iniiii[litill@illi iiiiiii@
                                                                                                 5@lill@l@ill


          Committee consisted of:  David Howell, Dan McCarty, La-,-ry Shulman, Clem Sledge
          John Vaughan, Ilax Weiner, Henry Mankii,i as Chairman)

          The Committee in its deliberations had discussed the goals of research ill an
          arthritis center and indicated that these were basically as follows:
          1.  to increase fundamental knowledge regarding arthritis and allied disorders;

          2.  to improve the quality of patient care;
          3.  a:nd to seek cures or controls for the various disease states.

          In consideration of the structure of research units in arthritis centers, the
          following subjects were discussed at some length:

          1.  types of research
          2.  bed needs for clinical research

          3.  laboratory needs for basic research

          4.  relevance of research activities

          5.  cooperative research

          It should be pointed out it became apparent to the Committee that the relevance
          was intimately tied with the first item which was the types of research and this
          was not separately discussed.

          1.  types of research     in regards to type of research, the committee agreed that
               there were five general areas of research activities which would be of
               importance in an arthritis center.  These include    A.  Basic research
                which could otherwise be spoken of as model or fundamental.  These should
                                                        hysiology
               occur in areas including genetics, pathop,
                                                                   cell biology

               immunology, microbiology, @ioengineering, and biochemestry.


          The second broad catagory of research activities would be patient oriented
          research.  This would include research endeavors in the fields of epidemology
          and demography; physcosocial aspects of disease; biological aspects of  disease
          (specifically, analysis of disease states on the basis of laboratory tests) and
          observations regarding the natural history of disease entities.

          The third catagory of research was in the field of management research which
          principally  has-to -do w,itli-the care of the patient.  This would include investigation
          in the fields of delivery of health services; surgical treatment of arthritis
          and allied disorders:  drug therapy: and rehabilitation measures  to

          alleviate crippling disorders.

          The fourth catagory of research is in the field of measurement.  This  includes
          principally the asp ect of data i,nput, s@@orage and retrieval and presumably would
          be on a national basis so that all centers could utilize the data generated  by
          the programs.  The important consideration in this area that coding and input
          information be of sufficient breath and depth to not exclude areas which will subsequently

          become important.

          The final area which was considered in this discussion was educational research.
          This would specifically be research into methods of education including techniques
          and ethicasies for groups such as lay population, the patient group, the  para-
          medical and allied health groups, and physicians in the field of arthritis  and

          those in other disciplines.

          The second question asked by the group was regarding number of beds which would
          be required for a competent clinical research unit within an arthritis center..
          In consideration, of this point, it seems logical to regard tile composition


                                                    an arthritis center.  Fortuitously
          of the committee at the resident faculty of
          our committee was made up of four rheuniato'ligists of diverse interests, two
          orthopedists and one psychologist all of whom are engaged in clinical practice, education,
          and research in the fields of arthritis and allied diseases.  On the basis of their
          respective needs and considerations related respective projects, it was
          estimated that a clinical research unit within an arthritis center would require
          10 to 12 beds occupying 5,000 square feet of space.  Appended to this system would
          be a core laboratory occupying 600 square feet of space.  In addition, facilities
          would be required for the accomodation of 200 out-patient visits per month.

          The thrid question was the problem of the laboratory requirements for basic
          research in the arthritis center.  In the criteria used for the prior discussion
          was applied to the circumstances as well.  Four rheumatoligists, two orthopedists,
          and one psychologist merged into an arthritis center in a large urban area
          i,ndicate-d@their needs for their -type of activities.  It is estimated on this
          basis that 15,000 square feet of space would be required and it would be occupied
          by 20 investigators.  The investigative team wolrld-in addition have technical
          help and shared common space of sufficient magnitude to carry on the types of
          activities that they ordinarily would perform.

          The next question which was addressed was that of the need for and characteristics
          cooperative research in an arthritis center.  It seemed logical that four types
          of cooperative activities would be carried on by a unit of this sort.  The first
          was in the area of data retrieval.  lt was apparent that if arthritis centers
          are to be built in various parts of the country, all data should be pooled for
          ready access and cooperative studies.  Thus uniform coding system and centeral
          computer facilities might be very desirable for such a system.


        The secondary  of coopeative research would be related to the probability that

        no center would have personnel and patient distribution which would allow

        a uniform expertise and interest in all of the range of diseases within the
        domain of arthritis and allied disorders.  It would seem logical that under

        these circumstances to have a principal of "assigned thrust" applied to the

        various centers.  Thus one center might have as its principal activity, the

       "research, education and service in the field Of IUPLIS while another might

        choose rheumatoid arthritis, etc.

        The third area of cooperative research would be in the form of "pooled protocols".

        Thus one of the centers which had an assigned thrust in the field of lupus might-

        promulgate a protocol for management of patients and send such to all participating

        @oo/$Ooo centers for a uniform treatment of pati6nts. This would enhance the

        research program and presumably the quality of care.

        The fourth area of cooperative research activity would be in the form of

        national conferences which would be held throughout the year and involve

       the various research and service and educational activity of the units.

