A R T H R I T I S    C 0 N F E R E N C E

                                            on the

                                   Pilot Arthritis Initiative

                                     January  19 - 20, 1975
                                      Kansas City,  Kansas
                                        Muehlebach Hotel

                                      Conference  Sponsors

                                      Arthritis Foundation
                            American Academy of Orthopaedic Surgeons
                            Participating  Regional Medical Programs

                                        Conference Hosts

                                Kansas Regional Medical Program
                           Kansas City Division, Arthritis Foundation


                                                CONTENTS

                                                                       Paae
                     Subject
                Conference Summary                                      1-2
                Full Conference Report                                   3
                Selected Program Descriptions                           3-5
                Workshops, January 19                                   6-16

                     Physician Education
                     Allied Health Education
                     Patient Education
                     Demographic Factors
                     Arthritis Services
                     Service Deployment
                Panel Discussion - Program Evaluation                  16-18
                                      and Assessment

                Workshops, January 20                                  18-25

                     Program Documentation
                     Special Report Opporutnities
                     Care Delivery Initiatives
                     Program Continuity


                              Conference on the Pilot Arthritis ProEram
                                        Kansas City, Missouri
                                         January 19-20, 1975

                                      SMIARY OF THE CONFERENCE

              Representatives of 62 pilot arthritis projects being carried out   in
              29 Regional Medical Programs (RMP's) convened in Kansas City, Missouri,
              to exchange experiences, and to develop cooperative methods to facili-
              tate optimal program outcomes.*  The pilot arthritis program was ma e
              possible by a special, one-year earmark of $4,500,000 in the 1974
              appropriation for Regional Medical Programs.  These  funds  represent
              the first significant nonIresearch Federal su port to  the  arthritis
                                                           p
              disease field. Thus, the program presents  unique  opportunities,  the
              realization of which are not assured unless the program  is  continued
              and documentation is accomplished for projects, and the aggregate pro-
              gram..i/

              In recognition of these needs, and the one year period  to  accomplish
              program objectives, the Kansas City conferees ratified resolutions
              relating to the immediate needs of the arthritis program,  and  longer
              term requirements for effective arthritis care planning and delivery.

                 *Other participants represented: The Arthritis  Foundation  (Ar,);
                  American Academy of Orthopaedic Surgeons (AAOS)4,  representatives
                  of Arthritis Foundation Chapters; the Public Accountability
                  Reporting Group (PAR); National Institute of Arthritis Metabo-
                  lism, and Digestive Diseases (NIAMDD); and the Division of
                  Regional Medical Programs (DRMP), the pilot arthritis  grant  pro-
                  gram sponsoring agency.

                1/ In the 1975 supplemental appropriation for the Bureau  of  Health
                  Planning and Resources Development, HRA, $4,500,000 was authorized
                  to continue the pilot arthritis-program.


             Immediate needs:
             1.  The pilot arthritis program must be documented, assessed, and report-
                 ed to physicians, allied health personnel, and medical and health
                 administrators.

             2.  Pilot arthritis activities must be kept active  until  documentation.
                 and assessment can be completed.

             3.  Documentation of the pilot arthritis program should  be  actively
                 supported by the participating projects and programs.
             4.  Third-party reimbursement for arthritis services must  be  developed.

             Long term needs:
             1.  Successful pilot projectsshould be phased into future medical care
                 systems.
             2.  Long term goals for delivery of care to patients should be formulated
                 and disseminated.

             3.  A national clearinghouse is needed to collect and code arthritis
                 patient education material (both printed and  audio-visual),  and
                 to.list alternative modes of treatment and methods of  care  delivery
                 which have been attempted.

             4.  A uniform arthritis data collection and reporting  system  should
                 be implemented.
             5.  A resolution must be achieved on the legal status of professional
                 allied health and paramedical personnel as care  delivery  extenders.

             The pilot arthritis program has focussed on outreach to make maximum use
             of existing health resources, and thus bridge the gap  between  available
             therapeutic capabilities and the level of arthritis care being provided.
             The experiences of the pilot arthritis program assume increased importance
             in prospect of enactment of national health insurance, and  the  increas-
             ing average age level of the U.S. population.  The "National Arthritis
             Act of 1974" (P.L. 93-640) was enacted in January 1975, creates addi-
             tional pressures on the pilot activities to define methods to facilitate
             the application of increased arthritis research  through  coordinated
             community services.


                                     COMPLETE CONFERFNCE RR-PORT

               The co nference was convened to bring together decision-making individuals
               associated with the pilot arthritis programs to share experiences and
               problems, facilitate mutual assist&ce, and to explore feasible activi-
               ties which could be jointly undertaken to enhance program quality, and
               document the pilot arthritis initiative.  The conference Chairman was
               Dr. Roger D. Mason, Senior Vice President for Ilealth Affairs, Blue
               Cross/Blue Shield, Omaha, Nebraska.
               The conference was organized to address major aspects of the pilot arth-
               ritis program during the first day, and to develop in the second dayts
               activities general objectives, and methods to document program outcomes.
               The discussion perspectives of each days work can be phrased, respective-
               ly, "What do we have?",, and "Where do we go from here"'
               The Conference Charge was delivered by Mr. Matthew Spear, representing
               the Bureau of Health Planning and Resources Development (BIIPP\.D), Ilealtli
               Resources Administration (HRA).  The conferees were reminded that with
               the imminent phase-out of the Division of Regional Medical Programs,
               and the 53 RT's, the task of carrying the pilot arthritis program
               forward, and to realize its potential fell more fully to them than might
               otherwise be the case.  With RMP resources being absorbed in the newly
               authorized BHPRD (P.L. 93-641), documentati.on and assessment of the pilot
               arthritis program depends on cooperative efforts of arthritis program
               directors and concerned professional groups.  The experiences of the
               pilot arthritis program are anxiously awaited in view of.new information
               which this program might provide for future investigators, and as pre-
               paratory work in connection with the National Arthritis Act of 1974
               (P.L. 93-640).

               Special Arthritis ProRram Summaries
               The conference began with brief presentations of the activities and prob-
               'lein,s of five selected pilot arthritis programs.
               Dr. F. Richard Convery, University 14.ospital, San Diego, California,
               described how a pilot arthritis grant was being employed to establish
               a coordinated comprehensive arthritis care proaram.  Given excellent
               incenter resources of research. training . surgery, and rehabilitation,
               the program will mesh these functions into continuing patient services,
               including home care.  Allied health services, with rheumatologist and
               orthopedist cooperation, will provide continued contact and followup
               with the patient in his/tier environment to reinforce the special thera-
               peutic requirements with which each patient is variously engaged.


