives more adverse reactions 

from its followback studies than from its surveys. 

The problem arises most often from death-certificate followbacks, and almost invariably because 

it looks as if the Center was probing into a private 

matter: “Why are you bringing up this painful 

thing?” 

In response to another question, it came out 

that there is no place where one can discover the 

practices of various jurisdictions with respect to 

confidentiality y. This might well be a study on which 

State registrars could help. The need is more for 

a summary of actual practices than for a statement of standards or goals. 

Dr. Krohn observed that statistical information 

should not be so separated from the basic sources 

as to prohibit its undergoing correction when 

that is necessary. Dr. Guidevaux found this a regrettable feature of the French arrangement because it is not easy to query the doctor on an obviously inaccurate or incomplete diagnosis of 

cause of death. Perhaps the French physician 

would be more interested in giving the correct 

cause of death if he could obtain, sufficiently 

rapidly, useful data that helps him in his work. 

Mr. Woolsey commented that the discussion 

confirmed the judgment that the treatment of vital 

records in the United States is in a pretty bad 

mess: 

I think it would beappvopriatefov the National 

Committee either to appoint a subcommittee 

itself or at least urge some othev group-possibly the Public Health Conference on Recovds 

and Statistics— to tuke steps to investigate 

this question thoroughly to see if we cannot 

bring about some change and gveatev uniformity in the treatment of vital records in this 

country. 

Mr. Woolsey himself favored a clear separation of the legal certification of vital facts from all 

other information concerning these events, which 

should be kept confidential and used for statistical 

purposes only. Perhaps there should also be a 

public body to decide when proposed research 

uses warrant the revealing of names for particular 

research purposes. 

We are a long way from being able to implement any such pvoposal. The system is under 

the control of the States, and so far as health 

statistics ave concerned, the Center will not 

release names without their permission. 

Regrettable also is the dearth of investigations 

into the reliability of the information as to causes 

of death. “It is shameful that a 1936 study by 

Bellows should still be our source on the reliability of deaths from venereal diseases.” 

Dr. Berg saw a need to record present views 

on the privacy of the individual and the confidentiality of information concerning him, as likewise 

directions of change. In the area of legitimacy, for 

example, there have been recent impressive 

changes, which have gone even further in some 

countries than in the United States. We can ourselves do something toward assisting in the development of a clearer and sounder doctrine of 

individual privacy: 

I suppose what many of us have urged during 

the meeting is that there be a little move inventiveness and experimentation in probing 

the boundaries of the privacy concept, in uncovering what the needs of the public are, and 

infinding out what the public will accept in developing public information in the light of the 

vights of the individual. 

15 
FUTURE NEEDS


Three sessions, chaired by Dr. Dyar, were given over to consideration of future needs in health statistics, health services resources and 

utilization data, and demographic statistics. 

Needs in Health Statistics 

PRESENTATIC)N BY DR. LINDER 

Dr. Linder did not try to give a full catalog of 

future needs for health data, as being both impossible and of little use, since neither the resources 

nor the ability of the statistical agencies could 

encompass all that is needed. Nor did he, really, 

have any suggestions as to what “the big thing” 

ought to be for the 1970’s. In thinking about that, 

he had concluded that the health statisticians “have 

a hangup on a few words. Maybe we ought to try to 

get rid of that first. ” 

Small area statistics. —This is a vacant umbrella term. The needs are different from one area 

to another, and “the ability of the health organization in most small areas is not up to using much 

in the way of small area statistics. ” 

Family statistics. — llAs soon as you get ‘our 

or five people in a family you get too many variables. The data break down into a multitude of 

pieces too small for analysis.” 

Lon@”tudinal studies. — Ignoring that they are 

costly and difficult, !!Only a narrow and very %Iecial group of studies requires the longitudinal 

approach. ” Further, 

Like family studies, longitudinal stwdies are 

hard to analyze. I do not think stutisticiuns 

know how to analyze them. You get a tangled 

skein of individual histories that weave in 

and out of diffevent classification categories, 

so that we end up analyzing cvoss-sectional 

cwts acvoss an observed population. Such 

problems are not solved by using a computer. 

I am thinking of the mentul limitation of comprehending a thousand different lo~”tudinal 

histories weaving in and out of a dozen or 

more categories. 

I 

I 

Record linkage and data- bank solutions. —This 

is probably the most popular hangup. There is no 

argument that science proceeds by relating specific variables, whether for descriptive studies, 

analytic studies, or to draw cause-and effect inferences. If the variables you want to relate happen to be on different pieces of paper, obviously 

you should link the pieces of paper. But largescale data banks are the very antithesis of this 

simple idea of relating specific variables: 

How much automatic, elaboyate, routine machinery is it wm%hwhile to set up to permit 

you to interrelate vanizbles collected for different purposes under disparate definitions 

and with widely vwyingdegrees of veliubility? 

There is no way of doing ready-made research. 

“Research depends on formulating a hypothesis 

and then collecting data aiming to prove or disprove or throw some light on that hypothesis.” 

Dr. Linder next considered some broad areas 

in health statistics where he felt more work wa~ 

needed. More attention should be paid to the fringw 

of frequency distributions, as has been done witlinfant and old age mortality. We need to look mor~ 

closely at the health of the poor, including hunger 

and malnutrition, but also at the other end of the 

scale. Perhaps the affluent are the ones who arc 

inflating the cost of medical care. We need alsc~ 

to pay more attention to the fringes of the behavior distribution: to the drug addicts, alcoholics, 

persons with mental diseases, and more generallj’ 

those on the fringes of social behavior. 

Multiple-cause anulysis is bound to receii e 

more attention. Although the new int ernationid 

list should help us to conduct multiple-cause ana ­

yses, the situation remains extremely complec 

16 
If you start your computer going with the first 

cause of death, cross-classified by the second 

cause and by age and sex, which is the minimum amount of data needed for even a superficial analysis, you end up with a mountain of 

papw. 

An individual can approach this mountain with a 

specific problem and pull out the few cells of information that relate to what is in his minx but 

what about the National Center? 

How is it gving to deliver the entire mass of 

material to the many $eople around the country who want to settle a multitude of specific 

questions ?Difficult methodological and conceptual problems are involved here. 

Another area that has been neglected is environmental statistics, as distinct from statistics 

based chiefly on political areas. 

None of the topics that Dr. Linder named impressed him as indicating the big thrust for the 

next 10 years. 

Dr. MacMahon told us yestaniay that the next 

quantum jump in health statistics might come 

from opening the social security recovds for 

epidemiological wses. That might be ~efil, 

but I do not think a quantum jump will come 

out of the moldy old paper that happens to be 

in somebody’s file. The next qwantwm jump 

will not come out of an opportunistic utilization of material that was gathered for some 

other pwpose. 

Dr. Linder then recommended that the present 

vital registration system be abandoned as a source 

of new statistics: 

I am not implying thut the vital statistics 

system should be abandoned for legal purposes, for identification purposes, for all of 

its civil purposes. But maybe it is time to 

abandon the vital statistics system as a statistical system, and see if we cannot think of 

something entirely new not connected with 

vital registration which will give us the kind 

of material we need, and more material th.zn 

we are now getting. 

Dr. Linder referred to earlier suggestions by 

Drs. Puffer and Hauser looking toward reforming 

the vital statistics system. He had almost convinced himself that this would be possible so 

far as births are concerned. In connection with 

deaths, the data may have to be collected on something like a 100-percent basis because of the need 

for information about rare causes of death. Yet 

even here the possibility of an entirely new system 

deserves full study. 

Dr. Linder next turned to the status of the 

health statistics organization within the governmental structure. When in 1946 vital statistics 

was transferred from the Bureau of the Census to 

the Public Health Service, opposition was voiced 

by the Director of the Census and by our colleague, Dr. Hauser. Their arguments were of two 

kinds. The first was that the numerators and 

denominators of death and birth rates should be in 

the same agency to guarantee uniform definitions 

of these elements. 

The second argument was really important. 

Should a statistical collection activity be located in 

the agency that also has programming and executive responsibilities in that area? “The Public 

Health Service has a vested interest in whether 

the statistics show, or do not show, that it is 

doing a good job.” Dr. Linder testified that over 

his 10 years as Director of the National Center 

for Health Statistics, 

The Public Health Service at no time attempted to influence the way we collected OUY 

data, or the kind of interpretzztion we gave to 

them. I cannot say quite as much for the Secretary’s office. There wewe times when they 

were a little unhappy with what the statistics 

ware saying. There were other times when 

there was some otiection to the timing of a 

publication. 

But, Dr. Linder continued, the possibility of 

being influenced “may have more reality in a more 

subtle way”: 

I have said many times that I did not cave as 

Divector of the National Centar whether the 

birth rate went down or the birth rate went 

up; I did not cave whether everyone in the 

country died or did not die. It uxzs merely my 

job to measure the rate at which they wet% 

doing these things. But the typical role of the 

statistician in the health agency is to be an 

attorney for the cause and for the program 

that the health agency is responsible for. 

17

Since it is almost unavoidable to take this position, a truly statistical agency should not be 

located in any departmental unit having program 

responsibilities; nor should it be located in the 

Office of Statistical Policy or elsewhere in the 

Executive Office of the President, “where it 

would be most exposed to political pressures.” It 

should be an independent agency, perhaps something like the Federal Reserve System, where it 

need not respond to a demand to produce information supporting any particular point of view, 

Finally, Dr. Linder emphasized the need for 

training health statisticians. The universities and 

schools of public health are not training health 

statisticians in the quantity or of the type that are 

needed. At the University of North Carolina where 

Dr. Linder teaches, substantial funds have been 

available for training biometricians. Now money 

is beginning to flow into training of population 

experts. But there is too little money going into 

the training of health statisticians. 

You can talk as much as you want about data 

systems for comprehensive health planning 

at the National and State and local levels, but 

the people wko might collect data to feed inti 

these systems simply do not exist in adequate 

numbens. The schools and programs for 

training these people do not exist, and will 

not exist until 10 years after .Wstuntial sums 

of money begin to jlow into training these 

kinds of people. 

Discussion 

The assigned discussant was Dr. Densen. He 

said that one might differ with Dr. Linder’s views 

in a few places, but the emphasis on the need to 

conceptualize problems was absolutely right. We 

need to focus, not on the data, not on the collection 

method by itself, but on adequately conceptualizing 

the fundamental statistical aspects of our problems. As an example of this need Dr. Densen 

cited the Medicaid program. It is a financing 

mechanism to provide funds for medical care of 

the indigent. It is an insurance mechanism that 

happens to have a denomimtor. But it is not so 

much a welfare program as a social program, and 

as such “conceptualization of the statistical re. 

quirement shouId be approached on the basis that 

it possesses certain epidemiological characteristics. ” We should be able to get information from 

Medicaid and Blue Cross of the kind that comes 

from New York’s Health Insurance Plan. Not 

always can they tell us how many people they have 

in their programs, as distinct from the number of 

contracts they have written. This also is true of 

most commercial insurance companies. Dr. 

Densen suggested that if the need to conceptualize 

problems was strongly emphasized, it would not 

be necessary to train people to be welfare statisticians, health statisticians, and so on. 

