Partner-to-Partner: Case Stories

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The issues surrounding CBPR and research ethics are complicated and frustrating. In "Partner-to-Partner" community partners share their experiences in addressing CBPR and research ethics.

Gigi McMillan and We Can
Founder and Executive Director
We Can, Pediatric Brain Tumor Network

I wear a lot of hats. We Can - Pediatric Brain Tumor Network is a non-profit organization based in Los Angeles and we empower families to manage their medical situation and to become part of the "process" as their children go through treatment. There are almost 600 families in the We Can Network in California. I'm also on two IRBs at the University of California, Los Angeles (UCLA)-one as a community member and one as a subject representative for the cognitively impaired. I also sit on the National Cancer Institute's Central Institutional Review Board (IRB) that reviews children's cancer studies and am a member of a subcommittee for Secretary's Advisory Committee on Human Research Protections (SACHRP). UCLA was my first experience with an IRB and it took me two years before I finally began to feel comfortable doing my job. Two years is too long of a learning curve. As I became more involved with research issues and the review process, I looked back and wondered how things could have been done differently. Three years ago I began asking community IRB members and other non scientific members around the country how they felt about what they do, what goes on at their institutions, what they hoped for regarding their IRB participation. I asked specific questions about their "job product" and what would they change if they could. I began to see a big picture with recurring themes. I realized that people like me, lay members, were not being properly utilized in the committee process, not because the administrators or IRB chairs or other IRB members did not like us or appreciate us. They simply did not know what to do with us.

I have not seen a document that explains how the federal regulations translate to the committee table. The lack of this specific, practical instruction poses a problem. I want to know what's expected of me, how to do the job, and I want someone to tell me if I met the goals and parameters of the project. I came up with a list of what I could do as a non-affiliated, non-scientific IRB member to be more comfortable with that process. I knew I had to take the initiative-to empower myself, to truly become part of the process. I used the same skills that we teach to our families at We Can. I asked my IRB administrator for information I could use to educate myself-were there conferences I could attend? At conferences, I talked to other people like myself and identified specific needs. Input from these many people led to designing a "Community Member Track" for the national Public Responsibility in Research and Medicine conference (www.primr.org). Over three days, this track included workshops on the history of human subject protection, value and skills that a layperson brings to an IRB committee, a discussion of the psychology of a meeting, how to review protocol, and finally, a chance for community members to grill an actual IRB chair with questions. Every community member who attended the track received a certificate of competency and a letter was sent to the IRB chair at their institution congratulating them on the success of their community member at the PRIM&R conference.

I learned many things at conferences and I wanted to bring this knowledge back to UCLA. I made it easy for my IRB administrator to help me. I asked her to hold a community member luncheon for members of all five of the UCLA IRBs. More than half of the invited members and staff attended. We met each other for the first time and as a group, we came up with a "wish list" that boiled down to three things that we would want from the program at UCLA: a peer mentor, specific training, and a sense of community. These requests complemented what I had already learned from other community members around the country. I asked my Administrator to offer specific training. She designed a short curriculum that addressed "how to review a protocol" from the lay person's perspective. This evolved into a two hour workshop where community members are walked through the "review process". First, the administrator goes through each page of a sample protocol with the group and illustrates, inviting discussion, the kinds of things that lay people should be looking for. Then, as a group, the lay people have a chance to practice their new skills on another sample protocol. This workshop will be part of PRIM&R's 2007 Annual Human Research Protection Programs Conference.

In summary, I think there are five things community members want when they join an IRB: training, mentoring, respect, feedback, and a sense of community. It's important for IRB administrators to nurture community members' passion by getting them involved, teaching them what to do, and telling them when they do a good job. In turn, community members need to take responsibility for voicing their needs and helping their institution to help them, the laypeople, fully participate in the review process.

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Sheila Beckham and WCCHC
Preventive Health Services Director
Waianae Coast Comprehensive Health Center

The Waianae Coast is home to the fourth largest number of native Hawaiians in Hawaii and has long been a focus of researchers desiring to study native Hawaiians, collect data, and leave when funding ends. In 1990, The Waianae Coast Comprehensive Health Center (WCCHC), a Federally Qualified Community Health Center, entered into a joint research relationship with the University of Hawaii's Cancer Research Center to implement the Waianae Cancer Research Project.