               To maintain the comprehensive program, it will be necessary to continue
               the program beyond the one grant year.  A cost evaluation program has
               been instituted to pinpoint costs, and develop a feasible charge system.
               The program has attracted a rehabilitation grant permitting complete
               development of allied health services.  A counseling program is func-
               tioning with Nurse, Social Worker, Physical  Therapist,  Occupational
               Therapist, and Vocational Counseller participation.  A home-bound pro-
               gram is developing, and San Diego employers are enthusiastically sup-
               porting a return-to-x.7ork program. By-products of these  coordinated
               activities include functional review of patients and an assessment of
               care screen, quantification Of i*Put components of treatment and care,
               clarification of important allied health roles in comprehensive care
               delivery, and insight into cost-benefit results of the arthritis program.
               Dr. Elam C. Toone, Jr., Medical College of Virginia, Richmond, Virginia,
               related the development in Virginia of a consulting specialist visiting
               team program operated cooperatively by the Virginia Chapter  of  the
               Arthritis Foundation, and the Family Practice Departments of MCV, and
               the University of Virginia.  The program is aimed at providing increased
               outreach of center arthritis specialities, and improving center-communi-
               ty communication for better patient care.  In the organization of these
               activities, the State was-divided into East, and West sectors, and clinic
               sites were selected to provide optimal coverage of patient populations
               obtainable with available resources.  It is anticipated that over 20
               clinic and physician colloquia sites will be visited one or more times
               during the grant year by arthritis specialists from the two universities,
               Norfolk, and Northern Virginia centers, where the clinic  program  is
               already oversubscribed. The program is well  received  and  actively
               supported by both physicians and patients.
               Ms. Janice Pigg, R.N., B.S.N., Columbia Hospital, Milwaukee, Wisconsin,
               is the principal investigator in a study to identify and measure the
               effects of nursing intervention in Rheumatic  Disease  patients.  The
               study is based on two patient populations in an acute  care  setting:
               early rheumatoid arthritis patients, and patients  undergoing  total
               hip arthroplasty.  A model of quality assurance is being employed to
               elicit patient outcomes as influenced by nursing practice.  A nominal
               group process is used by two participating groups of staff nurses in
               writing patient outcome criteria.  A statewide nursing advisory committee
               is reacting to the criteria.

               Patient outcomes are written from societal, professional and scientific
               values. These outcomes are then validated  by  retrospective  nursing
               audit. The degree of discrepancy between the  criteria  and  current
               level of nursing practices is@:assessed.  Selection and implementation
               of an alternative for changing the nursing practice is then made,  The
               result is improvement  in  nursi.ng practice.  This is a continuing pro-
               cess. The on-going review required increases  the  nurse's  knowledge
               about care of rheumatic disease patients, as well as sensitivity to,


            and perception of patient reaction.  By-products observed  in the  project
            include increased awareness of the nursing tole,  development  of  greater
            expertise in care by the staff nurses,-concurrent development  of  patient
            education, and broadened understanding of  patient  concerns  and  percep-
            tions.
            Dr Paul Young, Orthopedic Hospital and  Rehabilitation  Center,  Ashville,
            North Carolina, reported how careful organziation and  coordination  of
            physician and allied health personnel functions  in  an  arthritis  clinic
            permit the clinic physicians to competently handle two times  the  average
            patient load reported nationally for physicians, Dr. Young noted  that  if
            every renber of the ARA devoted full time clinical  rheumatology,  only
            one-half of the known treatment needs would  be  met.  Thus,  conventional
            physician utilization cannot meet the need, and  his  center  has  activ6l
                                                                                     @y
            developed allied health and private physician support  to  optimize  spec-
            ialist output.
            The hypothesis under which this development was begun some years ago, was:
            "Carefully designed, meticulously followed,  frequently  revised  programs
            of drug monitoring permits the use of allied health  professionals  for
            the monitoring of potentially lethal drugs with the degree of  risk  which
            seems reasonable from several points of view".  The  process  followed  by
            a registered nurse clinician, one of  several  allied  health  specialists
            utilized in the program, was described---from the  initial  patient  visit
            to care followup by the clinic or a participating family physic!-an.
            The key to effective operation of the  program  is  maximum  routinization
            of each step for diagnosis and assessment,  stabilization  and  treatment,
            and followup care.
            Allied health personnel services are developed  through  intensive  train-
            ing in the established techniques and methods that stresses rigorous
            adherence to protocol, and the use of prepr@Lnted prescription and  lab
            test and medication forms which serve both  patient  record  and  referral
            needs.  Nearly 70 local physicians participate in the use of these forms.
            Based on records compiled over the past 6 years, Dr. Young reported:
                1.  The number of patients the office can manage has more than doubled.
                2.  The treated patient death rate is below the  published  rates  for
                    treated and untreated RA.
                3.  Monitoring has shown that administration of  gold,  plus  cytoxin,
                    plus mexatricate under the rigid protocol is less hazardous than
                    the disease, or treatment with moderate  doses  of  steriods  even
                    with physician monitoring.


               4.  Expanded utilization of allied health specialties  has  permitted
                   the accumulation of data leading to important  modifications  in
                   treatment toward less hazardous modes of therapy.

           Dr. Balu Athreya, Children"s Seashore House, Atlantic City,  New  Jersey,
           discussed special needs which arise in the treatment of  children  with
           arthritis and outlined the operation of pediatric  arthritis  activities
           in the Greater Delaware Valley area (Eastern Pennsylvania  and  Southern
           New Jersey). Dr. Athreya estimated that there  are  approximately  175,000
           children with rheumatoid arthritis in this country, but noted that  data
           on this patient group is incomplete because in various surveys of chronic
           illness in children, arthritis is hidden under the general classification
           of musculoskeletal problems. Special problems  of  treating  pediatric
           patients were emphasized. Doctor Athreya noted that  children  learn  by
           manipulating their environment.  While well children can manipulate
           their environment, handicapped children cannot.  This  imposes  repeated
           interferences with their learning process.  Environment has to be
           brought to these children, and the environment may also have to  be  modi-
           fied to suit their needs.  Child patients also experience severe emotion-
           al problems and fail to understand the need to continue  medication  and
           therapy when they feel well. The demands of therapy  for  children  with
           arthritis place extraordinary stress on the family,  including  physical,
           emotional, social and financial problems.

