40 th anniversary: past, present, future third annual turtle mountain research conference march 29,...

40th Anniversary: past, present, futureThird Annual Turtle Mountain Research Conference

March 29, 2007

• William L. Freeman, MD, MPH, CIP– Director of Tribal Community Health Programs &

Human Protections Administrator– Northwest Indian College http://www.nwic.edu– Lummi Nation http://www.lummi-nsn.gov– 2522 Kwina Road– Bellingham, WA 98226-9217– 360-392-4284 fax 360-647-7084 wfreeman@nwic.edu

home: PO Box 5293 Bellingham, WA 98227-5293 360-758-2175

Hy'shqe siam• Thank you respected mentors & teachers

– Francine Romero

– Sam Deloria

– Wylie Burke

– Laura Arbour

– Roger Gollub

– Ann Macaulay

– Alex McComber

– Jerry Mohatt

– Terry Powell

– + many others

• Thank you respected wife– Carolyn M. Robbins

What we will discuss

• The 40th anniversary

• The past: What has happened since

• The past & present: What Tribes & TCUs – and partnerships of Tribes and researchers – have done and are doing

• The future

40 years ago1967 – Director of the Indian Health Service [IHS]

developed & implemented the policy that required approval by the tribal government of all research within the jurisdiction of that tribe

and 31 years ago1976 – First article with any community’s approval of

research: "Permission to conduct this investigation was granted by the Indian Health Service, the Bureau of Indian Affairs and appropriate Navajo tribal authorities, including local school boards."– New England Journal of Medicine “Vitamin C and acute illness in

Navajo school children” 1976, vol 295, p. 973-977.

Recent past: good research• A true “experiment” using human beings

– many people dislike “experimenting” on human beings, especially American Indian / Alaska Native people

• The Diabetes Prevention Program (DPP)– asked people at high risk to develop diabetes to volunteer– assigned volunteers randomly (“like a lottery”) to usual

care, or a diabetes medicine, or life-style change– proved that intense counseling for lifestyle change could

prevent type 2 diabetes [reduce calories, especially fats; moderate exercise 30 minutes a day 5 times a week; reduce weight by 7%]

– had American Indian 171 volunteers

Recent past: bad research• Barrow, Alaska study on alcoholism

• 1970s, researchers from northeastern US– invited by one faction in the community

• announced findings in press conference– held at their northeastern university

• Effects and outcomes:– internal stigmatization by people from Barrow

& nearby communities– bonds on Wall Street adversely affected

• Impact of research results?– no positive change in/by Barrow

Recent past: good + bad research - 1

• Congenital syphilis epidemic, 1980s– reservation not named in publication– but gave precise 1980 US Census pop.

• Reservation children taunted ["Your mama's ..."]

• Gas stations refused to let reservation people use restrooms

Recent past: good + bad research - 2• Hantavirus, summer 1993• 50% of infected people died

– first recognized on the Navajo Reservation– CDC found cause <10 days--a virus from deer mice

Good: CDC helped Navajo Nation Dept. of Health (NNDOH) develop prevention programs

• NNDOH asked CDC not to give Navajo place names in scientific articles

Bad: 1st 2 articles, CDC named the Navajo Chapters– where the people lived who were infected first– where the deer mice and other animals were trapped

• NN approved no research for >1 year, formed IRB

Recent past: implications of bad, and of good + bad, research

• Major community harm was disruption• Major individual harm was “internal” self-

stigmatization for most examples• All subsequent research in many of those

communities was adversely affected• The problem was publication-dissemination• NOTE: most researchers were well-intentioned –

were trying to help the community

Past & present: bad research• Havasupai

– early 1990, tribe approved a diabetes study including genetic analysis, by ASU researchers

– no NLM-listed journal articles on genetic analysis of T2DM among Havasupai, one article on nutrition

– HLA, inbreeding, & migration genetic research also done using the specimens

– sources:• Rubin P. Indian givers. Phoenix New Times 2004; May 27• Dalton R. When two tribes go to war. Nature 2004; 430:500-2• Editorial. Tribal culture versus genetics. Nature 2004; 430:489• Pubmed: Havasupai OR Markow T[Author] OR Martin

JF[Author] OR Benyshek D[Author] OR Zuerlein K[Author]• Paul Rubin [personal communication]

Past & present: UGLY research• Havasupai [there is more]

– concurrently with T2DM study was schizophrenia study– apparently researchers told neither tribe nor individuals– apparently research team obtained information from

clinic charts surreptitiously, after hours, with no approval– apparently the ASU IRB did not comply with own

procedures & requirements

• Was this “amateur night”?• Now prime example of ugly research in Indian Country

– major adverse publicity in Arizona, major law suit by Havasupai

Better tribal or IRB review could have prevented this!

