USING "PATIENT, PUBLIC INVOLVEMENT" TO EXPLORE PARTICIPATION IN RESEARCH BY PEOPLE FROM RACIALLY MINORITIZED BACKGROUNDS ATTENDING A NEUROMUSCULAR SPECIALIST CENTRE

G. Ramdharry¹, B. Osman², M. Rizig³

¹UCLH NHS Trust and University College London, Queen Square Centre for Neuromuscular Diseases, London, United Kingdom, ²Patient, Public Involvement Partner, London, United Kingdom, ³University College London, Institute of Neurology, London, United Kingdom

Background: There is evidence of poor representation people from racially minoritized backgrounds with neuromuscular diseases (NMDs) in clinical research. At our specialist centre in London, UK, 97% of research participants are from White British backgrounds. People attending our specialist neuromuscular clinics live with rare diseases and are dispersed around the UK, so some methods of engagement, such as local community engagement, will not target the cohorts of people we wish to invite to participate in research.

Purpose: We used Patient and Public Involvement (PPI) workshops to explore factors influencing engagement in research for people living with NMDs from racially minoritized backgrounds. This data will then be used to co-design a recruitment strategy in partnership with the participants.

Methods: We invited people to two PPI workshops using video conferencing. The sessions were facilitated by researchers who were also from racially minoritized backgrounds. Workshop 1: Exchange of experiences and ideas; Workshop 2: Bringing ideas together for engagement. The sessions were recording using the video conferencing software. The audio recording was independently transcribed and then coded by GR (researcher). The selected codes and illustrative quotes were sent to the participants for appraisal, feedback and amendment.

Results: Four people living with a neuromuscular disease, and from racialised minority backgrounds attended the sessions. The PPI workshops highlighted key challenges: Knowledge, Personal Choice, Communication, Trust and Shame. Knowledge: Participants felt that the first challenge is for people to access specialist services to gain specific understanding about their condition and be informed of ongoing and planned research. Frustrations were expressed around difficulty accessing information alone. Personal Choice: it was highlighted that research was not always a personal priority for people experiencing the daily challenges of living with a neuromuscular disease. Communication:researchers need to be proactive in reaching out to communities, using digital media and rare disease organisations to deliver accessible information. They also recommended considering a range of languages. Trust:some communities had a lot of faith in Health Professionals, being more willing to trust any information and engage, but other participants acknowledged there may be issues with trust, reflected in the poor uptake of vaccines by some racially minoritized communities. Shame:participants discussed that the personal shame of having a condition, and the response from communities, could affect being proactive with engagement in research.

Conclusions: The valuable insights and sharing of experiences highlighted that access to knowledge and proactive dissemination of accessible information may be key to engaging more people from living with the interaction of rare diseases and racialised minority backgrounds in the UK.

Implications: This data will inform a recruitment strategy, to be co-produced with participants, that will aim to increase the ethnic diversity of participants in trials in our centre. We recommend this method as a way to explore the local contexts around achieving diversity in research cohorts.

Funding acknowledgements: This work was funded by a Patient, Public Involvement grant from the UCL/UCLH Biomedical Research Centre

Keywords:
Research participation
Diversity and inclusion
Neuromuscular diseases

Topics:
Research methodology, knowledge translation & implementation science
Professional issues: diversity and inclusion
Neurology

Did this work require ethics approval? No

Reason: The HRA decision making tool recommended that this public engagement project was not research and did not require ethical approval. The reasons were:

• The participants were not randomised to different groups
• The project did not demand changing treatment/ patient care from accepted standards for any of the patients involved
• The findings were not generalisable, as they are specific to the context of the centre where the workshops took place