* DEPARTMENT OF HEALTH, EI)UU@l'IU@, ai@L) wnjrt%@r, MEMORANDUM Public Health Service HEALTH RESOURCES ADMINISTRATION BURE@AU OF HEALTH RESOURCES DEVELOPEENT TO A,-Iministrator, HRA DATE: Through: Director, BHRD Acting Associate Director, Health Resources Planning, BHRD FROM Acting Director, DPIT SUBJECT: Proposed Action on RMP Grant Applications for Planning and Development of Pilot Arthritis Programs - ACTION The business of the National Advisory Council for Regional Medical Pro- grams at its meeting on June 13-14, included review and disposition of 43 REP grant applications to carry out pilot activities in the field of arthritis. These applications are requests to participate in a $4.5 million pilot arthritis initiative earmarked in the 1974 RNP appropriation. The 43 arthritis applications requested support totalling $15.9 million against available earmarked funds, after a five percent Administration reserve, of $4,275 000. 0 Council action was acceptance of recommendations of the Arthritis Ad Hoc Review Committee, which provided technical review of the arthritis grant applications on June 23, 24, and 25. The actions of the Committee were the following: 1. Approval for funding of Committee-modified programs in 31 RM?'s for a total of $4,730,$60. (See Attachment A) 2. Establishment of criteria and principles of review toi,7ar achieving cohesive proQram and to obtain best use of the limited, one-year funds. (See Attachment B, pp. 3-6) Outreach was emphasized for pilot development, while,reviewers disparaged automated data, audio-visual, and wholly-public information activities. 3. Recommendations for coordination and evaluation of the Nationa pilot arthritis initiative. (See Attachment B, pp. 6-7) The National Advisory Council ratified the recommendations of the Ad Hoc Committee, and specifically recommended that the highest ranked. programs through the Rank Score of 40 be supported with the earmarked arthritis funds (Attachment A). Council recommended that a way be found to support Page 2 - Administrator, HRA approved, lower-ranked programs. While no vote was taken on this matter, it was suggested that the four (4) lower rank- Regions be permitted dis- cretion to fund oved arthritis activities when: a. the region can identify discretionary funds which it proposes to commit to the one-year approved programs; and, b. it obtains the approval of the Division of Regional Medical Programs to undertake the program. Subject to your approval, we propose to carry out the recommended arthritis program. Herbert B. Pahl, Ph. D. Enclosures Concur- Date Nonconcur Date PUBLIC HEALTH SERVICE HEALTH I'@ESOURCES ADIIINISTRATION BUREAU OF I:EALTH RESOURCES DEVELOPMENT Arthritio,'Ad Hoc Revieir Committee Summary of Committee Recommendations (By Rank.Score) Rank Total Recommended Region Score Requested Total Kansas 85 390,013@ 242,400 Texas 85 356,559 244,200 Arizona 80 241,638 215,000 California 80 726,343 397,250 Georgia 80 595,000 200,000 461,820 216,000 Hawaii 80 Mississippi 80 862,409 58,000 Tri-State 80 844,775 213,370 Wisconsin 80 267,857 62,000 West Pa. 78 @81,05i 140,400 Inter-Nntn. 75 385,463 169,500 Michigan 75 823,413 194,700 N. Dakota 75 340,800 111,000 Arkansas 73 260,011 100,000 New Mexico 73 272,765 163,600 Alabama 70 272,360 2289400 70 385,001 247,500 Grtr Del Val 46,500 Ohio Valley 70 711,166 Iowa 65 87,554 87,550 N. Carolina 65 433,962 211,500 Oklahoma 65 157,526 66,0,50 Central N.Y. 60 92,492 63,700 Metro DIC. 60 845,301 176,900 Virginia 60 188,857 80,000 174,240 Limit of ear- Colo-Wyo. 52 362,621 40 175,975 130,940 marked funds Albany - 92,160 Puerto Rico 40 122,541. Susquehanna 3@ 254,9GI- 139,500 Lakes Area 30 602,500 45,000 Discretionary Wash/Alaska 21 361,167 75,000 Funding Tenn Mid-So. 20 420,401 138,509- ($12,584,242) $4,730,860 Disa,Dproved' Bi-State 164,442 Connecticut 328,183 1/ NOTE: Rank Scores Florida 115,700 Tel-ate to the 449,000 modified program, and Illinois 335,528 not to the original Louisiana 74,346 request. Maine 351,759 Maryland 693,362 Missouri 332,190 Nassau-Suffolk 200,000 @New Jersey 227,829 N.Y. Metro 10,000 No. New Eng. ATTACHMENT B DEPARTMENT OF HEALTH EDUCATION AND WELFARE PUBLIC HEALTH SERVICE HEALTH RESOVJRCES ADMINISTRATION BUREAU OF REALT4 RESOURCES DEVELOPMENT Arthritis Ad Hoc Review Committee Minutes of Meeting May 23, 24, and 25, 1974 2/ Parklawn Building, 5600 Fishers Lane Rockville, Maryland 20852 OPEN SESSION The Committee convened at 9:35 a4m., Thursday, May 23, to conduct technical review and to recommend action on pilot arthritis grant applications received from 43 Regional Medical Programs. The basis of these grants is an appropriation earmark of $4,500,000 in the 1974 appropriation for Regional Medical Programs for planning and development of pilot arthritis centers. With an