Present: good research as partnership• Kwaday Dan Ts’inchi - “Long Ago Man Found”

– Champagne/Aishihik First Nations [FN], d. 1415-1445• glacier in Tatshenshini-Alsek Park, British Columbia [BC]

– body found 08/99, plan developed, studied to 12/2000– returned to the Champagne-Aishihik

• cremated, potlatch, ashes scattered where found 07/2001

– head found 08/2003, studied, laid to rest 10/2004• final ceremonies being planned

– FN community + BC government set up a joint group to oversee the research within cultural limits

• “People Awakening” Project

Present: basic values of IRB regulations

• Respect for persons

• Minimize harms to persons

• Maximize benefits to persons

• Justice for persons

But the regulations [= 45 CFR 46] do not cover:

• Other Native values

• Other Native concerns

Present: Native values not explicit in the IRB regulations

• Protection of communities

• Respect for elders & knowledge of community

• Respect Native communities, strengths, and survivalmuch research focuses on how bad things are

not on how/why people survived and do well

• Promote resiliency, help activate the community

• Respect and promote tribal sovereignty– tribes themselves should be involved in the research

IRBs and the IRB regulations are good

• Most researchers are more ethical

• IRBs do protect individuals

• The IRB regulations are valuable– and should be understood and used

For tribal communities, people, and TCUs:

• IRBs & the IRB regulations are a floor, but they are not a ceiling

• They are necessary and quite valuable, but they are not sufficient

• The Havasupai experience shows that relying on only another institution’s IRB may not protect tribes

And thus, increasingly …

• tribes and TCUs protect themselves

• tribes and TCUs promote good research

Actions by Tribes & TCUsto protect themselves

• Have an IRB (“Tribal Review Board,” per the regs)– learn about the IRB regulations & how to use them– build beyond the floor of the IRB regulations– solicit allies from IRBs & researchers with goodwill

• Have active process to review & approve research– IRBs do not ask, “Does the research fit the Tribe’s

priorities?” but Tribes need to ask & answer that question– e.g., Model Tribal Research Code, by the American

Indian Law Center, Inc.

Actions to promote good research - 1

Generateprotocol

Identifyproblem

Diagnoseproblem

Developplan

Get funds,approvals

Implementprotocol

Collectdata

Reportresults

Draftresults

Analyzedata

sciencecolleagues

Usual process steps of research

Process steps – implement, data, report

Generateprotocol

Identifyproblem

Diagnoseproblem

Developplan

Get funds,approvals

co-implementprotocol

co-collectdata

co-reportresults

Draftresults

Analyzedata

sciencecolleagues

science &communitycolleagues

sciencecolleagues

(usual, and now expected, process steps of research in Indian Country)

Process step – co-fund, co-approval

Generateprotocol

Identifyproblem

Diagnoseproblem

Developplan

co-fund,approvals

co-collectdata

co-reportresults

Draftresults

Analyzedata

sciencecolleagues

tribe’s resources [fitness center]; PXE, Inc [Pseudoxanthoma Elasticum]http://www.pxe.org ; how to consent before drawing bloods

Process steps – co-analyze data, co-draft results

co-generateprotocol

Identifyproblem

Diagnoseproblem

Developplan

co-fund,approvals

co-collectdata

co-reportresults

co-draftresults

co-analyzedata

sciencecolleagues

People Awakening - “become healthy” vs “the way life is supposed to be”(not co-draft: 1st 2 hantavirus articles; outbreak of congenital syphilis)

