Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations

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Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations

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Title: Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations

1
Assessing Cancer Registry Systems
Challenges and Opportunities for Improving
Outreach in Rhode Island Minority Populations

The Rhode Island Latino Cancer
Control Task Force (LCCTF)
Bridging the Health Care Divide Research
and Programs to Eliminate Cancer Disparities

American Cancer Society Conference New Orleans,
Louisiana April 18-20, 2007
2
Building a Coalition

2000 General Assembly urges Rhode Island cities
and towns to create municipal Cancer Control Task
Forces.
Established partnership among American Cancer
Society, RIDOH, RICAN
13 coalitions were formed.

3
Building a Coalition

Neither one focused on dispair populations.
Hispanic/Latinos are the majority of the minority
groups in RI, representing almost 12 of the
overall population.
Among the Hispanic/Latino population, Cancer was
the leading cost of death during the period of
1999-2004 in the State of Rhode Island.

4
Building a Coalition

The Formation of the Latino Cancer Control
Task Force will help
to determine the nature of cancer challenge in
our community,
to examine its causes, and
to identify resources, gaps and opportunities, in
order to develop prioritized strategies that will
diminish the cancer deaths among the Latino
community in our state.

5
Building a Coalition

October 20, 2005,
The Latino Cancer Control Task Force (LCCTF) was
created as a
volunteer-based Community group formed in
response to the need to reduce the leading causes
of cancer morbidity and mortality among
Hispanic/Latinos in Rhode Island.

6
The Latino Cancer Control Task Force Mission
Statement

The Latino Cancer Control Task Force aims to
reduce the impact of cancer in the Latino
community in Rhode Island
by facilitating cancer prevention through
outreach, public education, awareness, early
detection, access to care and advocacy,
and improving care and quality of life for cancer
patients, their families, and caregivers.

7
The Latino Cancer Control Task ForceGoals and
Objectives

Advocacy. Being vigorous advocates for cancer
control, supporting public policy initiatives and
research, and developing strategic alliances with
governmental agencies, hospitals, nongovernmental
health promotion organizations, health
professionals, the community, and the media.
Outreach. Providing outreach targeting the
different populations, institutions, providers,
policy makers, advocates, community leaders and
organizations to increase knowledge and awareness
of cancer issues affecting Latinos.

8
The Latino Cancer Control Task Force Goals and
Objectives

Education. Preventing cancer by increasing
knowledge and awareness of cancer and by
encouraging healthier behaviors.
Services. Promoting the early detection of
cancer through public education and access to
screenings and treatment.
Quality of life. Improving patients' quality of
life and minimizing their suffering through
education, support, and palliative care.

9
The Latino Cancer Control Structure
10
LCCTF Projects

Conduct an assessment on what resources are
available to the Hispanic/Latino population.
Assess how data is collected and interpreted by
regulatory offices.
Bring together Latino health professionals to
educate and create community awareness on the
issues of cancer prevention and early detection.
Trough our Advocacy workgroup support American
Cancer Society Legislative Policy Priorities.
Ensure fair access to screenings and treatment.

11
LCCTF Accomplishments

Membership LCCTF membership represents the vast
diversity of Latinos in RI.
Data Analysis Data Analysis workgroup conducted
a survey to all RI Hospitals.
1st. Annual Conference Mujeres Hablemos Claro!
La Salud del Seno 183 registered, 126 attended,
60 new volunteers, 13 De Amiga a Amiga
volunteers trained.
Legislation Introduced by one of LCCTF members
Senator Juan Pichardo, asking to increase the
funds for the WCSP.

12
LCCTF Data Systems Project

Assess how data is collected and
interpreted by regulatory offices
The Rhode Island Cancer Registry
System Study

13
The RICR System Study -Objectives

Conduct an assessment of the Rhode Island Cancer
Registry (RICR) System
Determine how race and ethnicity information of
cancer patients is collected and reported
Identify strengths, limitations and opportunities
for improving CR information quality and data
utilization for population targeting and outreach

14
Main Questions

What are the start and end-points of the
RI CR?
What is the guideline?
Is there compliance with OMB 15?
What are the implications of non-uniform
reporting?
Other study findings
Can under-reporting be corrected?

15
Start and End-Points - RICR
COLLECTION
AGGREGATION
LOCAL, REGIONAL AND NATIONAL REPORTING
DATA SYSTEM
Cancer Patients
Cancer Patients/Cancer Families
16
What is the Guideline?