        It is apparent in consideration of this report that the research activities

        discussed are those of the optimal center.  In this case, consisting of

        a senior faculty of 4 rheumatologists, 2 orthopaedists and one psychologist.

        It is clear that funding may be limited and that faculties of this sort would not

        be likely except under very unusual circumstances.  Unde-@-hese-res-tr-i-c@ns,

        i-t@@@en@-ea-sonabie


         In review of the types of research activities that are performed by the Arthritis
         Center, it would seem logical that the patient.-oriented activities be essential.
         Specifically, the epidemiologic, demographic, psychosocio, analytical, biological,
         and natural history studies.  In addition, those activities related to patient
         management would be logical and since the general plan is to form the measurement
         research as a cooperative study, this also would be an essential function.  In
         terms o-f,the basic -research -activities, these would clearly be optional, partly
         because funding would presumably come from other sources and could be considered
         dependent in a way on.the activities or interests of the individual faculty of the
         Center.  The final areas would be optional, research and education.  The optionality
         of this area would be based principally on the relatively small number of

         individuals in the fields of arthritis and orthop.aedics who are competent to

         perform such research.

                                                    Respectfully submitted,

                                                    Henry [4ankin, M.D.


       l@',,er,ibers: Calkins, Chri.stian, Funl,, D. Murray, Pigg, Polley, Rodnan

       I.  DEFINITIO!I OF TfiE PROBLEM

       It is generally agreed that there is at the present time an inadequate number of
       rheupiatologists to meet the demands presented by patients with rehumatic diseases.
       The gap between the number of available rheumatologists and the number required to
       meet the need of patient care is projected to increase, rather than decrease.

       The Committee discu@sed the report entitled Professional Manpower in Rheuniatology
       published by The Arthritis Foundation in January, 1973.  This report cites the fact
       that one quay-ter of all medical schools lack organized rheumatology units with full
       time faculty;  Even in those schools which do have rheumatology programs, the number
       of faculty is too small to meet the needs for teaching.   As a result, the amount
       of time devoted to studying musculosketal disease is inadequate.  Specifically, as
       of 1971, medical students received.rn -'clie average of less than 12 hours oil classroom

       'training in musculosk-etetal diseases  in the pre-clinical years.  Less than 10% of
       the students received additional clinical teaching in rheumatology in the clinical

       years.

       On Jt-.Iie level of house staff training , even in those schools with active full time

     @'rheumatology units, less than half of tile medical residents have formal rotations

       through the rheumatology service.  An even smaller percentage  of time is spent
       in rheuinatology in training programs in Pediatrics, orthopaedic surgery aind family

       medicine.

       In the area of post-residency training, in 1971 there were 152 graduate fellowships

       and traineeships in rheuinatology. Approximately half of these were supported by
       USPHS training grants.  ('Irhis lattet program is scheduled for discontinuatio,'l in 1976.)
       Although some additional support may be provided thcough hospital residenc-ies, this

       program too, is meeting with serious financial constraints.  It is obvious that under


       and traineesilips in the field of rheLlMatOlOgy starting in 1976.

       It should be noted that there is a direct relationship between the number of fellows
       and trainees receiving training in rheui,iiatology ai!id the number of specialists
       entering the field.  A survey was tal@en in 1971 of 61 trainees and fellows', supported
       by tllli training grants, who terminated their training in the calendar.yeav, 1969.
       INforination was obtained from all but two of these.  Ten reported career decisions
       were postponed due to military service, further training, etc.  Of tile remaining 49,
       43 reported significant teaching or research responsibilities;  of these, 32 were
       in full time academic positions.  Of these, 21 i,,,ei-c in the fidld of rheumatology; 3 in
       related fields.  Thus of 61 PHS  supported trainees, 21 (or one third)  had entered

       full time academic postions in rheumatology.

       Post-graduate programs for practicing physicians:
       Although there has been a striking increase in the number of post=graduate courses
       in rheumtology, opportunities for graduate preceptorships for practicing physicians
       have been few.  In the opinion of this subcommittee, these latter prograiii@.-are much
       more effective and should receive greater attention in the future.

       Allied Health:  The deficiencies noted above, for medical students  and physicians,
       are even more apparent in the allied health disciplines.  Although  there was an
       initial spurt in this regard, when the Arthritis Foundation's Centers were initially
       funded, the scope of these programs has become markedly reduced as the funding for
       each of these Centers has been curtailed.    These deficiencies will be further
       accentuated by new trends in health care  (increasing emphasis on comprehensive
       continuing care of patients with throni-c illness, on ambulatory care, and on efforts
       to keep patients out of the line of hospitals).     With this, there is an increasing
       appreciation of the need for allied he',t,th professions as members of the patient care
       team.  Furthermore, as new health care legislation emphasizes public education, these


       wiii bg increasing expectation, on the part of patients viith chronic illness, for
       comprehensive care.  These trends will inevitably result in the further accentuation
       of the needs outlined above.

       Facilities:  Oppor'tunities to move ahead in this area are limited, at. the prese@t,
       not onlyby deficiencies of faculty, but also by apooit  of appropriate facilities
                                                             y
       for  these  educational programs.

