What is Patient and Public Involvement in research?
By involvement we mean service users, patients and carers working in partnership with researchers to help plan and carry out research, for example helping to write research proposals. We dont mean service users and carers being participants in research, for example trying out new medicines.
For more information about service user and carer involvement visit the INVOLVE website http://www.invo.org.uk/index.asp
Preparation and support We believe that patients and carers should be properly prepared and supported throughout their involvement. We have used a version of the Patient Learning Journey (PLJ) model to help prepare our network members. For more information about this approach see www.gmc-uk.org/Patient_and_public_web.pdf_40939542.pdf or Morris et al (2010) on the useful links page. A dedicated Patient and Public Involvement Officer provides ongoing support. Being a member of the network also creates opportunities for peer support.
Asset based - We have an asset based approach to involvement which considers what people can do rather than what they cannot. We aim to recognise and build on the strengths and skills of our network members.
Reciprocal relationship We believe that service users should always benefit from being involved in research. Sometimes this may take the form of a monetary payment. We also try to offer other forms of acknowledgement and reward such as, references, development opportunities and support. We endeavour to carry out all involvement activities in an ethical and meaningful way so that the experience of being involved with research is a rewarding one.
Flexibility We appreciate that many people with personal experience of pressure ulcers have complex health needs or caring responsibilities. As such we take a flexible approach to involvement and try to offer opportunities to work from home where possible.