Approaches for Collaborating with Research Cautious Populations

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Approaches for Collaborating with Research
Cautious Populations

• Nicolette Teufel-Shone, PhD
• College of Public Health
• University of Arizona

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Presentation Objectives

• Overview of some concerns of populations cautious
  of research activities
• Based on experience with sovereign Native Nations
  in the greater Southwest
• Native Nations approaches to secure oversight of
  research activities on tribal lands and with
  tribal members
• Suggested methods for conducting research with
  cautious populations

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Challenge

• Communities distrustful of research
• Minority
• Homogenous (culturally and/or genetically)
• Somewhat socially isolated geographically
  defined
• For American Indians, this distrust has evolved
  from more than a century of researchers
• exploiting tribal peoples rights as research
  participants
• not understanding the parameters of sovereignty
• Misinterpreting/misreporting cultural behaviors
• Today many Native and non-Native researchers are
  unfamiliar with the federal and tribal policies
  and procedures governing human subjects and
  Native Nation-research institution agreements

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Recommended Approaches

• Research readiness
• Researcher preparedness
• Cultural appropriateness of methods
• Community Engagement
• Mutual understanding of the aims and activities
  of the research or data collection
• Formal partnership
• Memorandum of Agreement
• Government Resolution
• Current paradigm Community Based Participatory
  research

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Readiness of the Researcher

• Familiarity with the historical context of
  tribe/community-research relationships
• Willingness to
• Inquire about communitys ideas, perspective and
  methods
• Incorporate community ideas
• Willingness to share
• Decision making
• Leadership

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Appropriateness of the Research Design and Methods

• Does the research plan and methods
• reflect the ideas and perspectives of the
  community?
• Do all stages of the research engage the
  community?
• Design
• Data collection
• Interpretation
• Dissemination

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Example adaptation of NCIs HINTS with a Native
Community

• HINTS Health Information National Trends Survey
• Developed a local team to culturally adapt the
  survey
• Need to maintain questions to allow comparison
  with national sample
• Need to respect alternate explanations of cancer
  etiology
• Mutual understanding balance of perspectives

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HINTS - Engaging Community in Multiple Levels of
Research

• Design Sharing decision making with local
  collaborative investigative team
• Local relevance of existing questions
• Developing new questions
• Data collection Random household survey
  acceptable
• Local trusted data collectors, can not just look
  the part
• Complete HIPAA and Human Subject Protection

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HINTS - Engaging Community in Multiple Levels of
Research

• Interpretation
• Lack of awareness of cancer screening
• Local interpretation temporary providers do not
  make referrals yet IHS records indicated posts
  were filled
• Dissemination
• Community presentations
• National presentations and posters
• Lay and peer-reviewed publications

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Question Design

• Standard HINTS queries about contact with a
  range of health care institutions and services
  not appropriate e
• Standard HINTS queries about contact cancer
  etiology was limited, did not include
• Social causes
• Imbalance with forces of nature
• Internal causation

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Other examples of alternate research methods

• Story telling, collected from rich case
  studies/participants, e.g. What do you think
  causes cancer
• Elders
• Healers
• Those with cancer experience
• Use a mixed local and outside investigative team
  to analyze qualitative data

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Recommended Approaches

• Research readiness
• Researcher preparedness
• Cultural appropriateness of methods
• Community Engagement
• Mutual understanding of the aims and activities
  of the research or data collection
• Formal partnership
• Memorandum of Agreement
• Government Resolution
• Current paradigm Community Based Participatory
  research

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Formal Partnerships

• Formalized through documentation
• Protect all partners
• Reduce miscommunication
• Recognize authority of both the local and
  external partner
• Tribal sovereignty is the inherent right of
  Native people to self-government,
  self-determination and self-education governance
  of activities within Native lands
• Tribal/Govt resolutions establish relationships
  in the midst of governmental change

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Types of documentation

• Memorandum of Understanding (MOU) describes a
  general willingness to collaborate
• Memorandum of Agreement (MOA) describes tasks and
  responsibilities of a collaboration
• Contract describes a fee for services
  relationship between two parties

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Community Based Participatory Research (CBPR)

• CBPR has emerged as a alternate research paradigm
• Builds on the expertise of community members,
  insiders
• Orientation to research that focuses on the
  relationship between and strengths of academic
  and community partners
• Not a set of research methods
• Has a goal of social change

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Some Key Principles of CBPR (Israel et al. 1998)

• Builds on strengths and resources of all partners
• Facilitates collaborative, equitable involvement
  of all partners in all phases of research
• Promotes co-learning and an empowering process
  that addresses social inequalities.
• Engages both the community and outside partners
  in making decisions and sharing in the
  responsibility for the research
• Involves a long-term commitment by all partners

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CBPR is distinct from..

• Community-placed research in which the community
  is the setting or place of the research
• Community outreach which emphasizes service
• Engagement of community members in the review
  and/or oversight of research
• Hiring community members to translate research
  materials and survey instruments
• Hiring and training community members to collect
  data using outsider investigator methods and
  instruments

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Value of CBPR

• Outside research partners learning about
  community concerns with research designs and
  methods appreciating the insiders perspective
• Communities understanding the rationale behind
  specific research practices, e.g. case-control
  design, random sampling appreciating the
  outsiders perspective
• Greater collaboration and trust promoting
  application of research outcomes

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Objective of Applying of Informed Research
Practices

• Reduce the incidence of miscommunication that
  contributes to
• Disrespectful research
• Non-approval of research requests
• Enhance the quality and benefits of research

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Thank you
Contact informationNicky Teufel-Shone,
teufel_at_u.arizona.edu