Community Health Workers and Cancer Research: Experience, Knowledge,

OrientationRussell K. Schutt, Ph.D

Lidia Schapira, M.D.

JudyAnn Bigby, M.D.

Funded by the National Cancer Institute

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Research Assistants

• Jennifer Maniates

• Jessica Santiccioli

• Tahmina Mattubar

• Graduate Program in Applied Sociology

• Silas Wayne Brown Henlon

• Post-Baccalaureate Pre-Med Program

• James Chery

• Economics and Political Science

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Collaborators

• University of Massachusetts Boston

• Dana-Farber/Harvard Cancer Center• Dana Farber Cancer Institute

• Massachusetts General Hospital

• Beth Israel Deaconess Medical Center

• Brigham & Womens’ Hospital (Community Programs)

• Community Health Education Center, Boston Public Health Commission

• Community Health Worker consultants

• Advisory Board

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Study Goals

• Assess Needs• To describe community health workers’ knowledge about and

attitudes toward health care research and cancer clinical trials;

• To explore community experiences with health care research;

• To assess community health workers’ attitudes about educating communities about clinical trials.

• To identify sources of knowledge and attitudes.

• Design Curriculum• To develop a curriculum for training community health workers

about clinical trials.

• To implement the training program with diverse CHW groups.

• To evaluate the impact of the training program.

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Prior Research

• 88% clinic patients: should be asked to participate

• 33% would consider participating (UK & Sydney)

• <5% do participate in clinical trials (US & UK)

• Fear & distrust of health providers, research

• Lack of understanding of clinical trials

• African Americans lack trust, but see benefits

• Awareness of importance of medical research

• Cost, control, transportation, language, consent issues

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Study Methods• Focus Groups

• Two groups with 8-9 participants for 1.5 hours each

• Volunteers in response to ads at employers & emails to CHWs

• Analysis with NVivo

• Intensive Interviews • 11 for 1-2 hours each, experienced CHWs in diverse communities

• Purposive sample

• Analysis with NVivo, SPSS

• Structured Surveys• A 60 fixed-choice questions about attitudes, experiences, knowledge

• 51 respondents, 30 minutes self-administered

• CHEC workshop participants from diverse employers, communities

• Analysis with SPSS

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Research Design Strengths & Limitations

• Strengths• Focus on CHW’s

• Mixed methods

• Actual workshop participants

• Adaptation of prior instruments

• Grounded instrumentation

• Multiple measures

• Intensive analysis

• Limitations• Non-probability sampling

• Boston area only

• Cross-sectional design

• Attitudes, not behavior

• Self-reported opinions

• No patient data

• Limited explanatory measures

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Findings

• Quantitative Description

• Qualitative Elaboration

• Explanatory Analysis

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Familiarity with Clinical Trials

0

10

20

30

40

50

60

Level ofUnderstanding of

CCT

Comfort withdiscussing CCT

Awareness of H.C.Research

Access to CCT incommunity

Extreme

Very

Source: Surveys

%

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Comments about Familiarity

• For the most part I think I have a very positive opinion about healthcare research because I think that there’s plenty to learn and definitely we could eliminate most diseases that plague us. But on the other hand, I am very skeptical about how researches are being done. Like what are the intentions behind it, what are the motives behind it, who’s doing it, and for what reason.

• The sharing of resources is an issue when you’re looking at research. So I think, you know, with the African and African-American community, recognizing that there’s a bad history between the medical providers and the community and seeing how -- involving this community -- involving the community can sort of lessen that.

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Support for Health Care Research

0

20

40

60

80

100

120ExtremelyInterested/Very StrongBelief

Very Interested/ StrongBelief

Source: Surveys

%

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Comments about Support

• It's intended to … help the people so that they are able to get into clinical studies and we can find out what works and what doesn't work and then go forward from that.

• The needs within different communities are different. So what works for one may not be necessarily what works for the other, so you need to know what is it that this community needs.

• I wasn't very informed about research, so I would say that we should be more informed and probably have like little workshops in our area to learn more about it.