                             S 0 L U T I 0 N

          It seems self-evident:
          a.  That educational programs need to be coordinated,  several being carried out
       in a given locus or center.
          b.  The total renge of educational needs is probably too great to be accomplished
       by a single pattern of centers.

          It is further self-evident that appropriate patterns of funding are not prese ntly
       available to accomplish these goals'.  Increasing s@ortage of research funds has
       long since prevented the previous (and regrettable) pattern under which these funds
       were used to support education and patient care.  In addition, use of patient.care
       funds to provide support for education is also being challenged.

         Specifically, we recommend the following:
         1. Sipport for the establishment of  rheumatology  units in those medical schools
       currently lacking arthritis units.
         2. Strengthening of presently existing units  so  as  to improve teaching and
       to permit expansion of the teaching of medical house staff and allied health professionals.
         3.  Increasing support for the training of fellows in  rheumatic disease.  In
       rheumatology.  The need , here, is particularly acute @i-i view of the phase out of the
       USPHS training programs planned for 1976.
         4.  The development of satellite centers, hopefully but not necessarily connected
       with medical schools.  These Centers will provide a setting for the education of allied
       health professionals and local physicians.


          5.  It is the responsibility  of educational institutions not only -'U'O focus on
       the dispensing of care  but also.on the evolving knowledge of basic-. human biology.
       This emphasis in research is important both for the intelligent application-of
       presently available methods and also for the evaluation of new ways to prevent and

       treat disease.

       The goals outlined above cannot be met by a pptterii of support which is restricted
       to one or a few of the multiple disciplines involved in exemplary patient care
       teaching and research.  The establishment of multi-disciplinary arthritis centers
       should provide an   opportunity to strengthen each of the participating disciplines
       and also to foster the interface between these disciplines.  By teaching students
       of the various health professions in an atmosphere of reliance of one discipline
       on another   we will be encouraging  a pattern of cooperation which will@.
       Clearly be important in future approaches to heal@h care.


         April 1, 1974           DISCUSSION GROUP 4 ........ LOCATION OF CENTERS
         Participants:  lleiss, C. Smyth, Heiiciei,sot-1, W. Murray, Spear, Austen, l@iolkon-@ky, Ziff)

         The specific response to the questions of  location'oi4 the arthritis centers must be

         broadly based generalities.

         The Committee addressed itself to the following questions:

         I.  SHOULD THE CENTERS BE FREE-STANDING AUTONOMOUS Ui'4II'S?
         (a)  Physically? -- A Center need not be a free-standing institution.
         (b)  Organizationally? -- There must be a fiscally responsible organization in which
              the principal investigator or co-principal investigators function.  This should
              be the governing body of one of the institutions under which the Center operates.
              Such an institution should be either a University or Hospital or a Foundation.

         11.  CAN MULTIPLE MEDICAL FACILITIES BE USED BY  A S114GLE CEN-IRER?
         There may be more than one institution involved  and the center must have Multi-
         disciplinary capability.

         III.  POPULATION REQUIREMENTS
         A population base of from 500,000 to 3,000,000 appears to be necessary to support
         the service requirements of the Center.  These figures may be altered in sparsely
         populated areas or under certain special circumstances.


        Page 2

        IV.  SHOULD THE CENTERS BE 114 MEDICAL SCHOOLS?

        The Centers should have the "core" activities in a medical school or in an institution

        equally qualified to engage in or administer teaching, research and service.

        V.  GEOGRAPHIC DISTRIBUTION

        (a)  Precise number or location of centers is difficult to define at this time and

             may depend on many factors.

        (b)  A broad distribution of centers across the country seems rise

        (c)  The precise location of individual centers in a region will probably depend on the

             strength of the application and on the activities encompassed by the

             institutions inal,,ing the application.

        (d)  Individual applications for center designation and funding may represent tile

             combined efforts of several institutions with an appropriate central organization

             and administration.

        VI.  IS THE LOCATIOli OF A CENTER TO BE DETERMI14ED BY:

             (A) PATIENT CARE FACTORS?  (B) EDUCATIONAL NEEDS?  (C) RESEARCH FACTORS?

        The location of the center should depend upon strength in all three of the areas of

        research, education and patient care.  There will be individual differences in

        capabilities in the three areas but all must be represented.


          DISCUSSIO,'I GROUP 5      COVi,,,iL'@IITY REI-Al'IO@iSlilPS

          Preamble:
          Fundamental to the establislimei,,t of good coi-qitiutiity,relationships is the proper
          structuring of the center program..  We recognize that the importance of basitig
          these centers on local needs and capabilities. Size and nature of the community
          involved need to be considered.  Some centers will be primarily concerned with
          patient care, clinical research and education on a local level, while others
          with more sophisticated facilities will be capable of more advanced education

          and basic research as well.

          The basic unit would be the acute care hospital facility and locally concerned
          physicians, and Would be applicable to both small and large communities.  Regions
          of  large populations, however,.would also requjre cooperative correlation of
          capabilities with controlling boards of directors.  Maximum efficiency could
          be best obtained by coordination of the entire program at the national level.

          The basic center should be oriented toward patient care and interface with the

          community on this basis.

