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D TRULY YY DMRATAMAT MONTCAT a
REPORT OF SURVEY OF REGIONAL MEDICAL PROGRAMS

REGISTRY PROGRAMS AND TRAINING neEbs*

The survey reported here was undertaken to meet two objectives. The
‘first was to identify tumor registry programs being carried out under
the auspices of Regional Medical Programs as well as their purposes
and characteristics. The second objective was to assess the need for
training by RMP registries, including such aspects as content, mode,
duration, and location of training.

Methods

A questionnaire (see Appendix A) was developed and mailed to the 71
regional and area coordinators of Regional Medical Programs identified
in the Regional Medical Programs Service Communication issue of June ll,
- 1970 (Volume 4, No. 28 S). A second mailing of the questionnaire was
sent to those not responding uathea two months to the first mailing.

Responses were received from 65 (91.5%) of the 71 regions or areas.
Four area coordinators responding indicated that their registry activi-
ties were carried out within the framework of a Regional Program and
-that the response from the regional coordinator would provide the
required information. Thus the following findings and discussion
relate to the 61 remaining questionnaires returned to us.

Findings

Number of RMP Supported Registries

 

Twenty-seven regions or areas (Table 1) indicated that they sup-
port tumor registry programs. Of these, 24 are currently funded
and data is currently being entered into 23 of these systems.

Types of Registries

Twenty-three of the 27 registries within RMP programs are central

‘ registries, while 1 is a single hospital registry program. Three

_ of the 27 programs regard themselves as specialized in function.
Of the latter, one (New Jersey) assists primarily in the organiza-
tion and maintenance of individual hospital registries, a second
(Missouri) will include only breast and colon cancer cases, the
third (California-Area I) will include only cases seen by radia-
tion therapy departments.

‘

Isurvey carried: out by General Tumor Registry, Cancer Research
Institute, University of California, San Francisco, under
Contract No. HSM 110-70-350

.

“Ee
Except for basal and/or squamous cell cancer of the skin, all but
two of the registries (one which did not answef the question and
the Missouri registry referred to above as including only breast
and colon cancer) include all sites of cancer,in the tumor registry
system. Of 26 registries responding, half (13) indicated that they
register some benign tumors. Twenty-six (96%) of the registry sys-
tems (all except New Jersey) include regular follow-up of all cases
in the registry.

Of the 27 registries reporting, 11 (Table 2) identified themselves
as population based. In this list there is some overlap in that
the Intermountain Registry includes several of the other registries
identified, i.e. Idaho, Nevada, Wyoming. However the Intermountain
Registry also includes Utah which is not listed elsewhere. These
-overlapping programs are treated independently within this report.
since it is not unusual for active smaller programs to be components
of larger programs. An excellent example of this would be the End
Results Program of the National Cancer Institute which brings together .
data provided by active registry programs including the Connecticut
Tumor Registry, the California Tumor Registry, as well as a number of
individual hospital registries. oe

Registry Size

_ Table 3 gives the frequency distribution of the approximate number
of new cases entered into each registry each year for the 22 regis-
tries which provided this information. Lo

i

“ke

Only 2 registries add less than 1,000 cases per year while 10 regis-
tries accession more than 3,000 cases. The 3 largest systems each
enter between 9,000 and-10,000 cases per year. ws

Purposes of Registry Programs

A check list of 6 purposes of registries was included on the questionnaire.
Responses to the questionnaire indicated that all registry programs were _
established to serve at least 3 of the purposes included on the list. All
27 of the RMP supported registries are for the purpose of helping to assure
continued medical supervision of the cancer patient through follow-up and.
also to assist in the continued cancer education of the medical community.
Twenty-five (93%) of the registry systems are to assist in planning activi-
ties, i.e. to assess the magnitude of the cancer problem in the hospitals
and/or community represented by the registry. Twenty (74%) plan to con-
tribute to the evaluation of increased frequency of early diagnosis and ©
improved cancer management following the advent of RMP. Research on the
natural history of cancer as well as on the epidemiology of cancer is to
be carried out by 17 (63%) of the registry programs. Four registries
identified goals other than those described above. Three of these are

in the area of therapy evaluation and the other directs attention to
studying the relationship between environment and ancer.

