Recruitment of Diverse Populations for Health Research

1
Recruitment of Diverse Populations for Health
Research

• Anna Nápoles-Springer, Ph.D.
• Eliseo J. Perez-Stable, M.D.

2
Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

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NIH Mandate to Recruit Minorities

• 1993 NIH Revitalization Act states that
  minorities must be included in clinical research
  supported by NIH
• For clinical trials, recruitment methods must
  yield numbers to allow valid evaluation of ethnic
  differences
• To provide scientific evidence to inform health
  policy or standard of care that is relevant for
  major ethnic groups

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Lack of Evidence on Recruitment

• Lack of systematic studies of recruitment
  effectiveness
• Data on effectiveness of recruitment and
  retention methods seldom published by ethnicity
• Review of recruitment studies (93-95) all
  articles with human subjects from NEJM and
  Circulation (95)
• ethnicity reported for lt 2 of potential
  participants 3 of eligible and lt2 of refusals
  
• ethnicity on 59 vs. age on 91 and gender on
  80 of enrolled subjects
• (Ness R. AEP, 77 472-8)

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Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

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The Resource Centers for Minority Aging Research
(RCMAR)

• Six Resource Centers for Minority Aging Research
  funded by NIA, NINR, and the Office of Research
  on Minority Health
• To decrease minority health differentials in
  older people

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What are the Community Liaison Coresof the
RCMARS?

• Create and maintain relationships with minority
  community members and CBO
• To facilitate interaction among community members
  and researchers planning studies on aging in
  communities of color
• To enhance recruitment and retention of
  ethnically diverse older participants
• Conduct research on the effectiveness of research
  methods in diverse groups

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Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

9
Research in Older African Americans and Latinos
Perspectives from the Community
A study by the CADC Community Liaison Core
Anna Nápoles-Springer
Mark Alexander Gina
Moreno-John Kevin Grumbach
Deirdra Forté
Martha Rangel-Lugo
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Objectives of CADC Study

• To identify social and health priorities of
  African American and Latino communities
• To describe attitudes of African American and
  Latino community about the participation of
  minorities in health research

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Identifying Community Priorities and Attitudes
about Research

• Mail survey of San Francisco and Oakland CBOs
  serving African Americans and Latinos identified
  through community resource listings and prior
  outreach efforts
• 4 Focus groups with community residents of Bay
  View Hunters Point, Western Addition and Mission
  District

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Demographic CharacteristicsCBO Survey
Participants

• 117 respondents (75 response rate)
• Average time with organization of 7 years
• 15 African American, 37 Latino,
• 39 non-Latino White
• Over half of the respondents ages 41 to 60 y
• 73 women
• Almost 90 of sample gt college graduate

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CBO SurveyUnmet Needs of Community Elders

• Percent Needing
• Lots/Huge
• Rank Unmet Need Amount of Help
• 1 Affordable housing 71
• 2 Enough money to meet needs 70
• 3 Transportation 60
• 4 Safer neighborhoods 60
• 5 Medical care 53
• 6 Help with household tasks 45
• 7 Care for depression or anxiety 45

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CBO SurveyAttitudes about Participation in
Research

• CBOs asked to indicate how much they
  agree/disagree on items about participation of AA
  L in research. Topics
• Trust in researchers
• Reasons for participating
• Reasons for not participating

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CBO SurveyTrust in Researchers

• Agree
  Neither Disagree
• L and AA do not take part due to distrust
  65 29 6
• L and AA afraid due to discrimination
  43 39 18
• Studies guard health of participants 41
  45 14
• Researchers protect rights of participants
  35 55 10
• Participants treated as guinea pigs 30
  46 24
• Good reason not to trust health researchers
  25 43 32
• Researchers are condescending to minorities 25
  62 13

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CBO Survey Benefits of Participation

• Agree Neither Disagree
• Learn more about own health problem 82
  15 3
• Find safe and effective treatments 82
  18 0
• Improves health of their communities 79
  15 6
• Contributes to science 77 21 2
• Increases access to medical advances 76
  16 8
• Place to go, someone to talk to 51
  37 12

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CBO Survey Reasons Do Not Participate

• Agree Neither
  Disagree
• Researchers not same culture or language
  73 21 6
• Too busy meeting basic needs
  49 31 20
• Too busy with caregiving 43 28 29
• Few real benefits to L AA 34 31 35
• Research not relevant to L AA concerns 24
  32 44
• Results in loss of privacy 23
  47 30
• Too ill or disabled 14 32 54

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Demographic CharacteristicsFocus Group
Participants

• 36 participants in 4 focus groups
• Ages 58 to 84 mean age 73
• 19 lt 6th grade education
• 42 annual income lt 10,000
• 100 insured
• 31 of African Americans and 95
• of Latinos agreed to be re-contacted

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Focus GroupsSocial Priorities