Again, in computerizing we need more conceptualization. One of the difficulties in health care 

programs is that people want to collect and crossclassify everything. “The computer can be very 

inflexible in some kinds of situations.” What information do we want? If you mix what administrators need to know on a day-to-day basis with 

what is needed for research, you get a complex 

statistical system that does not answer the research questions and interferes with the administrative questions. We need in fact to examine the 

nature of reporting systems as such: 

I httve my own bias toward collecting as little 

as I can get by with to run the system on a 

routine basis, and set things up flexibly so 

that it is easier to get additional data or muke 

changes in the statistical system when they 

are needed. 

There are even systems where the physicians 

must spend so much time on their records that il 

interferes with taking care of their patients; ancl. 

there is at least one jurisdiction in the Boston 

area where a pregnant woman mwt go to four dif ­

ferent addresses in filling out her financia 1 

eligibility forms. We need to think throughout in 

terms of the total system, in relation to all who 

are involved, including of course the research 

statistician. ttyou need a good system as well a$; 

good people to operate the system.” 

Dr. Densen had one question concerning Dr. 

Linder’s presentation. He had reason recently ti] 

go back to the Shattuck report and was struck IY7 

the fact that Shattuck strongly emphasizes the line 

between the statistics and service programs: 

18 
I can see your concern to attain objectivity. 

Pevhaps at the Fedeval level and even at 

State and local levels you need an agency 

with this characteristic. But if you get too 

fir away from the operating programs, you 

may be~”n to concern yourself with unrealistic things. At the local level pavticwlarly we 

need to relate our statistical activities to the 

service progvams of the community. We must 

not get ourselves into the position of thinking that we ave collecting statistics for theiv 

oum sake, especially in the health. field. If 

something is not done to relate the statistics 

to action directed to improving the health of 

the population, I fear greatly for the statistical profession. 

Take the statistics that the National Center 

is gathering on the country’s smoking habits. They 

show that a smaller proportion of the population 

is smoking and that the age at which people start 

smoking is changing. Can it be said that this 

has resulted from the activities of the Public 

Health Service and other health agencies? At 

present one cannot say this. But it is important 

that the question be studied. Or take infant mortality. This certainly is a field where we have lots 

of information; 

But in a situation where the Negro vate is 

say twice the white rate and you are supposed 

to do something, you ave stuck at the present 

time. Heve we may need to go to micvostatistics and follow up the individual circumstances that surround individual deaths. 

At the present time, as Dr. Linder noted, we 

do not have the statistical talent or know-how at 

the local level, We do have it at the National level 

and in the universities—not necessarily in the 

schools of public health. This talent should be made 

available in an effective way to operating agencies 

and communities. 

One place of quick return for a relatively 

small investment is in summer programs for college students. “It galls me to find that the Federal Government just will not put any money into 

this area.” 

In the general discussion, Dr. Hauser agreed 

that the Federal statistical system needs restructuring. He advocated “the equivalent of a central 

statistical agency in the government, removed 

from all departments and as part of the Office of 

the President.” Dr. Hauser also agreed with Dr. 

Linder’s strictures on training, but thought that 

this was a part of the general university situation 

in relation to Federal funds. “There has been too 

much Federal money for specific purposes with 

strings attached, whether contract or grant, that 

have distorted training programs.” 

With respect to small-area studies, family 

data, longitudinal studies and the data bank, Dr. 

Hauser agreed that some are using these techniques irresponsibly, but thought that this was not 

a good reason for throwing them away. Of course 

there are the difficulties that Dr. Linder emphasized; we need to address ourselves to their solution. For example, 

The type of analysis which demographers 

have developed in terms of the cohort analysis of fertility data is badly needed elsewhere and readily extensible to other forms 

of data. We need information that follows 

specific cohorts, not only with respect to 

their fertility experience bwt in rekztion to 

theiv educational experience, their entrance 

into the ?abov force and their vocational careers, and on down the line through health, 

welfare, and social security. 

“Our job is not to despair in the face of such problems, but to develop techniques for their analysis.” 

Mr. Woolsey found himseIf pleased that his 

long working career of arguing with Dr. Linder 

was not going to stop. On the question of small’ 

area data needs, he found the disagreement “really 

quite sharp.” 

To keep statistics from becoming dead, we 

have to keep them attuned to the problems of 

today. Today we just cannot overlook the 

need for data to delineate and overcome the 

problems of the cities. U we neglect these 

problems, we might as well forget about our 

statistical systems. They will never get the 

support of the Federal Government. 

So far as the vital statistics system is concerned, 

this means that we cannot go to a sample basis 

at the present time. Here we have one of the very 

few means for getting measures of health in the 

cities, including their ghettos and their disadvantaged peopIe. 

19 
It is true that a lot of poor work has been done 

in the area of family statistics. When we get into 

the health economics, where families are spending units, however, there is something that can 

be handled. 

Longitudinal studies are often engaged in needlessly, and they are undeniably difficult. But there 

are some questions that cannot be answered otherwise, as when one needs to discover the outcome 

of a certain course of events. 

On data banks, Mr. Woolsey was in full agreement with Dr. Linder and would go even further: 

The two basic defects of the data bank have 

nothing to do with confidentiality or the invasion of privacy. One is that it is a ve-ry inefficient way of producing and disseminating 

statistical information and is unfair as a 

means of disseminating the information. 

Some of the information will be controversial, and because of cost considerations, will 

be avuilable only to the well-heeled. 

The othev defect is that you would have to 

deoptimize the individual systems to get the 

degree of record linkage that is proposed. 

These systems weve designed to sene particu.?hvpurposes, for which theiv classifications wwe established. You would have to 

change this to get the recovds linked. 

With respect to training, Mr. Woolsey thought 

that most would agree that training in health statistics has been largely shaped by the influence 

of money from the National Institutes of Health 

(NIH). 

With respect to the location of a central health 

statistical agency—say the ‘Center—there are 

subtle problems connected with location in an 

agency with a mission. “Nevertheless, I think we 

have been relatively free from interference. ” 

Mr. Woolsey thought one should balance the quality and integrity of the data, which are extremely 

important, against responsiveness to the needs 

of users. 

I think we have become more rele?xznt since 

we have been located in the Public Health 

Service in the Department of Health, Education, and Welfare than we were before. Also 

in the experience of at least some of the 

countries, there have been seviows difficulties whare there wus a central statistical 

office. 

Dr. Dunn interpreted Dr. Linderts specific 

comments on small area statistics and so on as 

suggestions that we should take a good hard look 

at these things. He would agree; but to make a 

quantum jump over the next 10 years Dr. Dunn 

thought we should apply ourselves substantially 

to developing indices of health. There are, of 

course, indicators of pathological conditions. We 

also need to quantify wellness. The National Corn- I 

I

mittee took three study subcommittees to come 

up with the plan for the National Health Survey. I 

Two of its subcommittees tried to define wellness 

and never came up with an answer. Perhaps a third 

committee could do better. 

Dr. Klarman thought that the experience in reorganization of the Public Health Service over the 

last few years should serve as an object lesson. 

“Don’t change the machinery unless you know what 

you’re doing, and then hesitate.” 

He agreed that we need to conceptualize, but 

held that there can be great differences in where 

we can go when we engage in the process. Dr. ‘ 

Densen had stated that the basic problem statistically with respect to Medicaid lay in identifying 

the denominator. But the statistician also needs 

to know a great deal about the special, unique 

characteristics of the problem area and the institutional arrangements that make a difference. 

The number of people who tu?mout to veceive 

health services depends very mwch on local 

history, local tradition, what people are accustomed to getting, what ~overnment will 

@“vethem with some ease, and so on. When 

we get new notions of what are. people!s 

rights, we can get marked discontinuities. 

There was no basis fwr getting a good estimate of the size and ckzaractwistics of the 

population that umuld be wsing medicaid. 

When different people conceptualize, they may 

reach different concepts, Dr. Klarman concluded. 

Dr. Densen said that he would have a hard 

time disagreeing with that. But instead of discussing techniques and methodologies in general, 

he would prefer to sit down and talk over these 

different understandings. 

Mr. Reed found advantages in using the legal 

process of registration as a carrier of statistical 

information. Nevertheless the United Kingdom is 

experimenting with a medical register of births 

to be used to initiate medical services, which 

20 
will go to the medical officer in most areas, and 

then to the central statistical agency. This appears 

to be similar to what was being proposed at this 

conference. 

A strong school of thought in the United Kingdom favors an extension of medical record linkages, including such records as hospital inpatient 

records and first marriage and death records. 

At present the records would be linked only on 

demand. 

Mr. Reed felt that the statistical agency should 

be independent “to preserve its statistical virginit y against the politicians. ” 

Mrs. Shackelford commented that the American 

Association for Vital Records and Public Health 

Statistics well recognizes that the vital statistics 

system is in trouble. It does not meet the extra 

needs and demands that are being placed on it by 

the new health programs and the new concepts that 

have arisen over the last few years. 

A lot of us—and I identify myself with this 

group-feel that people are expecting to make 

more sophisticated uses of the vital datu 

without giving enough attention to maintaining the quality of the data, or to impvoving 

the quality and modernizing the system so it 

can move adequately serve today’s needs. 

Mrs. Shackelford added that the National Committee should “devote some attention to what we 

might call the plight of the vital statistics system 

in many of the States.” 

Dr. Pirc testified that there was a deterioration 

of the statistical activity in Yugoslavia when it 

was located in the central statistical agency. The 

health agency needs the statistical agency every 

day. 

Dr. Thompson felt pessimistic about developing 

strong health statistics training exclusively in a 

university setting. A university can teach mathematics and biology and other long-existing subjects, butnotproblem solving. And it is probably 

wrong to suppose it should try. “If you want to 

teach someone how to do something, the best way 

is to start them doing it.” Perhaps the training 

might involve both the university and a community 

hospital or other health agency. Students need to 

face real problems, and not the artificial, synthetic 

kinds of things they meet in schools of public 

health or medical schools. 

Dr. Baehr observed that some schools are beginning to concern themselves with demonstrations in medical care, using a population laboratory as a basis for training. These are open to 

physicians and others, including statisticians. 

Dr. Kiser noted that the National Committee 

has a subcommittee on vital statistics revision 

under the chairmanship of Dr. Lee. It has decided 

to start from scratch, taking all aspects of the 

existing system into account. 

In some final remarks, Dr. Linder stated that 

what he was recommending was a more critical 

examination of certain techniques that have almost 

become catchwords, and also a critical examination of the vital statistics system as a statistical 

collecting mechanism. 

If you want a horse and buggy, we have got a 

home and buggy, and I do not think you need 

to attach a jet enga”neonto it. I was saying, is 

that what we want at all? Can we depend any 

longw on this slow and outmoded and very restricted system that exists lazgely for legal 

puvposes? 

Needs in Health Services Resources 

and Utilization Data 

PRESENTATION BY DR. KLARMAN 

Dr. Klarman considered in turn data needed 

for internal management, research, and planning, 

steering a course between asking for everything 

and asking for too little. He did, however, lean 

toward restraint. He gave more attention to the 

data needed for planning, since needs in the other 

two areas are likely to be special and unique; 

neither problem lends itself at present to widespread data collection on a routine basis. 