          Difficulties with physicians interested in the care of arthritic patients
          should be best avoided by including them within the center program pending their
          interest, demonstrated qualification and competence and cooperation in observing
          established protocols of patient care and-data gathering

          Little difficulty in relationship with primary carp physicians is anticipated


          -2-

          provided good to and fro communication is maintained.

          The center must" accept its responsibility for the continuing education of
          professionals, allied health personnel and the public on advances in management

          of arthritic patients.

          The panel felt that f@o public information was important both at a local and
          at a national level, and should be concerned with the problem presented by
          rheumatic disease, and that something could and should be done about it.

          Where arthritis foundaticnchapters are strongly-organized and functioning, they
          should be used insofar as possible in the structuring of the arthritis centers.
          Where such chapters have failed to function, the center should seek to strengthen
          their role.  The chapters through their relationship to the parent Arthritis
          Foundation,. should provide a means for administrative relationships with
          other centers and with the national coordinating council.

          Local Rheumatism and Orthopaedic Soci eties should be used for continuing
          education and for liaison between centers.  The use of a con-non (computerized).

          data base would facilitate such communication.

          Meeting the consultative needs of the community are felt to be an inherent
          responsibility of the arthritis center.


         -3-

         Chronic disease hospitals and universities, however, should be redesigned

         or modified to-meet the needs of the arthritic patients  DorMciliary care
         alone should be avoided wherever possible.  Hospitals should be included in

         the arthritis center program.

         For home care, the use of already established visiting nurse services and

         hospital based home care programs should be encouraged by the arthritis center.

         Satellite clinics should be included in the concept of the center with emphasis

         on the education of local medical professionals and allied health personnel

         to provide local capability to take over the care of the arthritic patients

         with assistance from the center.

         The team should consist of consulting rheumatologists and orthopaedic surgeons

        w ith paramedical personnel, and when it becomes practical, 2-way T.V. should

         provide a useful means of communication.

         As the need arises in outlying communities, i-heumatologists should be situated

         in them, fltxt as need dictates.

         Basic premises to the success of the entire arthritis center concept is open

         communication and a spirit of cooperation..


       GROUP 6    -CRITICAL MASS IN CEIITERS

       Christian, Englenian, McCarty, D. Murray, Pol'tey, Shields, Sledge, Siiobe, Spedr

       Critical mass is inter-related with the other factors which have been.addressed
       by other discussion groups but we are agreed that there is a critical mass needed
       for each of the three main areas of consideration:  research, education and

       patient care.

       BEDS
       Protected beds is considered to be the key to the successful development of an
       economically viable unit.  The number of beds is tied to the size of nursing units
       for specialized care.  This is of the order of 12-20 beds or multiples thereof.

       There was unanimity of opinion that medical and surgical beds could be combined
       in a rheumatic disease unit, provided that the orthopaedic beds were related to
       arthritis.  The 2-6 additional beds are suggested for clinical research but
       ideally they should be geographically attached to the nursing unit.  An extended
       care facility geographically in proximity to the center with approximately the
       same number of beds as the center is also considered valuable and important economically
       for optimal utilization of the facilities of the unit.

       STAFF
       The staffing of an ideal rheumatic disease center would  include   (1) a director
       who most likely is a rheumaiologist who has demonstrated a scholarly and critical
       appreciation of rheumatic diseases;   (2) an assistant director who is capable
       of leadership functions in the absence of the director and vilio  also is a
       scientifically oriented physician.  (3) two other full-time staff physicians with
       rheumatological training and expertise.  (4) one staff o-..-thopacdist experienced


        and qualified in reconstructive orthopaedic suroery ircludng [land surgery
        in the minimally sized unit.  Specialized hand surgeons should be available for
        consultation and, in a larger unit, a full-time hand surgeon viould be expected.
        (5) all other medical consultants including rehabilitation medicine, neuro ogy,
        psychiatry and other components of a medical center too numerous to mention are
        expected to be available when needed.  The concepts of rehabilitation medicine
        are expected to be utilized in an arthritis center in order to restore each
        patient to his or her full-est potential in society.  In different situations,
        rheumatologists,  physiatrists, physical therapists or 6thers interested in re-
        habilitation could and do fulfill this requirement.

        (6)  Allied health personnel needed include:  (a) one nurse practitioner on a
        full time basis for the minimally sized unit.  The Nurse Coordinator it the
        liaison between the patients and the professional.staff.  (b) the critical mass
        for the 20-bed unit with 6,000 out-patient visits per year is three physical
        therapists.  (c) a medical social worker also is considered to be essential2as
        are nurses, nurses aids and clerk-typists.

        Allied health personnel serving consultative functions essential to the unit
        include occupational therapists, orthotists, rehabilitation counselors, clinical
        psychologists, podiatrists, systems analysts (or other experts in data collection
        and retrieval).

        (7)  Also included in the staff roster would be four riieumatology fellows who
        also participate in on-going research programs, and, on rotational assignments,
        available house staff and medical students.

        (8)  The critical mass for a rheumatology unit should also include a small service
        type laboratory capable of performing low volume, highly specialized procedures;


        two technic ians and 200-600 square feet were considered appropriate.

