Tokenism, or worse, dismissing people as “hard to engage” must be acknowledged and avoided if we are to address drivers of health inequalities in our research. This blog gives examples of how building meaningful collaboration with underserved groups into a PhD can help steer us away from these traps, and lead to better outputs.  

Embedding critical community engagement into our research on health inequalities  

The first step is to identify the research question. Public and patient involvement (PPI) can be very helpful here, if done with proper investment and consideration to make it as meaningful as possible. One round of PPI completed in a format convenient to the researcher (e.g. a focus group) with a go-to ‘panel’ regularly called on by a team is a fairly commonplace approach. However, it can be worth thinking about what else the research team might do - especially if seeking to work with underserved communities.  

Ideally, PPI involves approaching and engaging with a diverse range of people from the groups in question in formats that are designed around their communication preferences (not yours). It can be smoother if the research lead is openly a member of the community – but realistically this will not always be possible. The EPR HPRU prides itself on its commitment to diversity and inclusion, not just in its research but also in its workforce. However, workforce EDI alone is inadequate for representing underserved groups, as individual people can’t be a voice for an entire diverse community. It also runs the risk of placing a burden onto these people to educate the rest of their team to drive forward more equitable research beyond the remits of their actual roles.  The most important thing to remember is that engaging with others is important if you expect them to engage with you.  

This engagement needs to be broad. Focusing only on one or two individuals sharing the same homogenising labels can overlook the nuance and diversity within groups. On the same note, relying on one PPI panel alone can often also be a pitfall. Without proactive critical community-engaged scholarship embedded throughout, it’s easy for research to tick the right boxes without providing meaningful engagement more deeply. 

The very best practice may well be found in processes of coproduction, where-by engaging people as co-authors and truly collaborating as equals, the power imbalance often implicit in traditional PPI and the general inaccessibility of academia are properly addressed. Coproduction can therefore help reverse extractive or exploitative research processes, fostering new senses of ownership and inclusion.  We would recommend having a read of Angie’s blog, Reciprocity, brains and burgers for more information. 

However, meaningful coproduction with minoritized groups cannot be done via PPI panels or traditional research processes alone. This is partly because the groups most underserved by researchers, those labelled ‘hard to engage’, are least likely to be found on PPI panels generated for research groups – simply because of the nature of social exclusion and historic oppression. As early as 2004, Hussain-Gambles and colleagues explained that the brand of being ‘hard-to-engage’ or ‘mistrusting’ of health researchers, is inappropriately cited as an explanation for certain groups being underserved by health research. This trend has continued, and in a 2020 article on confronting racism in health research, Boyd and colleagues pointed out that many research projects focus more on increasing trust than on the wider issue of dismantling institutional racism as a solution to health inequalities.  

The problem is that by following institutional norms and misunderstandings like these, health inequalities and social exclusion from research will continue. In 2020, Boyd’s article pointed out that the issues of underrepresentation in research is still framed as minoritized people failing to engage, when we should be recognising that lack of engagement and consequent health disparities are a failure of our systems. Rai and colleagues explained the issue again in 2022, that people are not “innately distrustful”, rather they may be deterred from participation due to historic and ongoing institutional discrimination associated with health delivery and research. Clearly, reading these publications is not enough – acting against these structural barriers is required from researchers. For example, research done in our team around trust (and more widely on health disparities) now directly acknowledges that building trust or solving health disparities requires addressing discrimination.   

Meaningful engagement with minoritized groups in this way should consistently go beyond the prototypical processes for inviting people to participate in research on their experiences, or to engage via a PPI panels as these prototypes will not address the driving factors of bias that underly health inequalities. The challenge is to conduct research in a way that directly counters systemic barriers (such as racism, or inaccessibility) that have excluded their meaningful engagement to date (Williams et al., 2020). This is what is meant by critical community engaged scholarship.   

The suggestion of attempting to tackle such longstanding systemic issues may feel unreasonable or unfeasible, and not the job that science researchers have signed up to do. This is amplified by the time and resource pressures researchers typically already face in day-to-day work. However, finding ways to embed critical community engagement into the work tends to be a valuable investment for the quality of the output – in other words, it is worth it. 

For PhD students, it can be hard to conduct PPI before starting the PhD, simply because a proposal often needs to be written up before you receive funding for PPI and begin the PhD. We are often directed by funders’ and other people’s priorities to a great extent, and beholden to research processes beyond our control that may be less inclusive, multiculturally competent, or accessible than we would like. Research can be extractive, with the communities that contribute data not being consulted on the work from the outset and failing to benefit from the eventual outputs. In our research projects, we are learning to reduce that by building in points of flexibility during the prioritisation, design and conduct of our research that allow opportunities for collaboration with all the groups our research is for, including underserved groups, wherever possible. By planning projects that offer room for development and adjustment as they progress, we ensure that the research has enough flexibility to prioritise unexpected issues we find out about from our participants. An example below is from my work on power outages.  

Developing the questions  

I was initially looking to do research into “vulnerable” people in power outages. However, reading more about the term for my language glossary, I realised the term is associated with various implications I might not have realised, despite it being widely used in the field. The term was then questioned and flagged as potentially controversial in PPI meetings. This led me to refocus, and I incorporated a question on whether people identify with the term ‘vulnerable’ in a cross-sectional survey and asked about it in a qualitative research project. I am now drafting a journal article about my findings, specifically about whether the term ‘vulnerable’ should be acceptable in the field. Because I was able to learn from and adapt my research, I ended up having a new research question entirely which had not been planned, but was very useful for many of our audiences. 

Developing the materials  

When I first developed my research materials, it was important to me that they sent the right messages and were clear and accessible for the communities I wanted to do research with. There were some aspects of the materials that felt initially unchangeable, as they were based on standard university documents. However, after several different PPI groups advised that the standard materials were not accessible or inclusive, I could clearly show that it was important to find a better way of doing things. We commissioned the creation of EasyRead versions of the standard-university format documents (both available here: http://epr.hpru.nihr.ac.uk/our-research/research-themes/preparedness/win...), which were approved by the university and are the template we will be using in the future. We made sure these were indeed inclusive and accessible by working with a social enterprise to have them produced and checked by a panel of people with learning disabilities.  

Designing the study  

I learned from several different community groups that I completed PPI with that it’s important to be up front about what reasonable adjustments and financial reimbursement will be provided to participants. So much research is done without enough funding available to meet people’s access needs that people often do not want to waste their time expressing interest in a study that probably will not be inclusive for them.  

In my study, it was important to me to be clear in all my advertisements that a wide range of reasonable adjustments and communication modes were available and fully costed for.  I was able to set out that I was prepared for working with people who may require interpreters, become non-verbal at times, benefit from having the questions in multiple formats, or prefer a personal assistant to be with them.  Such reasonable adjustments do carry a cost, but I was able to advertise this because I had put aside a budget to ensure that I could pay for these adjustments if they were required.  

Writing up the results  

I have been very grateful to be able to check the language of my early reports with the participants who influenced the output. I will continue to do this and will be budgeting to ensure they are reimbursed for their time doing this. It’s important to make sure that the message I am sharing is true to what I have learned from them, and to check I have not made any misassumptions that could weaken the impact of the work or even worsen health inequalities.  

I am not yet at the stage of dissemination, but am planning some dissemination events that will be geared towards a wide audience including my participants and the communities I have worked with. At the moment, I am planning a policy lab for the end of my PhD that participants will be invited to attend, and I have plans for more creative information sharing events that go beyond publications into more accessible dissemination media that can be of interest to the wider public.