For internal management one needs a budget 

in money terms and a program of operations expressed in inputs and outputs. At this point the 

latter are units of service, not end results. Departmental costs may be compared overtime; total 

expenditures with budgeted expenditures; average 

unit costs with those of other institutions; et cetera. 

Frequently data compiled by several institutions 

for internal management can be usefully combined. 

21 
Planning is an obvious ingredient of internal 

management so far as each single institution is 

concerned; but area-wide planning is not simply the 

sum of the plans of individual institutions. 

In research we have needs that may be distinct 

from those of management and planning: 

In reseavch, data needs are set by the pvoblem under study— by the hypotheses to be 

tested and the vaviables of a model that appeav to offer a plausible picture and explanation of real life behavior. Actually, howevev, data collected for management uses 

sometime serve as proxies fov the Yes eavch 

data needed. 

Research needs depend not only on the problem 

under investigation, but on the approach. Thus 

economists and political scientists are not likely 

to ask the same questions about a problem. 

There are two major problems in applied health 

services research today: 

These are the marked acceleration in medical care costs—perhaps expenditures would 

be the mwe pvecise term-ovw vecent 

years, and the urgent need to bring health 

care to the uvban poor. 

Many studies could be set down under each of these 

problems, but a listing of studies would not give us 

a listing of research data needs. In addition to the 

different questions that would be posed by the 

several disciplines, 

Datu needs aye specific not only to the problem and not only to the questions asked about 

it, but also to the particular model to be 

tested, which in twn depends in jxzrt on the 

findings of earlier research. 

Difficulties in specifying data needs multiply 

as research moves from the applied to more basic 

areas of concern. 

This would include most stwdies of the end 

results achieved from health services programs, as well as studies directed touxwd 

formufuting priorities between health and 

other social goals, as likewise between 

health services and other inputs for promoting bettev health. 

Dr. Klarman now turned to data for planning, 

where more generalization is feasible, and therefore more routine data collection. Here he proposed to apply the test of relevance: “If these 

data are collected, what are they good for? How 

would you use the data if you had them?” 

Typical planning reports in the health field 

include data on population size; age composition; 

births and deaths; a count of facilities and key 

health personnel; projections of population and requirements. Also likely to be included are usc 

data by location; per capita use of services; the 

population’s income and educational levels; anc 

(in recent years) its mortality and morbidity b} 

diagnostic category. 

Yet no explicit connections are drawn between the &tu and the policy recommetia ­

tions. The vary presentation of the dati is 

assumed to suggest their germaneness, a:: 

if the connection was self-evident. 

Dr. Klarman questioned whether all thest: 

data—” and more’ ‘—are needed in planning future 

health services. Before seeking to determine what 

data are required, we should dispose of three 

preliminaries: choosing a criterion for planning; 

arriving at a functional model of the health situation in the light of our criterion; taking account 

of the implications for planning of uncertain y concerning future population changes, preferences for 

services, and the supply of specialized factor:: 

of production. He discussed each of these matter$: 

in some detail. 

Choice of criteyion. — The need criterion i[: 

usually espoused by health planners, while economists generally favor the demand criterion, 

Health professionals assume that they know 

and can state with some precision what serv -

ices a population should have. It then remains only to surmount the financial barviet” 

to achieve the indicated types and volumes of 

services. 

Lee and Jones developed well-known techniques 

for translating pathological occurrences into 

quantities of services and for converting these 

into manhour requirements, which then are turn~ d 

into full-time equivalents in terms of the length 

of the work week. 

22 
The professional jwdgment is intended to reflect the biological needs of the population and 

the current technolo~”cal capabilities of medicine. It explicitly disvegwds economic factors and also takes no account of psychological auxweness or appreciation of the Mue 

of services. 

Among otkw consequences, it is implicitly 

assumed that health services can claim an 

absolute pvio~ity on resources; that they always combine in the same way with other 

semices to produce health; that the txwious 

resouvces combine to produce health services 

according to the personnel-to-population ratios; and that socioeconomic status has no 

bearing on the taste for or desirability of 

using health sevvices. 

In Dr. Klarman’s judgment these assumptions 

are questionable, and therefore “need is not a 

proper basis for health planning, so there is no 

point in meeting the data requirements it implies.” 

The demand for health service is a functional 

relationship between quantities of services supplied at certain prices, which may vary according 

to the prices of other products, incomes, and the 

tastes and preferences of the population as stemming from its demographic composition. “In the 

real world, however, purchasing power is not 

located only in consumers. Government too can 

manifest demand by deciding to pay for something.” The demand criterion is more realistic 

than the need criterion: 

The problems which ave overlooked by the 

criterion of need are the pvesence of socioeconomic factors in utilizing services and 

recognition of the diverse elements that enter into decisions. When government participates, these cm be kzken into account. 

Choice of an explanatory model. — In addition 

to a multitude of possible variations in use patterns, there can be many variations in the way 

services are provided, according to forms of 

organization, productivity, scale of operation, 

et cetera. Also possible are detailed differences in 

value judgments based, e.g., where equality is the 

goal, on equal access, equal use, or equal health 

status. 

This procedure, however, has one serious 

difficulty at least for the time being: 

In one area of hospital use wheve an effort 

has been made to compare the explanatory 

power of seveval models, it was found that 

the naive model which projects jwesent w-se 

accounts for the lavger fraction of total variance in utilization. 

Dr. Klarman’s conclusion from this analysis 

was that the most useful data for planning are: 

1.	 Rates of use by the several population 

categories under various conditions of 

financing and organizing the delivery of 

health services; and 

2.	 Projections of specialized facilities and 

manpower under explicitly stated alternative assumptions. 

He left specification of the population categories 

and resources to be projected for further discussion. 

In the hospital field, there is the further complication that the level of supply strongly influences the demand for services. “In the absence 

of any observed ill effect on health status, this 

means that almost any level of hospital supply 

within the known range is a valid level. “Perhaps 

here the appropriate basis for planning “is some 

measure of equality—equality of access to services or of use— within the particular community. ” 

The uncwtuin futuve,— Health service plans 

typically look 10 to 15 years ahead. A longer 

period would greatly increase the already considerable uncertainty. The chief difficulty is population size, especially as respects the small areas 

for which most health services are provided. Birth 

rates and migration patterns vary unexpectedly. 

Since more accurate projections can be made for 

large populations than, for small ones, where resources are mobile it might be advisable to project requirements and availabilities for the size 

of area that can be regarded as a single market. 

Planning areas will differ in size for various resources, being smaller for immobile ones, such 

as fixed facilities. On the average it is more economical to combine resources in an adaptable 

fashion, having facilities operate at a constant— 

23 
though higher—cost over a considerable range of 

output . 

It strikes me that for planning puYposes the 

foremost need may be a ahta bank of tested 

ideas in the jlexible use of vesouvces, given 

the uncer.$zinties surrounding projections of 

population, in medical technology, and in a 

populations desires fov health services. For 

this reason alone a comprehensive appvoach 

to health services organization is @eferable 

to a categorical one in which services are 

segregated. 

Discussion 

The assigned discussant, Dr. Anderson, agreed 

in general with Dr. Klarman. The bane of the 

health field is too much data. “We are victims of 

tremendous data-gathering machines and tend to 

be intellectually lazy and asphyxiated when it 

comes to design.” 

We have a variety of health delivery systems, 

in this country and abroad. They are all obviously 

functioning in some way or other, but we are barely 

at the beginning in finding out how they actually 

do work. We are still largely in the structural or 

static descriptive stage. We are far from achieving measurements of efficiency. “We cannot even 

decide what are outputs and what are inputs. Use 

is an output in some of our models, instead of 

end results. ” 

We are left studying such things as convenience, 

waiting time, equal access, and so on. “We do not 

know what proper use, or proper balance in uses, 

may be. “We can take various delivery systems 

and show what they cost, how convenient or inconvenient they are, and “very, very roughly” some 

of the quality levels. 

The health service system is, then, an end in 

itself. It relieves pain, veduces anxiety, and 

occasionally saves life. I really think this is 

a very sophisticated outlook. With backuzwd 

populations, you can change things by health 

services. The leading cause of death is an 

excellent measure of good health care. If it 

is heart disease, you ave getting good care. 

When the discussion was opened to the group, 

there was some consideration of utilization as a 

measure of health services. Dr. Sagen referred 

to the multinational study of health service utilization involving Finland, Poland, Yugoslavia, the 

United Kingdom, Argentina, three provinces in 

Canada, and two places in the United States, The 

study strengthens the view that we have no good 

notion of need. At best we have only data on the 

degree to which needs are perceived. Thus in 

Yugoslavia the rural agricultural population used 

the services less often, and yet when services 

were used they stayed for longer periods of time. 

Dr. Densen commented that this is true also in 

the United States. It has been suggested that some 

groups find it easier to stay in the hospital, 

since they do not have anybody to take care of them 

at home. 

Dr. Densen also held that a functional approach 

would prove helpful, in addition to morbidity and 

mortality ~‘An activity framework is needed. ” 

This was reinforced by Dr. Krohn: 

The disclosure of unmet needs is a very difficult pvoblem, especially in cities with old 

people–down to ingrown toenails that may 

lead to severe problems. Almost anything 

may come to light when a population is examined in some detail. 

Dr. Berg also thought there was need for a 

diagnosis of function, just as of disease. “We also 

need to understand how the public views dysfunctions—even doctors often have very different 

views.” 

Further discussion developed the thought that, 

while demand may be better than the need model, 

end results are also of some use. There is also 

a fourth possibility y—identification of problems 

and measuring degrees of result. It was also noted 

that the meeting had confined itself almost entirely to curative services, although they are only 

one part of the model. In addition there are environmental health services, nutrition, housing, 

employment, et cetera. “We need a model of all 

health services.” Mu. McNerney also mentioned 

the varying demands of the individual, the employer, the neighborhood, the country, and so on, 

And Dr. Pirc pointed out that demands can change 

overnight. In Yugoslavia, demand tripled after 

passage of an insurance law. 

24 
Needs in Demographic Statistics 

PRESENTATION BY DR. HAUSER 

Dr. Hauser confined himself to considering 

future needs for demographic statistics only 

insofar as the United States is concerned. 

Population totuls.-During the 1960-70 intercensal period current population estimates and 

projections for standard metropolitan statistical 

areas have been developed. These data will make 

it easier to apply what we know about the country 

as a whole to these areas. We also need similar 

information for much smaller areas, including 

subdivisions of cities and counties, and especially 

community areas, which often do not conform to 

political boundaries, 

Population chamctsristics, —We need similar 

information for such population characteristics 

as age, sex, color, and socioeconomic status 

(such things as income, education, occupation, 

social mobility). The education of decedents, for 

example, is a much better index of their socioeconomic level than their last year’s income. 

Fertility measwres. —There will be a new 

baby boom in the immediate future as our postwar 

babies increasingly enter their rewoductive 

years. 

It would have begun earlier except that age 

at mam+age and age of having afirst child increased. I think this is because our pvesent 

young cohorts are learning that OUYsociety 

and economy are just not able to change rapidly enough-in this case expand-to accommodate to the changes in the reproductive 

pattern of the population. 