• Urban isolation and vulnerability
• Racism and discrimination in housing
• and health care
• Social impotence, hopelessness
• Personal safety of elders
• Affordable and easy access to housing

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Focus GroupsHealth Priorities

• Need for community-based health centers
• Access to new prevention and treatment options
• Better communication with physicians
• Better insurance coverage

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Focus GroupsBarriers to Participation in Research

• Distrust of doctors, researchers, institutions
• Lack of information
• Lack of follow-up if adversely affected
• Inconvenience
• Lack of transportation
• Caregiver obligations

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Focus GroupsExperimentation

• They dont know if people are tellin the
  truth. You know, they will tell you youre gonna
  get in this research. Well, what IS this
  research? Are you REALLY gonna do what you say
  youre gonna do? Or are you gonna tell me, are
  you puttin me, and then injectin me with the
  AIDS virus, or a syphilis virus, or something
  else, and Im not aware? People are afraid. They
  just dont know enough about these programs.

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Focus GroupsBenefits of Research

• Advance scientific knowledge
• To preserve ones health
• To learn more about a specific disease
• To teach researchers about cultural differences
• Access to new treatments

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Focus GroupsLack of Tangible Benefits

• Me, I would have to know that the information
  they get is gonna benefit the community, as well
  as me, in some way. If I knewthe findings would
  benefit the community, and something would be
  DONE with those findings. Theyve got researchers
  from UC everywhere, have been out here to
  research the soil, the air, everything. And then
  after, they go, thats the last we hear of it.

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CBO SurveyEarly Involvement of the Community

• Ensuring diverse participation by tapping into
  the expertise of leading Latino and
  African-American community members and involving
  them early on in the development of a research
  agenda and throughout is the best way to ensure
  that the research will be beneficial to the needs
  of these different communities.

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Researchers Working For Communities

• CBO respondent
• Researchers need to spend time in agencies and
  in community or clients homes to develop trust.
  Paying people and providing transportation is not
  enough to increase participation. The study has
  to have some intrinsic worth to the research
  participant. Communicating the results back to
  the agency and participants is crucial to
  developing trust.

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Conclusions

• Need to improve fit between the priorities of
  researchers and those of the community
• AA L community members place a great value on
  knowledge, especially if it improves their health
  or their communities health
• AA L are willing to participate if
• we openly address their concerns
• we reduce barriers to participating

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Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

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Recruitment Framework

• Recruitment Factors
• Sampling frame
• Individual characteristics
• Study characteristics
• Recruitment methods
• Characteristics of personnel

• Stages of Recruitment
• Invitation to participate
• Establishing contact
• Responding
• Study completion

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Factors and Stages of Recruitment Critical
questions

• Stage 1 Invitation to participate
• Is the sampling frame likely to yield a
  representative sample of the targeted subgroups
  (adequate coverage)?
• Does the initial contact method take into
  account, literacy, culture, education, language,
  familiarity with and acceptance of research?
• Are the messages appealing to the targeted
  audience?
• Are their pre-recruitment strategies that might
  be helpful (e.g., radio ads, outreach)?

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Factors and Stages of Recruitment Critical
Questions

• Stage 2 Establishing Contact and Eligibility
• How accurate is the contact information?
• When is the best time to attempt contact?
• Do I have to obtain the consent of other family
  members?
• Is no response a soft refusal?
• Will poor health/high mortality affect
  recruitment?
• Is eligibility criteria a barrier?

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Factors and Stages of Recruitment Critical
Questions

• Stage 3 Responding
• How do I deal with refusals?
• How do I deal with those who do not respond?
• Is the respondent burden reasonable?
• Are there tangible benefits to participating?
• Are the setting, approach and personnel
  welcoming?

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Factors and Stages of Recruitment Critical
Questions

• Stage 4 Study Completion
• How do participants feel about the study?
• How do I retain people in the study?
• Is the respondent burden reasonable?
• Are there tangible benefits to participating?
• Are the setting, approach and personnel
  welcoming?
• How do I feed back the results to participants
  and the communities involved?

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Tailored Recruitment

• Persons of less education and minorities less
  likely to respond to traditional method (e.g.,
  flyers, newspaper ads, mail)
• Need to develop recruitment messages, strategies
  and materials more likely to reach these groups
• Need to track cost-effectiveness by ethnicity

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What Works and What Doesnt?

• Use multiple strategies, personal approaches,
  community involvement, tangible benefits,
  culturally similar research personnel
• Address language, economic, transportation,
  childcare needs
• Openly address issues of distrust and fear

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What Works and What Doesnt?