        POPUT.ATION BASE
        The population base to support a 20-bed unit was considered to be from 700,000 to
        1,000,000 persons.  A single hospital base  which includes all the critica
        components for the unit is.recommended. Satellite, out-reach programs  would  be
        considered highly desirable in order to extend the center's function to a  wider
        population base.  The center's function should include exemplary patient care
        but this is not incompatible with the development of areas of special  research

        interest.

        FUNDI[IG
        The 20-bed minimally sized unit was divided into six beds for orthopaedics  and
        14 for rheumatology but with flexible exchange from time to time, plus two  beds
        for clinical research.  The minimal self-supporting full time staff would include:
        one orthopaedist, three rheumatologists, three physical therapists and one
        occupational therapist.  The budget for staff beyond that supported by third party
        carriers would include:  1/2 time orthopaedist, two rheumatologists and one physical
        therapist, four fellows, one nurse practitioner and one social service  worker.
        These minimal projections can be extrapolated  up to the size of 80 beds at which
        point'a bioengineer, vocational rehabilitationist, a coordinator or director  of
        education in nursing and physical therapy would be needed and could be justified
        by the increased size of the unit.

        The Satellite participants in the center program would be self-sufficient at
        the patient care level but provision needs  to be made for educational functions of
        the satellite participants both in their community hospital and in the  center.

        It is suggested that existing centers add only those components needed to achieve,


                                                                                f  T--

           GROUP 7:  (t@,eiTi!)ers: Clayton,' Decker, Smythe, 1,@leincr, I-leiss, Ziff)

           The meeting was opened by a detailed report from Doctor Smythe who reviewed
           experience in Canada.  This provided very helpful guidelines for the discussion

           of the Committee.

           The subject on the agenda which took up most of the discussion time dealt with
           the first topic: "The Internal Structure of the Unit    In agreement with the
           recommendations given by the Committee on Location of Units, it was agreed that
           the units could exist in either a medical school, a hospital appropriately
           qualified or in an institution under the direction of a foundation.  The fiscally
           responsible body would be the governing body of the institution.  Under the
           governing body, the direction of the unit woul-d proceed through the Dean or
           the appropriate administrator.  In direct charge of the unit would be a Director.
           The Director would be either an internist or an orthopaedic surgeon, depending
           upon the character of the institution involved.  Assisting the Director would be
           an Administrative Assistant, a secretarial staff and computer specialists.  The
           computer services would consist of data analysis, record keeping and evaluation
           of patient care.  The Director would be advised by an Advisory Committee.
           Suggestions for membership on such an Advisory Commitee would be the Dean or
           Administrator or their respresentative, the Chairman of the local Arthritis
           & Rheumatism Chapter's Scientific Committee, one or more rheumatologists in
           practice  the head of the local Visitin@ Nu rse service, one or more members of
           the faculty and one or more patients.  Other possibilities for membership are

           open.


           -2-

           There would be three sections under the Director.  First, the Research Section.
           This would be concerned with rheumatic disease-oriented research both basic and
           clinical in type.  It would include orthopaedic-oriented research.  The
           Research Section would be responsible  for  the  maintenance  of  a  diagnostic

           laboratory.

           Under the Director there would also be  a  Clinical  Section  with  a  clinical
           cbordi nator who would not  necessarily  be  a  physician.  The  Clinical  Section
           would consist of one or more out-patient clinics, preferably combined clinics,
           in which the various disciplines would be represented.  It would also be
           responsible for in-hospital patients.  The Committee felt that the staff
           should meet at least once a  week  for  combined  rounds.  The  Clinical  Section
           would also offer  consultation  services  to  hospita.ls (both local and regional),
           to physicians in private practice (both  local  and  regional)  and  to  Health
           Maintenance Organizations.  Represented  in  the  Clinical  Section  should  be
           at least  two rheumatologists and one or more orthopaedists.  Radiology,
           Physiatry, Pediatrics,  Clinical  Psychology  and  Clinical  Pharmacology  should
           also be represented as indicated.  Allied health personnel should include one
           or more nurses, physical therapists, occupational therapists and social workers.
           An orthotist should be available.  The allied health professionals should be
           supervised according  to  conditions  prevailing  in  the  institution.  However,
           at least one 'Individual in each category should be permanently assigned to the
           unit.  Others may rotate through the unit.


           -3-

           The Director and his coordinating body would also be responsible for a program
           of education.  The education would be directed at medical students, house staff,
           fellows, allied health professionals and physicians receiving continuing education.
           Patient, family and community edu cation should also be a function of the center.

           The maximum and minimum budgets were calculated.  A maximum budget was calculated
           for a program which would include 8 staff members, 8 fellows, 4 therapists,, 12
           technicians, 3 laboratory aids, ad administrative secretary and 8 additional
           secretaries, 2 nurses and 3 clinic clerks.  The cost for this personnel would
           be $725,000.  A minimum budget was calculated listing 4 staff members and a
           substantial reduction in other,personnel.  Thi's personnel budget came to $417,000.
           For both budgets, an equipment item of $100,000 and a travel item of $35,000
           were estimated.  The travel item included staff travel to conferences, staff
           travel regionally for educational purposes, including honoraria, and patient
           transportation.  A miscellaneous budget including publication costs,
           consultants fees, phone service,etc., was calculated in both budgets at
           $9,000.  The maximum budget totalled $869,000;  the minimum budget totalled

           $561,000.

