Thinking outside the box: Aboriginal people's suggestions for conducting health studies with Aboriginal communities.

OBJECTIVES: Aboriginal people are under-represented in epidemiological research, largely due to past failures to engage and recruit Aboriginal communities, research fatigue and the use of culturally inappropriate methods. A qualitative study was undertaken in rural and urban Aboriginal communities in north-eastern and south-western Ontario to identify culturally congruent public health research methodologies. STUDY DESIGN: A qualitative participatory research study using focus group discussions. METHODS: This study employed a participatory research framework to elicit methodological suggestions for conducting public health research with Aboriginal communities during focus groups with healthcare providers from six diverse Aboriginal health organizations in Ontario, Canada. RESULTS: Continuing requests for participation in health research studies have led to community exhaustion. Discussions explored appropriate methods to obtain community approval and support for a study, the need for cultural sensitivity training for researchers, the value of conducting studies of interest and benefit to the community, advantages and disadvantages of qualitative and quantitative studies, the benefit of both Aboriginal and non-Aboriginal ethics reviews, the importance of safeguarding trusted information, types of incentives that may enhance study participation, suggestions to improve the collection of questionnaire information and biological specimens, how to resolve contentious issues and dissemination of study results. CONCLUSION: In order to successfully engage Aboriginal people in health studies, researchers need to build rapport with communities, have a community presence, be respectful and collaborative, utilize incentives, and employ flexible and adaptive methodologies of reasonable length. Oral interviews are preferred to self-completed information. The use of more mixed methods methodologies was suggested when quantitative data collection is necessary. Communities expect presentations about research findings.

Reaching agreement for an Aboriginal e-health research agenda: the Aboriginal Telehealth Knowledge Circle consensus method.

INTRODUCTION: In Canada, telehealth has been successfully implemented in a number of Aboriginal communities with subsequent improvements to access to health care and quality of life. However, there are many knowledge gaps that limit our understanding of the broad range of Aboriginal e-health issues; a research agenda is urgently required. The objective of this research was to develop an Aboriginal e-health research agenda designed to address the substantial knowledge gaps that impede e-health deployment and adoption particularly in rural and remote Aboriginal communities in Canada. A consensus method based on Aboriginal culture, values and approaches to consensus was developed to achieve this. METHODS: In this consensus methodology, a core group of Aboriginal telehealth leaders, led by a research facilitator, engaged in an iterative process of individual and group review of research data. The reviewed data included stakeholder interview data, questionnaires, literature and other resources and was prioritized in order to develop recommendations for an Aboriginal e-health research agenda. RESULTS: A total of 40 stakeholders including Aboriginal Telehealth Knowledge Circle (ATKC) members, communities of practice and regional, provincial and federal leaders and policy-makers participated in the consensus process. The research recommendations showed a high degree of consistency among stakeholders. Participants reached consensus on 6 areas: research ethics, internet-based e-health services data, educational resources, sustainability models, best practices and exploration of innovative applications. CONCLUSIONS: An ATKC consensus process was successfully applied to reach consensus on an Aboriginal e-health research agenda, demonstrating the potential of Indigenous research approaches for defining levels of agreement on complex topics. The resulting conceptual map for e-health research can be used as a springboard for partnership-based research initiatives involving Aboriginal communities, governments and researchers, and may be of interest to Indigenous e-health researchers at an international level.