The Rhode Island Department of Health requires
health
providers to collect the following demographic
information about their patients
What is your ethnic background?
Hispanic/Latino
Not Hispanic/Latino
What is your race? (please indicate all
races that apply)
American Indian or Alaskan Native
Asian
Black or African American
Native Hawaiian or other Pacific
Islander
White

17
OMB 15
Is there compliance in the collection and
reporting of race and ethnicity?
18
RICRS Assessment - Methods

Hospital Survey
14 acute care hospitals
13 cancer registries
hospital cancer registry data not a start or
end-point
Key Informant Interviews
3 key informants
public health, health care industry and
national voluntary health organization

19
Hospital Cancer Registry Survey

Unit of Analysis hospitals (information
collected via questionnaire)
Population of Interest Rhode Islanders with
a diagnosis of primary cancer
Main Topics forms used for cancer patient
intake, collection of cancer risk factors and
race/ethnicity information, content of
database
and access to cancer registry data,
feasibility of
CR and MR linkage, frequency of reports and
organizations receiving reports (22 questions)

20
Participating Hospitals (N14)

Kent Hospital
Landmark Medical Center
Memorial Hospital of Rhode Island
Miriam Hospital
Naval Health Care New England
Newport Hospital
Rhode Island Hospital
Roger Williams Medical Center
South County Hospital
St. Joseph Hospital
Our Lady of Fatima Hospital
VA Medical Center
Westerly Hospital
Women Infants Hospital

21
Key Informant Interviews

Unit of Analysis individual expertise in cancer
data systems (information collected via
questionnaire)
Population of Interest US population with a
diagnosis of primary cancer
Main Topics reporting organizations, types/
format of information reported, risk factor and
race/ethnicity information quality, methods for
adjusting under-reporting, OMB compliance,
database content and access to cancer registry
data, feasibility of CR and MR linkage, frequency
of reports and agencies targeted (26 questions)

22
Key Informants (N3)

John Fulton, PhD
Director, Rhode Island Cancer Registry
Associate Director of Health
Rhode Island Department of Health
David Rousseau, PhD
Director, Cancer Information Systems
Hospital Association of Rhode Island
Jimmy Parson, PhD
Research and Analysis Manager
American Cancer Society, NHO

23
Analysis

Hospital Survey
Since sample size was small, results are
presented as frequencies and percents
Because some questions asked for more than 1
response, some figures exceed the total number of
expected responses
Responses were converted into ordinal scales
(i.e. all100 most70-99 some40-69
a few1-39 none0)
Ordinal scales were grouped by topic in order to
summarize findings

24
Analysis

Key Informant Interviews
Emphasis set on the qualitative aspects of
information
Results not presented in frequencies or
percents
Information used to gain a better insight into
hospital survey results and inform discussion of
findings and recommendations to 1) help improve
the quality of cancer registries and 2) translate
findings into improved outreach
practices

25
Results Hospital Survey

Summary
14 Rhode Island hospitals have cancer registries
Requested participation of hospital cancer
registrars
Respondents signed consent form
1 initial mailing and two respondent follow-ups
11 hospital cancer registries responded (79
response rate)
Findings presented here exclude non-respondents
Respondent follow-up ended 04-16-07
2 hospitals share the same reporting system

26
Results Hospital Survey

Forms
Do hospitals with CRs have intake forms (IF)
specific for cancer?
5 hospitals (45) have an IF for cancer 5
hospitals (45) use a general IF
Is information on cancer risk factors obtained
via cancer IF?
3 hospitals (30) collect cancer risk factor
information on these forms
Is other form used to obtain cancer risk factor
information?
6 hospitals (56) use other sources

27
Results Hospital Survey (cont.)

Forms
What form is used to determine the race of cancer
patients?
10 (1 out of 4 with cancer intake forms) ask for
race
5 hospitals (50) ask for race thru general
intake
forms
4 hospitals (40) use other forms (medical
records,
physical exam, medical history)

28
Results Hospital Survey (cont.)

Forms
What form is used to determine the ethnicity of
cancer patients?
11 (1 out of 4 with cancer intake forms)
4 hospitals (44) use general intake forms
4 hospitals (44) use other forms
2 hospitals did not respond to this question

29
Results Hospital Survey (cont.)

Forms
From findings presented so far race (50) and
ethnicity (56) are obtained via intake forms by
40 of hospitals with cancer registries
How many races can be checked in the intake form?
1 race 1 hospital (9)
2 races 2 hospitals (18)
2 or more races 4 hospitals (36)
4 hospitals (36) do not collect this information
in the
intake form

