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 : Listening andamp; Learning Together Building a Bridge of Trust NCI Health Disparities Research: Making a Difference to Bridge the Gap June 20, 2006 The 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 : 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
Black Hills Center for American Indian HealthResearch Portfolio : Black Hills Center for American Indian Health Research 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
Black Hills Center for American Indian HealthResearch Portfolio : Black Hills Center for American Indian Health Research 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
Black Hills Center for American Indian HealthResearch Portfolio : Black Hills Center for American Indian Health Research 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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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
Black Hills Center for American Indian Health The EARTH Study
Slide9 : 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
Slide10 : 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.
The Good Red Road: Tribal Collaborations in Health Research : The Good Red Road: Tribal Collaborations in Health Research The BHCAIH Experience
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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!
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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
The Good Red Road: Tribal Collaborations in Health Research : 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 one’s ability to get insurance could be affected
There could also be risks for the broader community
The Good Red Road: Tribal Collaborations in Health Research : 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
Don’t 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
CONTACT INFORMATION : CONTACT INFORMATION Jeff Henderson
President and CEO
Black Hills Center for American Indian Health
701 St. Joseph St., Suite 204
Rapid City, SD 57701
(605) 348-6100
(605) 348-6990 fax
E-mail: jhenderson@bhcaih.org