nt | met =O Seven (> Uf SS ‘aannenean| | MN "4 NoTE.—DO NOT USE THIS ROUTE SLIP TO | vaTE SHOW FORMAL CLEARANCES OR APPROVALS Oct 9, 1974 TO: a AGENCY BLDG. ROOM Draft of proposal on national arthritis “conference requésted by Dr. Margulies at meeting with Mr. Gardell, and Mr. Spear cod wrrovat Da REVIEW ( PER CONVERSATION (SIGNATURE ©] NOTE AND SEE ME [J AS REQUESTED SRCCOMMENT ©] NOTE AND RETURN [1] NECESSARY ACTION [) FOR YOUR INFORMATION CC) PREPARE REPLY FOR SIGNATURE OF MARKS: ‘Yast Mond ay. (Fold here for return) To M From att Spear PHONE BUILDING ROOM Fonu HEW-30 Rev. 11/56 ROUTE SLIP GPO 19743 © ~ 417-326 TO : FROM: SUBJECT : DRAFT DRAFT DRAFT - DRAFT 10/8/74 Acting Director, Division of Regional Medical Programs, BHRD Request for assistance in providing followup activities for the DRMP pilot arthritis program — We would appreciate guidance and assistance on appropriate followup activities which should be carried out in connection with 29 funded Regional Medical Program (RMP) pilot arthritis programs. In its recom- mendations to the June meeting of the National Advisory Council, the Arthritis Ad Hoc Review Committee urged that the funded programs be pro- vided overall coordination to produce a national program perspective. In this regard, the Committee also recommended that program reporting be established, along with mechanisms for information exchanges, and overall program evaluation. All of the Committee's recommendations were ratified by the Council. The Division of Regional Medfcal Programs (DRMP) is constrained with regard to alternative initiatives for followup action by virtue of the order of the Court requiring that all of aur funds be allocated to the RMP's. This has been done, and we are without funds to carry out more than minimal staff activities. The timing and circumstances of the grant application and award processes deterred the establishment of program coordination and evaluation capabilities outside of the individual RMP's. Thus, we are confronted with a $4.5 million categorical grant program in which activities are dispersed, and without mechanisms for unified order, and evaluation. ALTERNATIVES Practical alternatives for followup activities appear to be the follow- ing: 1. Convene a national conference of representatives of the funded programs and other concerned institutions. The purpose of the conference would be to: a) identify mutual needs of the programs; b) specify the manner and scope of response to these needs; c) clatify the terminal role of DRMP in connection with the grants; and d) elicit program coordination and evaluation ‘roles from among program participants, including organizations of the National Association of Regional Coordinators, and the Arthritis Foundation. $3 m3 13 9 oO (2 Fs 4 oO ie) 2. Establish centraliprogrem reporting and evaluation These would be developed in BHRD, and administered directly, or through a contract. 3. Do nothing; i.e., indicate lack of interest in categgrical pro- gram particitation, and require terminal reporting during RMP phase-out. RECOMMENDATION We recommend that a national conference (No. 1, above) of funded program leaders be convened aty the earliest feasible date. We conceive of the conference as a two, or three day workshop which, in addition to the objectives indicated above, woudd strengthen the invoement of the con- cerned professional groups, and stimulate quality program impetus, and post-grant alternatives. The diminished interest of DRMP as the sponsor- ing Fedezal agency would be offset by the assumption of continuity 3 responsibility by the "arthritis industry", to the degree in which it is willing to respond. The persuasive impact of peer professional involve- ment is considered /necessary offset to waning interest and effort as funding termination approaches. Indeed, such an effect will be critical withdrawal, fin the face of stated Federal disinterest, BACKGROUND In communications with the RMP's with funded pidot arthritis programs, we have solicited their comments concerning program coordination and evaluation. To date, 21 of the 29 funded Regions have responded. The following suggestions overdap, as a variety of actions mm were proposed by most respondents. A. 14 Regions desire a conference in some context. These responses included the following: | 6 urge an early conference 4 suggest a conference soon after program startup 3 suggest a 1-day "show and tell" session, only 4. suggest two, or three periodic conferences B. Some Regions indicated various desirable program outcomes, but did not specify implementing procedure. Others urged RMP meet- tings in addition to the above, involving DRMP leadership, and site visits. C. All respondents expressed the need for information exchange, and some urged that a process of mutual assistance be established. D. Several Regions proposed program reporting formats, and procedures. We believe that the proposed conference should be a one-time convention of all involved organizations and groups. Since any continuing activities approved at the conference will be dependent upon voluntary execution, a maximum number of those who will be asked to report, or collaborate should be present. It appears that this should be an average of three people from each of the 29 RMP's. It would be desirable for all Project Directors to participate. We have developed a breakdown of grant distribution, and program