Yet the fact that the number of women between 20 

and 30 years of age will increase about 35 percent 

within a seven- or eight-year period is certain to 

bring a new tidal wave of babies as an echo of the 

postwar baby boom. 

Hence there is an urgent need for cohort data 

with respect to marriage, childbearing, childspacing, and attitudinal data to throw light on 

what actually is going on and the motivations and 

incentives that are involved. This means that we 

need the equivalent of the Growth of American 

Family studies on an annual basis. We need to be 

kept up to date concerning knowledge, attitudes, 

and practices with respect to family formation. 

What we need are parallel period and cohort 

fertility data, including nuptiality rates and fertility by parity and age. 

In a recent bookl published by the University 

of Michigan, Dr. NGman Ryder has constructed 

a complete bridge between period and cohort 

fertility. He found for the United States over recent decades that about two-fifths of the variation 

in period fertility was accounted for by the tempo 

of fertility as distinct from the quantity of fertilit y—that is by age at marriage and age of 

childbearing, rather than by changes in the number 

of children ever born. Thus tempo of fertility 

is an important component of population projections and should be regularly measured. 

Also needed is the kind of information that 

can be obtained from pregnancy histories. 

Mortality and morbidity. —For worthwhile 

reductions in mortality in the United States from 

now on, we are going to have to depend much more 

on what Dr. Hauser called socioeconomic epidemiology rather than on biomedical epidemiology. 

The differentials in movtality by socioeconomic status within the United States are 

tremendous. Thus for 1960, 29 parcent of all 

female mortality in the United States would 

be defined as excess, using the female population having one or more years of college 

education as a socioeconomic index. The excess is about 9 percent for males. 

Some of the differentials by cause are quite 

startling, being of the order of 100 percent. 

In mortality as in fertility we need cohort 

measures completely paralleling period measures.’ 

It is going to be increasingly meaning& to 

think in terms of cohort experience, and this 

too not merely in terms of the kinds of pwiod 

measurements we now have. This will be 

true, fov example, with respect to new biomedical developments, as with the antibiotics 

and estrogens. In fertility planning, cohort 

experience may be required to understand the 

impact of some modern. therapies over time. 

lBehrman, S. J., Corsa, L., Jr., and Freedman, R. (editors): 

Fertility and Family Planning:A World View. Ann Arbor, University of hiichigan Press. 1969. 

25 
Intevnd migration. —Needed will be current 

estimates or components of all the recommended 

estimates of total population including small 

areas and even their subareas. 

Marriage and divorce. —The United States is 

far behind the rest of the developed world in 

marriage and divorce statistics. Improvement of 

the statistics in these areas would also help to 

improve fertility statistics. We need information 

on the duration of marriages by the number of the 

marriage, in view of our current “chronological 

polygyny and polyandry.” 

Family statistics. —The household statistics 

now available in the United States are primitive 

and unprecise. The annual estimates “wiggle,” 

demonstrating that the data are unstable. 

The family is an analytical unit for fertility 

analysis, mortality analysis, and tibov force 

analysis. I think the family as a unit within 

the next 10 or 15 years will be as important 

as the individual in statistical analysis. The 

jizmily-cycle information pioneered by Glick 

is now a skmdard apparatus. 

Here as everywhere in social analysis, longitudinal analysis should accompany period analy ­

sis. 

Mechanisms for achieving these goals.— TO 

get the statistics we need, among other things we 

must find ways of conducting the sorts of studies 

that Dr. Linder questioned—studies of small 

areas, family statistics, longitudinal studies, and 

linking records by data banks. Dr. Hauser agreed 

that Dr. Linder’s criticism of the techniques now 

available was well-founded. He also agreed with 

Mr. Woolsey’s criticism of data banks as he had 

described them. 

I could not agyee move with Ted’s objections—and even emotional objections—to duta 

lnznks. But I think this Confewnce has illustrated that we keep using the same words with 

quite different images in our minds. In my 

ctiatabank, I would not put everything onto the 

tape and then link everything with ewzrything. 

You would link those things for which you have 

a concept, a use, and a pwrpose. Even a 

multipurpose agency shoidd never get information for its own sake. It gets duta with explicit or implicit uses in mind. 

Linkages of already existing well-established 

systems—census, social security, internal revenue, NCHS—would greatly expand our statistical 

stores. The quinquennial census would also be 

helpful. In addition, Dr. Hauser revived a proposal for an annual sample census that he had 

made in 1941. It should lx of adequate size to 

permit estimates for regions and possibly the 

metropolitan areas “and so on. ” Already ‘the 

Office of Economic Opportunity has furnished resources that have enabled the census greatly to 

enrich its current population survey sample. 

There could be a series of sample surveys 

which are rotated during the course of the 

year, giving current information with the 

sample thickened OY thinned as needed to 

handle current needs. A rotating sample 

giving local area information could be pooled 

to j.wnish annual statistics, much on the 

ordw of the National Health Survey sample. 

Discussion 

Dr. Lee, the assigned discussant, indicated 

that, striking evidence of the awkwardness of the 

vital statist ics system can be seen in the fast 

that the study of socioeconomic differentials in 

mortality that Dr. Hauser has been working on 

will not be published until 1970 (through no fault 

of his own) although it is based on 1960 data. A 

quinquennial census, although not yet achieved, 

was first proposed by U.S. Grant nearly a hundred years ago. “Both the vital statistics system 

and the census system in this country, though 

admirable in so many respects are antiquated. ” 

It is a shame thatthese two activities are so 

far away from each other. Since we cannot 

possibly foresee all the needs for dati which 

will come over the next few decades—the 

political changes, ctinges in welfare and in 

population movements, for example—what we 

must tYy to work toward is a joint system of 

data collection. Perhaps the two activities 

need not be in the same agency. 

Even today we do not really have a continuing 

Census organization, although we do have continuity in the higher ranks. Every 10 years we hire 

another bunch of amateurs to do the basic work. 

26 
We do not really need to collect everything 

I on a routine basis, much less tabulate or publish 

everything. There are some basic variables which 

I are absolutely essential for almost any kind of 

analysis. 

I	 You could almost say that age, sex, and in 

our country race, are aluwys important, along 

with some good measuve of socioeconomic 

status, prefeva My education. 

For these we need a large sample, though not 

necessarily 100 percent, taken at quite vegulav intervals. Then we need to be able to 

choose a smaller sample from our list of respondents, to which we can put additional questions skaped in terms of immediately present 

needs. 

We also need a vital statistics system which 

can be referred back to vevy quickly for 

fuvther data. We do not need a wzstamount of 

official data, but the ability to query the 

family, say, in which the event occurred. To 

do this will require a considwable vestvuc ­

twm”ngofthe vital statistics collection system, 

which should be undertaken in collaboration 

or cooperation with, or simultaneously with 

the census changes I have described. 

For a particular reason, for example, we might 

on one occasion collect considerably more information on every Aleut birth, and yet be content 

with, say, a 1-percent sample of other parts of 

the population. To get such a system and make it 

work, both a considerable decentralization of our 

census and vital statistics programs would be 

needed, along with a considerable central coordination. 

Dr. Puffer endorsed the importance of paying 

more attention to multiple causes as a means of 

I modernizing mortality statistics. She described 

a 12-city international research on mortality 

(	 which shows that additional information from 

hospital and autopsy records when combined with 

clinical data enables more precise definition of 

the cause of death. In another international study 

of the mortality of children under five years of 

age, in certain countries where nutritional deficiency was identified as the underlying cause 

of death in about 10 percent of the deaths, it was 

named as an associated cause in from 40 to 70 

percent of the deaths. 

Dr. Puffer was certain that modernization of 

the mortality statistics would provide important 

contributions to epidemiological studies of diseases, to knowledge of health conditions, and to 

our understanding of the bearing of socioeconomic 

factors on health. 

Dr. Linder noted that he was “not too far apart 

from Dr. Hauser on one point, ” once a matter 

of definition is straightened out. His own skepticism as to the value of longitudinal studies 

applied to the followup of specific individuals, and 

not to the broader study of a group or “cohort” 

of individuals over time. 

The need to pin ourselves down in communication certainly applies in the data bank area. 

Dr. Hauser had said that he wanted a data bank 

serving only specifically defined purposes, but 

Dr. Linder thought his example implied a vast 

multipurpose collection of data: 

I was agreeing with him wholeheartedly, and 

then his example unconvinced me. Into his 

data bank he was going to put the census 

(200,000, 000 records); social security ckzta 

(say 100,000,000 records); the intevnul revenue documentation (80, 000,000, vecovds, I 

would guess); and then he would add the Health 

Interview Survey. Out of all these recovds, 

he said we could get, for example,some better estimates of small a~ea statistics and 

some information on internal migration. If 

you ave aftev this, do not bothev with the 

Health Interview Survey— there is nothing 

there with any bearing on this subject. Is 

there Yeally much that you could pull out in 

all the othw recovds on these two matters? 

27 
Contrast this with his other example of a continuous rotuting, expanding-contracting, jlexible sample to ~“ve information on metropolitan areas. One (the data bank) is an enoYmous thing involving hundreds of millions of 

records, from which it is doubtbl that you 

could get much worthwhile. The other is a 

jlexible tool, an expanding tool that can be 

redesigned for one problem this year and for 

another pvo blem next year. This illustrates 

the kind of direct, shaYp, and refined tool 

thut statisticians should work for. 

Dr. Hauser later replied that he had had samples of the various sorts of records he had named 

in mind, and not the entire files. 

Mr. Woolsey agreed with Dr. Linder, and gave 

an illustration of the problems that would arise 

from merging bodies of information collected for 

different purposes. 

When the question of a Federal duta bank 

avose, we ware asked whethw it umuld not 

be wondeyfil to link the information on disability obtained from the health interview 

with what social security gets. The pvoblem 

is that the definitions are not the same, and 

for a very good reason. In the case of SOcial 

security the definition was established bylaw, 

and is extremely complicated. I would defy 

anyone to take that definition and try to cavry 

it out in an intevview suvvey. It could not be 

done. 

Mr. Woolsey went on to say that while he was 

opposed to open-ended record-linkage arrangements, where masses of records are put into a 

system for all kinds of potential uses, he felt very 

differently about closed-end record-linkage arrangements, where information from different 

sets of records is combined because specific objectives have been set up. An example would be 

linking infant birth records with infant death records. ‘‘That’s another matter entirely, and can 

produce valuable data.” 

Mr. Woolsey agreed with Dr. Lee that the vital 

registration system would have to be extensively 

revamped to use it regularly in followback studies. 

“It’s a very clumsy tool because it takes so long 

to get the results out. And of course our samples 

have been very small.” 

Dr. Densen expressed the view that big area 

people had been talking about small area statistics 

at this Conference. When various parts of the Public Health Service had conducted local area 

studies, they were not viable mechanism s.’ ‘Their 

average life span has been pretty short.” 

The kinds of thing they tvied to gather in the 

small areas were not sufficiently related to 

the problems of the areas. If we are interested in demographic questions arising in 

small areas, we should associate them with 

pvogram questions. 

