Indigenous peoples & participatory health research:
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Annex B: Example of a research agreement concluded between CINE and an indigenous community in Canada
(Names and places have been omitted.)
The researchers, as named, and the ....... community agree to conduct the above-named research project with the following understanding:
1. The purpose of this research project, as discussed with and understood by ....... in the community, is:
- to improve the understanding of how food practices convey different benefits or risks from a nutrients/contaminants point of view and also culturally and economically; and
- to establish a baseline dietary intake against which future dietary studies could be compared to assess changes in food intake; and
- to identify food/nutrition related concerns and potential food/nutritional problems in the community.
2. The scope of this research project (that is, what issues, events, or activities are to be involved, and the degree of participation by community residents), as discussed with and understood by ....... in this community, is:
- The issues in this project are nutritional and will be addressed through organizational meetings with community members and dietary interviews of a sample of adult men and women which will be conducted in Fall 1994 and possibly in Spring 1994 as well.
- The communities participating in Spring 1994 are a subset of all communities which participate in the Fall 1994. The community can elect to participate in both series of interviews or in the Fall 1994 only.
- To participate in Spring 1994, the community must select one member who will be employed as interviewer by the project and will participate in a training workshop to be held in ....... in February 1994 (exact date to be announced).
- Community members who will participate as respondents will volunteer approximately one hour to participate in the interview.
3. Methods to be used, as agreed by the researchers and the community, are:
- A member of the community will be employed by the project to conduct dietary interviews of one adult man and one adult woman from each randomly selected participating household during at least one season (Fall 1994) and possibly two seasons if the community decides to participate also in Spring 1994.
- The dietary interview takes approximately one hour to administer, is confidential and voluntary. Questions are asked about the frequency of traditional food consumption, the dietary intake in the day preceding the interview, and a series of questions on the family and cultural attributes of traditional foods.
4. Community training and participation, as agreed, is to include:
- One community member will attend the ....... training workshop in February, 1994, a 2-day training session in dietary interview methodology.
- The interviewer will learn techniques common to any survey methodology as well as techniques specific to this particular project.
- It is also within the goals of this project to develop community capabilities to conduct and analyze their own data. Software to aid in this process will be made available to community members. Additional training on the use of this software (EpiInfo) will be offered.
- The development of this project is based on sincere communication between community members and researchers. All efforts will be made to incorporate and address local concerns and recommendations at each step of the project.
- At the end of the project, the researchers will participate in community meetings to discuss the results of the analysis with community members.
5. Information collected is to be shared, distributed, and stored in these agreed ways:
- The data collected are confidential and no name is attached to a record. Copies will be kept at CINE where the data will be converted to an electronic form. The data will be kept on diskettes at the band office and at CINE. The researchers and CINE will be available to answer questions and assist community members should community members decide to use these data for different purposes, beyond the objectives of this particular project.
- A final report will be distributed after approval from the community members.
6. Informed consent of individual participants is to be obtained in these agreed ways.
- The consent form (copy attached) will be read by the interviewer to the respondent. A copy of the consent form will be left with the respondent so that the addresses of each researcher can be used at any time, should the respondent wish to contact the researchers for additional information.
7. The names of participants and the community are to be protected in these agreed ways:
- As mentioned on the consent form, the interviews are confidential. In no instance will the name of a respondent be attached to a record. Since this project is being conducted in multiple communities in ......., and since one of the objectives is to study the variation in traditional food intake between communities, the communities will be identified by name unless decided otherwise by community members. For example, number codes might be considered.
- Before distribution of the final report, each community will be consulted once again as to whether the community will be identified with its name, or whether a coding system should be used.
8. Project progress will be communicated to the community in these agreed ways:
- In Summer 1994, the results of the project conducted during the preceding Spring will be presented to participating communities. The researchers will travel to the communities and hold public community meetings to this effect. Similarly, public community meetings will be held in the Summer 1995, in all participating communities, to report on the overall project results.
- Each researcher will also be available during the course of the project to address particular questions that may arise.
9. Communication with the media and other parties, (including funding agencies) outside the named researchers and the community, will be handled in these agreed ways:
- The funding agency ....... organizes two meetings a year during which the project progress is summarized. In these meetings, as well as during any public communication on project progress and findings, the researchers will be aware of their responsibilities and commitments to the welfare of the communities involved.
The main researchers have acquired funding and other forms of support for this research project from:
The funding agency has imposed the following criteria, disclosures, limitations, and reporting responsibilities on the main researchers:
- No limitations have been imposed on this project. The researchers must report the project progress to the funding agency twice a year.
The main researchers wish to use this research project for benefit in these ways (for instance, by publishing the report and articles about it):
- The researchers will publish a final report to the funding agency in 1995. Scientific presentations in peer-reviewed conferences and publications will be made. The final report will be reviewed by community members prior to publication. Scientific presentations and articles engage only the responsibility of the researchers.
Benefits likely to be gained by the community through this research project are:
The community researcher, who will work as interviewer, will be trained in conducting surveys. The community researcher, as well as other community members, will also be trained in the use of a specialized software which can be used to collect and analyze dietary information as well as information from other fields, as needed, within and for the community.
The community at large, by focusing on its dietary practices, will learn about the health and cultural attributes of food practices. The information gener-ated by this project will assist individuals in making informed decisions as to their diets and food practices. The data generated by this project will be kept in the community, and may be used in the future to address new questions or compare changes in dietary practices.
The community member(s) employed as interviewer(s) will be compensated at the rate of ....... per completed interview.
The community’s commitment to the researchers is to:
- recommend capable and reliable community members to collaborate/be employed in this project; and
- keep informed on the project progress, and help in leading the project toward meaningful results.
The researchers’ main commitment to the community is to:
- inform the community on project progress in a clear, specific, and timely manner; and
- act as a resource to the community for nutrition-related questions.
The researchers agree to stop the research project under the following conditions:
- if community leaders, for example the Chief and Council, decide to withdraw participation; or
- if the researchers believe that the project will no longer benefit the community.
Indigenous peoples & participatory health research:
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