com- ponents in Exhibit A. We estimate that a totaliof 93 participants would include 29 RMP representatives, and 64 Project Directors. A total of 139 participants would include representatives from 44 additional signigrcant . institutions which are the reported sites of mejer activities. To augment the declining Federal interest in categorical program involve- ment, we propose that DRMP participation in the conference be primarily that of Convener, with substantive agenda content to be developed and executed primarily by arthritis program participants. To effect this appraach, the agenda would be developed by a small representative graup, and Chair assignments made to other-than-DRMP participants. A schema~ tic agenda is presented in Exhibit B. ‘ ESTIMATED COSTS paral Deled The financial constraints presently experienced by DRMP are Ragualied in a number 6f RMPs and other pregram participating institutions. For this reason, and to underscore joint interest in launching effective contin- uing arthritis activities, we propose that: a. the cost of minimal conference participation be jointly under- written by DRMP, the Arthritis ?Roundation, and the participating RMP's, b. the participation of other involved individuals be permitted at their cost. c. the conference be held at a mid-continent location to equalize travel costs, and to take advantage of generally lower charges at southern locations (e.g., Kansas City; Oklahoma City; Dallas; Jackson, Mississippi). d. the conference be scheduled for no more than three days. e. guaranteed support for participants needing subsidization’ be limited to a stated maximum. Estimated eosts of subsidization: Per diem $25 X 3 days $ 75 Other 5X 3 15 Travel (air tourist) 200 Estimated cost per person | $ 290 $290 per person X 93 participants $26,970 Audio-visual, and contingencies 3,030 Estimated sponsor cost $30,000 Proposed support: Arthritis Foundation « 10,000 RMP ‘s 10,000 DRMP 10,000 (AF, and DRMP staff costs are additional), Cx For your information, summary information about the funded pilot arth- ritis program is contained in Exhibits C-1, and C~-2. We will appreciate your comments and assistance in identifying appropriate DRMP support. We have discussed these estimates with an official of the Arthritis Foundation, and received informat commitment of financial support. Enclosures Pilot Arthritis Program Geographic Comparison of Grants Basis of geographic distribution: East-West division is the Mississippi River EXHIBIT A North-South division is a line beginning on the Mason-Dixon Line, extending down the Ohio River, and extending west from the confluence of the Ohio and Mississippi Rivers. California is divided equally between North, and South. A. Financing: North South East $1,059,000 $1,232,000 West 1,018,000 1,203,000 Totals: 2,077,000 2,435,000 B. Participating Regional Medical Programs: East 7.0 9.0 West es) 6.5 Totals: 13.5 15.5 Total $2,291,000 2,221,000 4,512,000 C. Head count of 29 RMP's, and recorded components (Max figure includes other participating institutions; e.g., Alabama Min includes 1 RMP representative, and 1 representative of the recorded Component; the Max number includes these 2, plus the 3 participating medical schools) Min Max Min Max East 20 36 25 34 West 24 35 24 34 Totals: 4G 71 49 68 Min Max 45 70 48 69 3 13 ESHIBIT B Pilot Arthritis Program Schematic Agenda for Proposed Conference First Day Registration Opening Ceremonies, Introductions Conference Charge to participants Désignation of Workshops, and participants Overview of salient issues Program reporting needs Development of potential papers Regional/Sectional opportunities for program enhancement Continuity funding needs, and opportunities Program start up and operating problems Information clearinghouse, and exchange needs Second Day Workshops Program reporting needs and methods Program evaluation needs and methods Program professional exchange subjects and methods Funding alternatives, and how to prepare for them Mutual assistance needs, and methods Functional assignment alternatives Third Day Presentation, discussion, and voting on proposals Assignment of tasks, and schedule of activities Reaffirmation of responsibilities Adjourn EXHIBIT C-1 SUMMARY DESCRIPTION OF THE NATIONAL PILOT ARTHRITIS PROGRAM TO BE CARRIED OUT THROUGH REGIONAL MEDICAL PROGRAMS A national pilot arthritis program has been initiated in 29 Regional Medical Programs through special grants and program approvals. These grants were made possible by a Congressional earmark of pilot arthritis funds in the 1974 RMP appropriation. It is anticipated that approxi- ‘mately $4,500,000 will be expended this year for the special pilot arthritis program. The grant applications, received from 43 RMP's, were reviewed and assessed by the Arthritis Ad Hoc Review Committee, comprised of arth- ritis specialists from across the country, and the National Advisory Council on Regional Médical Programs. Reviewers formulated an arthritis grant review perspective to establish a uniform basis on which to analyze the applications under highly competitive circumstances resulting from total requests amounting to four times the available funds. The review perspective (or guides) defined program emphasis which, in addition to professional judgements of merit and achievability resulting from the review, lent increased cohesiveness to the overall approved