ve

#000531"
Committee consisted of: David Howell, Dan McCarty, Larry Shulman, Clem Sledge
John Vaughan, Max Weiner, Henry Mankin as Chairman)

The Committee in its deliberations had discussed the goals of research in an
arthritis center and indicated that these were basically as follows:

1. to increase fundamental knowledge regarding arthritis and allied disorders ;
2. to improve the quality of patient care;

3. and to seek cures or controls for the various disease states.

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

1. types of research

bed needs for clinical research

laboratory needs for basic research

relevance of research activities

oa FF we N

cooperative research

It should be pointed out it became apparent to the Committee that the relevance

was intimately tied with the first item which was the types of research and this

was not separately discussed.

1. types of research . . in regards to type of research, the committee agreed that
there were five general areas of research activities which would be of
importance in an arthritis center. These include : A. Basic research

which could otherwise be spoken of as model or fundamental. These should
hysiology

‘occur in areas including genetics, pathop. , cell biology ,

immunology, microbiology, bioengineering, and biochemestry.
The second broad catagory of reseanch activities would be patient oriented
research. This would include research endeavors in the fields of epidemology
and demography; physcosocial aspects of disease; biological aspects of disease
(specifically, analysis of disease states on the basis of laboratory tests) and

observations regarding the natural history of disease entities.

The third catagory of research was in the field of management research which
principally “has to do with the care of the patient. This would include investigation
in the fields of delivery of health services; surgical treatment of arthritis

and allied disorders: drug therapy: and rehabilitation measures to

alleviate crippling disorders.

The fourth catagory of research is in the field of measurement. This includes
principally the aspect of data input, storage and retrieval and presumably would

be on a national basis SO that all centers could utilize the data generated by

the programs. The important consideration in this area that coding and input
information be of sufficient breath and depth to not exclude areas which will subsequentl

become important.

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

those in other disciplines.

The second question asked by the group was regarding number of beds which would
be required for a competent clinical research unit within an arthritis center. .

In consideration, of this point, it seems logical to regard the composition
of the committee at the resident faculty of an arthritis center. Fortuitously

our committee was made up of four rheumatoligists of diverse interests, two

orthopedists and one psychologist all of whom are engaged in clinical practice, education,
and research in the fields of arthritis and allied diseases. On the basis of their
respective needs and considerations related respective prejects, it was

estimated that a clinical research unit within an arthritis center would require

10 to 12 beds occupying 5,000 square feet of space. Appended to this system would

be a core laboratory occupying 600 square feet of space. In addition, facilities

would be required for the accomodation of 200 out-patient visits per month.

The thrid question was the problem of the laboratory requirements for basic
research in the arthritis center. In the criteria used for the prior discussion
was applied to the circumstances as well. Four rheumatoligists, two orthopedists,
and one psychologist merged into an arthritis center in a large urban area
indicated their needs for their type of activities. It is-estimated on this

basis that 15,000 square feet of space would be required and it would be occupied
by 20 investigators. The investigative team would in addition have technical

help and shared common space of sufficient magnitude to carry on the types of

activities that they ordinarily would perform.

The next question which was addressed was that of the need for and characteristics
cooperative research in an arthritis center. It seemed logical that four types
of cooperative activities would be carried on by a unit of this sort. The first
was in the area of data retrieval. It was apparent that if arthritis centers

are to be built in various parts of the country, all data should be pooled for
ready access and cooperative studies. Thus uniform coding system and centeral

computer facilities might be very desirable for such a system.
The secondary of coopeative research would be related to the probability that

no center would have personnel and patient distribution which would allow

a uniform expertise and interest in all of the range of diseases within the

domain of arthritis and allied disorders. It would seem logical that under

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

various centers. Thus one center might have as its principal activity, the
research, education and service in the field of lupus while another might

choose rheumatoid arthritis, etc.

