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Models of Community Engagement in Research Ethics


Nature, in giving us birth, has saddled us with a debt which we ... Ended in disgrace in 1972. Harmed people. Created distrust of health research. Stakeholders ... – PowerPoint PPT presentation

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Title: Models of Community Engagement in Research Ethics

Models of Community Engagement in Research Ethics
  • Joan E. Sieber
  • Editor-in-Chief
  • Journal of Empirical Research on Human Research
  • (510) 538 5424

  • For what was life given to us?
  • Suppose we do nothing and die we have swindled
  • Nature, in giving us birth, has saddled us with a
    debt which we must pay off some time or other.
  • -- William James

5 Themes
  • Communicating new ideas.
  • Sustaining relationships in longitudinal
  • Indentifying and satisfying all stakeholders.
  • Building trust. Preventing mistrust.
  • Transparency and inclusiveness in decision making.

Communicating New Ideas
  • Scientific literacy. Do people understand you
    when you
  • Plan the project with them?
  • Discuss the project with them?
  • Get informed consent?
  • Gather data from them?
  • Share the findings with them?

Kinds of New Ideas
  • Meaning of words and phrases
  • Cognitive Interviewing tool from survey design.
  • Analogies begin with an idea they understand.
  • Evaluation of complex ideas
  • Focus groups tool from marketing research that
    gives people a chance to digest and discuss a new
    idea and examine what they think of it.

Cognitive Interviewing
  • Developed as a formal method in the 80s by
    cognitive and survey researchers studying HIV
    transmission to learn how a given group describes
    a concept what words they use.
  • Known as CASM (Cognition and Survey
  • -- Willis, G. (2006). Cognitive interviewing as
    a tool for improving informed consent. Journal of
    Empirical Research on Human Research Ethics,
    1(1), 2-23.

Two Methods of Cognitive Interviewing
  • Think Aloud method Tell me what you are
    thinking when I tell you that you will be
    randomly assigned to a treatment group or a
    placebo control group, with a cross-over design.
  • Probing method Tell me, what, to you, is
    random assignment? What, to you, does it mean
    to be assigned to a placebo control? What is a
    cross-over design? tell me more about that.

Find an Appropriate Analogy
Corneli, et al. (2006). Using formative research
to develop a context-specific approach to
Informed consent for clinical trials, JERHRE,
1(4), 45-60.
Focus Groups
  • People explore a new idea together.
  • People can raise questions and concerns.
  • People reveal what they consider risks and
    benefits of participation.
  • People reveal their misunderstandings.
  • Important considerations are surfaced.

Some Precautions
  • Create comfort feed them!
  • Make sure it is a compatible mix, (e.g., age,
    gender, SEC, health issues).
  • Take long enough to surface real views.
  • Do enough groups to get the same responses many

Sustaining a Longitudinal Study
  • Framingham Heart Study sustained for 61 years.
  • Third generation is now participating.
  • Produced over 1200 key articles in prestigious
    scientific journals
  • Most successful longitudinal study ever
  • Now vast data on behavioral and genetic risk
  • lt1, used,

Some Keys to Success
  • Live among the people, and respect them as
  • Communicate via many venues newspaper, focus
    groups, town meetings, invitation to drop in.
  • Employ community members.
  • Communicate continually throughout the study.
  • Have clear agreements regarding procedure,
    confidentiality, data sharing, benefits.
  • - Levy Brink. A Change of Heart.
  • - Nancy Silka (2008), Creating Community Research

A Tale of two Government-Sponsored Longitudinal
  • Framingham
  • Begun 1948.
  • Pride of the community.
  • Framingham residents now living heart healthy
    lifestyle of their own accord.
  • Tuskegee
  • Begun 1932.
  • Ended in disgrace in 1972.
  • Harmed people.
  • Created distrust of health research.

  • The stakeholders to identify are the ones who
    will want to stop your research.
  • Who are they?
  • How do you find them?
  • How to you win them over?

Trust Fragile but Essential
  • Because of the ambivalent, negotiable, dynamic
    and reciprocal nature of trust, gaining maximum
    trust is not an ethically appropriate objective.
    A more desirable goal is to strive for optimal
    trust, compatible with a degree of trust-wariness
    or skeptical trust.

How Framingham Almost Blew It
  • The data selling debacle.
  • Some take home lessons
  • Academic people easily make some community people
    feel inferior and insecure.
  • People are mindful of economic exploitation.
  • Privacy is invaded when there is access without
  • The press can fan the flames of mistrust.

Transparency Inclusiveness
  • The longevity of the project.
  • Candor and cooperation of participants.
  • Validity of you data.
  • Willingness of stakeholders and participants to
    support the project when funding is threatened.
  • Keeping the press sympathetic to your research.

Some Useful Articles
  • Gordon Willis Cognitive Interviewing.
  • Amy Corneli, et al. Using analogies.
  • Linda Silka Helping a Community Manage Research
    within it.
  • Julie Postma A demonstration of the difficulty
    researchers have treating subjects as equals.
  • Nancy Kass The desire of subjects to hear that
    they will get better through participation.

In Conclusion
  • Share your experiences with these kinds of tools.
  • Contact me to discuss, ask questions, share
  • JERHRE would welcome manuscripts empirically
    investigating ethical issues.
  • Thank you.