           The pri nciple goals of the pediatric arthritis project in  the  Greater
           Delaware Valley area are: 1) family education  and  followup;  2)  educa-
           tion of physicians and allied health personnel; and  3)  development  o
           uniform pediatric case records system.  Five medical schools in the
           area are'cooperating in the program. Yiultispecialty backup is.  provided
           to physicians who are taking care of children with severe  physical  or
           social problems due to arthritis. A Nurse Coordinator  is  the  central
           figure in the family education and followijp program. The nurse  is  par-
           ticularly effective in face-to-face sessions with pediatric  patients  and
           their parents, and plays a crucial role in homd visits,  patient  records
           maintenance, school placement and patient referrals.  The  program  has
           arranged to open the existing three demonstration  pediatric  arthritis
           clinics ( at Chidlren's 'Hospital of Phil6delphia, Children's  Seashore
           House, and St. Christopher's Hospital for  Children).  Physicians  and
           physical therapists in the area are encouraged to attend  these  clinics
           to learn the special problems of caring for children  with  arthritis.

           Special Speakers

           Dri Gordon R. Engebretson, Coordinator of the Florida RNP,  addressed  the
           Sunday, January 19, luncheon group on the development and  activities  of
           the Program Accountability and Reporting Group (PAR),  an  organization
           of the National Association of Regional Medical  Program  Coordinators
           (NAMTC),fomed to develop and disseminate national descriptive and
           evaluative information about aT  programs.  Dr.  Engebretson  represented


                                          e Florida did not
            PAR in the conference, and sinc                 receive  a pilot arthritis
            program grant, provided an objective perspective of needs for accountabi-
            llty reporting, and the development of uniform information from among
            d#vergent programs supported by the RMP'S.
            Sunday evening, Mr. David D. Shobe, Director of Government and Community
            Affairs, Arthritis Foundation, was the dinner speaker.  He described and
            discussed the "National Arthritis Act of 1974" (P.L. 93-6liO). This  law
            expands the authority of the National Institutes of Health in the arthri-
            tis area.  Provision is made for the support of arthritis screening,
            detection, prevention and referral projects, the development of arthritis
            centers, and education related to arthritis.
            At midday, Monday, January 20, Dr. Evelyn V. Hess, University of Cincinnati
            Medical Center, and Chairperson of the ARA Computer Committee, described
            the development and purposes of the ARA uniform nomenclature  structure,
            and associated reporting forms.  Dr. Hess emphasized the widespread input
            sought and provided to this program, and underscored the flexibility with
            'which it is hoped the nomenclature and report forms will be received for
            use in various settings, and continued development. Evaluation  of  data
            descriptors is presently underway.  The principal use anticipated for
            common nomenclature is the institution of uniform terms in teaching about
            arthritis.

            Workshop@,          anuarv 3.9.
            Six workshops were conducted, and reported at the Sunday afternoon Plenary
            session.

                                                    Education

                                Co-Moderators:  Russell T. Schultz, M.D.
                                                Charles D. Tourtellotte, M.D.
            The workshop identified the following techniques being employed by   the
            arthritis program:
                1.  PRECEPTORSIIIP -Such efforts involve medical students participating
                    in local health care deliveries, as well as physicians returning
                    to medical schools for specialized rheumatoid training.
                2.  CLINIC PARTICIPATION - Through these techniques, difficult patients
                    are presented to con. ultihg physicians and others in the  local
                    community.  The medical problem is discussed in some detail and
                    treatment recommendations made.


                 3.   CONSULTATION   Conventional  consultation  contacts  have   evolved   from
                      outreach effortsi
                 4.   VIEEKLY LECTURE SERIES -  Some  programs  have  employed  regular  lecture
                      series on specific problems  of  the  treatment  or  diagnosis  of  rheu-
                      matic diseases.
                 5.   RL@GIONAT, D-KY-LONG SE@IINARS - These seminars are usually conducted
                      at a local site by a  panel  of  rheumatologists  of  the  area's  medical
                      centers.
                 6.   IEDICAL CENTER SYM.POSIIZIS -  These  are  more  formalized  presentations
                      by outside experts of some renown,  and  are  usually  one  or  two  days
                      in  duration.

                 7.   SELF OR PP.OG     D INSTRUCTION - A few prog
                                                                    rams have developed self-
                      assessment  and  programed  instructions  instruments.   This   technique
                      enables physicians  to  arrange  study  within  their  individual  sched-
                      ules.
                 8.   MEDICAL STUDENTS AND HOUSE STAFF PROGRAMS - There is a conscious
                      attempt in many projects to involve medical students and house
                      staff in the rheumatic disease educational programs.

               Problems
            The following problems related to physician to physician education were
            reported by the workshop group:
                 1.   Local physicians are over-worked to the degree that it is seldom
                      possible for them to participate in programs conducted in medi-
                      cal  centers.

                 2.   Treatment of the arthritis patient is a team effort; there ore,
                      training should realistically  be  conducted  on  a  team  basis  (several
                      team/teaching programs are being conducted with reasonable success).
                 3.   @rograms should be planned to meet the individual need of the
                      Darticular community.  Without some degree of tailoring, rapport
                      between the medical center and community may be lost.
                 4.   There is  an  insufficient  number  of  trained  rheumatologists  in  the
                      medical teaching  institutions  to  meet  the  demands  of  an  extensive
                      outreach program.
                 5.   Evaluation of the effectiveness of out-reach is difficult.


               6,  If out-reach programs are so service-oriented that  patients  begin
                   to circumvent the local health care system, rapport will  be  lost.
                   Education should be emphasized in out-reach programs  rather  than
                   patient service.

               7.  In areas where distances between population centers  are  great,
                   there appears to be less response to continuing  education  efforts
                   among local physicians. Distance also creates  a  teaching  resource
                   problem.
               8.  Not all Medical school faculties enthusiastically  participate  in
                   out-reacb clinics. Many feel their  responsibilities  lie  else-
                   where, such as research and institutional instruction.

           Evaluation
           The workshop discussed evaluation in broad terms.  No concensus was achieved
           on the best ways to evaluate the programs discussed.  It  was  generally
           agreed that such short term efforts as the one year pilot arthritis initia-
           tive could not be evaluated in terms of its effect on patient treatment
           and physician behavior.
           It was suggested that where possible, all programs maintain and compile
           cost and "students reached" data. With this information, it  may  be  possi-
           ble at the end of the pilot arthritis program to make judgements concerning
           the cost of various teaching techniques.  This data could be of great value
           to those responsible for continuation support. It might  also  be  pertinent
           to an evaluation of the cost of basic medical education in rheumatoid
           arthritis (as opposed to continuing education).