i

~ ome
“Training Needs

Of the 25 registries responding to this section orf training needs,
-18 (72%) stated that they would be interested in sending registry .
personnel to San Francisco for training in our Tumor Registry
Training Program. Sixteen registries (67%) out of 24 responding
indicated that they would be interested in sponsoring a 3-5 day
workshop in their own region. oo -

Training Content

For the registries interested in training for their personnel, we
requested information on desired training content by job category

of persons to be trained. We defined the following job classifica-

, tions: central registry supervisor, data collectors, data analyzers,

, and individual hospital registry secretaries. Data collectors are
persons such as abstractors and coders. Data analyzers are registry
personnel who function as statisticians or computer programmers.

raining content was divided into two major areas. The first relates
to registry operations and the second deals with knowledge of the
medical aspects of cancer. The training areas related to registry
operations are: central registry management, single hospital regis-
try management, abstracting and staging, follow-up, data coding and
processing, survival analysis, and preparation of reports. Training.
areason the medical aspects of cancer include: human anatomy, path-
ology, epidemiology, methods of diagnosis, treatment rationale > and
cancer of specific sites and systems.

Table 4 gives the number of registries interested in sending personnel
within a given job classification to San Francisco for training. Thus
17 of the 20 registries desiring training require this training for
central registry supervisors. Fifteen desire training for data col-

' -lectors, 12 for data analyzers and 13 for individual hospital secre-
taries. It should be emphasized that these figures represent numbers
of registries rather than individual trainees. “ :

The desired training content : by personnel category - is given in Table 5
and is summarized below:

Central Registry Supervisors

a) Registry Operations

Seventeen regions with central registries indicated a need
for training for their supervisors. The 2 most frequently
requested training areas were central registry management

and preparation of reports. Such training was desired by

15 regions. Twelve regions desired training in follow-up

techniques and survival analysis. Next most frequently
requested was training in abstracting and staging and singie
hospital registry management. e

b) Medical Aspects of Cancer

There was considerable uniformity in the response to each of
the training areas listed. Between 8 and 12 registries desired
training in each of the subjects listed.

Data Collectors
a) Registry Operations |

Of 15 registries expressing a need for training of data col-

. _. leetors (coders or abstractors), 14 desired instruction in
abstracting and staging. In order of decreasing frequency
the other training content requested were follow-up, _prepara-
tion of reports, data coding and processing, central registry
management, single registry management, and survival analysis.

b) Medical Aspects of Cancer

Other than epidemiology which was requested by only 1 registry,
* all of the other topics were almost uniformly in demand in that
from 9 to 12 regions indicated a need for their inclusion.

Data Analyzers
a) Registry Operations

Twelve registries indicated the need for training of data
analyzers (programmers or statisticians). Eight of these
desired training in data coding and processing followed, in
declining frequency, by preparation of reports and survival
analysis, follow-up, central registry management, and abstract~
ing and coding.

b) Medical Aspects of Cancer

Five of the 12 registries responding desired inclusion of |
epidemiology in the training of their data analyzers. Next
most in demand were lectures on pathology and treatment rationale
followed by human anatomy, cancer of specific sites and systems,
and methods of diagnosis.

Individual Hospital Registry “Secretary
a) Registry Operations

' Thirteen registries indicated the need for the training of

- a“
‘indiyidual hospital registry secretaries., Ten of these 13
desired training in each of the areas of single hospital
registry management, abstracting and staging, and follow-
up. Seven requested training in preparation of reports,

5 in survival analysis, 2 in data coding and processing
and 1 in central registry management. .

b) Medical Aspects of Cancer

Other than epidemiology for which there were no requests,
each of the other medical topics were in uniform demand
with either 8 or 9 registries desiring training in these
areas,

, e

Length of Training

The questionnaire included a section for Regions to check the period

for which their personnel would be available for training in San Francisco.
Two-weeks of training was the most frequently checked period for each of
the 4 personnel categories. Overall this was followed in turn by one-
month, one-week, and two-months of training, respectively.

