Patient and Public Involvement

Research Design
In designing this project we have consulted widely with the NHS and worked collaboratively with patients and carers, and we will continue to do so throughout the proposed work.

Four engagement activities took place:
1. We held a stakeholder engagement event with patient groups and professional bodies. Participants agreed that the project ‘gives patients a voice’. They wanted us to have practical benefit and not just be ‘academic’.

2. We conducted a series of one-to-one meetings with volunteer members of public, for them to comment on the proposed research questions and priorities.

3. We attended local patient and public involvement events, to find lay patient and public involvement collaborators who bring specific personal and professional skills. One of these is now a co-investigator on the programme; the second was unable to continue involvement due to other commitments.

4. Together with our lay patient and public involvement collaborators, we co-designed and co-facilitated two workshops for members of the public to comment on the application. Feedback by email was obtained from people who expressed interest but were unable to attend. In particular, participants wanted clearer objectives and clearer communication.

PPI during the research programme
Anya de Iongh is a co-investigator on the programme. She is a regular blogger ( and tweets (@anyadei) about her experiences as a patient and patient leader. She will have a lead role with our dissemination and social media activity.

Douglas Findlay is the lay member of our Study Steering Committee. He also chairs our Patients, Carers and Public Reference Group through which we will engage with patients and patient organisations.

Both have wide experience in patient and public involvement (PPI) with third sector organisations and with the National Institute for Health Research and an interest in quality improvement.

Patients, Carers and Public Reference Group (PCPRG)
The Patients, Carers and Public Reference Group will work with us on refining research design, interpreting findings and disseminating results. The groups will meet every six months, and attend our annual INQUIRE workshop, to discuss findings of the research. Patients, Carers and Public Reference Group members will also be involved in the interim via email and telephone/webinar.