           An assessment of professional educationconducted by the A.R.A.  and  the
           National Arthritis Foundation was discussed by Dr. Evelyn Hess.  Pre-
           liminary information indicates a potential shortage of  physicians  trained
           in rheumatology., as few house staff and medical students are involved  in
           arhtritis centers. There are also relatively few  numbers  of  post-doctoral
           fellowships available in rheumatology.  Data indicated the existance of
           less than 2.5 rheumatolog-ists per  institution surveyed. (The survey covered
           120 teaching and private treatment insitutions).
           Final results from this survey may be ready for presentation at the national
           meeting in June 1975.

           Recommendations

           Racommendations which relate to the overall task  of.educating  physicians


           in  the area of rheumatic diseases:
                1.   Educational programs should be aimed at the needs of the  Datient
                     and address the physician's problems related to patient needs.
                2.   The guidelines for funding the arthritis initiative were quite
                     restrictive.  Future funding should allow more latitude for
                     program balance between out-reach education, and education of
                     medical students and house staff.
                3.   A coordinated attempt to gather, assess, and evaluate data on
                     the various education techniques employed in the pilot  arthritis
                     program should be implemented. PAR, or  a  similar  organization,
                     should be employed to accumulate the appropriate information  for
                     such an analysis.
                4.   The workshop supports continued funding of the  arthritis  center
                     approach, and other programs designed for the  continuing  educa-
                     tion of the practicing physician.

                                        Allied Health Education

                               C6-Moderators:  Marjorie D. Becker, Ph.D.
                                                Robert Godfrey, M.D.
            Workshop participants summarized their  respective  arthritis  activities,
            including allied health personnel  (AHP)  activities.  There  was  general
            concensus that the potential for AHP  education  is  largely  untapped.  A
            massive AHP training program would provide manifold improvements in
            service delivery through increased support  to  physicians  and  expansion
            of treatment monitoring and outreach capabilities.
            Participants also addressed AHP  qualification  measures.  TheVnoted  that
            AEP certification or licensure should not be so rigid that  i/t  precludes
            using manpower and talent that is presently available.  Tne earliest
            possible educational interaction between  all  health  occupations  should
            be encouraged. Also, we need to correlate, or to  include  the  AIIP  con-
            tribution within the ARA central health data base.
            Recommendations for future AHP educational activities are:
                 1. Support the Allied Health Professional Section  of  the  Arthritis
                     F undat on.
                 2.  Set up a national meeting of allied health professionals to share
                     their arthritis project outcomes and methodologies.  This should


                    be arranged in conjunction with the National  Arthritis  Foundation
                    meetings at New Orleans, in  June.
                 3. Request each of the pilot arthritis project directors  to  assign
                    an AHil coordinator to report specifically on the allied health
                    personnel involvement in their projects.  This  information  should
                    be organized and made available as part of the  documented  experi-
                    ence of the pilot arthritis initiative.
            Anticipated outcomes of greater Allied Health  Professional  Education:
                 1. Greater numbers of rheumatic patients will receive:sei-vices  from
                    appropriate levels of health professionals.
                 2. The total volume of patients serviced will be increased.
                 3. The level of patient sophistication regarding  arthritis  therapy
                    will be enhanced and there can be better  patient-physician  time
                    utilization. This could also help reduce  physician  resistance  to
                    professional education.

           Unresolved issues that might provide agenda items for  future  meetings:

                l.. Who should be,providing AHP education?  Should Discipline train
                   Discipline?

                2. Who should define criteria for competency, training, and performance?

                3.. How should we utilize non-physician-Allied Health  resources,  such
                   as the Arthritis Foundation, and other national and local community
                   health resources, for  provision  o'f complementary public  education,
                   patient education, and general support services?

           The Allied Health Education group strongly recommends that  allied  health
           training, recruitment, and research be considered an  extremely  high'pri-
           ority item when the activities of the National Arthritis Act  are  being
           developed.

                                            Patient Education

                                  Co-Moderators:  Frank E. Emery, M.D.
                                                  William G. Sale, M.D.

           The expenses and needs of the education activities of the  respective  pro-
           grams vary considerably. Some projects are ahead of  others  in  patient
           educations developments.  The problems discussed were:
                1. Dissemination of educational information; who should  be  responsi-
                   ble for this in local arthritis centers.


                2.   The need for educational material which is responsive to the
                     geographical, social, and economic needs of various patient
                     groups.
                3.   The need for a method to evaluate the effect of patient education.
                4.   The need for providers for carefully developed information to
                     help them answer patient questions, and discuss patient problems.
                5.   The need for the central source to accumulate and disseminate
                     tested arthritis patient educational materials.
             The Arthritis Foundation is urged to compile and list, through its
             Chapters and affiliated organizations, all of the arthritis pat:ient
             education materials now being used.

                                           Demogra2hic Factors

                                    CO-Moderators:  0. Lynn Deniston
                                                    Ms. E.L. Hebbeler
             The workshop participants developed a definition of "demographic factors"
             to help organize data which define patient and/or provider characteristics,
             and a-broader data set which relates to programmatic goals.  It was agreed
             that classical data is needed to augment programmatic information, and the
             combined results are required for effective planning.
             The workshop developed a set of demographic classifications, and potential
             data sources.

         I.  Patient Data
             Age                                    Utban-Rural
             Sex                                    Languaie Spoken
             Income                                 Living Arrangement
             Occupation                             Functional Capacity
             Health Insurance                        -diagnosis rheumatoi
             Weight                                  -diagnosis other
             Family History                         Other Health Care
              -family rheumatoid                     -traditional
              -personal history                      -nontraditional
             Smoking Patterns                       Mobility
             L&vel of Education                     Transportation
             Race

        II.  Population Data
             What is normally available through the use of census data and any related
             national or local resources. The objective is.to develop a description


            of the whole community with scope and detail similar to that indicated
            above for patients.

      III. Provider Data:  (both  physician  and  AHP)

            Practice Arrangements                   Physicians' Referral Patterns
            Professional  Profile                    -frequency
              -age                                   -reason
              -training-specialty                      -other medical services
              -place of education                      -social services
              -place of residency                    -other hea th services
              -involvement of allied health         Patient Management
                    professionals

       IV.  Institutional Data

            Hospitals                               Social Services
            LTC                                     Vocational Services
            Home Health  Services                   Mental Health Services

        V.  Community Data

            No. of Physician per Population Ratio
            Medical Service  Area
            Population Density
            Volunteerism

            In planning an arthritis program, the data suggested in items I thru V
            should be explored to the extent available.  When delivering care, it is
            suggested that all of the previously identified patient data would be per-
            tincnt to comprehensive patient care.  When conducting an educational
            program directed at providers, it is suggested that the previously mentioned
            data under the listing of "Provider Data" and Community", be utilized.