The third area of cooperative research would be in the form of "pooled protocols".
Thus one of the centers which had an assigned thrust in the field of lupus might-
promulgate a protocol for management of patients and send such to all participating
dvid/sé¢fd centers for a uniform treatment of patients. This would enhance the
research program and presumably the quality of care.

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

national conferences which would be held throughout the year and involve

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

It is apparent in consideration of this report that the research activities
discussed are those of the optimal center. In this case, consisting of

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

It is clear that funding may be limited and that faculties of this sort would not -
be likely except under very unusual circumstances. Under-these—restrictions,

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

perform such research.

~~

Respectfully submitted,

Henry Mankin, M.D.
MAGLUOIIIPUIT UNUIP mem omer cm ween me om ww ee we ET SE A

rd

Members: Calkins, Christian, Funk, D. Murray, Pigg, Polley, Rodnan

I. DEFINITION OF THE PROBLEM

It is generally agreed that there is at the present time an inadequate number of
rheumatologists to meet the demands presented by patients with rehumatic diseases.
The gap between the number of available rheumatologists and the number required to

meet the need of patient care is projected to increase, rather than decrease.

The Committee discussed the report entitled Professional Manpower in Rheumatology
published by The Arthritis Foundation in January, 1973. This report cites the fact
that one quarter of all medical schools lack organized rheumatology units with full
time faculty. Even in those schools which do have rheumatology programs, the number
of faculty is too small to meet the needs for teaching. As a result, the amount

of time devoted to studying musculosketal disease is inadequate. Specifically, as
of 1971, medical students received én the average of less than 12 hours of classroom
training in musculosketetal diseases in the pre-clinical years. Less than 10% of
the saudents received additional clinical teaching in rheumatology in the clinical

~

years.
On the level of house staff training , even in those schools with active full time
“rheumatology units, less than half of the medical residents have formal rotations
through the rheumatology service. An even smaller percentage of time is spent

in rheumatology in training programs in pediatrics, orthopaedic surgery amd family
medicine.

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

and traineeships in rheumatology. Approximately half of these were supported by

USPHS training grants. (This lattet program is scheduled for discontinuation in 1976.)
Although some additional support may be provided thoough hospital residencies, this

program too, is meeting with serious financial constraints. It is obvious that under
PIGOEHE Prugererenes were eee we eee ee
and traineeships in the field of rheumatology starting in 1976.

It should be noted that there is a direct relationship between the number of fellows
and trainees receiving training in rheumatoTogy amd the number of specialists

entering the field. A survey was teken in 197) of 61 trainees and fellows, supported
by HIH training grants, who terminated their training in the calendar year 1969.
INformation was obtained from al] but two of these. Ten reported career decisions
were postponed due to military service, further training, etc. Of the remaining 49,
43 reported significant teaching or research responsibilities; of these, 32 were

in full time academic positions. Of these, 21 were in the field of rheumatology; 3 in

related fields. Thus of 61 PHS supported trainees, 21 (or one third) had entered

full time academic postions in rheumatology.

Post-yraduate programs for practicing physicians:

Although there has been a striking increase in the number of post=graduate courses
in rheumtologys opportunities for graduate preceptorships for practicing physicians
have been few. In the opinion of this subcommittee, these latter programs are much

more effective and should receive greater attention in the future.

Allied Health: The defitiencies noted above, for medical students and physécians,
are even more apparant in the allied health disciplines. Although there was an
initial spurt in this regard, when the Arthritis Foundation's Centers were initially
funded, the scope of these programs has become markedly reducad as the funding for
each of these Centers has been curtailed. These deficiencies will be further
accentuated by new trends in health care (increasing emphasis on comprehensive
continuing care of patients with chronic illnees, on ambulatory care, and on efforts
to keep patients out of the line of hospitals). With this, there is an increasing
appreciation of the need for allied he. «th professions as members of the patient care

team. Furthermore, as new health care legislation emphasizes public education, theee
wili be increasing expectation, on the part of patients with chromic illness, for
comprehensive care. These trends will inevitably resut in the further accentuation

of the needs outlined above.

