National Heart, Lung, and Blood Institute
American Indian/Alaska Native Interventions Working Group
Conference Call Minutes

November 6, 2001, 3:00 pm-5:00 pm EDT

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Members Present:

David Baines, James Galloway, Leonard Harjo, Susan McCraw Helms, Emery Johnson, Melvina McCabe, Sarah Nelson, J. Kristin Olson-Garewal, Janine Rourke, Yvette Roubideaux

Members Absent:

Gordon Belcourt, Robin Carufel, Sally Davis, Carole Anne Heart, Joyce Naseyowma, Rosemary Nelson, Bert Thomas

NHLBI Staff Present:

Richard Fabsitz, Frank Gray-Shield, Jared Jobe, Catherine Loria, Teri Manolio

The meeting was called to order at 3:05 pm with a roll call. Richard Fabsitz offered to chair the meeting in the absence of Bert Thomas; there was no objection. Mr. Fabsitz began the meeting with a review of the summary table of the consultation results. The initial response of the Working Group was that the results from the consultation were consistent with many of the comments provided by the Working Group in their first meeting, particularly the emphasis on cardiovascular disease and diabetes. In addition, the Working Group opined that the number of responses was also about what could be expected. The Working Group reiterated that the American Indian and Alaska Native communities will be pleased with the effort by the Institute even if many did not choose to respond. Another member noted that it is not easy to get the attention of Tribal leaders as they have many varying demands on their time. Some members voiced the most surprise at the number of times sleep disorders were mentioned; one suggested this may be related to the higher prevalence of obesity in these communities. Another member indicated that we should expect regional variation in health intervention topics because health problems vary geographically. Cigarette smoking is a perfect example. There was also sentiment for not being too specific, as many tribes hold the belief that focusing on a particular disease may bring on that disease. Life in balance is a stronger concept and better message in many Native cultures.

The Working Group then reviewed the second table related to topics for intervention. One Working Group member noted the most frequent responses related to primary prevention of obesity and weight control, not surprising from her perspective. Others suggested that many communities want to attack this and other health problems but do not know how to measure impact and evaluate the effects of their efforts. An inquiry was made as to whether NHLBI could match Tribes with research organizations that could help with evaluation. Mr. Fabsitz reminded the Working Group that at an earlier meeting they had advised NHLBI not put itself in a position of brokering partnerships. The better approach was to offer a funding structure that allows partnerships to apply and plenty of time in the solicitation for such partnerships to form naturally.

Discussion continued with what the topic of intervention for the solicitation should be. NHLBI staff inquired as to what would be culturally appropriate endpoints for the intervention? For example, would preventing heart disease be a more acceptable endpoint than increasing functional status? One member noted that emphasis should be on community developed interventions including the appropriate endpoint. There is much distrust of western medicine which varies among generations and tribes. Another suggested that the message should be presented in a positive way, not reduction in the risk of disease but maintaining balance in life and health. Disease is seen by many to "get the individual" rather than the other way around. As an alternative, an outcome could be determined during the feasibility study using a participatory process with the community. Other comments regarding the intervention included training the CHRs as trainers for others in the community, considering a sequential intervention approach, and increasing emphasis on dissemination of results of successful interventions.

Features of the Request for Applications were the next topic of discussion. Dr. Jobe reviewed the features planned for the RFA at this time. These include 7-8 month period to develop applications, 4-5 awards, phased approach with feasibility followed by full-scale implementation, emphasis on the quality of the partnership during the review process, community involvement in the implementation of the intervention, and community involvement in the decision making for the study. Several Working Group members mentioned features of the NARCH initiative that were well received. These include encouraging the Tribes to provide the Principal Investigator and/or be the grantee institution, scoring an application higher if it included a participatory process in its development, providing minimum funding levels for the Tribal component of a partnership, and providing local control/input on publications and research results. The Working Group made additional suggestions including providing technical assistance during application development, clarifying the scope of capacity building that is possible within this initiative, using the NIHB Consumer Conference to increase awareness, and using the Native Research Network and list maintained by Dean Seneca (CDC/ATSDR) for dissemination of the RFA and for finding appropriate reviewers. Related to assessment of the quality of the partnership, several suggestions were made: specify the percentage of funds that would go to the tribe, evaluate the history of collaboration, and get letters of support from all parties. Organizing the review in a culturally sensitive way was also an important issue. Reviewers must be included who understand what is needed to do research in the Native communities and what cultural characteristics should be considered in an application, in addition to the scientific concerns. Other suggestions were to site visit before making awards, consider a checklist of approvals that should be included with applications, emphasizing benefits to family over those to individual, and using a community reviewer as the second or third reviewer on each application.

The Working Group had several specific questions of NHLBI staff. In response to how training and capacity building would be part of this grant, staff indicated that this RFA would follow the model of the Strong Heart Study and support exposure to research at all levels through the use of minority training supplements. In response to the plans for technical assistance, staff indicated that 2-4 workshops would be held either in conjunction with large national or regional meetings or in diverse geographic areas to allow access to as many groups as possible. These may include the NIHB Consumer Conference, the IHS Research Meeting, and other regional and national meetings. Mr. Fabsitz and the NHLBI staff thanked the Working Group for their very helpful guidance during the previous year in developing the initiative. They noted that the Working Group had made many useful suggestions that they had educated the staff and influenced the structure and content of the initiative that would lead to the RFA for this project. In addition, he thanked them for their strong recommendation to hold tribal consultation. He noted that the process had been very instructive and, in addition, had allowed staff to meet many individuals that would be valuable resources as consultants and reviewers in the future. He appreciated the Working Group's flexibility in scheduling meetings and conference calls when meetings had to be rescheduled. He hoped that their paths would cross again in the future. He noted that by completing their work prior to the writing and release of the RFA they and their Tribes and Institutions were eligible to respond to the RFA.

The conference call was adjourned at 4:40 pm EDT.

2/28/02

 

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