Transcript Community Partners in Public Health Research: Implications

Community Based Research:
Challenges and Complexities
Summer Public Health Research Institute on
Minority Health
July 13-17
University of North Carolina
Chapel Hill, NC 27599
1998 Summer Public Health Research Institute on Minority Health, UNC-CH
Stephen B. Thomas, Ph.D.
Associate Professor of Community Health
Department of Behavioral Sciences and Health Education
Director, Institute for Minority Health Research
Rollins School of Public Health
Emory University
Atlanta, GA
Sandra Crouse Quinn, Ph.D.
Assistant Professor
Department of Health Behavior and Health Education
School of Public Health
University of North Carolina at Chapel Hill
Chapel Hill, NC
Ethical Principles From the
Belmont Report
National Commission for the Protection
of Human Subjects of Biomedical and
Behavioral Research. Belmont report:
ethical principles and guidelines for the
protection of human subjects of research.
Washington, D.C.: Government Printing
Office, 1988. (GPO 887-809.)
1. Respect for persons
• The recognition of the right of persons to
exercise autonomy.
• People with diminished autonomy are
entitled to protection.
2. Beneficence
• Do no harm.
• The minimization of risk incurred by
research participants and the maximization
of benefits to them and to others.
3. Justice
• The principle that research should
not unduly involve persons from
groups unlikely to benefit from
subsequent application of the
research.
Purpose of Presentation
• To broaden understanding of community
involvement in public health research
• Definitions of Community
• Barriers to Participation in Research
• Models of Community Involvement
• Research Ethics
• Where Do We Go From Here ?
NIH Revitalization Act of 1993
• There are many factors that operate in the
recruitment and retention of study
participants.
• Attitudes toward the scientific process,
the researcher, and beliefs about the
benefits and risks of involvement in
research remain critical factors to be
investigated.
Justification for Community Based
Research
• Enhances the relevance, usefulness and
use of the research data by all partners
involved.
• Joins together partners with diverse
skills, knowledge, expertise and
sensitivities to address complex problems.
Justification for Community Based
Research
• Improves the quality and validity of
research by engaging local knowledge and
theory based on the lived experience of the
people involved.
• Recognizes the limitations a “value free”
science and encourages a self-reflective,
engaged and self-critical role of the
researcher.
Justification for Community Based
Research
• Acknowledges that “knowledge is power”
and thus the knowledge gained can be used
by all partners involved to direct resources
and influence policies that will benefit the
community.
• Strengthens the research and program
development capacity of the partners.
Justification for Community Based
Research
• Creates theory that is grounded in social
experience, and creates better informed
practice that is guided by such theories.
• Increases the possibility of overcoming the
understandable distrust of research on the
part of communities that have historically
been the “subjects” of such research.
Justification for Community Based
Research
• Has the potential to “bridge the cultural
gaps that may exist” between partners
involved.
• Overcomes the fragmentation and
separation of the individual from his/her
culture and context that is often evident in
more narrowly defined, categorical
approaches.
Justification for Community Based
Research
• Provides additional funds and possible
employment opportunities for community
partners.
• Aims to improve the health and well being
of the communities involved through
increasing power and control over the
research process.
Justification for Community Based
Research
• Involves communities that have been
oppressed on the basis of, race, ethnicity,
class, gender and sexual orientation, in
examining the impact of oppression and
attempting to reduce and eliminate it.
Community Diagnosis is Critical
The diagnosis aims to understand facets of a
community including, but not limited to:
1. culture
2. values and norms
3. leadership and economic structure
4. means of communication
5. social networks
6. community institutions
7. history
Definitions of Community
1. Community as a Locality
2. Community as Relational
3. Community as Collective Political Power
1. Community As a Locality
• Refers to the geographical notion of
community -- the neighborhood, town or
city
2. Community as Relational
• Refers to qualities of human interaction
and social ties that draw people together.
3. Community as
Collective Political Power
• Refers to organizing for social action
• The power of organized constituencies is
the leverage for social change, regardless
of whether that leverage comes from
localities or organized interest groups.