            Potential Sources of Data

            I.  Population Data

                Bureau of  Census
                Bureau of Labor

            II. Patient Data

                For potential patient forecasting
                 -hospital discharge data (URDA)
                 -ambulatory care data


                       -Public Health Department
                       -314 b Agencies
                       -National Center@ Health Statistics
                       -National  Health   Survey
                       -Experimental Medical Care Review Organization
                       -Experimental Health Services Delivery Systems

                 For patients being served:
                 It is suggested that the best source of information is the patient
                 himself/herself.

           III.  Provider Data

                 American Hospital Guide Issue
                 AMA Directory
                 State And Local Direct6ries
                 State Licenser Boards
                 PSRO's

                 If the above prove unsatisfactory,.or inadequate, it may be desirable
                 to interview providers directly.  It is recommended that this be done
                 in only selective situations, and as a last recourse.

            IV.  Institutionst Data

                 Medical Care Standards, State Agencies
                 State Institutional Licensing Regulatory Aut or t es

             V.  Community Data

                Vi,'Center foe('Rational/Health Statistics
                 It is suggested that local volunteer resources be explored.

             Long Term Program Goals
             In the light of  the  scope  of  the current pilot arthritis projects, and
             recently  enacted  legislation,   it is suggested that collective action be
             taken in the following three areas:
                 1.  An   appropriate   mechanism Avdevised to facilitate uniform data
                      collection from the 29 funded pilot arthritis programs.


                2.  The  pre'sent arthritis programs, coupled with new  legislation  for
                    new arthritis program advances, intensify the need  for  collective
                    evaluation of all the funded arthritis projects through  a  central
                    agent.
                3.  The PAR could be a resource for centrally collecting  and  dissemi-
                    nating project data. Further, this activity appears  to  be  appro-
                    priate for PAR, and consistent with the  responsibilities  delegated
                    IUT's to evaluate operational projects.  Recognizing the constraints
                    imposed by the limited pilot arthritis program  funding,  projects
                    should accumulate demographic data from the start of  the  different
                    projects, and there should be 9-month, 12-month, or  similar  peri-
                    odic reporting. In view of new arthritis  and  healthplanning  and
                    resources development legislation, it is important to know how
                    well projects are meeting their stated objectives, and  their  out-
                    comes. This information should be made available  to  various  HEW
                    agencies, and to the arthritis program directors.

                                          Arthritis Services

                                  Co-Moderators:  Gene V. Ball, M.D.
                                                  John L. Magness, M.D.

            In reviewing the activities of the participants' projects, there was
            general concensus that an important part of the arthritis  service  program
            was decentralization of present services from medical centers  and  medical
            clinics out into the respective communities. Three major  types  of  arth-
            ritis services are variously being developed through the projects:

                    a.  An area of physical treatment
                    b.  An area of social and emotional treatment
                    c.  An area of economic, vocational and educational treatment

            A discussion of what constitutes comprehensive arthritis  service  reflected
            considerable variablility in physician's use of community resources.  Parti-
            cipants addressed the use of volunteer organization%,  charitable  organiza-
            t.ions (including the Arthritis Foundation), available community  resources
            such as the Public Health nurse, and fixed or mobile evaluation and follow-
            up teams in order to provide service for the arthritic.  The employment
            of screening programs operated by nurses in outlying communities is a
            way to extend out-reach.  Care should be exercised, however, to prevent
            the establishment of a duplicative referral system through  such  programs.


           Broad experience is being obtained in the staffing and use of  evaluation
           and followup teams. Two general types of teams were  described:  1)  Teams
           using specialized physicians (orthopedists, rheumotologists,  physiatrics,
           and pediatricians), with allied health personnel fulfilling a constructive
           ro le; and, 2) teams comprised primarily of allied health  personnel  vari-
           ously combining the skills of nurses, arthritis specialists,  physical
           therapists, occupational therapists, social service workers, and  psycho-
           logist and nutrition specialists. The teams varied in thrust  from  those
           that are designed primarily to act as demonstration, or teaching teams, to
           those designed to engage in diagnosis and treatment. Both types  can  under-
           take the development of community resources.
           It was emphasizedthat there is continued need for centralized  resource
           centers with sophisticated seralogic laboratory capabilities.  Such  centers
           provide the resource and research data required to handle  complicated
           illness, and  particula'rly to back up specialized clinics for  juvenile
           rheumatoid arthritics, geriatric, and lupus problems.
           A discussion was held on the role of Allied Health personnel in the  arth-
           ritis treatment and service programs. Considerable  philosophical  differ-
           ences exist regarding appropriate responsibilities of nurse  practioners,
           and allied health personnel. Some concensus was reached that there is need
           for a nurse arthritis specialist to be involved in an evaluation,  data
           collection and treatment situation under the supervision of the  physician
           in charge of the care of the arthritic.

                                         Service Deplopent

                           Co-Moderators:  Raymond E.H. Partridge, M.D.
                                           Donald Riggin

           Question was raised as to how the majority of @xisting arthritis  services
           are provided to arthritis patients. It.is through the  private  physician,
           particularly local medical practitioners. Discussion  ensued  regarding
           the degree to which physicians know what is available to arthritis  patients
           in the area. While services may be available that the physician  is  unaware
           of, it is also apparent that many available services are competitive  rather
           than cooperative. There is a wide need for directories  of  resources.
           Unresolved questions included:  whose responsibility it is to overs  ee
           directory development; and ultimately, who should organize the deployed
           arthritis services that are available?

           Circumstances that effectively inhibit service deployment and use  were
           discussed. Some of these are: 1) The conservative  nature  of  physicians;


              2) fear  that patients referred to other clinics or facilities  will  be
              lost; 3) poor education of physicians regarding  the  services  that  other
              arthritis resources can offer; and,  4) suspicion about government-
              financed services. Other inhibiting factors of  service  deployment  and
              utilization from the patient's perspective  are  principally  financial,
              particularly the patient's ability to pay.  It was felt that there
              should be greater willingness by insurance carriers to  pay  out-patient
              fees to support increased access to care, and reduced  cost of care
              which can be realized through out-patient services.

