“We are not that hard to reach!” – involving ‘seldom heard’ communities in research

Tackling health inequalities by engaging those ‘seldom seen, seldom heard’ in research and healthcare services is a priority for the Department of Health, National Health Service and research universities in the UK. In July, the University of Manchester’s Public Programmes Team, of the Research and Innovation Division, held a two-day community ‘Sandpit’ event, geared towards Public and Patient Involvement and Engagement (PPIE) in research. The Sandpit event tried something a little bit different. The organisers brought together approximately 30 artists, researchers and voluntary and community organisation (VCO) representatives from across Greater Manchester. We participated in intensively facilitated workshops aimed at generating innovative solutions to common research problems. Our aim? How to engage ‘hard to reach’ communities in research.

In the healthcare service context, the notion ‘hard to reach’ refers to underrepresented groups of people who are potential service users, but who are difficult to involve in public participation and whose voices therefore go unheard and needs unmet. The term is often used to refer to ‘underserved’ minority groups, such as ethnic groups, LGBTQ+ people, people with disabilities or people who are homeless, amongst others.

Researchers from the University were invited to join the artists and VCO representatives on the second day of the Sandpit event. We watched short presentations on public health and epidemiology in the context of Greater Manchester, to show us just how much health statistics differ between ethnic groups and geographical areas, and a presentation on the notion of ‘hard to reach’ communities. At this point, a VCO representative raised their hand and said “I have a problem with the way this issue is phrased – we are not that ‘hard to reach’! We may be hard to engage, if trust is not developed, but we are not hard to reach”.

This one sentence really stuck with me. The wording ‘hard to reach’ puts the onus on the service user (e.g. “you are hard to reach”), which is arguably inappropriate when the barriers they face to healthcare services are often outside of their control. It suggests that the problem lies within the group, rather than within our approach to them. One alternative interpretation of this expression is that the services are ‘hard to reach’. A result of funding restrictions and service limitations or something more systemic; services that for one reason or another have always been relatively impenetrable and thus discourage certain services users from accessing them.

From my experience, researchers are aware of this and understand that the task of engaging and better representing marginalised groups in research is a task for them to accomplish. Initiatives like the Sandpit event and teams like the Public Programmes Team are in place at the University for precisely this reason. Nevertheless, the expression ‘hard to reach’ has become a staple in the research community’s discourse. Instead, perhaps we should be looking to replace this phrase with one that puts the emphasis on researchers and service providers to engage potential service users; phrases such as ‘seldom heard’.

The community Sandpit event was a pleasure to be a part of and a success. After the presentations, ice breakers and networking activities, we worked in small groups to co-design a project and to pitch it to the wider group. In bringing together different sectors, truly multidisciplinary teams were created, through which unique knowledge and expertise could be shared. After presenting our project ideas, we each voted for our five favourite pitches and the top scoring projects were awarded funding to pilot their proposed research. The hope is that community projects such as these will offer valuable insight into how to reach and represent ‘seldom heard’ communities in research and healthcare services.

Hannah Long, PhD student in the Manchester Centre for Health Psychology

@hannahlong_hl

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