CCF PPI 2009 Active patient and public involvement in research applications National Institute for Health Research Central Commissioning Facility Jean Cooper Moran, Senior Manager Patient and Public Involvement, NIHR CCF

NIHR Research Programmes: Translating research evidence into NHS practice Basic Research (Biomedical, population, Social Science& engineering & technology) Experimental Medicine Effectiveness and cost- effectiveness Adoption into the service Proof of conceptEfficacy Knowledge transfer for NHS NICE Research Centres Programme Grants Healthcare Technology Cooperatives Health Technology Assessment Service Delivery and Organisation Research for Innovation, Speculation and Creativity Invention for Innovation (i4i) Research for Patient Benefit

The Research for Patient Benefit Programme: Funding for the programme to £25 million per year Grants may be up to 36 months duration with a maximum cost of £250k Active patient and public involvement in research applications

About the programme: Response-mode funding Supports high quality health services and public health research relevant to the NHS Managed by the NIHR Central Commissioning Facility Ten Regional Funding Committees Research for Patient Benefit (RfPB)

RfPB Regional Funding Committees x10 (one in each SHA area) Up to 20 committee members (includes two lay members on each committee)

Study the way that NHS services are provided and used Evaluate whether interventions are effective and provide value for money Examine whether alternative means for providing healthcare would be more effective in terms of cost and effectiveness Formally assess innovations and developments in healthcare RfPB supports projects in health services and public health research that could: Aims of the RfPB programme

Arising from daily practice in the NHS Developed between NHS and other partners Open as to topic and as to method Generating tangible benefits in health and healthcare A responsive programme with a strategic scope - regionally delivered and centrally led RfPB - A vision of research….

 Funding competitions held in year 1 3  Projects funded 79  Awarded £14.5m  Up to £250,000 per award  Project duration up to 3 years  Peer reviews from the academic and practice communities over 1000  Committee members across 10 regions of England 200  Lay members of regional funding committees 20  Lay reviews of applications by individuals and groups over 140  Committee meetings in 10 regions of England 60  Enquiries through the NIHR CCF website. 1,000 Research for Patient Benefit - Year One in numbers Source: Prioritising Patients: NIHR Research for Patient Benefit Programme – A review of the first three funding competitions (November 2008)

Examples of funded projects: A critical analysis of the mental health needs of older prisoners Relative efficacy and cost-effectiveness of different treatment approaches currently used in the management of epilepsy in people with a learning disability The acceptability, feasibility and effectiveness of individual versus parent enhanced cognitive behaviour therapy in young people with obsessive compulsive disorder Early detection of psychosis via community and educational organisations: a feasibility study The use of text messaging (SMS) to reduce repetition of self-harm: an exploratory trial. RfPB Competition 1

What do SURF and HCAI do? We are looking for people from all walks of life to join our groups and help: Decide how best to involve patients and public in future research Identify the most important areas for research in these fields Become involved in developing, designing and conducting new research Keep the general public informed by publicising research findings.

“I am an MS patient and have been for a number of years. This activity (lay review) gives me a chance to feel useful again.” “I resigned from my professional career when I had a baby, and she is a deaf child. I would really like to review in this area – can you help me?” “ My husband died recently from cancer and I felt helpless to do any good until I joined my local LInkS group and found out about research programmes and lay review.” To feel they can make a contribution as a service user To offer their own and their family’s experience To make contacts for others and to network To make a focused contribution in a target disease area and assist NHS research in that field. What are our lay colleagues looking for?

PPI is managed as an integrated part of our programme management: - Through our review and assessment processes – this means all members of each programme have experience of PPI and how to apply it - By helping the applicant teams include PPI in their application to best effect Key topics are - Where do I find lay volunteers? What is appropriate PPI? and What is good practice for composing the application’s lay summary? PPI and research assessment in the NIHR CCF programmes

The Plain English summary is a key ingredient Have the relevant ‘appropriate’ organisations or groups of service users been involved in the planning? What activity took place to create an environment for PPI before the application was written? Accurate completion of the PPI ‘grid’ – tell the truth Is there a co-applicant service user? What do we ask our reviewers to look for? Looking for good PPI practices in the research applications (1)

Make a discernible difference? Use the social model of disability approach? Involve patients in the early development of the proposal? Have equal steering group representation for professionals and lay people? Does the planning: Source: Linda Laurie and Sue Hinder, lay committee members, at the RfPB 2009 Lay Committee Members’ Workshop, NIHR CCF 30 April 2009 Looking for good PPI practices in the research applications (2)

Involve service users in designing questionnaires and topic guides, conducting interviews and focus groups, reviewing transcripts and contributing to interpretation and preparing patient information? Are there arrangements for participants to be informed of research findings? Is there involvement of patient groups and charities in disseminating the findings among patients and service users? (RfPB Director’s Message No.4) Does the planning: Source: Linda Laurie and Sue Hinder, lay committee members, at the RfPB 2009 Lay Committee Members’ Workshop, NIHR CCF 30 April 2009 Looking for good PPI practices in the research applications (3)

(1) Invitation to review from NIHR CCF. (2) What does a lay colleague How is the contact made? need from NIHR CCF to accept the invitation? NIHR CCF website information and contact by PPI manager Recommendation from UKCRN/other source Direct contact with service user organisations Knowledge of the NIHR programmes Understanding of the task Clear and useful guidance Sense that effort is appreciated Feedback How do we manage lay colleague involvement?

Provide appropriate, clear guidance on the review form for reviewers’ use Provide appropriate clear guidance when recruiting PPI colleagues for review tasks Provide support for those members of the public undertaking PPI activities Track and develop best practices in all these areas Summary of the PPI aims of the NIHR Central Commissioning Facility

Patient and Public Involvement team at NIHR CCF Thank you Contacts NIHR CCF, PO Box 407, Teddington, Middlesex, TW11 0XX (PPI (PPI Tel: Fax: Web: