By Abigail Woodward, on 23 August 2022
Despite having worse health outcomes, individuals experiencing socioeconomic deprivation are less frequently included in research. Through a Beacon Bursary funded project, we explored the barriers to research participation among underserved groups. This project is linked to a larger study exploring the self-management of multiple long-term conditions in people experiencing socioeconomic deprivation. We held two public engagement workshops (online and face-to-face) in June 2022 with a total of 11 London-based participants that had at least one long-term health condition and were struggling financially. Two Patient and Public Involvement (PPI) members also attended to share their perspective on taking part in research studies.
What happened at the workshops?
Through a combination of group discussions and interactive exercises, we asked participants to tell us about their experiences (if any) of being involved in research, their reasons for taking part or not, any negatives associated with taking part and how they find out about research opportunities.
We began the workshop by seeking to understand participants’ perceptions of research. For the online session, this was achieved through a myth busting exercise. During the face-to-face session, we did a postcard exercise to visually explore participants’ understanding of research. Postcard exercises are designed to help people relay their feelings through pictures or photographs. We scattered lots of postcards on a table top and asked participants to choose the picture that most related to what they were being asked and they added notes afterwards:
What did participants tell us?
Some of the main themes that emerged were around accessibility of research opportunities, the importance of feeling valued and financial payments/reimbursements.
Access to research opportunities
Most of the participants had some previous experience of research (i.e., interviews, clinical trials) but they had general difficulties finding research opportunities. Participants made suggestions about how to raise awareness of opportunities such as distributing leaflets in community provision including GP surgeries, advertising in newsletters, social media and free newspapers, and word-of-mouth. The issue therefore was not a lack of research but a lack of awareness of opportunities:
“There’s very little information out there. You have to actively search it out to get involved.” (Face-to-face participant)
Participants spoke about flexible data collection methods such as offering options for interviews to accommodate needs i.e., physical/mental health, mobility and disabilities. A shift towards remote research since the Covid-19 pandemic has created more accessible options for some people who work or have childcare responsibilities, but the issue was also raised that researchers need to be mindful of digital exclusion among underserved groups.
Overall, participants wanted to feel valued when taking part in research; something that was considered essential for repeat engagement. Unfortunately, some had encountered bad experiences in the past:
“I got the impression that researchers do not really appear genuinely interested in the input of the public…it seems they’re just meeting the criteria and ticking boxes.” (Face-to-face participant)
Issues around trust, respect, compassion, and cultural competency were also raised. One participant spoke at length about this:
“I’ve come here to add my lived experience…not…to be told that my experience isn’t good enough…or it isn’t what the researchers actually want…there’s a reason why I’ve made it to this [session] today…There were things done for [the researcher] to understand my position and background and because of that, I’m here.” (Online participant)
A positive experience could therefore give people a sense of empowerment:
“Being an expert by experience and sharing what I’ve been through in order to help others is my way of making lemon cake out of lemons…PPI is my way of giving back a little but being part of something great.” (PPI representative, online workshop)
For those on a low-income, the financial implications of taking part in research was raised at both sessions. Appropriate payments/reimbursements were considered essential since many were unable to undertake paid employment due to health conditions. Participants expressed the need for researchers to pay participants in a timely manner and to provide several options for payment because of the implications upon benefit claims/entitlement. Travel expenses were also a source of concern. To increase the accessibility of research opportunities, it was suggested that advance payments for travel costs could help.
One participant who did not have access to Wi-Fi spoke about the cost implications of doing online research using mobile data:
“If I’m using my last five or 10 pounds to actually access [remote research]…if I’m getting the money from them in four to six weeks’ time what do I live on, what do I eat…The monetary aspect is a massive barrier in itself.” (Online participant)
With these comments in mind, research departments may wish to consider whether participants should be routinely reimbursed for online research costs (see useful resource on payment guidance for researchers).
The project has produced a short film which features workshop participants and a PPI representative. The purpose of the film is to raise awareness of the barriers to participation in research with underserved groups.
We have asked participants for their ideas on how to share the project outputs across local communities/networks, to encourage engagement in research. We plan to feed these ideas into our dissemination strategy.
The project team would like to thank everyone who participated in this project for their valuable insights and contribution.