Understanding mistrust in research: roundtable report

On 18th October 2022, the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC) convened an online roundtable dialogue on understanding mistrust in research.

The panel consisted of leaders from the NIHR Birmingham BRC, University Hospitals Birmingham NHS Foundation Trust (UHB), Global Talent Compass and the University of Birmingham (UoB) with academic researchers, clinicians, a racial justice expert, a midwife researcher, a senior nurse, and a patient partner, in an event that was part of a series of conversations held during Black History Month last year.

The panel of experts was convened to examine the underlying causes of mistrust that restrict medical, clinical, and research engagement. The group explored the historical factors contributing to mistrust in clinical research and the challenges of marginalised Black, Asian, and minority ethnic communities receiving suboptimal medical care. The panel discussed developing strategies to implement structural change that would increase research participation and promote greater workforce diversity to reduce health disparities in underprivileged communities. The session was chaired by Byron Batten in his role as Head of Inclusion-Improvement, and Chair of the NIHR Race Equality Framework Pilot at UHB.

What have we learnt?

  • Conducting in-depth conversations in our communities with key influencers is essential to creating and developing trust between researchers, wider health services and the community.
  • For genuine involvement and true co-production, cultural competence of researchers and the wider health and social care infrastructure is a prerequisite for change.
  • Research engagement must be led with an empathic and compassionate lens.
  • Research participation is intrinsically linked to experiences and interactions of the broader health and social care sector and wider government institutions. It is essential to understand how those interactions may impact those from racialised and underserved communities.
  • It’s crucial to use statistics to comprehend where we stand in relation to our engagement and where our initial efforts should be concentrated. An in-depth evaluation should be established to measure and survey mistrust.
  • Understanding the historical and lived experiences of underserved groups will add essential context to leading research empathically and help to nurture relationships and rapport building with communities we want to engage with.

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