Administration reserve of five percent, $4,275,000 is available for support of this one-year program. The total amount requested by the 43 applicants was $15,865,000. The Committee made recommendations for approval of up to 31 of the programs with modified budgets totalling approximately $4,600,000. Dr. Herbert Pahl described the purpose of the Committee and charged it to consider the following major issues in its review: a. The establishment of a cohesive arthritis program, insofar as possible, rather than a series of p-:cjec@L-.s. b. The essential elements of a one-year pilot arthritis program. cq The appropriate, respective roles of activities in areas with sophisticated arthritis capabilities, and those with minimal, or dispersed capabilities 1/ Meetings are conducted in accordance with the Federal Advisory Committee Act. Proceedings of the closed portions of meetings, and materials submitted for discussion during such closed portions, are restricted unless cleared by the Office of the Administrator, HRA. 2/ For the record, it is noted that members absent themselves from the meeting when the Council is discussing applications: (a) from their respective institutions, or (b) in which a conflict of interest might occur. This procedure does not, of course, apply to en bloc actions-- only when the application is under individual discussion d. Pilot program character with respect to centralization of effort, and opportunities to stimulate creative actions. e. The realistic scope of one-year program outcomes. f. The appropriate role of local Arthritis Chapters. 9. Feasibility of proposals in the present state of the art. h. The desirability of giving additional weight to selected program elements, such as outreach, response to special population needs, and patient-focused rather than general public-focused program approaches. Mr. Matthew Spear reviewed the background and development of the RNP initiative in arthritis. Miss Marjorie Morrill described how staff review was performed. Mr. Kenneth Baum provided an overview of common characteristics noted in the applications by staff reviewers. Applications for pilot arthritis grant funds included the following: 1. An inpatient ot other central facility. 2. Satellite clinics, or some other kind of satellite or outreach unit. 3. A patient education component usually sponsored by the local chapter of the Arthritis Foundation. 4. A public education component, also sponsored by the local chapter. 5. Some applications proposed special children's facilities, or Lupus clinics. 6. Many applications omitted essential elements requested in the Arthritis Guidelines, in most cases, it is presumed, because of time constraints (e.g., justification of need, adequate evaluation, assurance of future funding). 7'. Assertions that specific agents would assume responsibility or continuation of program elements were in no case accompained by commitment letters which specifically bledged followup support. 8. Many applications contain requests for significant hardware acquisitions, including vehicles, laboratory devices and supplies, film and tape production and projection equipment. 9. Some applications contain clear, or implied elements of research, patient care reimbursement and professional fellowships and stipends. 2 Members of the Committee: Chairman: Roger D. Mason, M.D. Phyllis C. Annett, RN Carroll B. Larson, M.D. Joseph P. Ba4-ley, M.D. Frank R. Schmid, M.D. William F. Donaldson, M.D. Lawrence E. Shulman, M.D. Ephraim P. Engleman:, M.D. Frances B. Silverstein, (OTR) Henry L. Feffer, M.D. Honora Wilson (SW) Alicia Hastings, M.D. Patricia Yarborough (PT) John E. Kralewski, Ph.D. Ex Officiot John Gramlich, M.D. Others who attended the Review Meeting: (Names of attending DRMP staff are appended at the end of this document.) Joan Fredericks NIAMDD-NIH Bernice C. Harper, Div. of Long Term Care, BHRD Frances Howard, National Library of Medicine Ann MoldenhAuer, HRA-OA-CNB Muriel Shurr, Administration on Aging, DHEW Irene D. Skinner, HRA-OA-CNB Dr. J. Paul Thomas, Rehabilitation Services Administration, DHEW Remarks by members of the Public were called for by Dr. Herbert Pahl. There were no comments by guests, and the Open Session was adjourned. CLOSED SESSION The Committee reviewed the 43 arthritis grant applications received, and agreed to priorities which would govern its recommendations. These were expressed in Resolutions and Guides voted by the Committee. The Committee expressly recognized that constraints placed on approvable pilot arthritis programs resulted in recommended disapproval of meritorious programs and activities, but which in the CoEmittee's perspectives of program funding and time constraints, could not be undertaken effectively at this time. The Committee also agreed that its