Dr. Densen also was interested in the relationship between the National Health Survey and 

small area information. He felt, for example, 

that reasonably good estimates of the proportion 

of the population covered by health insurance in 

a small area could be obtained by adjusting the 

National Health Survey data in terms of the agesex composition of the small area. Are there any 

other questions that could be answered in this 

manner? 

In advance of Dr. Hauser’s reply, Dr. Klarman advised, “Don’t do it. I tried it once.” Dr. 

Hauser agreed: 

When you use the chxwactevistics of an”area, 

even a very small area, and attribute them 

to the persons living in that area, you are 

subject to the eYYor of ecological cozvela ­

tion. 

The work of Victor Fuchs, who claimed that 

higher death rates were associated with higher 

incomes, had been mentioned as contradicting the 

Hauser–Kitagawa finding of an inverse relationship. Dr. Hauser stated that Fuchs’ study illustrates the error of ecological correlation. His 

analytic units are entire States, of which many are 

extremely heterogeneous. The Hauser-Kitagawa 

differential mortality study will include direct 

measurements of the ecological correlation error 

obtained by comparing attributes of the individual 

as reported in the Census and on his death certificate with the same attributes as they characterize the Census tract in which he resided. 

Dr. Sagen noted that vital statistics is full 

of small area statistics, “but we’ve got the wrong 

kind”: 

!


28 
Take Alpine County, California. I think it had 

523 inhabitants in 1964. There were 2 marriages there in that year; 4 births to residents of the county, of which 2 occuwed in 

the county; and 6 deaths to vesidents of the 

county, of which 2 occwred in the county. 

But we do not know anything about the WoodkzwnDistrict in Chicago, which may kzzve say 

200,000 people. 

Dr. Hauser agreed that our geographic clas ­

sifi cation system is a fundamental problem, “and 

we haven’t done anything about it.” About 1940 

we were being promised a grid system, and now 

we have the zip code, but that is guided by postal 

convenience. 

We are not going to get very far with small 

area statistics or any kind of statistics on an 

area basis until we come to some better 

method of classifying areas and a method 

whereby individuals can identify the area to 

which they belong. I do not know what my 

census tract is. 

To a question as to the value of family-sizepreference data, Dr. Hauser felt that these figures 

had not been adequately tested as to reliability or 

precision. They are nonsensical when used in developing regions, where everybody knows that God 

determines the number of babies you will have. 

When you come to Western societies, however, 

the technique becomes more meaningful. 

In a society in which fertility is almost 100 

p.wcent controlled, as is true of American 

society, it may tuvn out to be a pretty good 

indicator, just as it has been in American 

a.gricultuve. !rIntention to plant” was the 

source of Whelp tents family-size-preference 

concept. 

As a general observation connected with a 

number of matters touched on in the discussion, 

Dr. Hauser felt that more unified statistical cooperation, at the Federal level and between Federal, State, and local levels, might well be the 

quantum jump in statistics that would characterize the 1970’s. But at the present time the 

country is caught in a system of State and local 

governments that is no longer meaningful. 

With respect to a question concerning occupation as an analytic tool, it can be made to work 

very well indeed, Dr. Hauser stated, if income 

and education are included as factors. On a more 

general basis, it is rather poor. “Proprietor,” for 

example, may include the fellow who owns a large 

sales enterprise and the chap who sells peanuts 

on the street corner. 

With respect to education as a socioeconomic 

indicator, measurements are needed as to quality 

as well as quantity. In the 1970 Census we are 

going to find that nonwhite persons have just about 

caught up with white in years of schooling completed. Actually what this means is that in many 

of our local school systems, largely because of 

financial considerations, virtually no one ever 

fails. 

29 
HEALTH DATA NEEDS AND USES IN FORMULATING 

PUBLIC POLICY 

PRESENTATION BY DR. RIVLIN 

This topic was treated in a paper by Dr. 

Rivlin at a dinner meeting of the Conference. 

As Assistant Secretary for Planning and Evaluation in the Department of Health, Education, and 

Welfare, Dr. Rivlin had supervised preparation of 

“Toward a Social Report” (January 1969), which 

had been developed to fulfill a charge to Secretary Gardner in President Johnson’s Health and 

Education Message of March 1, 1966: 

Through the programs entrusted to its cave, 

the Department of Health, Education, and 

Welfare exercises continuing concern for 

the social well-being of all ouv people. Already, as I knve indicated in this message, 

it has become possible to set ambitious 

guals for the futwe. 

To impvove our ability to chart our progress, I have asked the Secretavy to establish 

within his O~ce the resources to develop 

the necessavy social statistics and indicators 

to supplement thse pvepaved by the Bureau 

of Labor Statistics and the Council of Economic Advisevs. With these yardsticks, we 

can bettev measure the distance we have 

come and plan for the way ahead. 

In “Toward a Social Report,” asocial indicator is defined as 

a stutistic of direct normative interest which 

facilitates concise, comprehensive, and balanced judgments about the condition of major aspects of a society. It is in all cases a 

direct measure of welfare . . . . Thus statistics on the number of doctors OY policemen 

could not be social indicators, whereas figwres on health or crime rates could be. 

Chapter I of the Report, on health and illness, was 

addressed to the question “Are we becoming 

healthier?” It was noted that the dramatic increases in our health and life expectancy that have 

characterized the 20th century have largely resulted from developments whose immediate effect 

was on the younger age groups, and that the improvement had slowed down by the early 1950’s. 

Further, the gains are very unevenly distributed 

among Americans, and at least 15 nations have a 

longer life expectancy at birth than we do. Among 

factors contributing to the country’s failure to 

improve its health further, mention was made of 

styles of life (smoking, overeating, etc.) . . . 

socioeconomic deprivation . . . the uneven dis ­

tvibutionof medical cave, the relative underuse of preventive, as opposed to curative and 

ameliorative care. 

In her dinner presentation, Dr. Rivlin told the 

Conference that this health chapter had been the 

easiest to write. The study group that worked on 

the report had been able to find no data of comparable scope or quality for the other chapters. 

In the health area, statistics were available both 

as included on vital records generated principally 

for other purposes and as especially collected to 

yield health information. Of a third kind of statistics, experimental results—by which Dr. Rivlin 

meant the result of actual trials of hypotheses in 

real-life environments—”we don’t have much in 

any area. ” Dr. Rivlin noted that even the health 

chapter was largely given over to negatives of 

health-to death, sickness, disability, and the 

like-rather than to positive aspects of health, 

where factual information still is largely lacking. 

Preparing the social report revealed that we 

have much more material for assessing questions 

and problems, and for identifying relations and 

trends than exists for defining needs. We probably 

have suitable methodologies but few data. When 

it comes to deciding on what action courses to 

follow, “the problems are horrendous . . . . We 

don’t even have the mechanisms here.” The variables are multiplied; we cannot be sure about 

where we should start; there are many competing 

needs and complicating factors; political considerations and vested interests may come to the 

center of the stage; methods of assessing results 

are obscure. Then when a great deal of money was 

put into education, a few years later it was diffi30


1 
cult to say what had been obtained from the investment. In the social sphere, results may take shape 

only during the course of entire life histories, and 

may be expressed in terms of widely prolifersting relationships for which measures are often 

uncertain or nonexistent. Further, there may not 

be very much difference, in the real world, between 

a social program and the alternatives that are proposed. 

Dr. Rivlin asked, “Is there any good way to 

judge a social experiment except by trying it out 

in real life?” In any event, the difficulties and 

actualities seem to argue for less aggregated 

data, and more specific information focused on 

definite problem situations where real social experiments come under consideration. 

INTERNATIONAL COLLABORATION OF NATIONAL


COMMITTEES


PRESENTATION By DR. SKRINJAR 

The initial presentation was by Dr. Skrinjar. 

She had decided to cover the entire theme of international cooperation in health statistics, rather 

than merely in relation to National Committees on 

Vital and Health Statistics. 

Diversity of National Efforts in This Field 

National vital and health statistics vary 

greatly in reliability, relevance, comparability, 

availability, and degree of use by health planners 

and decision makers. Very often the producers of 

the statistics, the statisticians who develop them, 

and their consumers are not working together 

sufficiently. Hence there is need at the international level to demonstrate the usefulness of cooperation. One way of doing this is by showing how 

useful cooperation between nations can be. This 

collaboration has taken different forms: exchange 

of information, including such things as data, 

practices, definitions, methodology; exchange of 

ideas on methodological and organizational questions, leading to international studies of various 

questions; and dissemination of the results, with 

assistance to countries to put them into practice. 

Cause-of-death statistics have been the main 

area for activating international cooperation. 

Nevertheless, Expert Committees on Health Statistics, regional conferences, and other meetings 

have made recommendations on many topics, of 

which Dr, Skrinjar mentioned especially hospital 

statistics, for both administrative use and morbidity analysis; various types of morbidity statistics, including diagnostic and measurement problems, sampling methods, and various analytic 

techniques; cancer statistics, including registries; 

and health service statistics, including resources, 

activities, utilization, special services, and measurement of the efficiency and effectiveness of 

services. Attention has been paid to other subjects, such as health statistics in developing 

areas, health indicators for measuring levels of 

living, problems of teaching and training, and of 

course the activities of National Committees on 

Vital and Health Statistics. 

With the advent of modern methods of data 

handling, the old questions of how to improve the 

collection of information, the quality of the information gathered, and the utilization of the statistics have taken new forms. Without doubt a variety 

of answers are dictated by varying situations and 

resources. Record linkage and statistics obtained 

through ad hoc surveys are coming into more 

frequent use. Because of these and other changes 

more detailed training is needed by statisticians. 

This subject too has been considered by a number 

of Expert Committees. 

The rapid social and technical changes of 

recent years have increased the need for coordination and collaboration in developing health statistics. Thus the WHO Regional Office for Africa 

is including a paper on “Collaboration in Health 

Statistics in Developing Countries” in its June 

Regional Seminar. 

Essential to international cooperation in 

health statistics is cooperation at the national 

level. In many countries various departments and 

agencies have developed overlapping health statis -

31 

I 
tics. These need to be integrated to simplify the 

administrative system and make it easier for 

users to satisfy their needs, as well as in preparing general national plans. 

National Committees and Their Equivalents 

Not all of the 50 National Committees on Vital 

and Health Statistics, or their equivalents, which 

have been created are currently active. Funds and 

personnel may have been lacking or there may 

have been no means of implementing Committee 

recommendations, or the statistical organization 

responsible for vital and health statistics may have 

failed to show interest. 

The organizational patterns of National Committees are varied: 

1.	 A Committee may function as a subcommittee of the National Council of Health, 

or of the National Council of Statistics. 

2.	 A Committee may be organized as an interdependent or even independent interagency body, working through standing 

subcommittees or ad hoc appointed 

groups. 

3.	 The Committee may be set up within the 

Ministry of Health to coordinate the work 

of various departments concerned with 

health statistics. 

4.	 Two or more standing committees maybe 

responsible for specific health statistics 

fields. 

Some countries with a highly centralized statistical system have thought that a special coordinating and advisory body was not needed. 

In view of the evaluation stwdy of National 

Committees that WHO is planning to make, 

and in connection with this anniversary Conference, WHO has contacted members of the 

WHO Advisory Panel on Health Statistics, 

and also has received comments from four 

Regional Offices, to get views on how coordination of vitul and health statistics can best 

be achieved and the collaboration of national 

exparts be improved. Replies from 40 offices 

wwe veceived. 

