Listening

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Listening Learning TogetherBuilding a Bridge
of TrustNCI Health Disparities Research 
Making a Difference to Bridge the Gap June 20,
2006The Good Red Road Tribal Collaborations
in Health Research

• Jeffrey A. Henderson, M.D., M.P.H.
• President and CEO
• Black Hills Center for American Indian Health

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Black Hills Center for American Indian Health

• Community-based 501 (c)(3) organization
• Founded in 1998
• To conduct activities that will lead to the
  enhanced wellness of American Indian peoples,
  communities, and tribes
• Research, Service, Education, and Philanthropy

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Black Hills Center for American Indian
HealthResearch Portfolio

• Home to nine DHHS/NIH peer-reviewed health
  research grants totaling 13 million
• Education and Research Towards Health (EARTH
  Study) NIH/NCI
• Native American Research Centers for Health
  Lakota Center for Health Research NIH/NIGMS/IHS
• Stop Atherosclerosis Among Natives with Diabetes
  (SANDS Study) NIH/NHLBI

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Black Hills Center for American Indian
HealthResearch Portfolio

• Project Export NIH/NCMHHD
• Minority Research Infrastructure for MT/WY Tribes
  DHHS/AHRQ
• Environmental Justice on Cheyenne River
  NIH/NIEHS
• Contextual issues in traditional Lakota healing
• Southwest Navajo Tobacco Education and Prevention
  Project DHHS/CDC
• Regional Native American Community Networks
  Program NIH/NCI

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Black Hills Center for American Indian
HealthResearch Portfolio

• BHCAIH has consented more than 6,000 American
  Indians into its various studies in the past 30
  months
• An example

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Black Hills Center for American Indian HealthThe
EARTH Study

• A baseline feasibility study for a longitudinal
  study of risk factors for cancer and other
  chronic diseases
• Three linked RO-1s BHCAIH, Alaska Native Tribal
  Health Consortium (Lanier), and the University of
  Utah (Slattery)
• Total recruitment goal at baseline 16,000
  American Indians/Alaska Natives

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Tribal Communities Participating in EARTH

• Plains/AZ Center has received tribal approval
  from the following tribes
• Cheyenne River Sioux Tribe
• Oglala Sioux Tribe
• Gila River Indian Community

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Plains/AZ Center EARTH Specifics

• Plains/AZ Center plans to recruit a total of
  5,000 participants in three years
• 4000 between Cheyenne River and Pine Ridge
• 1000 Gila River
• An age-stratified sampling scheme on Cheyenne
  River and Pine Ridge, and a systematic,
  household-based sampling scheme on Gila River
• Recruited 5212 participants in 30 months
• Sahara heel ultrasound for bone density
  determination, biological samples, environmental
  health module, depression, eyesight/hearing, etc.

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The Good Red Road Tribal Collaborations in
Health Research

• The BHCAIH Experience

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The Good Red Road Tribal Collaborations in
Health Research

• American Indians and Alaska Natives, too, have
  historical situations that have fostered mistrust
• Thyroid (I131) studies in Alaska in the 1950s
• Barrow alcohol study, 1970s
• Coerced sterilization of American Indian/Alaska
  Native women, 1970s
• Early use of Depo-Provera and Norplant, 1980s
• Present situation involving Havasupai, 2004

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The Good Red Road Tribal Collaborations in
Health Research

• American Indian and Alaska Native Tribes are
  unique in many ways
• Domestic, dependent nations with sovereignty
• Important implications for NIH data-sharing
• Unique types and levels of approval, which vary
  by tribe, PLUS group consent in most cases
• Multiple IRBs
• Very different demographics
• DHHS/PHS/Indian Health Service beneficiaries

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The Good Red Road Tribal Collaborations in
Health Research

• American Indian and Alaska Native Tribes are
  unique in many ways
• Frequently lack typical supportive and easily
  accessible community resources (e.g., colleges
  and universities, social service agencies,
  grant-making bodies, etc.)
• Have such pressing needs that often health
  research falls far down the list of priorities

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The Good Red Road Tribal Collaborations in
Health Research

• So What Can We do?
• Be there
• Involve tribal and other collaborators early and
  often
• Solicit broad input and feedback

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The Good Red Road Tribal Collaborations in
Health Research

• So What Can We do?
• Add value back to the community in explicit ways
• This can take many different forms
• Durable medical equipment
• Diagnostic and therapeutic services
• Enhanced skills
• Build training and employment opportunities into
  every grant
• Show that you are willing to think outside the
  box and go the extra mile!

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The Good Red Road Tribal Collaborations in
Health Research

• So What Can We do?
• Communicate openly, honestly, clearly, and often,
  and NEVER make promises that cannot be kept
• Disseminate findings clearly and in terms
  understandable to all
• Offer to package research results in a manner
  useful to the tribe for other purposes
• Always be building

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The Good Red Road Tribal Collaborations in
Health Research

• How might tribal members benefit from research?
• Learn new things about their health
• Receive tests, medicines, or other health-related
  items not otherwise available
• Be helped to avoid diabetes, heart disease or
  cancer, and have a longer and better quality life
• Potentially feel good about knowing that your
  participation is going to help others
• There may be benefits for the broader community

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The Good Red Road Tribal Collaborations in
Health Research

• What might be some risks from research?
• Participants identities could be compromised
• Some types of research (e.g., clinical) could
  have significant risks depending on the treatment
• In some cases ones ability to get insurance
  could be affected
• There could also be risks for the broader
  community

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The Good Red Road Tribal Collaborations in
Health Research

• Parting thoughts
• Communication, training, and participation are
  critical to the success of research projects, and
  to the collection of high quality data
• Dont underestimate the time and effort it takes
  both to recruit and follow participants
• As in life, communication is crucial
• Always strive to be MORE inclusive rather than
  less

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CONTACT INFORMATION

• Jeff Henderson
• President and CEO
• Black Hills Center for American Indian Health
• 701 St. Joseph St., Suite 204
• Rapid City, SD 57701
• [phone]
• [phone] fax
• E-mail jhenderson_at_bhcaih.org