rules should not be completely rigid, and that it would recommend approval of otherwise excluded activities in selected, outstanding areas. The Resolutions and Guides by the Committee are: 1. OUTREACH Resolution: The major thrust of approved pilot arthritis programs Thall be outreach. BackRround: The Committee noted examples of requests for personnel, equipment, and other support for centers which appeared to represent an overwhelming emphasis on the further development of an o-ii-goin-, center.11 The Committee characterized this as "inreach.11 It was recog- nized that some support of centers is in order to conduct an outreach program. The center is often the source of reaching out, and up.grad- ing of center resources to the degree necessary to initiate and conduct outreach is appropriate. The main thrust, however, should be the improvement of patient access to the health system, and the respective levels of care which it can provide. Facilitation of patient access and entry into the system should be emphasized. The intended thrust of the pilot arthritis program cannot be fulfilled if centers only keep bring- ing patients into the centers. While much should be expected of the larger, established programs, equal or greater needs and lessons are present in lesser developed areas. DATA COLLECTION, AND AUTOMATED REGISTRIES AND DATA BANK8 Resolution: Separate arthritis data banks and registr es should not be funded. Program statistics should conform to American Rheumatism Association (ARA) standards as these are developed. Ba ound: While it is recognized that specific data is required to plan, conduct, and evaluate pilot arthritis programs, the Committee was opposed to the expenditure of relatively large sums for a variety of data gathering and analysis activities, especially those proposed to be automated at many sites, and in different ways. It was noted that the ARA is conducting a study to develop standardized nomenclature and reporting, and these will be published. The support of automated data programs with the limited pilot arthritis funds appears to be premature, and unduly costly in view of the uniform approach to these needs which is being developed. The Committee felt that State Health Agencies would be more appropriately responsible for morbidity and prevalence data. There is pending Federal legislation whic'n, if enacted, would more adequately address arthritis data needs. III. FILM/TAPE DEVELOPIMENT, AND PRODUCTION FOR PUBLIC AND PATIENT EDU-ATION, AND OTHER INFOMMATION PURPOSES Resolution: Those portions of arthritis program applications which request support for the purchase of hardware for film and tape production should not be funded. The Committee would consent to the support of software costs if the pro-ram is otherwise approvable. The widespread development of such materials is not considered wise when superior products can be obtained through qualified sources. The Committee recom- mends that DRIP and the concerned @ 's cooperate to provide coordinated identification and procurement from central, qualified sources of widely needed film and video tape materials. BackRround: While the Committee members were personally aware of the capabilities of films and cassettes for patient and other educational activities, it was not considered wise to support the volume and diver- sity of requests made for these purposes. The needs for such rLaterials @4 is Nation-wide, and considerable expertise is required to efficiently produce high quality materials. The high cost reflected in the appli- cations does not appear to be a productive way to employ the limited FM funds. Previous RNP experience in this area has demonstrated that extraordinary administrative problems are encountered in obtaining C4 first-rate products, even in fa @lities with sophisticated equipment and expertise. There are a number of institutions which operate high quality audio-visual facilities where equipment presently exists (Michigan was noted). It was proposed that the DRNP might cooperate through concerned RMP's to produce selected video tapes, on subject matter widely sought, through one or two experienced centers. IV. PUBLIC EDUCATION (and fund raising) Resolution: Activities geared solely to public education will not be supported. Background: A number of the arthritis grant applications requested 8up- port for audio-visual equipment, vehicles, printing, publications, and items related to mailing, etc,, for purposes of public education. The Committee deliberated on the distinctions between patient and family education, and professional and paraprofessional training which it viewed as meritorious and appropriate in the pilot program, and public education. The Committee determined that public education was not an appropriate use of the limited