Health Information Seeking and Technology Use in Harlem - a Pilot Study using Community-Based Participatory Research

Harlem is a well-known community with rich historical and cultural significance but also serious longstanding health and economic disparities. The Harlem Health Promotion Center is one of 33 Prevention Research Centers funded by the CDC. It is trusted in the community, has conducted research on health in Harlem for 10+ years, and was founded by McCord as a result of his now-famous 1990 study showing that a black man in Harlem had a lower life expectancy than a man in Bangladesh.1 While average longevity in Harlem has increased, this statistic is still true11. The aim of this study is to do formative research to assess current health concerns and technology access, use, and attitudes in Harlem with a view toward creating a community health information and support website portal or other health and technology interventions aimed at improving the health of Harlem residents. The study is part of a CDC-funded Core grant. As mandated for all prevention research centers, it uses the method of community-based participatory research to ensure accuracy and accountability to the community in the direction and development of any interventions. Community-based participatory research (CBPR) This is a recently developed approach to health research that involves researchers and communities as equal and collaborative partners in research. In this approach, community-based organizations are important in the design and conduct of studies. They help involve community members as partners rather than as mere research subjects, use the community's knowledge to help develop interventions, and inform community members about how research is done and what its results are. Importantly, it is expected that research results provide immediate benefits to the community, rather than merely being published2. In CBPR, community members are also involved in getting the word out about the research and promoting the use of the research findings. This involvement can help improve the quality of life and health care in the community by putting new knowledge in the hands of those who need to make changes."3 Advantages of CBPR include increased validity, relevance and use of research results, decreased suspicion of community members who may have historically been only ‘subjects’ of research, ability to take advantage of local knowledge which may be important in ensuring success of interventions, better resource use, and bridging cultural gaps.4 In the case of technology development, it may have the additional advantage of reducing development time and ensuring greater responsiveness to user needs, as concerns and factors unexpected by the development team (including answering the question of whether or not technological solutions are even appropriate), can be elicited before development begins. In addition, the creativity and varying perspectives of the participants contribute to the final design. In this case the focus group study was also intended to inform the creation and specific wording of questions of a random-digit-dialed telephone survey of Harlem, that supplemented the focus groups with quantitative data on technology access, use and desired future developments by Harlem residents.