pilot ‘arthritis thrust. The emphasis of the approved pilot program is the extension of present knowledge in arthritis diagnosis, treatment, and care, through coordi- nated services which demonstrate improved patient access to care, and extension of professional services through expanded utilization of professional and paraprofessional personnel, and existing community resources. Arthritis clinics will be established in medical centers, community hospitals, and other community health facilities. Educa~ tional programs in hospitals, and through visiting multi-disciplinary teams, will increase the arthritis-handling capabilities of hospitals and private physicians, and will equip larger numbers of medical and health personnel to support services in hospitals, clinics, and home care settings. Increased patient self-care will be demonstrated through the development of patient/family training activities. Seminars and workshops will be conducted at many sites for improved utilization of community resources for arthritis services, including home care guid- ance and surveillance. Existing health department personnel and facilities, and health groups such as the Visiting Nurse Association, local councils on aging, and operating community health worker train- ing programs, are cooperating in demonstrations of improved arthritis health care delivery. Several modest studies to develop criteria for quality care through provider performance standards are being conducted. An industry survey is planned in one Region, and an employee/employer education program will be developed in concert with better organized occupa- tional health services. A number of programs are focusing on the problems of low income rural groups, and others are developing demonstrations of care delivery to economically disadvantaged inner city residents. Pediatric arthritis services will be developed in a variety of settings, and one program is demonstrating improved services to a geriatric population. Localities which presently have little, or no rheumatological resources are being supported in the initiation or expansion of new medical institution teaching capabilities. Across the country, Chapters of the Arthritis Founda- tion are providing program coordination, dissemination of publica- tions, and increased numbers of volunteer workers in support of services and increased patient referrals to local services and resources. The constraints imposed by one-year limited funds were keenly appreciated by the review bodies. It was recognized that while much valuable work could’ be accomplished with the earmarked funds, many meritorious activities could not be approved under the limited, one-year pilot character of this program. In this respect, the Arthritis Ad Hoc Review Committee noted, "...we consider this a very meager effort toward a tremendous problems, and it in no way reaches a point of beginning to provide a solution of any definitive kind..." EXHIBIT C-2 DIVISION OF REGIONAL MEDICAL PROGRAMS BUREAU OF HEALTH RESOURCES DEVELOPMENT The following capsule statements of arthritis program content are provided from the original applications, following Committee, and Council Review. A number of program changes have been effected, and are reflected where such changes have been reported to DRMP. The specifics of individual programs should be obtained from the RMP, or the principle investigators when more complete information is desired. RMP Arthritis Program Synopsis ‘Alabama University of Alabama, Birmingham, will establish new arthritis clinics at Huntsville, Tuscaloosa, and Mobile. UAB will carry out periodic demon- stration-teaching clinics at these sites for clinic staffs, local physicians, and PH Nurses. Albany Albany Medical College will establish two arthritis clinics with local staffing to serve rural populations. Arizona | Arizona Arthritis Foundation, with a variety of University and other medical and health organizations, will develop a network of diag- nostic, treatment, and rehabilitation services in the southern 6 counties surrounding Tucson. Multidisciplinary consulting teams, and local coordinating committees will be formed. Arkansas Arkansas Arthritis Foundation will. coordinate the UA Medical Center, Little Rock VA Hospital, Leo N. Levi Nat'l Arthritis Hospital in the’ establishment of 6 locally staffed clinics in outlying population centers. An active education program will be provided. California CCRMP will coordinate service development and outreach activities at 8 centers; UC, Davis (JRA clinic); UC San Francisco; USC; UC San Diego; St Mary's Hospital, San Francisco; Orange County Medical Center; Loma Linda University; and Scripps Clinic and Research Foundation, El Centro. CCRMP, itself, may compile demographic information at one or two sites toward developing cirteria of care; RMP Central New York Colorado—Wyoming Georgia Greater Delaware Valley Hawaii Intermountain Iowa -~2- Arthritis Program Synopsis Central NY Arthritis Foundation will coordinate activities of Upstate Medical Center, and others, to develop referral,diagnosis, and treatment services in outlying areas, especially northern and eastern rural areas of the Region. Rocky Mountain Arthritis Foundation will coordi- nate development and expansion of referral, diag- nosis, treatment, rehabilitation, and training services at UC Med. Center, General Rose Hospital, Gottsche Rehabilitation