           The Comittee was aware that a fraction of these costs would be recoverable
           through patient charges but felt that its primary function was to provide the
           structure and the cost of a center and to leave decisions as to the details of

           funding to the local institution.

           The budget may vary, of course, in different institutions.  For instance,


           -4-

           education of allied health personnel may have to be underwritten in certain

           institutions.  In others, the continuing education of physicians in practice

           may need to be underwritten.

           In conclusion, the Committee felt that there should be a designated Director

           but that the unit would function best as a "family" of investigators who would

           serve as a coordinating body.  For this reason the Committee did not include

           an executive committee in its structure.  Finally, the Committee felt that its

           guid elines were flexible and that their interpretation and execution would
           vary in different institutions, depending on locally available talent and

           facilities.


            DISCUSSIO'll GROUP 8:@ FUNDING              <
                                               selflnot to,@llocaLioti of funds-,,,bu-t--!-p,\.-iyure-',,y
                    The committee addressed it
                                     ecau'e centers will vary in size and content, these sources
            to the sources of furidsirb@

            of funds may vary accordingly.

            1.  How do center furids-relate to other sources, e.g., third-party payors?
                     Other sources besides third-part'y sources include Arthritis Foundations,.
            funds (private sector, community funds, etc.); other agencies (private, suc  as;K
            foundations, industry, women's clubs, etc., and other voluntary agencies, such asK
            Easter Seals); local and state agencies (such asK those for the aRn care of the
            handicapped, medical and vocational rehabilitation, visiting nurses  associat ion,
            etc.,); and federal patient care and research funds.
                     Third-party payments should be used for  all  reimbursable  expenses
            and efforts should be made to expand coverage'byt such payors for chronic
            diseases,x such asx arthritis.
                     Center funds, proper should go to expanding non-reimbursible education
            and research costs aimed at improving the care of presently unreached and un-
            reachable patients with I rheumatic diseases, and at least partly should go for
            the development of innovative methods in every area of research9  prevention,
            therapy and delivery of care.

            2.  When should what patients be supported by center funds?
                     Patients should be supported by center funds only in centers that'don't
                            and only in exceptional.and selected instances, for resear
            haveil@ff@j f unds,.                                                      ch and
            educationX not covered by existing servi ce care payment sources.

            3i What laboratory tests should be supported by center funds?
                      As for laboratory tests, center funds may be used for the development
            and demonstration of t new and improved methods of laboratory testing for diagnosis


                                                -2-
           and evaluation of rheumatic diseases.  Center funds may also appropriately be

           used to establish
                            ,where needed,,a regional center laboratory to provide laboratory
           services for outlying hospital S@ with the goal of later self-sufficiency.

           4.  Define center responsibility for pati etit care.
                     It is recognized that existing centers are already actively engaged
           i n and res pons i bl e f or thei r own provi s i on of pati ent career n t-the.i,r-,Own@-
           sate.l@li@te-..-f-,ac--i7l,-+t Center responsibilities should include the setting and
           improving of standards for patient care in these institutions,
                     While center funds should not be used for direct patient care, it must
           be recognized that many of these patients do have serious financial problems in
           underwriting their own care requirements, because of the c-r-on-lel-T-@ and disabling
           natu re of their disease,,which denies them the usual third-party coverage.

           S.  Cost and need for bed services?
                     We have'already stated abow our views on the cente@s areas of
           responsibility.  In these term  an average center mi ght be expected to require
                                          S/
           20 to 25 beds for research, education and specialized care in rheumatology,
           orthopedic surgery and allied health areas.
                     The cost of this number of beds is estimated at 1-1.5 millioni dollars
           annually, of which 50% or more may be reimbursable by tliird-party payments.  The
           remaining cost would be an appropriate responsibility of the arthritis center.
                     Equally important and appropriate would be X provision by the center
           and its affiliated hospitals of comparable support (ie, on the order of magnitude
           of a half million dollars per year per c-enter) for such things as ambulatory or
           out-patient research, education and specialized activities and demonstrations,"
           mid-way and extended care,,,,and related activities.

           6.  Need for internal review.
                      Depen ding upon the size of the centers,,certain funds may be necessary

                           i


                                              -3-
           to provide administrative reviev@both fiscal and scientific.  In addition, the
                                                   itution (University, hospital or
           governing body of the administering inst
           foundation) has, by law, a responsibility and accountability for fiscal review.
           It will be the specific responsibility of such reviewers to insure that fund
           application is in full xoquix compliance with the requirements of the funding

           organization.

           7.  Administrative needs for above.
                     Where the'size of the center warrants, a special' skilled administrator

           of funds should be provided.

           CONCLUSIONS:
                     1.  Centers to be funded should be full range in fact as well as in

           name.
                     2.  Funding of such 'centers should be at a level such as to permit the
           development of a broad range of centers geographically and demographically.  It
                              xample, that if $20 million              ally-were to be mad e
                                                         ,4,@
           is suggested, for e                            . @ollars annu
           available, the funding of 40 such centers would be appropriate.
                     3.  Funds received from federal or other comparable sources should be
           regarded as "seed money" in the sense that every effort should be made to develop
           substantial additional funds.


