Addressing Challenges in Community Based Participatory Research

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Addressing Challenges in Community Based
Participatory Research
Lessons learned in Native American communities
of the Southwest
Louise Canfield, Arizona Cancer Center Kristina
Flores, New Mexico Cancer Center
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The Tribal Community Cancer Control Project

• Collaborators
• ALBUQUERQUE AREA INDIAN HEALTH BOARD
• ALAMO BAND of NAVAJO
• TOHAJIILEE BAND of NAVAJO
• UNM CANCER RESEARCH AND TREATMENT CENTER
• Goals
• Understand the barriers and facilitators to
  cancer prevention in two Navajo communities for
• Breast cancer
• Cervical cancer
• Colon Cancer
• Prostate cancer screening decision making

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Native American Cancer Research Partnership
Partnering with Communities to Build Cancer
Research Capacity For Native Americans Of the
Southwest
Principal Investigators AZCC NAU Louise
Canfield, Diane Stearns Peter Lance Jani Ingram
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CHALLENGES

• Logistics
• Approvals for research
• Cultural considerations
• Increased administrative load

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LOGISTICS DISTANCES
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COMMUNICATION

• Additional time and expense for travel due to
  vast distances
• No mechanism to pay travel expenses in advance
• Community members may not have funds to cover
  e.g., elders
• Reimbursement for staff can require months
• Scheduling across diverse groups
  labor-intensive/time consuming
• Poor or non-existent phone, FEDEX internet
  services

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APPROVALS TO CONDUCT RESEARCH

• Institutional review board approval is required
  from all agencies involved
• Tribal governments
• Chapter approval
• IRB review boards
• All participating agencies tribal/non-tribal
  Health boards
• Indian Health Service
• Institutional (University) review boards
• Approval updates
• UA/UNM HRRC yearly
• Navajo IRBquarterly

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SHARING RESOURCES

• CBPR resources shared between research
  institution and community
• Salaries
• Discrepancies between communities and
  universities among communities
• Mechanisms to pay salaries directly
• Equipment
• Navajo Nation requires that equipment purchased
  with grant stays in the community.

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DATA OWNERSHIP

• Communities own the data
• Permission to publish may require a lengthy
  process or be denied
• Tribes may terminate a project at any time

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CULTURAL CONSIDERATIONS

• Food is required at community meetings.
• Failure to reimburse community members for time
  and expertise jeopardizes future research
• Gifting is a cultural norm, especially to elders
• Incentives are expected for participation in
  research
• Concept of time is different
• Community members are not obligated to
  institutional timelines

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ADMINISTRATIVE COMPLEXITY

• Reimbursement requires detailed documentation
• May involve several offices and agencies
• Special accounting for food
• Subcontracts
• MOAs, MOUs

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POTENTIAL SOLUTIONS

• Plan
• Provide sufficient resources
• Engage communities as partners

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PLANNING

• Financial officers actively participate in
  submission process
• Evaluate available services to perform the work
• Insure appropriate funding is requested for new
  services
• Leverage resources already in place
• Identify in kind support

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RESOURCES

• Set-asides of sufficient IDC funds to cover
  "non-traditional" costs
• Food, travel, gifts
• Travel advances
• Require all community-based proposals to request
  additional administrative support in budgets
• Identify leveraged resources, collaborations

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COMMUNITY PARTNERS

• Community participation in project planning,
  implementation
• Planning committees
• Advisory boards
• Mutual understanding and respect
• Visits
• Workshops, seminars
• Tribal institutional review board training
• Visits
• Seminars

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A Bale of Hay
www.navajolifeway.org http//unink.com/passages/Mo
nument-Valley/People/TheNavajo.html)
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ACKNOWLEDGEMENTS

• UNM Cancer Center
• Cheryl Willman
• Marianne Berwick
• Ophelia Spencer
• Sadie Monte
• Alamo Tribal Advisory Panel
• ToHajiilee Tribal Advisory Panel

• Arizona Cancer Center
• Dave Alberts
• Elena Martínez
• Margie Barber
• Native American Cancer Research Partnership