              It was noted that with National Health Insurance being discussed in
              Congress, increased publicity should be directed  to  patient  financial
              problems, and opportunities for financing improved care  in  the  arthritis
              field. All areas of concern for arthritis  patients  should  be  addressed.
              Activities of the RNP's are producing results in changing  attitudes  of
              local physicians and patients toward referrals. It was  felt  by  physi-
              cians representing rural areas that a marked impact is being  made,  and
              that physicians are becoming much more  familiarxrith  arthritis  problems,
              and handling them with greater ease. TheVe  is  a  parallel  improvement
              in utilization of services.  The need for early diagnosis and the
              development of diagnostic centers was emphasized,  utilizing  peripheral
              facilities for continuation of the program. There is a  great  need  for
              physician and patient education as to what services can  be  provided.
              Should one concentrate on quality, or quantity o@a@e2-,.,,,It was generally
              felt that the first priority is to increase@the(availablii)access  to-
              medical care by arthritis patients.

                                           Panel Discussion

                                   Program Evaluation and Assessment

                        Panelists:  Gordon R. Engebretson, Ph.D.  Moderator
                                    0. Lynn Deniston, University of Michigan
                                    Evelyn V. Hess, M.D., University  of  Cincinnati
                                                                 Medical Center
                                    Carl W. Schartz, PIMA Health Systems

              Mr. Schwa   zdescribed a health information system developed  by  PIMA
              Health  y  e s, an experimental health service delivery  program  funded
                          m
              by the  u   a K Health Services Research/ to provide health activities
              evaluations. A periodic reporting system has  been  instituted  for  the
              pilot arthritis program established in southern Arizona  to  provide  eval-
              uative data related to the six objectives of the  program.  Mr  Schwartz
              discussed aspects of the evaluation program which will permit data
              accumulation and assessment, as well as  appropriate  project  modification
              with regard to the quantity, quality, and cost effectiveness of activities.


             It is anticipated that development of extensive  sociologic  information,
             and patient and clinical services assessment criteria will provide a
             method to comparatively assess arthritis clinics in  different  geographic,
             and sociologic settings.
             Mr. Deniston adapted Einstein's relativity formula to  highlight  important
             aspects of program evaluation, characterizing evaluation as a  "bunch  of
             relativities". An important relativity  often.overlooked,  and  leading
             to doubts of the validity of findings, is causality of results.  Health pro-
             gram evaluation must encompass E=M+C+C (Evaluation=Measure +  comparison  +
             causality). Evaluators may tend to report, for instance,  that  a  before-
             after change in a patient group is the result of what was done  for  them
             in a treatment sequence, while comparison with a similar, untreated
             group may reveal similar changes. Thus, the cause of change  is  not  that
             which was projected, and the service requires further consideration.
             CausXity must be taken carefully into account  in  effective  evaluation.
             Two principal ways are: 1) development, or location of  a  control,  or
             comparison situation or group, and  2) a time-based approach through which
             status (high or low, good or bad) is periodically recorded  over  time.
             In either circumstance, a "whole group" perspective must be maintained
             to prevent attribution of artificial characteristics to the phenomenon
             being assessed. Mr. Deniston noted that when neither  the  comparison  nor
             time-based approaches can be employed, assessment must be  carefully  de-
             signed with regard to the environment's causal forces.

             Dr. Hess stressed that the Conference charge regarding evaluation  is  to
             develop methods and systems, more than to apply them in the  short  pilot
             arthritis program time remaining. In view of  new  arthritis  legislation,
             this opportunity occurs at a fortuitous time, Dr.  Hess  advocated  simpli-
             city in program evaluation, cautioning against a tendency to delve too
             minutely for answers to unasked questions, or to attempt to observe  .-
             what purpose, should be defined before the evaluation process  or  system
             is initiated.  Rarely does everything need to be evaluated, and the
             program will be adversely effected if evaluation objectives  are  given
             priority over substantive program objectives.
             Dr. Hess also reiterated the need for attention to  outcome  causality.
             Many variables exist which create problems in evaluation.  Investi-
             gators may be able to control some, but value measures must  be  deter-
             mined which are clearly functions of  controllable-variables.  In  t  s
             respect, the pieces of paper" used in data accumulation,  and  the  manner
             in which they are used may well be causal factors. themselves,  on  the
             outcome.
             Dr. Engebretson addressed broad pilot arthritis program  assessment  needs.
             He suggested that the framework of the assessment should encompass  isease


             intervention activities, project organization, management, and  support-
             ing services.  This would provide a program mosaic against which the
             allocation of resources, expenditures of effort, and  program  accomplish-
             ments could be assessed. The acquisition and organization  of  such  infor-
             mation would permit program assessments by an expert group, such as  the
             American Rheumatism Association, with respect to feasible activities,
             and long-term goals of national arthritis programs.
             The broad assessment questions of the pilot arthritis program require
             identification of the:

                 1.  objectives of the programs,
                 2.  activities of the programs, and
                 3.  measurement criteria related to the objectives.@
             Analyses should be performed on program planning, organization, direction,
             monitoring, and control. The effects of linkages between  official,  and
             voluntary groups should be documented, as well as performance  standards
             and outcome criteria of activities. The existence,  and  effectiveness  of
             reporting systems should be known as well as the manpower and other
             effects of laws, regulations, and licensure or certification require-
             ments. The availability of sufficient numbers and types of  health  man-
             power, and provisions for their education and training must be considered,
             and the effects of disease intervention activities initiated under the
             arthritis program, or with which activ-1-ties.are coordinated.

             Resolutions and Recommendations of the Arthritis Conference

             Identification of activities to foster program outcome reporting  was  the
             central consideration of the Workshops, and Workshop Reports on  the  final
             conference day. All of the recommendations presented  were  approved  after
             modification in the final Plenary session. The summary  reports  of  these
             Workshops, and the conference-approved recommendations and resolutions
             are as follows.

                                        Program Documentation

                              Co-Moderators:  F. Richard Convery, M.D.
                                              Carl Hl. Eisenbeis, II.D.

             The workshop participants agreed on four (4) aspects of pilot  arthritis
             program documentation, and evaluation.

                 1. Documentation should be according to objectives  of  the  programs.
                 2. Effort made under the program is  probably-most  easily  documented.


