Public Involvement Masterclass - PowerPoint Presentation

1. Public Involvement MasterclassHelen RisebroPublic Involvement Lead Norfolk/SuffolkResearch Design ServiceLisa McDaidSenior Research AssociateSchool of Health Sciences, UEA11th December 2019

2. OverviewWhat is Public Involvement in research?Getting StartedIdentify your purposeWho are you looking for Finding your contributorsAppropriate methodsPI in NIHR ApplicationsPracticalities and supportCosts and reimbursementUseful Resources

3. What is Public Involvement in research?01/05/2020Why UniversityResearch being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.Involvement - where members of the public are actively involved in research projects and in research organisations (e.g. as members of a project advisory or steering group, commenting and developing patients information leaflets and study materials, undertaking interviews with research participants)Engagement - where information and knowledge about research is provided and shared (e.g. an open day, media reports and participant newsletters) Participation - where people take part in a research study (e.g. people recruited to a clinical trial, completing a questionnaire or participating in a focus group)INVOLVE: https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/

4. Examples of:Helping to identify research topics/questions that are importantDesigning studies that are easier to take part inIdentifying outcomes that matter to patientsDeveloping clearer information about studies Acting as members of a project advisory group of steering groupAssisting in carrying out the research (e.g. interviewing participants, data analysis)Sharing findings of important research with public audiences Open days at a University where they invite members of the public to find out about researchResearch festivals open to the public with debates and discussions on researchOutreach activities in schoolsRaising awareness of research though media such as television programmes, newspapers and social media01/05/2020Why UniversityPeople being recruited to a clinical trial or other research study to take part in the research Completing a questionnaire or participating in a focus group or interview as part of a research studyInvolvementEngagementParticipation

5. Stakeholder engagementWhen designing research you may want to involve a wide range of stakeholders: the ‘public’, those served or affected by a programme or initiative, those involved in programme delivery (e.g. people from other universities) and those who intend to use the results (e.g. healthcare professionals, policy-makers, commissioners)Perspectives of people who have a professional role in health and social care services/ academics NOT PUBLIC INVOLVEMENT (even when they are the focus of the research)

6. CLAHRC EOE Handbook

7. Why involve people in research?7Improving the quality of research Strengthens research design Share findings more widelyImproves study documentationBetter understanding of views of affected populationDemocratic principle – people who are affected by research have a right to have a say in what and how publicly funded research is undertakenAccountability of publicly funded researchEnsures topic areas, priorities and research procedures are relevant to patients’ and carers’ needsProviding a different perspectiveRequirement of funding bodies e.g. NIHR

8. Identify your purpose8Think from the outset about why you want to involve members of the public – how can they influence your research at different stages of the research cycle, what will they bring to your research?What difference do public contributors think they can make to your research? How might your public contributors benefit from involvement?How much time can you spend supporting/facilitating involvement?

9. Who are you looking for?9Think about the purpose of your PPI opportunityDo you need particular experience or skills?Patients who have or have had a condition or illnessPotential patients who have a condition or illnessCarers of people who have a condition or illnessStaff of organisations that advocate for patients/service usersMember of support groups General members of the public

10. Find your Public Involvement contributors10Advertise: expressions of interest / applications for the role(s) on offer (twitter, Facebook page, Websites – e.g. People in Research www.peopleinresearch.org, newsletters, flyers in waiting rooms, public notice boards etc.)Ask: people previously involved in your research or approach colleagues to connect you with PPI contributors they already know or approach PPI Approach: relevant charities, community volunteer services or support groups Contact: established PPI groupsCLAHRC East of England PPI Handbook

11. Local PPI GroupsPPIRes, NHS South Norfolk CCGPanel of 70 lay members from a wide range of backgrounds. Jacqueline Romero, PPIRes Project ManagerEmail: Jacqueline.romero@nhs.netTel: 01603 257 009Web: http://nspccro.nihr.ac.uk/public-and-patient-involvement-in-research Cambridge University Hospitals (CUH) Patient & Public Involvement Panel Panel of 80+ volunteers. Talk about experiences with researchers, review research plans, help researchers write and talk about their work. Treena Becker and Georgina NorrisEmail: ppi@addenbrookes.nhs.ukTel: 01223 254620Web: https://www.cuh.nhs.uk/for-public/patient-and-public-involvement-panelCambridge and Peterborough NHS Foundation Trust (CPFT) Service User and Carer Research Group (mental health)https://www.cpft.nhs.uk/RandD/service-user-and-carer-involvement-in-research.htmIliana Rokkou Email: iliana.rokkou@cpft.nhs.uk  Tel: 01223 465182