Facilities: Oppor'tunities to move ahead in this area are limited, at. the preseat,
not onlyby deficiencies of faculty, but also by apooity of appropriate facilities

for these educational programs.

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

- by a single pattern of centers...

It is further self-evident that appropriate patterns of funding are not presently
available to accomplish these goals. Increasing shortage of research funds has
long since prevented the previous (and regrettable) pattern under which these funds
were used to support education and patient care. In addition, use of patient care

funds to provide support for education is also being challenged.

Specifically, we recommend the following:
1. Support for the establishment of rheumatology units in those medical schools
currently lacking arthritss units.
2. Strengthening of presently existing units so as to improve teaching and
to permit expansion of the teaching of medical house staff and allied health professionals.
3. Increasing support for the training of fellows in rheumatic disease. In | .
rheumatology. The need » here, is particularly acute én view of the phase out of the
USPHS training programs planned for 1976.
| 4. The development of satellite centers, hopefully but not necessarily connected

with medical schools. These Centers will provide a setting for the education of allied

health professionals and local physicians.
Fa

y a

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

treat disease.

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

clearly be important in future approaches to health care.
April 1, 1974 DISCUSSION GROUP 4........ LOCATION OF CENTERS

Participants: Weiss, C. Smyth, Henderson, W. Murray, Spear, Austen, Wolkonsky, Ziff)

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

broadly based generalities.

The Committee addressed itself to the following questions:

I. SHOULD THE CENTERS BE FREE-STANDING AUTONOMOUS UNITS?

(a) Physically? -- A Center need not be a free-standing institution.

(b) Organizationally? -- There must be a fiscally responsible organization in which
the principal investigator or co-principal investigators function. This should
be the governing body of one of the institutions under which the Center operates.

Such an institution should be either a University or Hospital or a Foundation.

I]. CAN MULTIPLE MEDICAL FACILITIES BE USED BY A SINGLE CENTER?
There nay be more than one institution involved and the center must have multi-

- disciplinary capability.

IJI. POPULATION REQUIREMENTS
A population base of from 500,000 to 3,000,000 appears to be necessary to support
the service requirements of the Center. These figures may be altered in sparsely

populated areas or under certain special circumstances.
Page 2

IV.

SHOULD THE CENTERS BE IN MEDICAL SCHOOLS?

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

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

V.
(a)

(b)

(c)

(d)

VI.

GEOGRAPHIC DISTRIBUTION

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

may depend on many factors.

A broad distribution of centers across the country seems wise

The precise location of individual centers in a region will probably depend on the
strength of the application and on the activities encompassed by the

institutions making the application.

Individual applications for center designation and funding may represent the .
combined efforts of several institutions with dn appropriate central organization

and administration.

IS THE LOCATION OF A CENTER TO BE DETERMINED BY:
(A) PATIENT CARE FACTORS? (B) EDUCATIONAL NEEDS? (C) RESEARCH FACTORS?

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

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

capabilities in the three areas but all must be represented.
DISCUSSION GROUP 5 ....... COMMUNITY RELATIONSHIPS

Preamble:

Fundamental to the establishment of good community relationships jis the proper
structuring of the center program.. We recognize that the importance of basing
these centers on local needs and capabilities. Size and nature of the communi ty
involved need to be considered. Some centers will be primarily concerned with
patient care, clinical research and education on a local level, while others
with more sophisticated facilities will be capable of more advanced education

and basic research as well.

The basic unit would be the acute care hospital facility and locally concerned
physicians, and would be applicable to both small and large communities. Regions
of large populations, however, would also require cooperative correlation of
capabilities with controlling boards of directors. Maximum efficiency could

‘be best obtained by coordination of the entire program at the national level.

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

community on this basis.

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

established protocols of patient care and.cata gathering

Little difficulty in relationship with primary care physicians is anticipated
-2- |
provided good to and fro communication is maintained.

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

of arthritic patients.

