The NIHR Oxford Biomedical Research Centre (BRC) has been working with a group which includes teenagers, young adults, carers and people from black, Asian and minority ethnic communities.
The project is part of the development of a new strategy and had a particular focus on making health research accessible. Group members had a range of experience of health services; including learning disabilities, autism, cancer and mental health services. They were supported by BRC staff and long-standing contributors.
The group reviewed materials such as advertisements and handbooks, researcher talks and webinars. They explored the BRC’s website, giving insight into what worked well and where improvements could be made. They made useful recommendations on issues such as: accessibility for a range of audiences and how and where patients and public feature in content. They pointed out things that can be off-putting, such as the use of jargon, abbreviations and acronyms, lengthy videos and lack of engaging images, particularly of patients and their families.”
Rachel Taylor, the BRC’s Public and Community Involvement, Engagement and Participation Lead, said: “We want our new strategy to have the public and patients at the core and for it to be really outward looking. This group has given us valuable, fresh perspectives and helped highlight the priorities for the new strategy.”
The group members said they found the project rewarding: that they were listened to, and that their contribution made a difference. Speaking of the importance of patients and the public getting involved in research, one contributor, Shamsideen from London, said: “All of those tiny contributions coalesce into a massive breakthrough eventually”.
The group’s advice to someone thinking of getting involved with research was:
Angeli, from Oxford: “Your voice really matters.”
Arooj, from Oxford: “I think if we want research and medicine and clinicians to benefit us, we should be involved.”
Henri, from London: “Go ahead, go for it.”
In the light of group’s input, the Oxford BRC will continue to work with contributors to ensure that:
- Our strategy is outward-facing and patient-centred.
- Our website is accessible and more patient-centred.
- There is guidance for researchers to help ensure their talks are easy to understand and of an appropriate length.
- In public facing activities, we will use “Get Involved” rather than PPI or PPIE.
- We will improve our outreach with under-represented groups.
Where possible, we will sense-check our materials with patients and members of the public
The BRC’s PPIE team will continue to work with the NIHR Oxford Health BRC to ensure that the voices of under-represented communities are heard and embedded in NIHR research in Oxford.
If you would like to get involved in research, or to learn more about it, please email: [email protected]