Characterize the Target Population
1. Unit of Identity
2. Unit of Solution
3. Unit of Practice
1. Unit of Identity
• Psychological and cultural in nature
• Natural groups that people form for
themselves to organize their
relationships and identify with others.
2. Unit of Solution
• Defined as an aggregate of two or more
units of identity that must pool their
resources, mediate with wider society for
more resources or do both.
3. Unit of Practice
• A social unit defined by public
health as targets for behavior change
intervention.
Community Is Formed When Multiple Units
of Identity Extend and Interlock Themselves
• Strength of community identity is
best learned from its members.
Models of Community Involvement in
Research
1. Participatory Action Research
2. Community Consultation in
Research
Participatory Action Research
"Systematic inquiry, with the
collaboration of the affected by the
issues being studied, for purposes of
education and taking action or
effecting social change”
(Green, 1995).
Participatory Action Research Is a Process
Rather Than a Specific Methodology
1. Extensive collaboration
2. A reciprocal educational process
3. An emphasis on taking action
Ten Commandments of Participatory
Research
Thou Shalt:
1. Consult the community
2. Value process as ye value outcome
3. Hold community objectives to be the
higher
good
Ten Commandments of Participatory
Research (cont.)
Thou Shalt:
4. Not covet the community's data
5. Not commit analysis of community data
without community’s input
Ten Commandments of Participatory
Research (cont.)
Thou Shalt:
6. Not bear false witness concerning community
members
7. Not release findings before the community is
consulted
Ten Commandments of Participatory
Research (cont.)
Thou Shalt:
8. Train and hire community people
9. Not violate confidentiality
10. Freely confess thyself to be biased
Community Consultation in Research
"the primary purpose of community
consultation is to enlist potential
participants as partners in solving
the difficult dilemmas posed in
sensitive research "
(Melton, et al, 1988, p. 576)
Community Consultation Should be Expected
to Foster Perceived Justice
1.
2.
3.
4.
Representation
Ethical appropriateness
Honesty
Consistency
The Impact of Community Consultation
on Perceived Justice
• Justice is important because the feeling of control
is consistent with the humanization of
relationships between researchers and participants.
• With perceived control comes diminished
anxiety--therefore, serving the principle of
beneficence.
Contemporary Examples of Controversies Involving
Human Subjects in Medical & Public Health
Research
1. Measles Vaccine Study in Los Angeles
2. HIVNET Study in Los Angeles
3. Needle Exchange Study in Anchorage,
Alaska
1. Measles Vaccine Study in Los Angeles
• Late in 1996, news coverage of a measles
vaccine study in Los Angeles revealed that
children under the age of 12 months were
receiving the Edmonston-Zabreb (EZ)
measles vaccine, approved by the Food and
Drug Administration only as a new
investigational drug.
1. Measles Vaccine Study in Los Angeles
(cont.)
• However, parents had not been properly
informed that the vaccine was
experimental, and that there had been
adverse effects among children in Haiti and
Africa.
2. HIVNET Study in Los Angeles
• In 1998, the HIVNET study in Los
Angeles was halted when County
Supervisor Yvonne Braithwaite Burke
likened the study to "scientific racism,” and
suggested that African Americans would be
"subjected to medical atrocities under the
guise of scientific research”.
2. HIVNET Study in Los Angeles (cont.)
• Both the Principal Investigator, Dr. Peter
Kerndt, and the Los Angeles County public
health director, Dr. John Schunhoff,
acknowledged that sensitivity of the
African American community to potential
research dictated that community members
be fully involved in oversight of the
proposed study.
Tuskegee: From Science to Conspiracy to
Metaphor
• The dissemination of oral histories about
the Tuskegee Study of Untreated Syphilis
in the Negro Male and fictional dramas like
the HBO original movie “Miss Evers'
Boys” may reinforce distortions in the
historical record and provide moral
justification for refusal to participate in any
clinical research.
