Equity in health
Health equity means that all citizens should have equal opportunities, if not equal resources, to access health. The WHO defines equity as “the absence of avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically” (WHO, 2018). This definition is based on the concept of social justice, where differences in access to health are considered ethically immoral and unjustifiable.
Equity in research
Equity in health research refers in a similar way to the fact that all citizens, all those who are affected by research or who can benefit from its outcomes, should have equal opportunities to contribute to it. To address the issue of health equity, many researchers advocate the importance of promoting equity in research and they engage in research processes that promote the participation in research of citizens, patients and community members who are otherwise “absent” or “silent” in research.
Write by Christine Loignon
Within the research community, there is little support for public participation in research. In particular, there is little research that engages with community members affected by social inequalities in health. Despite the fact that many researchers are advancing participatory or community-based research mechanisms to influence interventions and public policies that promote health and equity, we have limited knowledge and few levers to promote this research (Favre, 2012).
Sometimes the terms “participatory research” or “engaged research” are misused, and some members of the public may be poorly or only superficially involved in research, with limited influence on researchers or decision-makers(Gibson, 2016). Engaged research should allow for active and genuine participation of people to avoid their instrumentalization and to allow the expression and consideration of the diversity of their points of view and knowledge.
Public participation in research often involves those deemed most competent and willing to participate in research due to their education (e.g., those with a university degree), their financial situation (e.g., being able to pay upfront for the expenses associated with their participation) or the context (e.g., having access to transportation) (McCoy, 2018). For these reasons, some researchers refer to the risk of token or tokenistic participation in projects involving members of the public or the community (Domeck, 2014).
Other researchers point out that genuine participation that meets the expectations of community partners is also threatened by the constraints of academic institutions and the requirements of the funding agencies. For example, the criteria for writing applications may not be adapted to the context of partnered research projects, while the duration of funding may not allow for the time required to develop a partnership with members of the public (Young 2018).