It is believed that a National Committee becomes possible in countries with developing statistical services only where a permanent advisor 

is assigned to a well-supported project. Even 

then, a health statistics committee camot do much 

without strengthening the statistical unit, since 

otherwise there would hardly be anyway to implement the recommendations it might make. 

International collaboration of National Committees could take a number of forms: 

1. National Committees could be one of the 

ways	 in which countries cooperate in international studies. 

2.	 Neighboring countries could collaborate 

on problems of common interest. 

3.	 Permanent or ad hoc cooperation in particular fields might be arranged. 

4.	 National Committees could provide guidance and advice to similar agencies in 

other countries. 

5.	 Information and other materials could be 

exchanged. 

“To be of practical service, WHO must be 

guided, supported, and authorized by the countries 

concerned.” 

Discussion 

In the ensuing discussion Dr. Krohn remarked 

that the European Region, where he serves, displays problems in health and in health statistics 

very similar to those of the United States. “On 

my way to this Conference I thought about our 

problems, and not one of the points that occurred 

to me has not been mentioned here.” The populations in his region show low levels of increase, 

with drifts toward the higher ages. “In such a 

population many of our health problems are not 

detectable by traditional statistical systems.” 

The death statistics for the older ages, with large 

numbers of deaths in relatively few categories, are 

not very sensitive. Nor are the health problems 

very satisfactorily reflected in hospitalization 

data. 

But not all health statisticians aye worried 

about this. Some have not felt that this is 

32 
their responsibility. In some countries their 

primary task is to gather data in a~eement 

with the present rules, and the find goal in 

their efforts is an annual repovt along traditional lines that gets published 2 or 3 years 

after the events. 

Health administrators, however, are greatly 

concerned. “They need intelligence units which 

can rapidly provide current information of importance for administering health services.” What 

seems to be needed are ad hoc surveys, possibly 

obtained by means of a rotating sample such as 

Dr. Hauser described. 

But there is perhaps the more important and 

more difficult fact that we lack indices for messuring the kinds of morbidity wc are now faced 

with. 

Consider for example our epidemic of traffic-accident injuries, pavticulavly among 

young males. Why are they such a high-visk 

group? When they are examined, we find that 

they are at the peak of theiv physical development. They are in as good physical condition as they will evev be. Thare must be 

something else. 

Again, especially in Scandinavia, we ave facing an epidemic of psychotropic dmgmisuse. 

What is the population at risk? We cannot wse 

the typical risk factor of poov socioeconomic 

condition because this kind of morbidity is 

found lavgely in well-to-do classes. 

Dr. Krohn concluded by advocating more flexibility in health statistics services and measures. 

“We can’t just do more of the same. We must 

choose and innovate.” 

We need something like what you have in the 

United Stutes. Here in the National Center 

you have a unit which simply sits and analyzes situations to find out what they really 

mean. I think this is of tremendous importance, and is something we lack in European 

countries. 

General comparisons between countries based on 

routinely gathered statistics have been overplayed. What is needed is an interchange of methodologies. The National Center might well enlarge 

its distribution of methodological reports by soliciting the names of appropriate individuals. Reports sent to government agencies sometimes end 

up on the shelves without having been read by 

those interested in and responsible for the subject 

in question. 

Mr. Reed observed that the United Kingdom 

had had a National Committee which had done a 

tremendous amount of work, especially on the 

Eighth Revision; that it was presently without any 

National Committee at all; and that it would shortly 

have two such Committees ”workingin parallel-on 

medical and on demographic statistics. The hope 

is that these will do a great deal of their work 

through ad hoc committees dealing with particular 

problems. 

Mr. Reed felt that WHO was especially valuable, in relation to national activities in health 

statistics, because it acts as a catalyst. “It’s 

easy at international gatherings to decide that 

something needs doing, but if someone from WHO 

does not take the initiative it may not get done.” 

But there is also need for collaboration between 

individual countries, as had occurred between the 

United States and the United Kingdom on multiple 

causes of death. 

Dr. Pirc noted that WHO’s Expert Committees 

up to 1960 often mentioned National Committes, 

but since then almost not at all. In his judgment, 

he felt that this meeting should express the view 

that the work of National Committees should be 

more strongly emphasized. Dr. Dunn, chairman of 

the discussion, suggested that perhaps a letter 

from the Secretary of the U.S. National Committee 

noting this suggestion might be helpful. 

Dr. de Groot was of the opinion that Segi’s 

work on cancer in various countzies shows that 

international comparability has its merits. 

In view of special needs in the Netherlands, 

Dr. de Groot recommended development of special 

coding and classification systems for various 

medical specialties, and for the measurement of 

morbidity in general practice. In the latter area 

there has been some collaboration between Dutch 

and English organizations. Secondly, there is need 

to push for international comparability of categories for occupational and social groups. Methodological cooperation would be desirable in establishing international standards, more apt than the 

conventional ones, for the appraisal of health and 

social well-being. Cooperation with other countries would be helpful in relation to studies of the 

33 

I 
geographic distribution of certain conditions, including congenital malformations of the central 

nervous system, in relation to stillbirth and infant 

mortality rates. Work in the Netherlands would 

be helped by comparisons with Germany, Switzerland, Belgium, and France. 

Dr. Guidevaux reported that France’s National Committee consists of representatives of 

most of the government agencies that are interested in health, and persons from various technical agencies providing or using health statistics. 

The French Committee has no executive authority, 

and limits itself to such areas as mortality, morbidity, and hospital statistics. She would welcome 

international comparisons through the good offices 

of the World Health Organization, and likewise 

through publications describing work being carried out in various countries. 

Dr. Puffer reported that National Committees 

have had a varying success in individual Latin 

American countries. In addition regional advisory 

committees have sometimes proved useful. Dr. 

Puffer then asked 

Why is it that the present National Committee has had so much success? I think one of 

the reasons is that it has calledfov helpfiom 

many specialties. Anothavreason is its choice 

of topics fov study. And I think a third veason 

is the continuity ofsawice and conkribwtions 

of its Executive Secvetary. 

Dr. Dunn then called on Dr. Moriyama, who 

spoke as follows: 

I agree with Dr. Pirc that WHO has notplayed 

an active role with regurd to National Committees. I would like to see WHO exercise 

leadership in promoting National Committee activities. 

The National Committees, many of them now 

inactive, have been in existence for the past 

15 to 20 years. PeYhaps it would be u$efil 

for each of the national committees to reexamine now its program and functions. In this 

connection, Dr. Skrinjar mentioned coordination as an importuntfinction of National Committees. While it is true ttit coordination is 

needed in many countra”es, the assumption of 

this function by National Committees may 

make it difficult to carry out the move important technical development activities that 

National Committees can wsefully @WSU6?. 

Lastly, it may be desirable to hold another 

International Conference of National Committees to estublish new goals for National 

Committees. 

Dr. Densen called attention to the fact that 

Dr. Skrinjar herself and a number of discussants 

touched on a common theme-the need to develop 

health statistics in relation to service programs. 

This could be one of the ways of vitalizing National Committees. It certainly could be one of the 

ways in which WHO could take some leadership. 

Dr. Linder urged that a national conference 

of the present kind be arranged more often than 

every. 5 years, with international participation. 

Dr. Dunn referred to the World Health Organization’s definition of health as a state of complete 

physical, mental, and social well-being. 

This is the most widely quoted definition in 

the health avea that we have evw had; but no 

one really understands it. It is up to the statistical people to make what it means more 

real in terms of health entities consonant 

with the definition. 

Dr. Skrinjar reminded the group that WHO 

would be glad to help; but “WHO is there to give 

whatever assistance it is asked for. It cannot 

do anything without support at the national level.” 

34 
CONCLUSION - BROAD 

Dr. Berg commented on the general tenor and 

content of the Conference. He found’ ‘a remarkable 

degree of agreement on a number of methodological and philosophical topics; but what is remarkable, the views we agree on are not in fact shared 

by most vital statisticians or registrars or even 

epidemiologists.” He identified four organizing 

principles that guided the Conference. 

The first of these is “a remarkable degree 

of flexibility and imagination” 

With an emphasis on conceptualization and 

free-wheeling thinking about new ways of attackhgdata and their meaning. This can only 

happen, however, when one maintains continuing attention to definitions . . . . It uxzs pwfectly clear that we are going to have to define ouv terms careji.dly if we want to think 

freely. Even in the area of confidentiality and 

the right to priwzcy, it is clear we need to 

see move sharply what we are thinkin~of . . . . 

It was interesting that we even disagreed on 

terms like longitudinal, followback, and so 

on—classical terms of our profession. So 

too with comparability-it becomes possible 

only when we can agree on tevms and methods. 

The second broad area of agreement is “the 

emphasis on relevance or discrimination”: 

Rather than just going out and gatheving 

masses of data and increasing our empives 

by the storage of tapes, everyone agreed that 

we must make definite decision as to what we 

do . . . . This willingness to insist on relewmce 

and decision- mukin.g as an absolute basis for 

even the gathering of data, and the methods 

of developing data, shows a remarka bleflexibility and freshness. We ware even willing 

to consider abandoning the classic vital statistics system as a means of obtaining basic 

data, 

The advantages of the emphasis on velevance 

are not only economy but quality. Even with 

vespect to data banks and vecord linkage, it 

is evident thut we agreed that this was not 

just an undiscriminating massing and com -

CONFERENCE THEMES 

bining of data, but techniques to be judged by 

the quality and appyof.w-iateness of the materiul to be obtained. PeYhaps too following 

this path will do much to bypass the threat of 

confidentiality breaches. 

The third broad area of agreement is related 

to what Dr. Dyar called ‘‘uncertain~”: 

I would locate hwe all the emphasis on the 

need for methodological Yeseavch and development so that we are not so uncertain as to 

what we are doing, and that we are less uncertain as to what sharing of pevsonal information the public will tolerate. 

In the fourth place, Dr. Berg stated “we 

identified the broad issue of trusteeship”: 

Who is going to be Responsible foy upholding 

the public~s m“ghts, whethm they find expression on the one hand in the need to avoid inmsion of pvivacy ov violations of confidentiality, ov on the other hand, in making ceYtiin that the statistical dQta serve well not 

only society in general but people? 

As a personal expression, he being an epidemiologist and not a vital statistician, Dr. Berg 

concluded: 

I want to @“ve an encmmows vote of confidence 

in the vital statistics interest. The vital statistics people want the information they are 

gathevi~ to be not mevely stored in books but 

used; and therefore they want this information 

to fit our growing needs, 

Mr. Woolsey thanked the National Committee’s international visitors for their attendance 

and participation. Mr. Reed responded on their 

behalf. Dr. Berg noted that a generous contribution 

from the Milbank Memorial Fund had helped to pay 

part of the expenses of the meeting; and concluded 

it by expressing the thanks of the conferees to the 

staff-Mrs. Petersen, Mrs. Lane, and Mr. Krueger—who had contributed so much to the smoothness with which the Conference was planned and 

executed. At an earlier meeting, Dr. Moriyama 

had been presented with a plaque commemorating 

his 20 years of service with the National Committee. 