Participation in Medical & Public Health Research:
Assessing Attitudes and Beliefs of AfricanAmericans
in an Urban Hospital
Tuskegee: Conspiracy to Metaphor
• Five focus groups were conducted with
African American patients between December
1996 and February 1997. Sixty participants
were recruited from the two general medical
clinics and the Oncology Clinic at an urban
hospital in Atlanta, Georgia.
Preliminary Findings . . .
Perceived Risks of Participation in
Research
• Focus group participants tended to
be in favor of medical research, as
long as they were not “guinea pigs.”
As one participant stated, “… they
always use our race as guinea pigs.”
Perceived Benefits of Participation in
Research
• The discussion polarized around research
that benefits the individual participant vs.
research that benefits the broader society.
Understanding Informed Consent
“If you give consent, then you don’t have
any legal rights. When you sign that
paper, you sign all of your rights away
because they have disclaimers all neatly
typed up, reviewed by their lawyers to
protect themselves from being sued."
(focus group participant, 1997)
Informed Consent and
Building Trust
• To build community trust, researchers
must verify that participants are fully
informed about research procedures, costs,
risks and benefits. This is the context in
which the process of informed consent
becomes a negotiated partnership between
the researcher and participant, rather than
simple adherence to legal procedures.
Exploring Knowledge about the
Tuskegee Syphilis Study
• Throughout the focus group interviews,
participants made reference to the
Tuskegee Syphilis Study. Yet, when
probed about historical facts, their
knowledge was limited.
Strategies to Increase the Involvement of
African Americans in Research
“Let people know the benefits of medical
research along with the curriculum in
public school. The myths about it should
be dispelled.”
(focus group participant, 1997)
Strategies to Increase the Involvement of
African Americans in Research
“If you can get the same thing from
different people, you are apt to feel trust.
When I signed [my consent form] they
showed me a video explaining the risks
and then the same thing was given to me
in written form on the consent form. It
made me feel more comfortable.”
(focus group participant, 1997)
The Race of the Researcher Is a
Critical Issue
• History of distrust well documented
• May facilitate entree & provide
preliminary understanding of resistance
to research
The Race of the Researcher Is a
Critical Issue (cont.)
• May assist in avoidance of mistaken
assumptions
• May shape the research questions asked
Implications and Questions
• Matching investigator to population
• Is race sufficient to overcome distrust?
Barriers to culturally competent research
• Characterization of communities as
“hard to reach”, marginalized
• Failure to appreciate indigenous
knowledge
What Race Would You Like the AIDS Educator
in Your Community to Be?
Sample
church
volunteers
women in
clinic
residents
of public
housing
church
members
Year
N
Prefer
Black
Prefer
white
Race
does not
matter
1991
224
49%
0%
51%
1990
167
24%
4%
71%
1990
83
32%
5%
63%
1990
1, 001
46%
2%
51%
Lessons Learned
• Being invisible
• Be open to learning but also trust your
instincts and experience
• Create an open atmosphere for discussions
about racism
•Address assumptions
•Must do your own racial homework
“To open up to the culture’s soul is to allow
one to become wet, to become soaked in the
cultural and historical waters of those
individuals who are involved in the
experience”
(Friere, 1993)
Cultural Competence
• A set of academic and personal skills that allow
individuals to increase their understand and appreciation
of cultural differences and similarities within, among and
between groups
• Requires a willingness and ability to draw on
community-based values, traditions, and customs
and to work with knowledgeable persons of and
from the community in developing focused
interventions, communications, and other supports
Work With Community Based
Organizations
• Builds on community trust in the CBO
• Community’s trust includes judgment of competence
• Belief that the CBO is fair and unbiased;
• Belief that CBO cares about the community
"Investigators must recognize that simple compliance
with protection of human subjects procedures is not
sufficient. In order to successfully overcome distrust,
community members must be fully informed about
research procedures, costs, and benefits, and have
representation on research advisory committees.
Researchers should conduct their work with an
attitude of respect for the humanity of study
participants regardless of the social and cultural gulf
which may exist between investigator and subject.”
(Thomas & Quinn, 1991)