                   3.  We should not expect to measure outcome other than by numbers
                      served.
                                 ion at the end of one year is  of  value  primarily  with
                   4.  DocumE,ntat
                      reference to future planning.
               The processes identified as being measurable by numbers and amendable
               to cost analysis were:
                   1. Numbers of training persons and sessions.
                   2  Numbers of personnel trained.
                   3. Number@-.! of centers established.
                   4. Nu-saibei.s of patients treated.
               it was empbasizad that most programs are  designed  to  expand  services  by
               education and outreach.  Therefore,  documentation  should  be  numerative,
               and not intended to provide conclusions regarding training effectiveness
               and quality of care.
               Documentation should be organized so that the  following  elements  can  be
               identified:
                   1.  Effort                        4.  Efficiency
                   2.  Perforr,,.a.nce               5.  Process
                   3.  Adequacy

                                 Recommendations on       n@ Do umen a@ti@n

               Conference   Action
               Approved     1.   KIP should provide a common  data  collecting  system  or
                                 uniform documentation.
               Approved     2.   Documentation should be reviewed and evaluated by
                                 sub-units of RIIP, AF, and AAOS.
               Approved     3.   Summaries when completed, should  be  made  available  to
                                 all interested parties.

                                       Special Report Opportunities

                                    Co-Moderators:  Ivan F. Duff, M.D.
                                                     John L. Kline
               We note that the stress on reporting  the  achievements  of  the  arthritis
               initiative is to place emphasis  on  primary  patient  care---NOW.  That  a


             majority of the projects are doing this is reflected in  their  activity
             reports. This concept of responding to the needs of  patients  --  of
             doing something for them now -- should, we feel, be protected and
             fostered in the realization of the National Arthritis Act which  in  its
             language places stress upon research.

             In all of the projects, education is either a major or a  minor  outcome.
             Education should not be aimed at any one group, but should  enhance  the
             activities of all concerned; i.e. physicians, allied health professionals,
             patients, their families, and the public. Because  of  the  multiplicity
             of efforts being made to design good educational materials,  we  urge
             that a national clearinghouse be established.  We  strongly  encourage
             the Arthritis Foundation to respond to this  critical  need.  Coordinated
             development is needed for the creation of educational materials  designed-
             in response to documented patient, physician and allied  health  pro-
             fessional requirements. The education  clearinghouse  should  actively
             seek out and maintain working relationships with other  organizations  al-
             ready dealing in the development of educational materials.

            ,In this workshop, eight of the 12 projects represented  are  actively
             collecting data. We encourage these activities in the  light  of  the
             establishment of a national arthritis data base.  A  central  repository
             accessible and responsive to the needs of the field must  be  established
             to collect and organize data generated in the  arthritis  initiative.  It
             is recommended, because of the present lack of uniformity  in  reporting,
             that each project immediately remit copies of their  data  collecting
             instruments to Dr. William Campbell, who is associated wit  t e  ennessee
             Regional Medical Program arthritis project. (William  Campbell,  M.D.,
             Fort Sanders Professional Building, Suite 605,  Knoxville,  Tennessee
             37916).  He will only assemble and disseminate the instruments as re-
             quested by the project people. It is also  recommended  that  central
             collection and dissemination of uniform program information be under-
             taken by the Public Accountability and Reporting Group (PAR),  or  another
             appropriate entity, but under specifications established by a professional
             arthritis entity, such as the ARA Computer Committee.

             It is recommended for the future that high priority be assigned  to  eval-
             uation of: (1) long term efficacy of  comprehensive  (optimal)  arthritis
             management versus episodic care, i.e. the usual type of  clinical  care;
             and (2) the effectiveness of the nurse  practitioner  complementation  to
             the physician. A cooperative report based upon  the  contributions  of
             everyone involved in the training of nurse practitioners in arthritis
             is desirable.

             Third party reimbursement of allied health professionals should be
             explored in a cooperative report which identify opportunities  to  in-
             clude allied health professional care services as a  reimbursable  item.


              It is recommended that linkages be established between the various levels
              of care providers; this will optimize their utilization, and refute the
              complaint that what we have to offer is not being maximally utilized.
              Among special studies that should be reported we include:  (1) Arthritis
              in industry; (2) Al,-ibama's ':@@'edical Information Service by Telephone, i.e.,
              the IIIST programme P)odified to the needs of practitioners with arthritis
              patient problems; and (3) the program of the Western Pennsylvania RMP,
              which defines deficiencies in knowledge, appropriately gears up their
              educational efforts, and subsequently provides follow-up evaluation of
              their efforts.  Other on-.going studies should also be reported.
              Throughout this conference, very little has been said'about the methods
              and problems of outreach into the community.  We wish to reaffirm that
              this is what the arthritis program is all about.  A cooperative report
              based upon our individual experiences is needed to record the methologies
              variously used, and the solutions to the problems which we have encount-
              ered.
              In conclusion, i-7e are agreer-I that experiences from this initiative should
              form a basis for activities to be sponsored through the National Arth-
              ritis Act.

                            Rc--,coi@:L@endation S e(Li al- P-t 0  ortunities

              Conference  Action
              Approved     1.  The establishment of a national clearinghouse for
                               educational materials, efforts and methodologies be
                               directed to the Division of Long Term Care of the
                               Health Resources Administration, PHS, and the Arth-
                               ritis Foundation.  These offices should actively seek
                               out and maintain contact with other pertinent organi-
                               zations dealing in the development of education materials.
              Approved     2.  Because of lack of uniformity in data collection, each
                               project should immediately remit copies of its data
                               collecting instruments to Dr. William Campbell, B'10-
                               engineering Medical Program, Department of Engineering,
                               Science and Mechanics, University of Tennessee,
                               Knoxville.
              Approved     3.  The central collection and dispersion of data be under-
                               taken by the Public Accountability and Reporting Group
                               (PAR) or another appropriate entity, under the speci-
                               fications and guid ance of the ARA Computer Committee.


             Approved      4.  Evenually, high priority must be assi-ned to definitions
                               of (1) the long term effectiveness of  different  modes
                               of health service delivery employed in the  important
                               types of arthritis, and (2) the effectiveness  of  the
                               nurse practitioner and the physician.  A  cooperative
                               report based upon the activities of everyone  involved
                               in the training of nurse practitioners is  d&sirable.

             Approved     5.   Third party reimbursement for arthritis services  should
                               be explored in a cooperative effort.

             Approved     6.   A cooperative report should be developed,  reflecting
                               outreach experiences in the arthritis project.

             In conclusion, we are agreed that experience from this  initiative  should
             form a basis for activities to be sponsored, in the future, by the
             National Arthritis Act.