12. INVOLVE: Charity Involvement Directory12

13. NIHR People in Research13https://www.peopleinresearch.org/

14. Template advertP.20 RDS PPI Handbook https://www.nihr.ac.uk/about-us/CCF/funding/how-we-can-help-you/RDS-PPI-Handbook-2014-v8-FINAL.pdf

15. Selecting PPI representatives Selecting from expressions of interest / application forms: Plan how you will select PPI representatives e.g. any key criteria for shortlisting, interviews, choosing who to invite to the role Be clear about the selection process in your promotion material so people know what to expectThink about key attributes e.g. topic interest, particular skills or willingness to learn them, confidence to ask questions, respect for other opinions, understanding of confidentiality Consider the project timespan, symptoms and disease prognosis

16. Choose the most appropriate methodHow you involve people will depend upon the point in the research cycle, the aims of involvement and the population you want to involveDifferent methods can be combined within one study – e.g. Co-researcher (conducting interviews, recruiting participants)Oversight (e.g. member of trial steering group)Advisor/ Information Provider (member of a task group)Reviewer (reviewing patient-focused study materials)

17. How many people to involve?17One or two, as ‘representatives’ of wider groupsA few people - e.g. to work on specific tasksA larger number - e.g. a community groupMight need any/all of the above, at different stages of the project

18. Duration of involvement18

19. Getting started - PPI meetingsDescribe what you hope to get out of the meeting – what is the purpose?Don’t hijack a peer/disease support group. Get expressed permission from interested members to form a separate group. Facilitation skills to manage viewpointsSeeking views on your research question and proposed plan:Prepare a list of open questions, consider promptsRecord responses Large group: consider taking name badge stickersEnrolling PPI reps for help throughout project lifespan:Take PPI role description(s) with youNote names and contact details of people willing to be involved furtherImportance of induction, support and

20. Template Role DescriptionsCLAHRC example advert and link to role descriptionhttp://www.clahrc-eoe.nihr.ac.uk/2017/02/members-public-sought-join-ppi-coordinating-group/ INVOLVE role description template: http://www.invo.org.uk/be-clear-with-the-people-you-want-to-involve/RDS Template Role Description, p.23: https://www.rds-sc.nihr.ac.uk/wp-content/uploads/2017/09/RDS_PPI-Handbook_web_1.pdf

21. Ethics, feedback and impactResearchers are often unsure whether there are ethical implications of public involvementPPI contributors want to know how their involvement has influenced your research studyMake time to evaluate and reflect on how well you have involved members of the public, what went well and what could be improved?

22. Public Involvement in NIHR Fellowship Applications

23. Assessment Criteria Public involvement forms part of the assessment criteria for your application “The NIHR expects appropriate and relevant involvement of patients and the public and other key stakeholders in the research it supports. It is essential to set out how patients and the public will be involved over the course of the proposed fellowship. Your patient and public involvement plans will be assessed by the Selection Committee, which includes patient and public members.”

24. Stage 1 Guidance NotesNo specific section heading for Public Involvement at Stage 1Describe public involvement activities in:Plain English Summary Section 6. Detailed research planApproximately 8 weeks between shortlisting of stage 1 and submission of stage 2

25. Stage 2 Guidance NotesPlease describe how patients and the public have been involved in developing this proposal – 350 word limitDescribe who has been involved and why this is appropriate, what role(s) they have they played and what influence or change has happened as result of their involvement.Please describe the ways in which patients/service users, carers and the public will be actively involved in the proposed research, including any training and support provided – 350 word limitIn your description you will need to say who will be involved and why. Explain why your approach is appropriate.Describe how you will support and enable PPI in your research (e.g. payments, training).If it is considered not appropriate and meaningful to actively involve patients and the public in your proposed research, please justify why – 350 word limitN/A

26. In advance of application, as a minimum...Contact support groups/relevant charities Enlist support from 2+ public contributors with relevant lived experience of the health conditionSeek their input (e.g. on research question, participant burden, research design, meaningful outcome measures, recruitment process) Record this activity and note outputsGenerate a plan for future PI activities (e.g. management, conduct, analysis or dissemination)Agree a role descriptionAsk public to review your plain English Summary

27. Evidencing Public Involvement in your applicationBe clear about who you are involving and why their experience is relevant Record and describe specific completed activities:“XX and XX met on 20th Nov and recommended recruitment included...”“I presented my idea to xx charity on 8th Jan, xx suggested I also...” Be clear about future plans for involvement: “Together we generated a PI role description which includes.....” “A panel of 5 public contributors have agreed to produce quarterly newsletters for participants and disseminate results to a support group...” Be realistic Remember, you are one person, not a research team!