The panel felt that £A¢ public information was important both at a local and
ata national level, and should be concerned with the problem presented by

rheumatic disease, and that something could and should be done about it.

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

other centers and with the national coordinating council.

Local Rheumatism and Orthopaedic Societies should be used for continuing

education and for liaison between centers. The use of a common (computerized).

data base would facilitate such communication.

Meeting the consultative needs of the community are felt to be an inherent

responsibility of the arthritis center.
-3-

Cheonic disease hospitals and universities, nowever, should be redesigned
or modified to.meet the needs of the arthritic patient. Domiciliary care
alone should be avoided wherever possible. Hospitals should be included in

the arthritis center program.

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

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

Satellite clinics should be included in the concept of the center with emphasis
on the education of local medical professionals and allied health personne}
to provide local capability to take over the care of the arthritic patients

with assistance from the center. —

The team should consist of consulting rheumatologists and orthopaedic surgeons
with paramedical personnel, and when it becomes practical, 2-way T.V. should

provide a useful means of communication.

As the need arises in outlying communities, rheumatologists should be situated

in them, f7y¢f as need dictates.

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

communication and a spirit of cooperation. .
ae *
ae

GROUP 6 . . CRITICAL MASS IN CENTERS

Christian, Engleman, McCarty, D. Murray, Polley, Shields, Sledge, Shobe, Spear

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

patient care.

BEDS
Protected beds is considered to be the key to the successful development of an
economically viable unit. The number of beds is tied to the size of nursing units

for specialized care. This is of the order of 12-20 beds or multiples thereof.

There was unanimity of opinion that medical and surgical beds could be combined
in a rheumatic disease unit, provided that the orthopaedic beds were related to
arthritis. The 2-6 additional beds are suggested for clinical research but

ideally they should be geographically attached to the nursing unit. An extended

care facility geographically in proximity to the center with approximately the

same number of beds as the center is also considered valuable and important economical ly

for optimal utilization of the facilities of the unit.

STAFF

 

The staffing of an ideal rheumatic disease center would include (1) a director
who most likely is a rheumatologist who has demonstrated a scholarly and critical
appreciation of rheumatic diseases; (2) an assistant director who is capable

of leadership functions in the absence of the director and who also is a
scientifically oriented physician. (3) two other full-time staff physicians with

rheumatological training and expertise. (4) one staff orthopacdist experienced
and qualified in reconstructive orthopaedic surgery including hand surgery

in the minimally sized unit. Specialized hand surgeons should be available for
consultation and, in a larger unit, a full-time hand surgeon would be expected.
(5) all other medical consultants including rehabilitation medicine, neurology,
psychiatry and other components of a medical center too numerous to mention are
expected to be available when needed. The concepts of rehabilitation medicine
are expected to be utilized in an arthritis center in order to restore each
patient to his or her fullest potential in society. In different situations,
rheumatologists, physiatrists, physical therapists or others ‘interested in re-

habilitation could and do fulfill this requirement.

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

are nurses, nurses aids and clerk-typists.

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

and retrieval).

(7) Also included in the staff roster would be four rheumatology fellows who
also participate in on-going research programs, and, on rotational assignments,

available house staff and medical students.

(8) The critical mass for a rheumatology unit should also include a smal] service

type laboratory capable of performing low volume, highly specialized procedures;
wat

x,
)

two technicians and 200-600 square feet were considered appropriate.

POPULATION BASE |

The population base to support a 20-bed unit was considered to be from 700,000 to
7,000,000 persons. A single hospital base which includes all the critical
components for the unit is. recommended. Satellite, out-reach programs would be
considered highly desirable in order to extend the center's function to a wider
population base. The center's function should include exemplary patient care

but this is not incompatible with the development of areas of special research

interest.