• Build credibility of research institution through
  community service-address issues of distrust
• Increase awareness of the resources available at
  the research institution for the community
• lectures, medical and referral services,
  translations, health screenings, clinical trials,
  grant writing
• Increase access to research
• community forums, outreach, convenience,
  newsletters, responsiveness to community
  priorities

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Practical Recruitment Advice

• Pretest recruitment messages and strategies
• Ex pre-tested ethnically tailored flyers,
  contact letters, envelopes
• Write developmental time into grants for
  recruitment and instrument development
• Ongoing monitoring of recruitment results is
  critical with adjustments as necessary
• Report results by ethnicity-need to build data on
  effectiveness of methods

38
Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

39
Why an Increased Focus on Communities?

• To broaden our models of health to include
  individual, social and environmental influences
• Expansion of outcomes from morbidity and
  mortality to include well-being and quality of
  life
• Managed care focus on enrolled populations and
  health maintenance
• Challenges of addressing health disparities

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Redefining Primary Care

• IOM concept of primary care integrated,
  accessible health care services, attend to wide
  range of individual needs, long-term partnership
  with clients, and broader family and community
  context of health care
• Attention to social and economic factors
  affecting individuals, families and communities
  that may compromise health and well-being
• Includes specific community-based strategies that
  empower utilize assets of a community to improve
  the health and well-being of its members

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Why Include Communities in Research?

• Enhances usefulness of research data
• Develops skills and capacity of community members
• Improves quality and validity of research
• Creates theory based on social experience
• Involves marginalized communities in addressing
  their own health issues

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Key Principles of Community-based Participatory
Research (CBPR)

• Recognizes community as as important aspect of
  individual and collective identity
• Builds on strengths and resources of community to
  improve health
• Facilitates collaborative partnerships through
  all phases of research
• Integrates knowledge and action for mutual
  benefit of all partners
• (Israel B. Annu Rev Public Hlth. 1998. 19173-202)

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Key Principles of CBPR

• Shared learning and empowering to address social
  inequalities
• Iterative process partnership development and
  maintenance, assessment, goal-setting,
  development of methods, data collection,
  interpretation, dissemination, policy, action,
  sustainability
• Positive and ecological perspective of health
• Dissemination of findings to all partners
• (Israel B. Annu Rev Public Hlth. 1998. 19173-202)

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Methodological Issues

• Flexibility to tailor methods to objectives,
  context, and interests of community
• Involve community members in all stages
• Conduct community assessment
• Develop training and educational opportunities
• Involve partners in dissemination
• Interdisciplinary research teams

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Other Issues

• Community individuals and agencies often
  volunteer their time (as do research staff)
• CBPR may not carry same promotional weight in
  academia as other types of research
• More difficult to obtain funding
• Lack of support for relationship building and
  facilitating community change
• Need for more in-depth publications of processes
  and outcomes of CBPR

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Limitations of CBPR

• Will not resolve racism and social inequalities
  by itself
• Social inequalities persist in the research
  process as well
• But..
• CBPR explicitly takes aim at these inequalities
  and their implications for health differentials

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Outline

• NIH mandate
• RCMAR Centers as a model to improve science of
  recruitment
• Introduce recruitment issues in diverse groups
• Review framework and critical questions for
  designing recruitment approaches
• Community-based participatory research
• Example from the field

48
Translation and Language

• Standard technique Forward/Backward
• Reconcile differences on review by fluent
  speakers
• Target specific population in your area
• Interviewers must be fluent
• Reading level as low as possible6th grade
  minimum
• Do not assume that any standard method will work

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Sampling Strategies

• RDD telephone survey
• Use census tracts to identify sample
• Self identified ethnicity
• Define household
• Last one to have birthday
• Limited to households with telephones
• Literacy less problematic
• Challenge to sample older persons

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Sampling Strategies

• Use lists and identify surnames
• 80 sensitive and specific for Latinos
• Very sensitive and specific for Vietnamese
• Increasing technique with proliferation of phones
• Expensive

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Recruitment Guidelines

• Personal contact is important
• Respect for authority will lead many to say yes
  when they really wont do it
• Refusal/agreement cards with initial contact
• Endorsement by CBO
• Use leverage of health professional
• Investigators have to get involved

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Programa Latino Para Dejar de FumarExample of a
Community Intervention

• Guia Para dejar de Fumar--self-help guide
• Electronic media in Spanish
• Print media limited
• Billboards
• Community participation and presence
• Health professionals role?

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Evaluation Of Community Interventions

• Is it possible to prove efficacy?
• Effectiveness methods less rigorous
• What about process?
• Can the gut overcome the brain?

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Pathways to Cancer Screening for Latinas
Community Intervention

• Free distribution of educational booklet in
  Spanish on breast and cervical cancer screening
• Creation of a network of volunteers to
  disseminate materials
• Spanish-language mass media campaign using
  community role models to increase awareness

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Lessons Learned

• Have to work with the community
• Systematic approach defines content
• Prestige of university still has relevance
• High intensity and emphasis on process
• RCT would be best.
• Independent cross- sectional samples?
• Cohort follow-up
• Alternatives?