Process step – co-generate protocol

co-generateprotocol

Identifyproblem

Diagnoseproblem

Developplan

co-fund,approvals

co-collectdata

co-reportresults

co-draftresults

co-analyzedata

sciencecolleagues

randomized clinical trial--tribe disapproved 1 arm of 4;analyses by tribes in Spirit of Eagles led to new epi questions to answer

Process step -- co-develop plan

co-generateprotocol

Identifyproblem

Diagnoseproblem

co-developplan

co-fund,approvals

co-collectdata

co-reportresults

co-draftresults

co-analyzedata

sciencecolleagues

Kahnawa:ke--change foods in schools, do not try to force change in members’ stores

Process steps: co-identify & co-diagnose problem

co-generateprotocol

co-identifyproblem

co-diagnoseproblem

co-developplan

co-fund,approvals

co-collectdata

co-reportresults

co-draftresults

co-analyzedata

“social pathologies of alcoholism” vs “resiliencies against alcoholism”; NARCH

Actions to promote good research - 2

co-generateprotocol

co-identifyproblem

co-diagnoseproblem

co-developplan

co-fund,approvals

co-collectdata

co-reportresults

co-draftresults

co-analyzedata

CBPR in Native communities

Present-Future: Community‑Based Participatory Research (CBPR) - 1

• Producing new knowledge by "systematic inquiry, with the collaboration of those affected by the issue being studied, for the purposes of education and taking action or effecting social change."Green LW, George MA, Daniel M, Frankish CJ, Herbert

CJ, Bowie WR, et al. Study of Participatory Research in Health Promotion. Ottawa: The Royal Society of Canada; 1994. ISBN 0‑920064‑55‑8

Present-Future: CBPR ‑ 2• Based on a mutually respectful partnership of

researchers and communities

• Involves collaboration, mutual education, and acting on results developed from community‑relevant research questionsMacaulay AC, Commanda LE, Freeman WL, Gibson N,

McCabe ML, Robbins CM, Twohig PL, (for the) North American Primary Care Research Group. Participatory research maximises community and lay involvement. BMJ 1999; 319:774‑778 http://www.bmj.com/cgi/content/full/319/7212/774

Present-Future: CBPR ‑ 3• Not a dichotomous category -- "yes/no CBPR"

• Same continuum as that of “community as Co‑I”

• Examples suggest CBPR steps are possible even in multi-center randomized clinical trials

• CBPR especially in research involving behavior, culture, values, beliefs, attitudes, sensitive issues– sensitive “pathologies”: alcoholism, genetics, violence

(= core “strengths & resiliencies”: sobriety, relatedness [“who is family”], maintaining Native-healthy families)

– including issues outsiders may not consider to be sensitive: e.g., Navajo place names in hantavirus articles

CBPR: community as co‑investigator (Co‑I)• CBPR is a continuum, from minimal to maximal• A story of not listening / listening• Communities being present vs. being Co‑Is• Possible measures of community as Co-I

– percent of time community Co-Is talk in [all] meetings– number of times/day scientist Co‑Is learn something new– percent of plan/protocol/analysis/report is influenced or

changed by community Co‑Is

• Time consuming! – for scientist & community Co-Is• Problem: continuity of partner Co-Is and concerns• Sometimes emotional, for both types of Co-Is

Summary: from 40 years past to present• 1967 – The policy was IHS’s first action of a long-

term movement of TCUs & tribal communities having more control over research

• Since at least 1994, when the Navajo Nation formed its own IRB, Tribes & TCUs have asserted more control in and of research

• More Tribes & TCUs protect themselves– establish their own, effective, IRBs, and– implement their own code to review & approve research

• More Tribes & TCUs promote good research– community-based participatory research (CBPR)

Summary: the future?

• My prediction: that long-term trend will continue

• My prediction: Tribes & TCUs will drive that long-term trend

Partial scientist bibliography

• Cornwall A, Jewkes R. What is participatory research? Soc Sci Med. 1995; 41(12):1667-1676.

• Israel BA, et al. Review of community‑based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998; 19:173‑202.

• Public Health Practice Program Office, CDC. Principles of Community Engagement. Atlanta: Centers for Disease Control & Prevention. 1997. http://www.cdc.gov/phppo/pce/index.htm

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