FUNDING

The 20-bed minimally sized unit was divided into six beds for orthopaedics and

14 for rheumatology but with flexible exchange from time to time, plus two beds

for clinical research. The minimal self-supporting full time staff would include:
one orthopaedist, three rheumatologists, three physical therapists and one
occupational therapist. The budget for staff beyond that supported by third party
carriers would include: 1/2 time orthopaedist, two rheumatologists and one physical
therapist, four fellows, one nurse practitioner and one social service worker.

These minimal projections can be extrapolated up to the size of 80 beds at which
point a bioengineer, vocational rehabilitationist, a coordinator or director of
education in nursing and physical therapy would be needed and could be justified

by the increased size of the unit.

The Satellite participants in the center program would be self-sufficient at

‘the patient care level but provision needs to be made for educational functions of —

the satellite participants both in their community hospital and in the center.

It is suggested that existing centers add only those components needed to achieve
Aa, ~ ' Ly tt . feocuT™ .
O VA BWI OF fev Dt A Sat Cae
i

GROUP 7: (Members: Clayton, Decker, Smythe, Weiner, Weiss, Ziff)

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

The subject on the agenda which took up most of the discussion time dealt with
the first topic: "The Internal Structure of the Unit." In agreement with the
recommendations given by the Committee on Location of Units, it was agreed that
the units could exist in either a medical school, a hospital appropriately
qualified or in an institution under the direction of a foundation. The fiscally
responsible body would be the governing body of the institution. Under the ,
governing body, the direction of the unit would proceed through the Dean or

the appropriate administrator. In direct charge of the unit would be a Director.
The Director would be either an internist or an orthopaedic surgeon, depending :
upon the character of the institution involved. Assisting the Director would be
an Administrative Assistant, a secretarial staff and computer specialists. The
computer services would consist of data analysis, record keeping and evaluation
of patient care. The Director would be advised by an Advisory Committee.
Suggestions for membership on such an Advisory Commitee would be the Dean or
Administrator or their respresentative, the Chairman of the local Arthritis

& Rheumatism Chapter's Scientific Committee, one or more rheumatologists in
practice, the head of the local Visiting Nurse service, one or more members of

the faculty and one or more patients. Other possibilities for membership are

open.
-2-

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

laboratory.

Under the Director there would also be a Clinical Section with a clinical
coordinator who would not necessarily be a physician. The Clinical Section
would consist of one or more out-patient clinics, preferably combined clinics,
in which the various disciplines would be represented. It would also be
responsible for in-hospital patients. The Committee felt that the staff
should meet at least once a week for combined rounds. The Clinical Section
would also offer consultation services to hospitals (both local and regional),
to physicians in private practice (both local and regional) and to Health
Maintenance Organizations. Represented in the Clinical Section should be

at least two rheumatologists and one or more orthopaedists. Radiology,
Physiatry, Pediatrics, Clinical Psychology and Clinical Pharmacology should
also be represented as indicated. Allied health personnel should include one
or more nurses, physical therapists, occupational therapists and social workers.
An orthotist should be available. The allied health professionals should be
supervised according to conditions prevailing in the institution. However,

at least one individual in each category should be permanently assigned to the

unit. Others may rotate through the unit.
-3-

The Director and his coordinating body would also be responsible for a program
of education. The education would be directed at medical students, house staff,
fellows, allied health professionals and physicians receiving continuing education.

Patient, family and community education should also be a function of the center.

The maximum and minimum budgets were calculated. A maximum budget was calculated
for a program which would include 8 staff members, 8 fellows, 4 therapists, 12
technicians, 3 laboratory aids, ad administrative secretary and 8 additional
secretaries, 2 nurses and 3 clinic clerks. The cost for this personnel would

be $725,000. A minimum budget was calculated listing 4 staff members and a:
substantial reduction in other ‘personnel. This personnel budget came to $417,000.
For both budgets, an equipment item of $100,000 and a travel item of $35,000
were estimated. The travel item included staff travel to conferences, staff
travel regionally for educational purposes, including honoraria, and patient
transportation. A miscellaneous budget including publication costs,

consultants fees, phone service,etc., was calculated in both budgets at

$9,000. The maximum budget totalled $869,000; the minimum budget totalled
$561,000. | a

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

funding to the local institution.