28. Training and Support for Public ContributorsPut public contributors in touch with one anotherWhatsApp group / group email for panel of volunteers (consent to share details) Provide pre-brief and debrief meetings For steering/management group meetings to give them a ‘safe space’ to raise queriesEstablished PPI groups often run their own induction training and provide peer support These groups may be able to ‘adopt’ public contributors. Contact groups directly for further information.INVOLVE guide to help you plan training and support: https://www.invo.org.uk/resource-centre/training-resource/

29. Introductory Training for Public ContributorsINVOLVE learning and development resource centre https://www.invo.org.uk/resource-centre/learning-and-development/ Starting Out guide for public contributors https://www.invo.org.uk/wp-content/uploads/2019/10/Starting-Out-Revised-FINAL.pdfPublic Information Pack (PIP). Four booklets https://www.invo.org.uk/wp-content/uploads/2019/04/PIP12019.pdfFree online interactive course for public reviewers:https://www.invo.org.uk/resource-centre/learning-and-development/public-reviewing-with-the-national-institute-for-health-research-nihr/ Free MOOC ‘Improving healthcare through clinical research’:https://www.futurelearn.com/courses/clinical-researchLearning for Involvement. Search training events and resources:http://learningforinvolvement.org.uk/

30. Costing public involvementResearch office of HEI/Trust processing your application (e.g. ROO at Cambridge, RIN at UEA)Expenses e.g. travel, subsistence, venue, conferences, training Cost of a volunteer’s time e.g. to attend meetings and review study materials. NIHR will cover this. Policy on payment of volunteers HEI/Trust may have a policy. Established PPI groups will have their own policy/agreementsAsk volunteers how they would like to be paid e.g. payment, donation to a groupINVOLVE guide for public contributors on payment: https://www.invo.org.uk/wp-content/uploads/2016/12/INVOLVE_payment_document_v4-NOV16.pdf  

31. Example of INVOLVE Fees PolicyFeePublic Involvement Activity£150Daily fee for preparation, attendance and follow up of a meeting£50For completing reviews of documents (including appendices) of no more than 50 pages in total. £125For completing reviews of documents (including appendices) of between 51 and 200 pages in total. £200For completing reviews of documents (including appendices) of over 200 pages in total. https://www.invo.org.uk/posttypepublication/involve-policy-on-payments-and-expenses-for-members-of-the-public-including-involve-group-members-february-2016/

32. Research Design Service Public Involvement Fund Region specific: in East of England arranged through your RDS adviserPre funding, max £300. Complete application form: https://rds-eoe.nihr.ac.uk/public-involvement/public-involvement-advice-for-researchers/

33. Contact Research Design Servicehttps://rds-eoe.nihr.ac.uk/contact-us/client-enquiry-form/

34. Involve Guidance Documents34

35. Public Involvement VideosMRC CTU at UCLhttps://www.youtube.com/watch?v=LTKiu9pvAwE NIHR INVOLVE https://youtu.be/UVSeEjAJEm8 35

36. Plain English SummariesKeep sentence length shortAvoid use of complex medical termsAvoid use of research terms Comprehensive overview of the study Include plans for public involvement 36

37. And finally, an example: N-READY ProgrammeNicotine Replacement Effectiveness and Delivery in PregnancyPublic Involvement Advisory Panel (5 contributors)1 PPI Co-applicant, 1 Programme Steering Group member, 3 advisory contributors - all with personal experience of smoking in pregnancy or an interest in the topicCollaboratively we developed a PPI Plan outlining how patients and members of the public will be involved throughout the programmeOne annual PPI meeting, ad hoc activity-based involvement, regular updatesWorking with pregnant women and mums presents specific challenges for involvement and therefore were have developed a flexible approach

38. What have PPI contributors helped us to do? Develop bookletDevelop websiteDevelop texts

39. Impact of PPI (so far)Successful recruitment to first two studiesAccessible information based on user needs (recruitment materials and participant documentation)Putting pregnant women’s concerns first (intervention development)Public involvement contributor learning and sense of achievement