           GROUP 9...... (Members:  Bateman, Cilkins, Nickel, Litienberg, Pigg,
           Shulman, C. Smyth, Vaughan)

           The key to the Center concept is the development of a complex but essential
           sot of relationships.  These relationships are in large measure, positive
           relationships, that is, things to do to achieve success.  But also of importaii ce
           are to list some things that would be important to avoid.

           Many of these relationships already are formed and the programs would build
           on them.  Others would, of necessity, be new relationships to be developed.
           It is well to think of the relationships in four main headings as
           relationships to: (1) academic institutions, (2) primary care physicians,
           (3) different political organizations and (4) the consumer.  It is the opinion
           of the group that these relationships, in general, are quite obvious and have
           been discussed by other groups and will be discussed again and again so that
           enlargement of these in themselves would be inappropriate at this time.

           To foster the all important relationship with the community, we believe it
           should be emphasized that these groups should be encouraged to participate
           actively in the center and become, in fact, a part of the center activi'ty.
           By this, of course  we mean the local Rheumatism Societies and similarly
           involved organizations.  We would again 3ike to emphasize as was done
           yesterday, that a center is not just a single unit but could well be a variety of
           types of organizations, including related institutions of different degrees of
           sophistication and different types of facilities for particular activities.


           -2-

           It was emphasized that-. the cost of building facilities is considerably less than
           the cost of one ordinary acute hospital and several of the group emphasized that
           the type of facility is often quite different than that needed for the acute

           medical or surgical ward.

           Do ctor Bateman pointed out that the word "autonomous" might be better to use
           than the phrase "free standing" as having probably considerably less of a negative
           feedback in the relationships of the four types listed above, while still
           maintaining control of its own activities as far as patient care is concerned
           as well as education, research and particularly fund raising.

           Five  criteria were developed which were felt to be appropriate in the development

           of a center:

           1.  The relationship with the university or educational institution.
           2.  The critical mass of clinical disciplines and their interrelationships --
               being identified as a categorical unit.
           3.  The educational programs. This has also been emphasized on a number of
               occassions and includes the medical student, house officer, feljows,
               continuing education of physicians, allied health Professionals and the

               public.
           4.  Research, both clinical and clinically related research, emphasizing
               that each center would have at least one or two particular areas i.-n
               which particular attention was paid to some avenue of inquiry.
           5.  Community relationships which were well covered in the discussion yesterday.


           -3-

           Probably one of the best examples of a good relationship that would develop in
           centers is exemplified in a meeting such as this in which the  different
           disciplines such as Rheumatology, Orthopaedi(s and Allied Health met  to

           achieve a common goal

           Some dangers need to be stressed.  Probably one of the greatest is the image
           that centers could create in the ininds of practicing r4eutiiatologists,
           internists, as well as the large number of practicing orthopaedists and the
           public at large.  Namely, that the centers would somehow undertake to care for
           the vast majority of patients with rheumtological disorders and thus would

           develop to enormous size.

           It was the understanding of the group that in no way would the centers be more
           than models of care and development of excellence in the relationships already
           outlined but with emphasis that those interested and knowledgeable in
           rheumatological diseases would be actively invited to participate in tile
           activities of the center. Even the very largest would only  care  for  a
           relatively small percentage of the total problem.

           Another danger the group discussed was that somehow the  image might  be
           projected that this would be used as som@ sort of gimmick.to continue the
           type of basic research that has fallen into disrepute when, in aetual fact,
           the'act clearly outlines that basic research related to clinical problems would
           be very actively supported.


          -4-

          It was also emphasized that one of the dangers was that these funds might
          be construed to mean just  continuing programs already in existence, rather
          than fulfilling goals of this new legislation to develop new 4140 programs

          and improve already existing programs.

          There was a constant repetition and emphasis of the fact that there needs to
          be a great degree of flexibility permited with the likelihood that the
          diversity, etc. would actually enhance the eventual development of optimum
          models that other, possibly less successful centers, could then follow.

          A final point that directly bea rs on the emphasis of relationships is that a
          center is an organizational plan rather than just a facility.


      Discuss4lon Group 10 - Evaluation of Centers
                                              i
      Prepared by Dr. F         Gatter,,Dr. Howell, Dr. Manken, Dr. Murray and Dr. Austen
                       unk, Dr.