The budget may vary, of course, in different institutions. For instance,
-4-

education of allied health personnel may have to be underwritten in certain
institutions. In others, the continuing education of physicians in practice

may need to be underwritten.

In conclusion, the Committee felt that there should be a designated Director
but that the unit would function best as a "family" of investigators who would
serve as a coordinating body. For this reason the Committee did not include
an executive committee in its structure. Finally, the Committee felt that its
guidelines were flexible and that their interpretation and execution would
vary in different institutions, depending on locally available talent and

facilities.
eee , ther pemron
eS Mews

DISCUSSION GROUP 8: . FUNDING ao gael tla notanp (Z)
ae ae [ee Koon ay
ao . WAG atl A677 aca )
(y The committee addressed itself’ not to, allocation of Funds 5 butrpR=purely
J —_— 3

to the sources of funds¥ because centers will vary in ‘size “and “content, these sources

of funds may vary accordingly.
1. How do center funds relate to other sources, €.9.; third-party payors?

Other sources besides third-party sources include Arthritis foundation¢ -
funds (private sector, community funds, etc.); other agencies (private, such aS»
foundations, industry, women's clubs, etc., and other voluntary agencies, such asx
Easter Seals); local and state agencies (such as; x those for the saz care of the
handicapped, medical and vocational rehabilitation, visiting nurses association,
etc.)3 and federal patient care ‘and research funds.

Third-party payments should be used for all re-imbursible expenses,
and efforts should be made to expand coverage by& such payors for chronic
diseases y such asy arthritis.

Center funds, proper should go to expanding non-reimbursible education
and research costs aimed at improving the care of presently unreached and un-
reachable patients with & rheumatic diseases, and at least partly should go for

the development of innovative methods in every area of research, prevention,

therapy and delivery of care.

2, When should what patients be supported by center funds?

Patients should be supported by center funds only in centers that ‘don't
Gepecal CW wie oN Boge ate we Cedar Coe RY
haver\GtRCj funds and only in exceptional and selected instances, for research and

educationy not covered by existing service care payment sources.

3, What laboratory tests should be supported by center funds?
As for laboratory tests, center funds may be used for the development

and demonstration of & new and improved methods of laboratory testing for diagnosis

”
~2-
and evaluation of rheumatic diseases. Center funds may also appropriately be
used to establish, where needed, a regional center laboratory to provide laboratory

services for outlying hospitals with the goal of later self-sufficiency.

4. Define center responsibility for patient care.

It is recognized that existing centers are already actively engaged
in and responsible for their own provision of patient care,in-thein-own-or-in
satelite-facititdes. Center responsibilities should include the setting and
improving of standards for patient care in these institutions, aed + sails Balebes

While center funds should not be used for direct patient care, it must ©
be recognized that many of these patients do have serious financial problems in

ehryewmic,

underwriting their own care requirements, because of the eschcshy and disabling

nature of their disease, which denies them the usual third-party coverage.

5. Cost and need for bed services?

We have already stated above our views on the center's areas of
responsibility. In these terms, an average center might be expected to require
20 to 25 beds for research, education and specialized care in rheumatology,
orthopedic surgery and allied health areas.

The cost of this number of beds is estimated at 1-1.5 milliong dollars
annually, of which 50% or more may be reimbursible by third-party payments. The ~
remaining cost would be an | appropriate responsibility of the arthritis center.

Equally important and appropriate would be @ provision by the center
and its affiliated hospitals of comparable support (ie, on the order of magnitude
of a half million dollars per year per center) for such things as ambulatory or
out-patient research, education and specialized activities and demonstrations}

mid-way and extendea care; and related activities.

6. Need for internal review.

Depending upon the size of the centers, certain funds may be necessary
-3-
to provide administrative review, both fiscal and scientific. In addition, the
governing body of the administering institution (university, hospital or
foundation) has, by law, a responsibility and accountabiiity for fiscal review.
It will be the specific responsibility of such reviewers to insure that fund
application is in full keguxK compliance with the requirements of the funding

organization.

