PILOT STORY: Making health research more inclusive to vulnerable groups
LBG Open Innovation in Science Center runs a pilot where the goal is to make health research more inclusive by involving marginalised and often excluded groups, like people without a home. The pilot has already provided important learnings.
LBG Open Innovation in Science Center (LBG OIS Center) funds and supports participatory research, mainly in the area of health sciences. The evaluation of previous funding calls and public consultation activities showed that extremely marginalised and vulnerable groups, such as people experiencing homelessness, rarely participate in such activities, despite facing more severe health risks. Hence, LBG OIS Center launched the pilot program “Inclusion Health” to explore how they can develop targeted funding for the involvement of marginalised populations. The pilot received funding from PRO-Ethics through an open call in 2022. The photo features the team at a recent visit to the Centre for Homelessness and Inclusion Health in Edinburgh.
As part of the pilot, LBG OIS Center led a series of expert interviews with health and social care professionals working with vulnerable groups, as well as experts by experience. Their first and so far most important learning is that while it is relatively easy to find interview partners who were happy to attest to both the exclusion of vulnerable groups from health care access and from health research, it is much more difficult to contact and involve those groups. On the one hand, this is due to extremely marginalised populations often having to contend with chaotic and difficult-to-plan biographic trajectories, which makes ongoing involvement in research activities challenging. On the other hand, they also noticed a certain level of distrust in research on the part of those experts by experience they did interview. There is a sense among those affected that researchers are trying to “get something from them” without offering adequate compensation, as some of the benefits less marginalised participants value (e.g. being named on a research output) mean relatively little to someone whose basic needs like housing and food are not consistently met.
The subject of adequate compensation for this respondent group can be complex, also because there is widespread debate in research with extremely vulnerable groups to what extent monetary rewards (regardless of amount) could potentially contribute to harmful behaviour such as the purchase of illegal drugs. While this could potentially lead to participants suffering harm, it can also mean effectively funnelling public money into the illicit drug trade and its attendant areas of crime. Moreover, for participants who receive welfare benefits, there is a risk that a monetary reward may lead to their payments being reduced. Finally, many extremely marginalised people do not have access to a bank account, making cash payments the only viable option.
● A “one size fits all” approach to compensation may not work in participatory research with extremely marginalised groups and attention should be paid on a case-by-case basis whether compensation is fair, safe and adequate to the person’s individual situation. This can include (but is not limited to) payments in the form of supermarket vouchers, stays in “pay as you go” night shelters, or even material goods such as sleeping bags or mobile phones.
● Inclusive recruitment for participatory research with vulnerable populations must go beyond established channels such as advertising online or in public areas only accessible to those with funds. Recruitment should therefore take a pro-active outreach approach, contacting potential participants via appropriate gatekeepers from the health and social care field or approaching them in places where they usually spend time, such as public spaces.
By LBG OIS Center
Photo: LBG OIS Center
In the pilot stories, PRO-Ethics' RFO partners tell tales from behind the scenes during the planning and implementation of their pilot projects, offering a peek into how the pilots develop practically and over time. The goal is to better represent and learn from insights and tacit knowledge, some of which might be seen as smaller issues and hence downplayed or forgotten in official reporting, despite the learnings they may bring to others. The stories are fully available to all the project partners and support cross-learning activities and ultimately the ethics framework. Some of the stories will also be shared online with the wider public.