Patient, Carer and Public Involvement (PCPI) is a key part of the Network brief. We are required to ensure that 'the views and perspectives of people who have had stroke, their carers and the public are embedded throughout all levels of the Stroke Research Network and all stages of the research process'. (Stroke Research Network Strategy 2006).
We have built a firm foundation for involvement of patients, carers and members of the public in all areas of our development. The process is overseen by a PCPI Working Group led by our PCPI Lead. The group includes a mix of professional and lay representation. These include a representative from 'Folk-Us' which promotes involvement in research projects to people who use health or social care services in Devon and a representative from The Stroke Association and, to ensure balanced representation, we have 3 Lay members on the group. We also have 3 Honorary Lay members from the Management Group.
The Lay members are people who have experience of stroke, either having had a stroke, have experience as a carer, or an interested member of the public. They are able to use their individual skills and experience to help develop PCPI work across the Stroke Research Network.
It remains a priority to ensure we can offer opportunities for people to get involved in our work and feel encouraged to participate. To date, over 300 people have asked to be added to our database and have been able to participate in a number of different ways:
- Keeping up to date with and commenting on network developments via a regular newsletter
- Taking part in planning groups for studies/developments
- Raising public awareness by helping to plan campaigns/activities
- Generating research ideas
- Commenting on and helping to disseminate research findings
- Helping with information about specific studies in the future
If you would like to be involved, or registered on our database, please select the 'How to get involved' link below and you will be taken to the relevant website page with more information.