000 35 

I 
APPENDIX


PAST AND PRESENT COMMITTEE MEMBERS


Anderson, Odin W., Ph. D., 1959-63 

Professor and Associate Director 

Center for Health Administration Studies 

University of Chicago 

Chicago, Illinois 60637 

Baehr, George, M.D., 1949-55 

110 East 80th Street 

New York, New York 10021 

Beelman, Floyd C., M.D., 1949-51 (Absent) 

1319 Huntoon Street 

Topeka, Kansas 66604 

Berg, Robert L., M. D., 1965-

Professor and Chairman 

Department of Preventive Medicine and 

Community Health 

The Medical Center 

The University of Rochester 

Rochester, New York 14620 

Chancellor, Loren E., 1962-66 

Chief, Registration Methods Branch 

Division of Vital Statistics 

National Center for Health Statistics, HSMHA 

Public Health Service, DHEW 

Rockville, Maryland 20852 

Crosby, Edwin L., M.D., 1952-58 

Dii4ector 

American Hospital Association 

Chicago, Illinois 60611 

Daily, Edwin F., M.D., 1949-60 (Absent) 

Director, Maternal and Infant Care Projects 

The City of New York Department of Health 

New York, New York 10013 

Davids, Donald J., 1966-

Chief, Records and Statistics Section 

Colorado State Department of Public Health 

Denver, Colorado 80220 

Davis, Kingsley, Ph. D., 1969- (Absent) 

Director and Professor of Sociology 

International Population and Urban Research 

University of California 

Berkeley, California 94720 

Densen, Paul M., SC.D., 1949-59 

Director, Center for Community Health 

and Medical Care 

School of Public Health and Medical School 

Harvard University 

Boston, Massachusetts 02115 

*Dorn, Harold F., Ph. D., 1949-63 

Dunn, Halbert L., M.D., 1949-60 

9130 Riverside Drive 

Fort Foote, Maryland 20022 

Dyar, Robert, M. D., 1961-67 

Dean , Graduate School of Medical Sciences 

University of the Pacific 

San Francisco, California 94115 

*Fales, W. Thurber, SC.D., 1949-53 

Gaffey, William R., Ph.D. 1969-

Senior Biostatistical Consultant 

Institute of Medical Sciences 

Pacific Medical Center 

San Francisco, California 94115 

Haenszel, William M., 1964-68 (Absent) 

Chief, Biometry Branch 

National Cancer Institute, NIH 

Bethesda, Maryland 20014 

Hamilton, C. Horace, Ph. D., 1960-64 

Associate Director


Carolina Population Center


The University of North Carolina


Chapel Hill, North Carolina 27514


36 
I 

Hamilton, Eugene L., 1949-59 (Absent) 

Director, Medical Statistics Agency 

Office of the Surgeon General 

U.S. Department of the Army 

Washington, D.C. 20315 

Hauser, Philip M., Ph. D., 1949-60 

Director and Professor of Sociology 

Population Research and Training Center


University of Chicago


Chicago, Illinois 60637


Heustis, Albert E., M.D., 1958-61 (Absent) 

Director, Michigan Association for 

Regional Medical Programs 

East Lansing, Michigan 48823 

Hubbard, John P., M.D., 1956-61 (Absent) 

President and Director


National Board of Medical Examiners


Philadelphia, Pennsylvania 19104


Hutcheson, Robert H., M.D., 1951-58 (Absent) 

Commissioner 

Tennessee Department of Public Health 

Nashville, Tennessee 37219 

Kirk, Dudley, Ph. D., 1961-65 (Absent) 

Professor of Demography 

Food Research Institute 

Stanford University 

Stanford, California 94305 

Kiser, Clyde V., Ph. D., 1965-69 

Vice-President for Technical Affairs 

Milbank Memorial Fund 

New York, New York 10005 

Klarman, Herbert E., Ph.D., 1967-

1 Professor 

Department of Environmental Medicine 

and Community Health 

Downstate Medical Center 

State University of New York 

Brooklyn, New York 11203 

Kotin, Paul, M.D., 1969- (Absent) 

Director, National Institute of Environmental 

Sciences 

National Institutes of Health 

Research Triangle Park, North Carolina 27709 

Lee, Everett S., Ph.D., 1964-68 

Professor, Department of Sociology 

University of Massachusetts 

Amherst, Massachusetts 01003 

Lewis, Charles E., M.D., 1968- (Absent) 

Assistant Director and Professor of 

Social Medicine 

Center for Community Health 

and Medical Care 

School of Public Health and Medical School 

Harvard University 

Boston, Massachusetts 02115 

Lilienfeld, Abraham M., M.D., 1969- (Absent) 

Professor and Chairman 

Department of Chronic Diseases 

School of Hygiene and Public Health 

The Johns Hopkins University 

Baltimore, Maryland 21205 

Linder, Forrest E., Ph. D., 1968-

i958-67 (Ex officio) 

Professor, Department of Biostatistics 

School of Public Health 

University of North Carolina 

Chapel Hill, North Carolina 27514 

MacMahon, Brian, M.D., 1959-63 

Professor, Department of Epidemiology 

School of Public Health 

Harvard University 

Boston, Massachusetts 02115 

McNerney, Walter J., 1963-67 

President


Blue Cross Association


Chicago, Illinois 60611


Moriyama, Iwao M., Ph. D., (Ex officio) 1949-

Director, Office of Health Statistics Analysis 

National Center for Health Statistics, HSMHA 

Public Health Service, DHEW 

Rockville, Maryland 20852 

Parke, Robert, Jr. 1968-

Program Planning Officer 

Bureau of the Census 

U.S. Department of Commerce 

Washington, D.C. 20233 

Philp, John R., M.D., 1966- (Absent) 

Health Officer 

County of Orange Health Department 

Santa Ana, California 92702 

*Reed, Lowell J., Ph. D., 1949-56 

37 
Sagen, Oswald K., Ph. D., 1954-58 

Assistant Director for Health Statistics Development 

National Center for Health Statistics, HSMHA 

Public Health Service, DHEW 

Rockville, Maryland 20852 

Schlesinger, Edward R., M.D., 1960-64 

Professor of Maternal and Child Health 

Graduate School of Public Health 

University of Pittsburgh 

Pittsburgh, Pennsylvania 15213 

Shackelford, Mrs. Margaret F., 1958-62 

4638 Willard Drive 

Oklahoma City, Oklahoma 73105 

Sibley, Elbridge, Ph. D., 1949-50 

Executive Associate 

Social Science Research Council 

New York, New York 10017 

Taeuber, Conrad, Ph. D., 1961-65 

Associate Director 

Bureau of the Census 

U.S. Department of Commerce 

Washington, D.C. 20233 

*Deceased 

38 

Thompson, Donovan J., Ph. D., 1967-

Professor, Department of Preventive Medicine 

School of Medicine 

University of Washington 

Seattle, Washington 98105 

*Whelpton, P. K., 1949-61 

Woolsey, Theodore D. (Ex officio) 1967-

Director 

National Center for Health Statistics, HSMHA 

Public Health Service, DHEW 

Rockville, Maryland 20852 

Yerushalmy, Jacob, Ph. D., 1963-67 (Absent) 

Professor of Biostatistics 

School of Public Health 

University of California 

Berkeley, California 94720 

Yoder, Franklin D., M.D., 1962-66 

Director of Public Health 

State of Illinois Department of Public Health 

Springfield, Illinois 62706 
OBSERVERS AND GUESTS OF THE COMMITTEE 

Confrey, Dr. Eugene A. Puffer, Dr. Ruth R. 

Associate Director, Program Planning & Evaluation Chief, Health Statistics Department 

Bureau of Health Professions, Education, and Regional Office for the Americas 

I Manpower Training 

National Institutes of Health, DHEW 

World Health Organization 

Washington, D.D. 20037 

Bethesda, Maryland 20014 

Reed, Michael 

de Groot, Dr. Meindert J. W. Registrar General 

Head, Division of Health Statistics General Register Office 

Central Bureau of Statistics Somerset House 

The Hague, The Netherlands London, England 

English, Dr. Joseph T. Rivlin, Dr. Alice M. 

Administrator Senior Fellow 

Health Services and Mental Health Administration The Brookings Institution 

Public Health Service, DHEW Washington, D.C. 20036 

Rockville, Maryland 20852 

Simmons, Walt R. 

Guidevaux, Dr. Madeleine Assistant Director for Research and 

Director, Section for Information on Scientific Development 

Public Health National Center for Health Statistics, HSMHA 

National Institute for Health and Public Health Service, DHEW 

Medical Research Rockville, Maryland 20852 

Paris, France 

Skrinjar, Dr. B. 

Harris, Fraser Medical Officer 

Director, Health and Welfare Division Development of Health Statistical Services 

Dominion Bureau of Statistics World Health Organization Ottawa, Ontario, Canada Geneva, Switzerland 

Krohn, Dr. E. F. 

Regional Officer for Epidemiology and Speiser, Lawrence 

Health Statistics Director, Washington Office 

American Civil Likxmties Union Regional Office for Europe 

World Health Organization Washington, D.C. 20036 

Copenhagen, Denmark 

Storck, Dr. John 

Pirc, Professor Bojan Consultant 

Chairman, National Committee for Vital and National Center for Health Statistics, HSMHA 

Health Statistics of Yugoslavia Public Health Service, DHEW 

Zagreb, Yugoslavia Rockville, Maryland 20852 

000 

39 
INDEX 

The letters following page numbers indicate page quadrants (a, upper left; 

b, lower lef~ c, upper righ~ d, lower right) 

Annoyance as basis for opposing information gathering, 

6C 

Balance: 

Need for, with fundamental rights, 9c, lOa, 10d 

Assumes a harmony of interests, 1la 

Census: 

Confidentiality provisions of, 12c-13c 

Present system antiquated, 26d 

Need for joint system of data collection with vital 

statistics, 26d f 

Cohort statistics needed in relation to vital data, 19c 

Committees, local peer review, to protect research 

subjects, 9C f 

Comprehensive health care services, use of when established, 3a 

Compulsion (legal) to answer statistical questionnaires: 

Possible benefits of, 10b f, lld


Experience with noncompulsory systems, lld, 12b,


12C ff 

United Kingdom experience, 1ld; French, Yugoslavian, 

Scandinavian, 12a 

Census procedures, 12c ff 

Conceptualizing statistical problems: 

Need for, 18b f 

Must be based on unique features of the problem 

area, 20d 

Conference themes, four, 35a ff 

Confidentiality: 

More limited right than that of privacy, 8C


In common law, 10a


Gives full protection where statistics are concerned,


10d; this position questioned, lla 

Legal status in United Kingdom, lld 

The fact and the image of confidentiality, both important, 13b 

Maintainable by local jurisdictions, 14w this questioned, 14a 

Difficulties in protecting the data, 14b H 

Need for clear Federal policy position on, 14d 

Releasing professional lists, 14d 

Lack of information on confidentiality practices, 15a 

Consenti 

Must be freely given, informed, and not violated, 8d 

Meaning of term, 10c; illustrated by Miranda case, 10c 

Concept is complicated, 13c 

Cooperation of disciplines needed to solve current 

problems, 5d 

Cooperation, international, in vital” and health statistics, 

31C f 

Need for in developing countries, 31d 

Dependence on national cooperation, 31d 

Forms of, 32c 

Correction of files, proposed right to allow, 6d 

Current Population Survey, 12c 

Death index, national, 5b 

Demographic statistics, needs (by socioeconomic 

status): 

Population totals and characteristics, 25a 

Fertility measures, including period and cohort dat 1 

25a f !’ 