30
Results Hospital Survey (cont.)

Forms
What form is used to determine the country of
origin of cancer patients?
1 hospital (11) uses the cancer intake form to
obtain information on country of origin
8 hospitals (88) reported not collecting
information
on country of origin

31
Results Hospital Survey (cont.)

Race/Ethnicity/Country of Origin
How is the race of a cancer patient determined?
(multiple response question)
In 4 hospitals (36) patient self-reports race
In 5 hospitals (45) person filling form asks
patient
In 1 hospital (9) person filling form makes a
guess
In 4 hospitals (36) information obtained from MR
1 hospital (9) uses medical history/physical
exam
2 hospitals use a combination of methods b and d
1 hospital use a combination of methods b and c

32
Results Hospital Survey (cont.)

Race/Ethnicity/Country of Origin
How is the ethnicity of a cancer patient
determined? (multiple response question)
3 hospitals (27) present the patient with a
standard form and the question Are you
from
Hispanic or Latino origin
6 hospitals (56) ask patients about their
ethnicity in a non-standard way
2 hospitals (18) reported unknown

33
Results Hospital Survey (cont.)

Access to Cancer Data
Does the intake form have a number that
can be used to link with the patient medical
record?
All (7 out of 7 hospitals with intake forms) can
link
to MRs
Do hospitals aggregate information of cancer
cases (from intake and other forms) into a
database?
All (11 out of 11 hospitals)

34
Results Hospital Survey (cont.)

Access to Cancer Data
Is cancer data available to researchers from
academic institutions?
10 hospitals (91) provide access to cancer data
Is there an internal procedure to obtain access?
10 hospitals (91) have an IRB process in place

35
Results Hospital Survey (cont.)

Reporting
To what organizations do you report cancer data?
5 hospitals (45) to NCBD (National CAHPS
Benchmarking Database) yearly
1 hospital (9) to CIRF (Cancer Information
Reference File) yearly
4 hospitals (36) to the National Cancer Database
of the American College of Surgeons (ACS)
yearly
All to the Rhode Island Cancer Registry (RICR)
monthly
All to the Hospital Association of Rhode Island
(HARI) monthly

36
Results Hospital Survey (cont.)

Reporting
Is the data you report linked to medical
records?
4 hospitals (37) have MR linkage capacity

37
Key Informant Results

TOPIC HARI RI CR ACS
Who reports 13 hospital CR 21 Century 13
hospital CR 6 state CR Americans for
Non-Smokers
how often? Oncology Services (monthly) pathology
labs surgical Rights National Breast and
centers (monthly) Cervical Cancer Early
Detection Program Tobacco Free Kids
National Committee for Quality Assurance
(NCQA), Colorectal Screenings in
Health Plans UC Berkeley, Smoking
Cessation for Medicaid Smoke Free
Grade, American Lung
Association Cancer Incidence Rates,
National Program of Cancer Registries
Behavioral Risk Factor Surveillance
System (BRFSS) and Youth Risk Factor
Surveillance System (YRBFS) (all yearly)

38
Key Informant Results (cont.)

TOPIC HARI RI CR ACS
Data format single format North single format
(NAACCR) multiple formats (excel,
American Association word, pdf and text)
of Central Cancer
Registries (NAACCR)
Database www.naaccr.org www.naaccr.org
n/a
Specifications
Cancer risk smoking status and no cancer RF
data smoking Thompson Medstat
Factors (RF) occupation PULSE Survey
Screening no screening data no screening
data breast and colorectal screen.
Race/ethnicity yes yes yes
of races most report 1 race most report 1 race
(can most report 1 race
Reported report up to six)
Information on no some this is a
variable in no
how is race the NCAACCR data set, but
determined? HEALTH does not require it

39
Key Informant Results (cont.)

TOPIC HARI RI CR ACS
Information on no no a few
how ethnicity is
determined?
Do you provide Race and ethnicity treated When
directed by feds We only look at race/
guidance to like all other data items When
required by state ethnicity data for
comply with required by law When requested by
hospitals screening data and data
OMB 15? When required by RI HARI coming from
CDC
Target year for no Its being discussed
but no response
helping partners no date yet
achieve OMB 15
compliance?
Organizations -NAACCR -NAACCR -ACS Divisions
(monthly)
you report data -National Program of
-CDC -ACS Management (as
to? Cancer Registries (CDC) -International
Association needed)
-RI Department of Health of Cancer Registries
(IACR)
-Central Brain Tumor (yearly)