Mode of Training

In developing self-instructional programs in registry methodology the

respondents indicated a clear preference for a programmed instruction

text, followed, in turn, by a packaged video-tape and film strip pro-
. gram, and finally by a correspondence course.

Discussion

The present survey shows that there are 26 central registry programs
and 1 single hospital registry program supported by Regional Medical
Programs indicating the considerable extent to which RMP is involved
in the cancer registry field. Of the activities referred to, 23 of
the systems are actually operational at the present time in the sense
that data are entering into these programs. The size of the registry
systems is also quite impressive in that all but 2 of the reported
systems enter at least 1,000 cases per year and the 3 largest systems
enter between 9,000 and 10,000 cases per year.

All of the reported registry systems are intended to serve a variety
of purposes. The most common-purposes to be served are the assurance —
of continued medical supervision through follow-up and assistance in
the continued cancer education of the medical community. © Large pro-
portions are also intended to help in planning and for evaluation of
early diagnosis and improved cancer management. More than 60% of
the registry programs are intended to be active in research on the
natural history of cancer and on the epidemiology of cancer. The
magnitude of the registry activities supported by RMP as well as
.the important purposes to be served by these registries indicate

a need for facilities for training of registry personnel. This is
recognized by the RMP areas themselves in that 72% of the programs
with registries were interested in sending personnel to San Francisco
for training within our program. Sixty-seven percent of the regis-
_tries responding expressed an interest in sponsoring training work-
shops to be conducted by our staff within their own RMP areas.

_In response to questions concerning desired content of training for
their personnel, it was demonstrated that the needs vary considerably
according to the role to be carried out within a registry program.
Those in a supervisory position place more emphasis on training in
management procedures than those performing jobs as data collectors,
analyzers or individual hospital registry secretaries. Even with
different areas of emphasis by job category, there was nevertheless
within each job classification considerable demani for a broad spec-
trum of training content. Thus it was well recognized that in addi-
tion to a knowledge of basic registry operations, there is an impor-
tant need for the personnel of a tumor registry program to have a
strong understanding of the subject matter of cancer including topics |
such as anatomy, pathology, epidemiology, methods of diagnosis, and
treatment rationale in addition to knowledge of cancer of individual
sites and systems.

It has been the philosophy of the training program at San Francisco
that the quality of the data recorded within a registry system prim-
arily reflects the competence of the personnel and their understanding
of cancer. In a field such as cancer in which definitions and classi-
fication systems are not yet standarized, the demands on registry
personnel in terms of an understanding of the subject of cancer are
particularly heavy. The registry system itself may become the key

to making progress in the required standardization of terms. For
example there is much emphasis currently on standardizing rules for
staging of cancer. If a particular stage category is to include those
patients with a similar prognosis, knowledge of the required grouping
of cases can emerge only through registry systems set up to study pro-
blems of this kind. A further corollary of this is that in order to -
do such a study, it is necessary to assure that the registry is geared
to the recording of the necessary information and that the quality of:
the information recorded is high.

Of equal importance with the -need to know the technical operational
aspects of a registry program, it is extremely important that registry
personnel be aware of functions that a registry program can serve as
well as those uses for which a registry program may be inappropriate.
_ For example, most registry programs would be on extremely tenuous
grounds if they felt that through their activitieé they could pro-
vide definitive information regarding therapy evaluation. Without
controlled clinical trials this is not possible.