                                      Care Delivery Initiatives

                                 Co-Moderators:  Roy L. Cleere, M.D.
                                                  C.H. Wilson, Jr., II.D.

             The workshop explored the prevailing pattern of arthritis  care  delivery
             in the past which has been a primary care physician,  one-on-one  delivery
             system.  A number of weaknesses of this system were pointed out:
                 1.  A lack of proper utilization of allied health disciplines in
                     the care of the patient with arthritis.
                 2.  When all care and patient education is provided  solely  through
                     the physician, medical capabilities may be  inordinately  diverted
                     into services which frequently can be provided  more  effectively
                     by health professional disciplines.
                 3.  Prevailing practices have inhibited full functioning of  some  o
                     the allied health disciplines because of the ambiguity  of  legal
                     systems based on this with regard to legal liability.
                 4.  Frequently, the physician is innundated in  delivering  primary
                     tare so that he is unable to participate in  continuing  education
                     activities.

             Only one strength of this system was pointed out, and that was  the  very
             significant rapport developed between patient and primary care physician.
             It was felt that this could be transferred and shared with  other  members
             of the health team without decreasing any effectiveness of care.


              In exploring the impact of the pilot arthritis program  on  the  health
              system, a number of project descriptions were  explored  and  discussed,
              varying from a traveling clinic delivering care over  large  areas  and
              for screening and diagnostic processes, to a  more  stable,  permanent
              clinic development program in community  hospitals.  It  is  f'elt  that
              all of these are significant demonstration projects  fitting  the  demo-
              graphic situations for which they were designed.  The  major  effect  is
              in the demonstration of the team approach to the  delivery  of  services,
              as well as educational opportunities for those involved in  the  care  of
              the arthritic patient.

              It is felt that these projects are significant, and that  they  need  to
              be continued for a longer period of time to  effect  proper  evaluation
              of their impact, as well as for continued delivery  of  primary  health
              services.  If there is a gap period in which funds are lost before
              proper evaluation can occur, the impact of these systems  will  be  lost.
              Therefore, every effort should be made to continue  interim  support  of
              these  projects.

                             Recounendations on  Care  Delivery  Initiatives

              Conference  Action

              Approved     1.  As many as possible  of the care delivery  projects  of
                               the arthritis program be continued  beyond  the  present
                               grant period by asking that immediate  funding  be  made
                               available, effective July 1, 1975 to  keep  these  pro-
                               grams going during the transitional  phase  after  the
                               RNP has terminated.

              Approved     2.  The arthritis program initiatives  should  be  extended,
                               where there is a promise of learning  from  them,  until
                               such time as this learning can be demonstrated.  Poten-
                               tial sources are unexpended project  funds,  other  RMP
                               resources, industries, etc.  Another  source  of  con-
                               tinuing funds may exist  through  extending  contract
                               benefits with health insurance  organizations  such  as
                               Blue Cross and Blue Shield.

              Approved     3.  That this conference request the National Arthritis Act
                               Commission to consider recommending  funding  for  care
                               delivery systems that are not primari     re  ate  to
                               large research institutions.

              Approved     4. That personnel in the  arthritis  programs  contact  the
                               Governors in their-states for input into the com-
                               position of the health  councils.  That  contact  with


                                the councils then be continued to seek funding  through
                                the National Health Planning and Resources  Development
                                Act.

                                           Program Continuity

                                Co-Moderators:  Ephraim P. Engleman, M.D.
                                                David D. Shobe

             Participants developed and analyzed a list of the variety of funds
             being utilized by the arthritis prjects, including arthritis chapter
             funds, some private resources, certain support from the National  Insti-
             tutes of Health, as well as fees for services. In the  latter  category
             it was indicated that in most cases, these are currently being paid  by
             patients, but that project directors have applied, or are applying,  for
             reimbursement of these fees by Medicare, Medicaid, or other third  party
             payers.
             It is of interest that in none of the programs represented in this  Work-
             shop has there been support from anv other voluntary health agency,  or
             from any State sources. It was reported that the Federal  Government  is
             now directing a variety of mechanisms that pay nearly one-half of  all
             medical care, but third party payers are responsible for another  major
             part, and the amount and type of payment is negotiated.  When the services
             of allied health personnel are reimbursed, payment is usually limited  to
             in-patient services, and at rates which are often the same as those  paid
             to physicians. In some states, however, rates have been reduced  by  law
             to a lower fee schedule. Patient educations services are  also  reimbursed
             on an in-patient basis, when paid. The arthritis programs  should  assert
             every effort to preserve, if not increase, presently available  funds.
             The question of future funding revolved around four central issues.
                 1.  The possibility of additional RMP funds which may be  available
                     in the regional programs. While there is a  Congressional  con-
                     tinuing resolution which provides up to 78 million dollars
                     during fiscal 1975, it is limited for use connected with the
                     transitional activities of Health Planning and Resource  Develop-
                     ment programs.
                 2.  The new Health Planning Resources Development Act (BHPRD)  was
                     reviewed. It was pointed out that project funds  were  unlikely
                     to be available until late 1976 under this  authority.  Health
                     Service Agencies authorized under the HPRD will not be  identified
                     with educational institutions, and this is an important  contrast
                     with the centers authorized under the National Arthritis  Act.


                 3   The National Ar'          was also discussed, particularly the
                                    thritis Act
                     section dealing with screening and detection.  It was pointed out
                     that if funds are made available to implement this section, it is
                     possible that they could be applied to some of the current arthritis
                     activities. The research contemplated in the  National  Arthritis
                     Act centers will encompass clinical research, as distinct from
                     bench research.  There is no prohibition against outreach from
                     the centers.
                 4.  The fourth area of future funding discussed was the possibility
                     of approaching Governors and State legislators to authorize  con-
                     tinuance of specific programs, the loss of which would  terminate
                     care in the area.
             It was agreed that all Arthritis Foundation Chapters in areas where pilot
             arthritis programs are currently in existence insure publicity for  these
             programs, and where possible,, try to develop continuation funding for
             those projects for which public funding will no longer be available.

                                 Recommendation on Pro&rapi Continuity

             Conference Action
             Approved      1.  Pilot arthritis programs should, wherever possible,
                               be phased into other supporting mechanisms,  including:
                                   a) fees for service, and third-party payments,
                                   b) private support
                                   c) transitional funds (P.L. 93-641), and clinical
                                      research outreach, and screening funds, as
                                      appropriate (P L. 93-640).
                                   d) Arthritis Chapter support.