40
Key Informant Results (cont.)

TOPIC HARI RI CR ACS
Uses Spanish Uses NAACCR algorithm We can do
this, but as a We dont go into that level
surname method (last name place of birth)
separate variablewe of detail in our
reporting.
to adjust to determine Hispanic dont report
it to CDC, We rely on external
under-reporting? sources
How do you 1 race ethnicity (2nd Several
formats per 1 race ethnicity
report data on racial group almost never
request
race/ethnicity? recorded in medical
Do you keep yes yes Not to my
knowledge. We
identifiers to link have worked with ACoS
to
cancer registry determine underserved in
and MR data? hospitals but it is not
possible to link up
Is your data yes yes We dot provide
this data
available to IRB approval may be at this
time
researchers? necessary

41
Key Informant Results (cont.)
TOPIC HARI RI CR ACS How many data
blank 6 data inquiries 0 inquiries and
Note research proposals 0 research
are handled by the IRB proposals do
Committee receive per year? Is there an
IRB yes yes blank procedure?
What cancer Contact Dr. John
Fulton -Annual Report -Mission Scorecard
(yearly) reports does your -RI Cancer
Burden -Mission Dashboard (yearly) organization
(annual update) -Best Practices Reports
produce? -Special reports (ongoing)
(ongoing) Do you report yes yes yes
cancer data within your organization?
42
RI CR Assessment Start/End-Points
Hospitals
CRs
Kent H.
1
Colorectal Screenings in Health Plans
Landmark MC
2
NCQA
ALA
Memorial H RI
3
21st Century Oncology Services
Miriam H.
4
BRFSS YBRFS
CDC
Naval HC NE
5
NAACCR
NPCR
HARI
Newport H.
6
CBTRUS
ACS
Rhode Island H.
7
Cancer Patients
CDC
R. Williams MC
8
RI CR
NAACCR
South County H.
9
ACS Divisions
ACS Management
IACR
St .Joseph H.
6 states
10
Our Lady of Fatima
pathology labs, surgical centers
VA MC
11
Westerly H.
12
Cancer Patients/Cancer Families/Communities
Women Infants.
13
43
Compliance with OMB 15?

Findings from the hospital cancer registry survey
indicated lack of uniform collection of
information on race and ethnicity.
Only a few hospitals ask patients to self-report
their race (27) and ethnicity (27) according
to
the guideline
Only a few hospitals (36) collect information on
2
or more races
The Key Informant Interview revealed that most
cancer data sources only report 1 race
There is no target date yet in RI for achieving
OMB 15 compliance with cancer data reporting

44
Summary of Findings

1. Use of Intake Forms (IFs) specific to cancer
2. Use of IFs (cancer-specific and general)
3. Use of IFs to obtain cancer risk factor
(CRF) information
4. Use of other forms to obtain CRF information
5. Collection of CRF information from all
sources
6. Is reporting of CRF information a RI CR
requirement?
7. Race information obtained at point of entry
(POE)
8. Race information obtained from other sources
9. Ethnicity information obtained at POE
10. Ethnicity information obtained from other
sources
11. RI CR mechanism to monitor OMB 15 compliance?
12. Collection of information on country of
origin
13. IF/MR linkage
14. RI CR/MR linkage
15. Patient self-reporting of race and ethnicity
16. Collection of information of two or more
races
17. Reporting of two or more races
18. Target date for OMB 15 compliance?

45
Summary of Findings

1.
2.
3.
4.
5.
6. NO
7.
8.
9.
10.
11. NO
12.
13.
14.
15.
16.
17.
18. NO

45
91
30
60
90
60
40
56
44
12
100
??
37
27
36
9
91
0 10 20 30 40
50 60 70 80 90
100
Hospital Cancer Registry Survey Key Informant
Interview
46
Implications of Non-Compliance

Undercount of multi-racial ethnic groups
over count of non multi-racial ethnic groups
Underestimates in cancer prevalence,
incidence and mortality
Problem may not be limited to the RI CRS
other RI/national data sets may be affected
Difficult targeting and outreach of multi-
racial ethnic groups
Misdirecting resources for targeting/outreach
Potential for unsound public health practice

47
Other Study Conclusions

All 100 Most 70-99 Some 40-69 A few
1-39 None 0
The form closest to the information entry point
is
the IF
Most hospitals (91) reported use of IFs
A few hospitals (30) use IFs to collect
information on cancer risk factors (RFs)
Some hospitals (60) use other forms
While some cancer RF information is obtained at
the point of entry, the Key Informant Survey
revealed no reporting requirement

48
Other Study Conclusions (cont.)