On the other hand there are important contributions of registry pro-
grams which are sometimes not apparent. For example as a result of
research activities on the natural history of various forms of cancer
carried out by tumor registries, it has been noted that there has been
an improvement in the quality of medical record keeping in hospitals
participating in such studies.

It is also of importance that registry personnel and those guiding
‘registry policy, should recognize that with the changing concepts

in, the field of cancer, procedures within registry programs must be
adaptable to changes reflecting our improved understanding of these
. diseases as well as improved technology in data storage and retrieval
methods.

Tumor registries have in the past been criticized as not being of ©
adequate service to the individual physician. How best to serve the
physician and to encourage his interest and participation in registry
work is an area yet to be pursued more actively. Perhaps through
regular reports presented in an interesting and brief form there may
be some additional impact. Perhaps through presenting the physician
with a list of each of his cancer patients with their latest follow-

up status, there might be some improvement in the relationship between
the registry and the physician. This issue is of extreme importance
since each of the registry programs identified in the present survey
have indicated their hope that the registry would contribute to the
continued cancer education of the medical community. What must be
recognized, however, is that a cancer registry activity must not be
confused with the cancer program. The cancer registry activity is

only part of a cancer program and its activities should be quided by
the purposes of that entire program. Therefore the burden of defining
the registry program falls primarily on those defining the cancer pro-
gram itself. Hopefully this guidance to the registry will also include
indications of ways in which it may be most useful in serving the medi-
cal community.

Since all of the registry programs surveyed plan to assure continued
medical supervision of the cancer patient through follow-up, it is
important that attention be paid to various approaches to follow-up

as well as possibilites in varying follow-up schedule, perhaps accor—
ding to type of cancer involved. With the progress that is occurring
in the medical management of cancer patients, it is furthermore impor-
tant that the concept of follow-up of cancer patients should provide
for assessment of the patient's status in order to gain some insight ©
into the quality as well as quantity of survival.
More than 60% of the registries indicated their intention to carry
- out research on the natural history of cancer and ‘also on the epi-
demiology of cancer. In view of the fact that approximately 402
of the registries reporting indicated that they are population
based, the potential for epidemiologic studies for these registries
may be quite good. However it is of importance to recognize that |
research of this nature requires personnel with training and exper-
tise both in the subject matter of cancer and in the statistical
and epidemiologic methodology to be employed.

Implications For Tumor Registry Training Program ©

‘The extent of development of tumor registry programs under sponsor-

| ship of Regional Medical Programs suggests a need for a continuing

- and developing program that will help meet the need for training
resulting from these activities. The nature of the training program
must be responsive to the purposes to be served by the various registry
programs. Thus it would appear that since the preponderance of the
RMP supported registries are centralized systems that further develop-
ment of the training program to meet the needs of central registry per-
sonnel should be given due consideration. —

On the other hand training needs of personnel of individual hospitals
must also be met since the backbone of any central registry program is
the quality of the source material from the individual participating
institutions.

There was recognition by the regions surveyed of the need for training.
Considerable interest was expressed by RMP supported registry programs
in sending registry personnel to San Francisco for a period of intensive
training. Increased emphasis on two-week programs of training appears
indicated from the responses to desired duration of training in

San Francisco. From the responses to the question dealing with training
content, it is now possible to better plan for the category of trainees
who will come to San Francisco as well as the desired training content.

In addition to training in San Francisco, approximately two-thirds of
the regions responding indicated their interest in sponsoring a 3 to 5
day workshop in the local area. Such workshops offer a mechanism for
providing limited training to large numbers of registry personnel. The
favorable response to such workshops suggests the value of continued
development of training material and teaching techniques to optimize
the benefit to participants in such workshops. Additional emphasis on
developing workshops that will be profitable to both inexperienced and
experienced registry personnel may be indicated. Training at two levels
was offered at the workshop held at the University of California in |
Los Angeles in January of 1971. Pursuing this a step further, it may
also be useful to plan for training of administrators and physicians in
a workshop of one or two days to provide for them an overview of the
-registry field, its problems, and potential.

