We used Patient and Public Involvement (PPI) workshops to co-design a recruitment strategy in partnership with people living with NMDs from racially minoritized backgrounds. The aim is for this to be a long-term partnership, with additional recommendations on training needs for further involvement. The strategy will be presented locally, nationally and internationally to guide colleagues in inclusive recruitment strategies to improve representation in research cohorts.
We invited people to three 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; Workshop 3: Agreeing the final strategy. Workshops were recorded using video conferencing software. The audio recording was independently transcribed and then coded by GR (researcher). The selected codes were sent to the participants for appraisal, feedback and amendment.
Six PPI partners engaged with the co-production process, either through the group workshops or individual interviews if they were unable to attend the group discussion. They came from a range of nationalities and ethnic backgrounds: African Sudanese, Arab Israeli, British Caribbean, Chinese, Indian and Pakistani. Key strategy areas are presented:
1. Setting up a Patient Public Involvement group for a specific study or programme
- Ensuring diversity of groups, providing training and reimbursement
2. Access to information on research
- Exploring methods of distributing information on research, with diverse representation in materials
3. Accessible and attractive information
- Consideration of digital literacy in communities, plus using translation and interpretation services
4. Cultural sensitivity and diversity in the research team
- Training of research teams in cultural sensitivity and aiming for representation in research teams
5. Incentives for participation in research
- Consideration of reimbursement for people on low incomes, and highlighting contributions to wider society
6. Involving family members in decisions on research
- Consideration that family elders may be the key decision-makers for an individual’s participation in research
7. Communicating research outcomes
- Exploring accessible and media-savvy ways of communicating research outcomes.
We present the key recommendations but recommend that they be built on for specific regions and project contexts. This was a diverse but universally highly educated group, so educational diversity should be included in further development work.
By implementing this strategy, we aim to increase the ethnic diversity of participants in trials in our research group and centre. We recommend this method as a way to explore the local contexts around achieving diversity in research cohorts.
Diversity
Research Recruitment