7. Administrative needs for above.

Where the size of the center warrants, a special skilled administrator

of funds should be provided.

CONCLUSIONS:

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

name.

“2. Funding of such centers should be at a level such as to permit the
development of a broad range of centers geographically and demographically. It
is suggested, for example, that if $20 millions’ dollars annually.were to be made
available, the funding of 40 such centers would be appropriate.

3. Funds received from federal or other comparable sources should be
regarded as "seed money" in the sense that every effort should be made to develop

substantial additional funds.
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GROUP 9...... (Members: Bateman, Calkins, Nickel, Linenberg, Pigg,

Shulman, C. Smyth, Vaughan)

The key to the Center concept is the development of a complex but essential
set of relationships. These relationships are in large measure, positive
relationships, that is, things to do to achieve success. But also of importance

are to list some things that would be important to avoid.

Many of these relationships already are formed and the programs would build
on them. Others would, of necessity, be new relationships to be developed.

It is well to think of the relationships in four main headings as
relationships to: (1) academic institutions, (2) primary eure physicians,

(3) different political organizations and (4) the consumer. It is the opinion
of the group that these relationships, in general, are quite obvious and have
been discussed by other groups and will be discussed again and again so that

enlargement of these in themselves would be inappropriate at this time.

To foster the all important relationship with the community, we believe it

should be emphasized that these groups should be encouraged to participate
actively in the center and become, in fact, a part of the center activity.

By this, of course, we mean the local Rheumatism Societies and similarly

involved organizations. We would again like to emphas ize as was done

yesterday, that a center is not just a single unit but could well be a variety of
types of organizations, including related institutions of different degrees of

sophistication and different types of facilities for particular activities.
~2-

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

medical or surgical ward.

Doctor Bateman pointed out that the word “autonomous" might be better to use

than the phrase "free standing" as having probably considerably less of a negative
feedback in the relationships of the four types listed above, while still |
maintaining control of its own activities as far as patient care is concerned

as well as education, research and particularly fund raising.

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

of a center:

~~ +

1. The relationship with the university or educational institution.

2. The critical mass of clinical disciplines and their interrelationships --
being identified as a categorical unit.

3. The educational programs. This has also been emphasized on a number of
occassions and includes the medical student, house officer, feljows,
continuing education of physicians, allied health professionals and the
public. | \

4. Research, both clinical and clinically related research, emphasizing

that each center would have at least one or two particular areas in
which particular attention was paid to some avenue of inquiry. |

5. Conmunity relationships which were well covered in the discussion yesterday.
Probably one of the best examples of a good relationship that would develop in
centers is exemplified in a meeting such as this in which the different
disciplines such as Rheumatology, Orthopaedics and Allied Health met to

achieve a common goal.

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

develop to enormous size.

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

relatively small percentage of the total problem.

Another danger the group discussed was that somehow the image might be
projected that this would be used as some sort of gimmick to continue the

type of basic research that has fallen into disrepute when, in aetual fact,

the act clearly outlines that basic research related to clinical problems would

be very actively supported.
~

-4-

It was also emphasized that one of the dangers was that these funds might
be construed to mean just continuing programs already in existence, rather

than fulfilling goals of this new legislation to develop new afd programs

and improve already existing programs.

There was a constant repetition and emphasis of the fact that there needs to
be a great degree of flexibility permited with the likelihood that the
diversity, etc. would actually enhance the eventual development of optimum

models that other, possibly less successful centers, could then follow.

A final point that directly bears on the emphasis of relationships is that a

center is an organizational plan rather than just a facility.