Hospital, and St. Joseph's Hospital. Up to 8 new, outlying diagnostic and teaching clinics will be established, and visiting multidisciplinary teams will be formed. GRMP will coordinate activities based from Emory University, and Georgia Medica] College to establish model arthritis programs in defined areas of the Region. Service networks will be developed, training will be expanded, and stand- ards for diagnosis, treatment, and rehabilitation will be developed. GDV/RMP will coordinate activities in 6 institu- tions: Univ. Pa., Hahnaman Medical School; Child- rens Seashore House; Thomas Jefferson Univ., Albert Einstein Med. Center; and Temple Univ. Health Sciences Center. Diagnosis, treatment, and rehabilitation will be upgraded at a number of outlying sites. Professional education and training will be expanded. Pediatric services will be improved at a number of sites. University of Hawaii will establish the (ATETCP) Arthritis Treatment, Education and Training Center of the Pacific, comprised of multidisciplinary ‘staff. Extensive outreach services are planned in the Pacific basin, including technician, and patient/family training. Univ. Utah will develop a number of primary and secondary care facilities in the Region. Multi- disciplinary services will be developed as well as a home and midway care program. Education will be provided at U.U., especially focussed on develop- ment of primary and secondary care providers. Univ. of Iowa will establish clinics at Des Moines and Muscatine. Multidisciplinary teams will be established at each site, and professional education will be provided. __RMP Kansas Metropolitan D.C. Michigan Mississippi New Mexico North Carolina Arthritis Program Synopsis Kansas Univ. and the VA Hospital at Kansas City will collaborate in establishment of a referral, diagnosis, treatment, and rehabilitation system based on professional/patient information and education centers to be established at Kansas City, Topeka, Salina, and Wichita, under local sponsorship. Freedmen’s Hospital, and Washington Hospital Center will establish inner city referral, diagnosis, treatment, rehabilitation and training programs. Univ. of Michigan will establish a program speci- fically dealing with needs and problems of geriatric patients (age +55) in a selected area. Special emphasis will be placed on patients who can be made ready, or who are recently released from institutional care. Professional.and. patient education and training will be provided. Univ. of Miss. Medical Center, and the Methodist Rehabilitation Center will establish up to 4 clinics in outlying sections of the Region with physicians trained and cooperating closely with central resources in Jackson. Training will be provided for physician and allied health personnel, and for patients. A nurses handbook in arthritis care may result from a proposed RN preceptor program. NMRMP will coordinate activities of the Univ. N.M., N.M. Arthritis Foundation, and others in establish- ing 2 outlying clinics in selected areas, one of which may incorporate pediatric services. Multi- disciplinary teams will be formed, and local community coordinating committees will be establish- ed. Professional, allied health, and patient/ family training will be provided. N.C. Arthritis Foundation will coordinate a variety of activities. It will also organize referral services, provide literature, and conduct a detection program at Burlington Industries incor- porating the development of services, and a model employer/employee education program. The Asheville ‘Orthopaedic Hospital and Rehabilitation Center will train allied health personnel as physician assist- ants, including drug toxicity monitoring. Univ. NC, Chapel Hill, will improve its clinical operations, and provide a multidisciplinary team to assist the development of outlying model clinics. Duke Univ. will establish outlying clinics, and provide North Dakota Ohio Valley Oklahoma Puerto Rico Tennessee Mid-South Arthritis Program Synopsis professional training. Bowman Gray School of Medicine will establish multidisciplinary teams to improve and expand services at several existing community clinics. N.D. Medical Research Foundation will coordinate the establishment by the Dakota Medical Foundation of 2 pilot centers to develop service delivery systems in designated areas of the Region. Muiti- disciplinary teams and itinerant services will be developed. Medical planning groups will assist coordination, supervise program, and relate activities with AHEC's for coordinated training. Louisville General Hospital, primary center for low income and minority city residents, will expand its services to coordinate a care delivery system in cooperation with Community Hospital, and the VA Hospital. Overall supervision will emanate from the U.L. School of Medicine, Section on Rheumatic Disease. Combined multidisciplinary medical confer- ences will be held. Emphasis will be placed on home care services with active participation of the VNA, the Arthritis Foundation, and other community agencies. Increased professional and patient/ family education will be provided. -0.U. Health Sciences Center will enlarge clinics sponsored by the OU., and VA Hospital, to improve available services. A pilot outreach program will pe organized in cooperation with the Ada Regional Health Development Area Program, as a demonstration in improved rural health services. P