Getting started with your Patient and Public Involvement Deputy Director Research Design Service South West Julie Hapeshi

Research Design Service We know it’s important because “People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insight.” Professor Dame Sally C Davies Chief Medical Officer and Chief Scientific Adviser, Department of Health

Research Design Service Involving users and carers is crucial (to your success) Must be taken seriously It’s expected by all major funders Public and Patient Involvement has its own section in NIHR application forms But PPI must also run through entire proposal

Research Design Service Patient and Public Involvement IS Research that is done with or by patients and not to, about or for them Listening and responding to patients’ views Working together with patients to develop a good research proposal Developing an on going, collaborative partnership Commenting on the methods or processes of the research, being actively involved in the research process

Research Design Service Patient and Public Involvement is NOT It’s not Participation: producing results that answer the research question, being the ‘guinea pig’! Its not listening to patients to design your service better Its not being part of a focus group using qualitative research methods

Research Design Service Which level of involvement is best? Consultation? Collaboration? User led?

Research Design Service Which level of involvement is best? Consultation Asking people for their views One off meetings - patient panel May chose not to use their views but still be influenced by them

Research Design Service Which level of involvement is best? Collaboration Involves an active, on-going partnership with members of the public in the R&D process. As members of a steering committee for a research project Collaborating with members of the public to design, undertake and/or disseminate the results of a research project. Writing plain English summaries

Research Design Service Which level of involvement is best? User control Where the initiative and subsequent decision making is with service users It does not mean that service users undertake every stage of the research, or that 'professional' researchers are necessarily excluded from the process altogether.

Research Design Service Ladder of Citizen Participation (Arnstein, 1969)

IMPLEMENTATION IDENTIFYING & PRIORITISING DEVELOPMENT OF THE GRANT PROPOSAL ANALYSING & INTERPRETING DESIGNING UNDERTAKING & MANAGING DISSEMINATION MONITORING & EVALUATION research cycle I NVOLVE November 2004

Public involvem ent in the research cycle Identifying and prioritising Designing and managing Undertaking Analysing and interpreting Disseminating Implementing Co-authored and presented posters at conferences. Contributed comments on presentation drafts. Co-presented to academic audiences. Researchers coming to the Stroke family group to get patients’ feedback on their projects, i.e. the stroke services re- configuration study. Drafting plain English summaries How- involve the public in: * reviewing proposals and commenting on any potential difficulties in the design * developing research tools, information such as questionnaires, patient information sheets and consent forms * monitoring and managing the research process * the selection process of staff and researchers How- involve the public in: * gathering and reviewing documentary evidence * carrying out interviews and running focus groups * developing research tools and information * analysing and interpreting the data or results of research. How- involve the public in: * Interpreting and commenting on results * Analysing publicly available open data How- involve the public in: * developing the dissemination plan  Summarising the research findings in clear and accessible ways  Presenting at conferences, speaking to patients, support groups and service providers  Publication in open access peer-reviewed scientific journals  Publishing on websites, writing to journalists, creating leaflets for waiting rooms or community centres. How: use a mixture of face to face and online tools to facilitate discussions with existing reference groups and networks. This can include inviting the public to an event or researchers attending public and patient forums and events Patient-researcher carrying out semi- structured interviews with patients, using interview guides. Provided rounds of comments as equal team member, Drafted copies of outcome papers to be circulated to patients Meeting to decide on an evaluation strategy for a project designed to support people with cancer to return to work Patients-members of the Stroke group involved in rolling out of re- configuration at a second hospital in Manchester.

Research Design Service PPI - getting it right? You may need to consider your ways of working, too! Accessibility of meeting venues, travel arrangements and payments Timing of meetings - what time is the first bus? Length of meetings Circulation of papers, documents etc - does everyone have ? Deadlines / turn-around times Methods of communication within the team

Research Design Service Do take it seriously - don’t just “tick the box” Describe who has been involved at each stage Describe what PPI has contributed to the proposal Describe how the proposal has benefited from the contribution Describe how involvement will continue throughout the project and the on-going contribution you expect it to make Include (adequate) costs of PPI in your application

Research Design Service Challenges Supporting PPI takes time and resources Explaining and understanding the difference between participation and involvement Measuring the true impact Working with people is rewarding but the spirit of involvement may also bring challenges Incorporating diversity You need to be prepared to change your ideas!

Research Design Service Get help … There may be established groups via charities or local support groups e.g. National Obesity Forum Local NHS Trust PPI teams - a database of public member’s of foundation trusts Via your local RDS office - support to run discussion groups and other activities to get patients or public members interested Some funding to support pre-application PPI activity

Research Design Service Reimbursement principles Service users should not be “out of pocket” Should agree “terms of involvement” Be given enough information regarding reimbursement not to breach conditions of benefits they may receive Criteria for reimbursement should be open and consistent Claim procedures should be accessible and prompt (Greenhalgh et al 2011)

Research Design Service Further Help INVOLVE User Involvement in Health Care Trisha Greenhalgh, Charlotte Humphrey, Fran Woodard Engaging Patients in Healthcare Angela Coulter McGraw Hill PPI Toolkit Julia Cartwright, Sally Crowe Wiley-Blackwell

Research Design Service Why Patient and Public Involvement? - a reminder “Firstly, there are mismatches between what researchers are researching and unanswered questions asked by patients and clinicians; linked with this, there are mismatches between treatment outcomes studied by researchers and those regarded as important by patients. Doctors’ and patients’ priorities are not necessarily the same…” Scadding 2006