RNP arthritis funds. Such activities appear to be more appropriate for support by Chapters of the Arthritis Foundation, local departments of health, and medical societies. The Committee drew a distinction between undesirable public education, and other desirable types of education by noting the use of vans and other equipment used in British Columbia to provide services to patients, and to extend specific training and education to patients, their families, and local medical and health personnel about arthritis disease treatment. Another example is the dissemination of information about diagnosis and treatment of gout, an eminently treatable disease for which appropriate diagnosis and treatment is not always made available outside of centers. Such activities are appropriate elements of the pilot arthritis grant program. Specific note was taken of requests for support of overt, or implied fund-raising activities. Use of Federal funds for this purpose is prohibited. V. EQUIPMENT (including vehicles) Guide: In view of the one-year availability of the RNP, arthritis funds'. lease or rental of expensive items of equipment should be seriously investigated before commitments are made to purchase. Background: Activities without firm continuation support may unnec- essarily commit limited funds to equipment which cannot be effectively utilized when program support ends. VI. RESIDENCIES AND FELLOWSHIPS Guide: The Committee emphasized compliance with DHEW policies,with respect to professional training and education. Background: Various applications included requests for support of residencies, fellowships, and other education'activities which can- not be supported under RMP policies. FM#s which did not apply for pilot arthritis program support, and which were not considered by the Committee were: Indiana Oregon Memphis Rochester Mountain States South Carolina Nebraska South Dakota Northlands West Virginia The Committee individually reviewed and assessed the applications from the remaining 43 RMP'S, and ranking, and ranking scores of applications recommend- ed for approval were established by the Committee on the basis of modified program recommended by the Committee. The Committee expressed interest and concern about effective arthritis program coordination and outcome. The following alternative actions were recommended for consideration by the DRNP, and the Bureau of Health Services Development. A. Program Communication 1. The development and experiences of innovative activities conducted under the pilot arthritis program should be widely publicized. 2. A periodic newsletter, or similar communication about developments in the supported programs should be supported by BHRD. This would increase shared experiences, and reduce duplication of effort. B. Program Development 1. Programs should be required to make quarter y reports. 2. Funded programs should proceed to acquire needed personnel, and to refine program priorities, methods and objectives in the context of final recommendations. At the end of 3 months, programs should be able to report that they are underway on clearly defined arthritis programs. 3. At the end of 6 months, funded programs should have All personnel and organization in hand, and be operational. 6 C. Program Evaluation There should be a conference in 6 months, or so, at which the agency, and/or the Committee looks at what is going on among funded programs. D. Disposition of Committee Recommendations DRMP should advise the members of the Committee about National Advisory Council actions on the pilot arthritis program, and the final,disposition of the earmarked funds. Committee members stated, and reiterated their concern about funding for arthritis (from the Transcript) "...the efforts of this Committee have been exemplary as far as acting to the best interests and adhering to the guide- lines proposed... we consider this a very meager effort toward a tremendous problem, and it in no way reaches a point of beginning to provide a solution of any definitive kind, and that additional funding to include many of the projects that were rejected, as well as a multitude of other projects which should have been submitted that were not submitted because of the guidelines provided by legislation should be considered when such monies become avail- able." The Committee adjourned at 1:35 p.m., Saturday, May 25, 1974. DRMP Staff Members present at Meeting Dr Pahl Walter C. Levi Mr. Chambliss Marjorie Morrill Matt Spear Joe Ott Kenneth Baum Mike Posta Sylvia Berman Abraham Ringel Virginia Dunleavy Morton Robins Rita Fox Mildred Roelle Gerald Gardell Jerry Stolov Reynetta Hackley Calvin Sullivan Ethel Hawkins Gerald Teets Peggy Henson Margaret Welsh Gloria Hicks Joyce Wilkinson Bea Kauffman Lee Van Winkle Marian Leach Dick Russell