NIHR Voices 2016

Making patient & public involvement usual & easier & valuing contributions

Delivering clinical research to make patients, and the NHS, better


Making involvement usual & easier - who has the power to change? All ● working together ● sharing the tangible benefits of PPI, ● being clear about expectations re coworking (including being written into bids), ● helping to grow new pro-PPI researchers ● accessibility of materials for engagement PPI Groups and individuals ● helping keep resource banks up to date ● publicising skills and expertise

NIHR family ● hosting and keeping up to date resource banks. ● acting as a hub ● promoting the value of PPI through examples (with numbers), case studies, quotes from well known researchers

Researchers ● including patient/public experts in the earliest stages (not when prompted by funding application form)



Valuing and recognising contributions - who has the power to change? All ● Clarity about expectations

NIHR family ● Funding/wages/expenses - putting pressure on gov to make it easier for those receiving benefits to contribute and not lose out

PPI Groups and individuals ● Development of templates and guidance for recognition ● Examples, templates, expectations ● Sharing & networking

Researchers ● Funding time of contributors in a clear way ● Consulting early at a meaningful stage in project ● Formal recognition of contribution ● Documents evidencing involvement for CV. ‘certificates of participation’ ● Authorship on publications or acknowledgement of contribution ● Real member of steering group, invited to all meetings. ● Right equipment for the role (IT equipment if that is standard for all members) ● Thanks, verbal and written 3 ● Respect for and valuing of lay views

A few more thoughts

• Publicise outside the usual places - some people never set foot in hospital - local market/supermarkets, forums, special interest groups. • Networking within and between groups. • Involving charities, voluntary groups or umbrella groups, eg: healthwatch, sharing with other public sector orgs, councils

CONTACT – Maggie Peat ([email protected])



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