“The response to the question on self-instructional material, points
sap the desirability of further work to be carried out in the prep-
:aration of a programmed instruction text as well as the material ©

----fer a packaged video-tape and film strip program.
Table 1.
RMP-Supportéed Registries

California-Area I

' Colorado-Wyoming

Georgia

Greater Delaware Valley

| . Tllinois

Intermountain

Towa

Kansas

Metropolitan Washington D.C.
Missouri

Mt. States-Idaho

Mt. States-Montana

Mt. States-Nevada

Mt. States-Wyoming

New Jersey
' New Mexico

North’ Carolina

North Dakota

Oklahoma

Puerto Rico

South Carolina

Susquehanna Valley
Tennessee Mid-South and Memphis
Texas . ,
Virginia
Washington/Alaska-Seattle

Western New York
Table 2.

Population-Based Registries

10.

1i.

Intermountain

Iowa

Kansas.

Metropolitan Washington, D.C.
Mt. States-Idaho .

Mt. States-Nevada

Mt. States-Wyoming

Puerto Rico

Susquehanna Valley
Tennessee Mid-South and Memphis

Western New York

ll
Table 3.

Registry Size
No. of New Cases Per Year
(1000's)
. LZ L
ee
2-3
3-4
4-5
er,
Total

an

_ Number of Registries

22
Table 4.

Registries Requesting Training by Personnel Category

Personnel Category No. of Registries

Central Registry

Supervisors 17
Data Collectors | 15
Data Analyzers . . 12

Individual Hospital
Registry Secretaries - 13

Total Number of Registries
Requesting Training 20
Table 5. Number of Registries Requesting Snecitfic Training Content by

 

 

Personnel Category a
Central Data Collector Data Analyzer Individual
- Personnel Registry (Coder, (Programmer, Hospital Registry
Category Supervisor Abstractor) Statistician) Secretary _
Training Content Number of Registries

Registry Operations
‘1. Central Registry

‘Management _ 15 5 . 4 . 1
2. Single Hospital
Registry ;
Management 8 2 3 - 10
3. Abstracting and . |
Staging . 10 14 1 ; 10
4, Follow-up 12 . 7 in 10
5. Data Coding and ae oo 4
Processing 10 . 6 8 2
6. Survival Analysis 12 1 . . 6 ,
7. Preparation of me 5
Reports 15 7 6 7
- Medical Aspects of
. Cancer
1. Human Anatomy 10 : 12 3 9 _
2. Pathology 11 12 4 oo
3. Epidemiology 8 1 oo 5 ~
4. Methods of os ;
Diagnosis 11 il 2 ; 9
5. Treatment . :
Rationale 12 12 , 4 8

6. Cancer of
Specific Sites
’ and Systems 10 me) . 3 8

- Total Number of :
Requesting Registries 17 15 12 13

VA
PLEASE TYPE OR PRINT

RMP Region:

OMB 68-S-70066
CANCER RESEARCH INSTITUTE (Approval Expires 1-31-71)
UNIVERSITY OF CALIFORNIA SAN FRANCISCO
SURVEY OF REGIONAL MEDICAL PROGRAM
TUMOR REGISTRY ACTIVITIES

AND TRAINING NEEDS

RMP Coordinator:

 

 

Does your Region support a Tumor Registry Program?

Yes No

T£ NO, PLEASE DISREGARD remaining questions and return questionnaire to us promptly.

IF A TUMOR REGISTRY PROGRAM IS SUPPORTED BY YOUR REGION, PLEASE COMPLETE THE REMAINDER

OF THE QUESTIONNAIRE.

Name of Registry Program:

Director:

 

 

Address:

 

CHARACTERISTICS OF REGISTRY PROGRAM

Please fill in the blanks provided for all succeeding questions.

I. Status of Registry
a.

yes no
b.

yes no

II. Type of Registry

a.
yes no

b.
yes no

Cc.
yes no

Program

Is your registry program currently funded by RMP?