      1.  Internal Audit of Activities
                The internal audit of activities must be both quantitive and qualitative and
      in terms of patient care objectives, education and research.  As regards       eat  care
      from a quantitive point of view, this would merely be ennummeration  of  the  ambulatory
      and in-patient populations under going surgical and medical care.  With respect to
      quality, this would include the usual activities, such as,, review, record audit, (which
      may well move to Professional Standards Review Organization control).,laboratory
      quality analysis and morbidity and mortality conferences.
                With respect to educational objectives, the quantitative analysis would be
      in terms of numbers of medical students, post graduate fellows,  clinical  and  research
      in orientation practicing rheumatoldgists  and  reconstructive  orthopedic  surgeons
      in continuing education)-.a-.nd allied health personnel being developed, and education
      in an out-reach sense of physicians in the community and  region.  With  respect  to
                  he education py    am, this can be evaluat@d utilizing  the  in-training
      quality of
      evalu       r-a(jrams.al-l- also recommended for allied-hel-p professionals while the
           @ti   p
      use of self-assessment may suffice  for medical rheumatologists. It  is  even  hoped
      that self-assessment examinations can become a part of the out-reach program to
      a$@ess the knowledge of individuals before and as a consequence of th6ir experience
      with the center. The quality of continuing education  programs  could  be  evaluated  by
      the pupils and some insight in to the overall educational program  can  be  gained  from
      the number of conferences and the ratio of the faculty to  various  student  groups.
                With regard to basic and                     the evaluation would be along
      existing NIH progress report lines with consideration of both the quantity and
                                                               .0 a, 2@ll
      quality of the activity.   As                   recommenda-tiorf-of discussion group #1
      attention would also be directed to accomplishments in treatment-oriented research,
      measurement techniques with data retrieval and research  in  education;  the  evaluation


                                            -2-
      of these effo rts will be in(-,@re readily apparent from an external r,eview than perhaps

      internally.

      Unit Item #2:  Utilization of Beds
               The quantitive aspects of this are merely an accurate description of how the
      beds are utilized in terms of number of beds, occupancy rate, and distribution on tile
      basis of diagnosis or specific protocol.  As regard the beds for patient care and
      teaching, their description should be further broken down into acute, extended@self-
      care, and chronic.  Research bed days refer to hospitalizations-required for an
      investigative and treatment protocol not of such a nature as to be properly reimbursed
      by a third-party.  As regards quality of utilization, the panel introduced the issue
      of a calculation of cost per day per bed, but more importantly cost per hospitalization
      for a specific clinical diagnosis.  Equally important in the long run, if utilization
      is to be evaluated on a cost basis would be a calculation of the cost per yeECr for
      specific clinical diagnosis so as to take into account the relationship of ambulatory

      to in-patient care.

      Unit Item #3:  Center Performance
                Comparative evaluation of center performance by an external audit in the
      area of patient care would require on a mandatory basis that all centers agree to
      participate in a uniform evaluation of patient disability upon entrance and re-
      evaluation at various stages in subsequent years.  Specific measurement techniques
      should be uniformly applied so that objective data could be obtained and made available
      for computer'processing and subsequent retrieval.  The data would relate to the effect
      of center care on disease activity, functional capacity of the patientjob stability,
      and economic implications.  Without a uniform reporting system suitable for computer
      analysis and retrieval, it would be impossible to achieve a comparable evaluation cf
      performance between centers.
                With respect to center performance in the area of education, this would
      include definition of the number of individuals trained in medical, surgical and


                                            -3-
      allied skills and their current roles.  It would also include the performance of
      house offices on in-service, training evaluations or board performance and for any of
      the groups in self-assessinent examinations.  Research should be evaluated not only
      in terms of quality, but with regard to its relevance for the intent of the center
      program, which is directed to more effective prevention and treatment of the rheumatic

      diseases.

      Item #4:  Impact of the Grant on the Center
               The former seemed a more suitable heading for Item  #4  than  "Accomplishments
      and Waste", which has been deleted.  In order to examine the effect of the grant on
      the Performance of the center in terms of its specific,,fheumatologic and reconstructive
      surgical mission, it would seem essential to have a site visit prior to the  award  and
      subsequent one or more visits by a team constituted at least one quarter by original
      site visitors.  The impact of the grant on the center will be appreciated by changes
      in quantity and distribution of personnel, alterations in location or  distribution  of
      in-patient beds'. change in physical facilities, development of supporting laboratories
      and relationship of the ambulatory care programs to the in-patient activities.  In
      addition, the effect of the grant award on the other support of the center should be
      determined, as well as the impact of the center on other functions of the general
      health facility, such as, consultative patient care, education, and colaborative

      investigative programs.
      Item #5:  Record keeping, Item #6:  Disability Evaluation, and Item #7-  Economic Benefits
      cahhot be determined in a meaningful fashion unless there is full commitment to
      Item #3, namely, a uniform data base lending  itself to a central computer measurement.
      @ndeed',,would be required that all centers participate ih@-e-tt-i-ng-up uniform standards
      and a data base suitable for recording by a central computer.  The computer data
      should be suitable for retrieval and evaluati on by all concerned.  To  establish  this
      uniform data base and computer recording, it is the unanimous recommendation of
      discussion group 10 that a joint conference committee be established  at  the  earliest


                                             -4-
     .possible opportunity.  Indeed, this must reach the stage of implementation prior to
     the initiation of the centers, if we are to objectively document tire results of
     current treatment modalities and to evaluate the effect of introducing a Center
     program.  Such a data base and recording system would permit a more accurate assess-
     ment of the clinical gains and economic benefits of the Center program.  Evidence
     of clinical gains would be an important data base along with education and research
     accomplishments in the renewal evaluation.  Perhaps more important, such data would
     constitute a strong arguement for gaining additional support for center programs
     in order to achieve a wider distribution and availability.