Research Protocols, Principles, and Guidelines
The Waianae community established and published a set of research protocols, principles and guidelines for participatory research in 1992, and a protocol for the dissemination and publication of data in 1995 that would guide future community-based research. WCCHC's multidisciplinary research committee was established around this time to assume responsibility of reviewing any research that might involve patients, staff, or community residents. The research committee's primary purpose is to ensure all proposals approved by the committee are sensitive to diverse groups of cultures, ethnicities, and communities on the coast, and the secondary purpose is to ensure that the research is relevant to the needs of the community. An important distinction between the research committee and the IRB is that the research committee reviews a particular proposal before it is submitted for funding and before providing the valued letter of support.

Community IRB
If the proposal is funded, it will then come to our formal IRB, which was established to protect the special features of our community and to ensure that the community has a voice. WCCHC decided to establish its own recognized IRB in 2005 after noting that many researchers continued to bypass the non-binding review system of our research committee in hopes of obtaining expedited approval for a proposal. Many researchers have questioned the need to obtain approval from our IRB when they've already received approval from what they consider to be a "gold standard" university or medical center-based IRB. Our community-based IRB has intimate knowledge of our community and its residents, and it is in a position to determine successful elements related to community-based research. We prefer to see a proposal come through the research committee at its inception.

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Alex McComber and the Kahnawake Schools Diabetes Prevention Project (KSDPP)
Former KSDPP Training Coordinator

Historical Context of the Mohawk People and KSDPP
The Kahnawake Schools Diabetes Prevention Project exists within a context of traditional Iroquoian history and belief system. The Iroquois foundations include The Great Law of Peace -the Kaianereko:wa-and the Creation Story and ancient ceremonies. These reflect key teachings-the importance of the balance of society between men and women, the equality of all human beings in the society, and the emphasis on responsibilities of men and women in not only taking care of today, but providing for the seven generations ahead. The strength of the Iroquoian spirit is demonstrated in Kahnawake Mohawk Territory from the 1960s to today with events such as the reemergence of traditional government within the community, parents coming together to control of the educational system, and community members taking control of health, community and social services. Within that context, there is the Kahnawake Schools Diabetes Prevention Project. In the mid-1980s, doctors at the local hospital documented the high rates of diabetes-12% of the adult population. When they brought this information back to the community, elders said, "We have diabetes, and we have to live with this, this is our problem. But please do something so the children don't get it. Prevent it in the children." The doctors believed there was need for research to move it forward and approached the local Kahnawake Education Center, the Kateri Memorial Hospital Centre (KMHC), McGill University, and the Université de Montréal. From this came a community - university team that developed a project proposal that in 1994 received funding to set up KSDPP. KSDPP includes nutrition and physical activity programs and an elementary school diabetes prevention curriculum (which was developed by KMHC personnel).

As history demonstrates in Indigenous communities: "Outside research teams swooped down from the skies, swarmed all over town, asked nosy questions that were none of their business and then disappeared never to be heard of again."- Louis T. Montour MD, 1987. Kahnawake embarked upon a community-university partnership to create a program designed to be a different approach to research-research that would give back to the community.

Community Advisory Board
This community-university partnership established a Community Advisory Board (CAB) to monitor the project's intervention activities, to work with the research team, participate in the evaluation process, and to participate in developing a code of research ethics. The decision-making model that was built into KSDPP mirrored traditional Mohawk decision-making. In the longhouse, there is the well, in which issues are generated and put out for discussion. The group agreed that the agenda fell to the staff, so that interested researchers and community members would contact the staff to present requests and research proposals. Then, it would go to researchers to discuss, and finally, the CAB would deliberate, discuss and confirm the decision.

With this kind of decision-making process, KSDPP set out to establish a code of research ethics. It came from the consensual decision-making that is part of Mohawk/Iroquoian culture, and it also came from the community-based participatory research world. The Code of Research Ethics explains the relationship for working with universities, researchers and institutional review boards. In KSDPP's experiences of working with new research proposals, there has been wonderful collaboration between KSDPP and its CAB and the institutional review boards. As a community, this demonstrates Kahnawake's interest in research and their efforts to ensure respect of community members, the community itself and a collaborative research process.

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