~~
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“Discussion Group 160 - Evaluation of Centers

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Prepared by Dr. Funk, Dr. Gatter, Dr. Howell, Dr. Manken, Dr. Murray and Dr. Austen

1. Internal Audit of Activities

 

The internal audit of activities must be both quantitive and qualitative and
in terms of patient care objectives, education and research. As regards patient care
from a quantitive point of view, this would merely be ennummeration of the ambulatory
and in-patient populations under going surgical and medical care, With respect to
quality, this would include the usual activities, such 0 wecord audit, (which
may well move to Professional Standards Review Organization control), laboratory
quality analysis and morbidity and mortality conferences.

With respect to educational objectives, the quantitative analysis would be
jn terms of numbers of medical students, post graduate fellows,(clinical and research
in orientation} practicing rheumatolé@gists and reconstructive orthopedic surgeons
in continuing education,and allied health personnel being developed, and education
in an out-reach sense of physicians in the community and region. With respect to
quality of the education program, this can be evaluated utilizing the in-training

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evaluation programs, a44 also recommended for allied help professionals while the
use of sclf-aesessment may suffice for medical rheumatologists. It is even hoped
that self-assessment examinations can become a part of the out-reach program to
aééess the knowledge of individuals before and as a consequence of their experience
with the center. The quality of continuing education programs could be evaluated by
the pupils and some insight in to the overall educational program can be gained from
the number of conferences and the ratio of the faculty to various student groups.

With regard to basic and applied research, the evaluation would be along
existing NIH progress report lines with consideration of both the quantity and
quality of the activity. As withérejardéathe recommend: Liowot discussion group #1,

attention would also be directed to accomplishments in treatment-oriented research,

measurement techniques with data retrieval] and research in education; the evaluation
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“of these efforts will be more readily apparent from an external review than perhaps

internally.

Unit Item #2: Utilization of Beds

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

is to be evaluated on a cost basis would be a calculation of the cost per year for

specific clinical diagnosis so as to take into account the relationship of ambulatory

to in-patient care.

Unit Item #3: Center Performance

Comparative evaluation of center performance by an external audit in the
area of patient care would require on a mandatory basis that all centers agree to
participate in a uniform evaluation of patient disability upon entrance and re-
evaluation at various stages in subsequent years. Specific measurement techniques
should be uniformly applied so that objective data could be obtained and made available
for computer processing and subsequent retrieval. The data would relate to the effect
of center care on disease activity, functional capacity of the patient, job stability,
and economic implications. Without a uniform reporting system suitable for computer
analysis and retrieval, it would be impossible. to achieve a comparable evaluation of
performance between centers.

With respect to center performance in the area of education, this would

include definition of the number of individuals trained in medical, surgical and
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allied skills and their current roles. It would also include the performance of

house offices on in-service training evaluations or board performance and for any of
the groups in self-assessment examinations. Research should be evaluated not only
in terms of quality, but with regard to its relevance for the intent of the center
program, which is directed to more effective prevention and treatment of the rheumatic

diseases.

Item #4: Impact of the Grant_on the Center

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

investigative programs.

Item #5: Record keeping, Item #6: Disability Evaluation, and Item #7: Economic Benefits
canhot be determined in a meaningful fashion unless there is full commitment to
Item #3, namely, a uniform data base lending itself to a central computer measurement.
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{ndeed ,“ would be required that all centers participate in~setting—up uniform standards
and a data base suitable for recording by a central computer. The computer data
should be suitable for retrieval and evaluation by all concerned. To establish this

uniform data base and computer recording, it is the unanimous recommendation of

discussion group 10 that a joint conference committee be established at the earliest
re ~4-

‘possible opportunity. Indeed, this must reach the stage of implementation prior to
the initiation of the centers, if we are to objectively document the results of
current treatment modalities and to evaluate the effect of introducing a Center
program. Such a data base and recording system would permit a more accurate assess-
ment of the clinical gains and economic benefits of the Center program. Evidence

of clinical gains would be an important data base along with education and research
accomplishments in the renewal evaluation. Perhaps more important, such data would

constitute a strong arguement for gaining additional support for center programs

in order to achieve a wider distribution and availability.