• I’m skeptical about the motives, but I think there’s much need for research, especially research that should involve minorities -- minority people or women in general because I don’t think that most clinical trials are very inclusive.

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Trust in Health Care Research

0

10

20

30

40

50

60

Doctors/H.C.Providers will not

expose you tounnecessary risks

Medical researcherswill not expose you to

unnecessary risks

Federal laws protectrights of individuals in

medical research

Almost all of the time

Most of the time

Source: Surveys

%

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Comments about Trust

• People always talk about the Tuskegee thing and maybe a couple of other things, and it is troubling, but it doesn't mean you can't make it better.

• I really believe that in research, a lot of thought is being given to the problem, to the planning and the implementation, like getting funds to do it. I think that they are very serious people, although they might be thinking about money, for example, pharmaceuticals, but I think that they want to help people. So the benefit is more for the community.

• Because before you get into research, they make sure you understand everything they're asking for. You know, they make you take your time to think about the studies, and that protects peoples rights.

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Perceived Barriers to CCT Participation

0102030405060708090

Source: Interviews

%

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Comments about Barriers• “I don't want to be a guinea pig.” That's what I hear most. “They don't know how it’s going to work, they're just going to give it to us.

• A lot of patients don't have any information at all, and there's not enough work in terms of providing that information for them. There's a lot of education that needs to be done in that area.

• I think it's because of the negative stuff that's out there, and people's preconceived notions about research or what are they going to do, and what kind of medicine am I going to be taking. Is it going to do me any good? I think the fear factor is a big part of it.

• There are just not enough people that look like us that are doing the work, and that's part of the trust factor. That's just human nature.

• It has to do with the mystification of research. … another world, not linked to regular healthcare. It's like oh, that's something on Mars, and we're here on Earth. So a connection is not established.

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Overall Quality of Health Care

0

10

20

30

40

50

60

70

80

White All Asian Latino Black

Excellent

Good

Source: Surveys

%

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Qualitative Summary

• Critical points• If no community benefit, they would

not advocate for it.• Some communities feel over-

studied.• Researchers need to ask CHWs

what they think their community needs.

• More efforts need to be made to bring benefits back to the community.

• Sometimes researchers will say one thing and then do another.

• Researchers do not connect to the communities they do research on.

• Concern about research’s ulterior motives.

• Positive points• Recognize the importance of

research.• Trials are valuable, but what if

someone doesn’t know about the treatment?

• Researchers need to arm CHWs properly with education .

• Researchers need training in cultural competence.

• CHWs need to be taught about clinical trials.

• Need to involve communities from beginning stages of research.

• Would feel comfortable as long as the research is honest/upfront.

• More specific information needed on the level of the participants

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Sources of health care research info • Major info sources

• Newspapers, magazines

• Internet

• Drug companies, health care orgs

• Discussion with professionals

• Minor info sources • Research participation

• Community members

• Family, friends

• School courses

Print media

Internet

Drug Cos

Hlth Profls

TV

SpclTraining

OtherCHWs

Source: Interviews

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CHW Knowledge about Clinical Trials

Source: Surveys

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Predictors of Clinical Trial Knowledge

• More skills training

• Work with English-speaking clients

• Longer seniority

• No correlation with age, formal education, race, sex, licensing, hours worked, job activities

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Consequences of Awareness, Knowledge

• More support for cancer research

• More trust in medical research

• Better perceived health care

• More perceived health care discrimination

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Conclusions

• CHWs recognize importance of medical research

• Many perceived barriers to CCT participation

• Variable levels of trust in medical research

• High levels of perceived discrimination in care

• Limited understanding of cancer clinical trials

• Interest in learning more about CCTs

• Media is key source of knowledge

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Implications

• CHWs are key for effecting change

• Variability in attitudes provides opportunity

• Training may improve knowledge

• Knowledge may increase CCT interest

• CHWs demand ethical standards

• CHWs eager for more knowledge

• CHWs seek to be treated as collaborators