Is data currently entering the registry system? If yes,

when did data collection begin? (mo. yr.)

Single hospital registry program (registry consists of
data from only one institution)

Central registry program (registry consists of data from
more than one hospital)

Other type of registry program, e.g. special purpose regis-
try. Describe: (if more space is needed, use reverse side)

III. Size and Scope of Registry

 

a.

b.
yes no

Cc.
ves no

Approximate number of new cases entered into your registry
each year

Are cancers of all sites included in your registry? If no,
indicate which cancers are excluded:

Are you including selected benign tumors in your registry?
RMP Survey page 2

d. Is your registry population-based, i.e. do you record all
yes no cancers diagnosed in a geographically defined population
group? (For example, the Connecticut Tumor Registry re-

cords all diagnoses of cancer occurring among the entire
population of the state of Connecticut.)

e. Does your system include regular follow-up of all cases
yes no in your registry?

IV. Purposes of Registry (Check all that apply)

I.

II.

Tit.

a. To assure continued medical supervision of the cancer patient
through follow-up

b. To assist the continued cancer education of your medical community

c. Planning (to assess magnitude of the cancer problem in hospitals
and/or community)

d. Evaluation of increased frequency of early diagnosis and improved
cancer management following the advent of RMP

e. Research on the natural history of cancer

£. Research on epidemiology of cancer

g. Other, (specify)

TRAINING NEEDS

Tumor Registry training programs of various duration are held in San Francisco.
Would you be interested in sending any of your registry personnel to San Fran-
cisco for participation in a training program? (Question IV provides a check-
list of training content for various categories of registry personnel)

Yes No

In addition, a limited number of three to five day workshops may be offered out-
side of San Francisco. Would you be interested in sponsoring such a workshop
in your area?

Yes No

 

Consideration is being given to the development of the following self-instruc~
tional programs in registry methodology. Which do you feel might be most use~
ful in meeting your training needs. Please rank in order of preference (1st,
2nd, 3rd)

a) Packaged video-tape and film strip program

b) Programmed instruction text

c) Correspondence course
RMP Survey page 3
IV. I£ you would be interested in training for your registry personnel, please
check the desired training content and time available for training for each
personnel category to receive training. For your convenience, blanks are
provided for further suggestions regarding training content in section on
"Other Specific Topics".

REGISTRY PERSONNEL CATEGORY

oo
n
he rd
° SB PS
ra) hy
Yo o~ a3
wn nm n on
Me woh n nm @ a
TRAINING CONTENT 5 B85 2 48 oH a
a wy V0 ne —& UO ert
ed fe eed oO a N&O wo oO
ow > yo w wA.0 oer rel vy
MW Mt ce ec 4J ow a
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oo s oO tH ou cA
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39 3° 2° 3
Oo
REGISTRY OPERATIONS M.D. non-M.D. | AWS av Soe 5

 

1, Central registry
management

 

2. Single hospital regis-
try management

 

3. Abstracting and staging

 

4. Follow-up

 

5. Preparation of reports

 

6. Data coding and
processing

 

 

 

 

 

eee eee ee eth

 

MEDICAL LECTURES

 

1, Human anatomy

 

2. Pathology

 

3. Methods of diagnosis

 

4, Treatment rationale

 

5. Cancer of specific
sites and systems

 

 

 

 

 

 
«
“

RM® Survey page 4
. ¢

ol

.

OTHER SPECIFIC TOPICS

M.D.

non-M.D.

Data collectors

Data analyzers

Hospital registry

secretary

Other

 

1. Epidemiology

 

2. Survival analysis

 

3,

 

4.

 

 

 

 

 

 

PERIOD AVAILABLE
FOR. TRAINING

 

1. Two weeks

 

2. One month

 

3. Two months

 

 

 

 

 

 

V. Remarks

 

Date

 

Signature