Mortality data analogous to the fertili~ measures, 25c 

Internal migration, 26a 

Marriage and divorce, 26a 

Family statistics, 26a 

Mechanisms for meeting these needs, 26c 

Ecological correlation, error of, 26d 

Environmental statistics, need to study, 17a 

Family statistics, 16b, 19c, 20a 

Adequacy of family-size preference data, 29c 

Followback studies, 4b 

Difficulties of, with vital registration system, 28) 

“Fringes” of frequency distributions, need to study, 161i 

Health, indices of: 

Need for developing, 20c, 30d 

Factors working against health, 30c 

Need to give more meaning to WHO definition of health, 

34d 

Health needs of Nation, impact of general social con.. 

ditions on, 2b ff 

Health services dat~ 

Tendency to desire too much data, 21d, 24a 

Internal management needs, 21d 

Research needs, 22a f 

Planning needs 22c ff 

Demand is a better criterion than need, 22d fl 

Government can evince demand, 23b 

Choice of explanatory model, 23b f 

Influence of supply on demand, 23d, 24d 

Dealing with the future, 23d 

Health services system: 

Type of health system needed is itself a good measure 

of health care, 24b 

Utilization as a measure, 24a; unmet needs, 24c; 

end results, 24d 

40 
Need for including many nonhealth variables, 24d 

Hospital medical records: 

No longer confidential, 7b 

Getting permission to use for research, 7d 

Information in records: 

Now available to whom?, 7a 

Status of hospital medical records, 7b 

Informed consenti See consent 

Longitudinal studies, 16b, 19c, 20a 

Distinction between followup of specific individuals, 

and of cohorts, 27c 

Mass society: 

Information needs of, 6a 

Security a right of the collectivity, 10d 

Microstatistics, need for, 19b 

Multiple-cause-of-death analysis, 16d, 27b 

National Center for Health Statistics: 

Enlarged functions of, 2a H 

Should make more use of data collected by other 

organizations, 14a 

Typical adverse reactions to data gathering from 

public, 15a 

Appropriate location of Federal statistical activity, 

17c H, 20b, 21a 

Health statistics in Yugoslavia deteriorated when 

placed in central statistical agency, 21b 

Using National Health Survey data to estimate smallarea values, 28c 

National Committees and their equivalents: 

Patterns of, 32a 

Interest of WHO in views on better coordination, 32b 

Need for permanent leadership of, with support, 32c 

Health problems in Europe similar to those in U.S., 

32d ff 

Need in Europe of something like the U.S. Committee, 

33C 

Need for interchange of methodologies, 33b 

Situation in United Kingdom, 33c 

Need for more emphasis on National Committees by 

WHO Expert Committees, 33d, 34b 

Dutch suggestions, 33d 

Situation in France, 34a 

Regional advisory committees in Latin America, 34b 

Suggestion that NCS reexamine their program and 

functions, 34c 

Suggestion that an international conference of NCS be 

held, 34c 

Vitalizing NCS by relating health statistic to service 

programs, 34c 

National Committee, U.S.: 

Examples of its past achievements, 3C 

Need to study relations with Public Health Conference 

on Records and Statistics, 15b 

Need for study committees on: health indices, 20c; 

plight of the vital statistics system, 21b f 

Reasons for success of the Committee, 34b 

Proposal of conference like the present one more 

often often than every 5 years, 34d 

National data center proposal: 

Reason for public concern about 9b 

Adverae characterizations of “data bank” concept, 10a, 

16c, 19c, 20a, 27d 

Suggested control agencies: Congress; the press; 

professional associations; general control 

commission, 12a; Bureau of the Census, 17c; 

Executive Office of the President, 18a; an 

independent agency like the Federal Reserve 

system, 18a 

Information agency and its basic sources should not 

be separated, 15a 

Need to link data according to concept and purpose, 

26~ question of linkages involving present 

diverse systems, 26c 

Quinquennial and annual (sample) censuses, 26c 

Problems from merging data collected for different 

purposes, 28a 

More unified statistical cooperation, in any event, 

desirable, 29c 

Nutrition surveillance system proposed, 3a 

Privacy: 

Demand for is “a cultural atavism”, 6a 

Invasions of by rhe private sector and by government 

surveillance agencies, 6b 

Need of investigators to meet problem as public 

actually perceives it, 6b f 

Subjectivity of criteria of, 7a 

Of patient records in malpractice suits, 7b 

Five interferences with, 7C 

“Right to be let alone”, 8b


Right to, currently still being developed, 8b f


Reserved topics, 12a


Census procedures, 12c ff


Safeguards should be accommodated to the public 

interest, 14a 

Need to probe the concept, 15d 

Protection techniques against information intruders: 

Criminal penalties, 9a 

Damage suits, 9a 

Administrative controls, as by a protecting trusteeship, 9a, llb 

Triple-file system, llb 

Public: 

Needs to understand changing values and techniques, 

5d f 

Census efforts to probe reactions to proposals, 12d 

Steps taken by Census to acquaint public with its 

policies, 13a 

Subtle policy differentiations will not be understood, 

14C 

Public Health Conference on Records and Statistics: 

Need to study relations with National Committee, 15b 

Public Health Service local peer review committees 

to protect research subjects, 9C f 

Record-linkage studies, 4b f 

Reasons for, and examples, 4d f 

Difficulties of, in U.S., 5b 

41

Need to keep bodies of data decentralized, 13d 

Problems of, 16c 

United Kingdom position, 21a 

Open-ended vs. closed-end arrangements, 28b 

Registration number to unify records used in Scandinavia, 12b 

Research requirements of, 16d 

Researchers: 

Often insensitive to public reactions, 9b 

Liability to damage suits on responding to subpoenas, 

10b 

Scientists: public questioning of them motives and 

methods, 9b 

Small-area statistics 16a, 19c: 

Need to relate to program questions, 18d, 28c 

Need to make expertise available at local levels, 19b 

Needed to attack today’s problems, 19d 

Possibility of using National Health Survey data to 

estimate local area relations, 28c 

Information now gathered in vital statistics of wrong 

kind, 28d 

Present geographic classification system inadequate,. 

29a 

Social report, efforts looking toward 

Meaning of “social indicator”, 30b 

Would quantify relations, trends, needs, possible 

action courses, 30d 

Need for less aggregated data, 31c 

Social Security records, potential for medical research, 

5b f, 17b 

Socioeconomic characteristics (e.g., occupation, income, education) as analytic tools, 29c 

Statistical tabulations, special health uses of routine, 

4a 

Subpoena of private information: 

In malpractice suits, 7b 

General discussion, 10a 

Use of Presidential power to resist subpoena, 1lC 

“Trade-offs” as means of accommodating private demands and public needs, 6c, 1la 

Training health statisticians, 18a, 20b 

Conceptualizing statistical problems as a way of 

spreading supply of statisticians, 18b f 

Need for unrestricted training grants, 19c 

Universities poor places to teach problem-solving, 

21b 

Population laboratories as training places, 21c 

Uncertainty as basis for public concern when personal 

information is sought, 5d f 

United Planning Organization arrangement for protecting 

data, 9a, Llb 

Vital registration system: 

Proposal that legal items be separated from statistical 

items, 7d, 15b, 17b, l~b, 20d, 21c 

Direct reporting of health information to statistical 

agencies, 13d 

Need: to study the system, 15~ to seek means of improving it, 21a; present system antiquated, 26d 

Need for joint system of data collection with census, 

using flexible sampling, 26d ff 

Voluntary consenk See consent 

42 *U. S.GOVERNMENT PRINTINGOFFICE :19700-402-100 
OUTLINE OF	 REPORT SERIES FOR VITAL AND HEALTH STATISTICS 

Public Health Service Publication No. 1000 

Sevies 2. 

Series 3. 

Series 4. 

Series 10. 

Series 11. 

Series 12. 

SeVies 13. 

Serzes 14. 

Sevies 20. 

Sevies 21. 

SeVies 22. 

* 

Progyams and collection pvoceduves.— Reports which describe the general programs of the National 

Center for Health Statistics and its offices and divisions, data collection methods used, definitions, 

and other material necessary for understanding the data. 

Data evaluation and methods research. —Studies of new statistical methodology including: experimental tests of new survey methods, studies of vital statistics collection methods. new analytical 

techniques, objective evaluations of reliability of collected data, contributions to statistical theory. 

Analytical studies. —Reports presenting analytical or interpretive studies based on vital and health 

statistics, carrying the analysis further than the expository types of reports in the other series. 

Documents and committee )-eports. — Final reports of major committees concerned with vita 1 and 

health statistics, and documents such as recommended model vital registration laws and revised birth 

and death certificates. 

Data jrom the Health lntevoiew Survey. —Statistics on illness, accidental injuries, disability, use of 

hospital, medical, dental. and other services, and other health-related topics, based on data collected 

in a continuing national household interview survey. 

Data from the Health Examination Suvuey. —l)ata from direct examination. testing, and measurement of national samples of the population provide tbe basis for two types of reports: (1) estimates 

of tbe medically defined prevalence of specific diseases in tbe United States and the distributions of 

the population with respect to physical, physiological, and psychological characteristics; and (2) 

.malysis of relationships among tbe various measurements without reference to an explicit finite 

universe of persons. 

Data fvom the Institutional Population Su~ceys. —Statistics relating to “the health characteristics of 

persnns in institutions, and on medical, nursing, and personal care received, based on national 

samples of establishments providing these services and samples of the residents or patients. 

Data fvom the Hospital Dischavge Survey, —Statistics relating to discharged patients in short-stay 

hospitals, based on a sample of patient records in a national sample of hospitals. 

Data on health resources: manpowev and facilities .—statisti~s on the numkrs, geoivaphlc distribution, and characteristics of health resources including physicians, dentists, nurses, other health 

manpower occupations, hospitals, nursing homes, and outpatient and other inpa~icnt facilities. 

Data on /normality. -Various statistics on mortality other than as included in annual or monthly 

reports— special analyses by cause of death, age, and other demographic variables, also geographic 

and time series analyses. 

Data on natality, marriage, anddiuorce. —Various statistics on natality, marriage, and divorce other 

than as included in annual or monthly reports— special analyses by demographic variables, also 

geographic and time series analyses, studies of fertility. 

Data fyom the National Natality and Mortalit~ SllvL,eys. —Statistics on characteristics of births and 

deaths not available from tbe vital records, based on sample surveys stemming from the~e records, 

including such topics as mortality by socioeconomic class, medical experience in the last year of 

life, characteristics of pregnancy. ~,t:. 

For a list of titles of reports puhlishedin these series, write to: Office of Information 

!	 ?Jational (’enkr for Health f+ta~istics 

~.s Puij]jc Iiealth Ser\ice 

Rockville, hl(l. 208,52