PPI and the researcher: a view from academia

Dr Katherine KnightingSenior Research Fellow, PPI Lead for Research

@EHUKate knight@edgehill.ac.uk

LivEN PPI workshop - 22nd November 2018

• Our experience of working with patients and the public on a recent SR project

• Benefits and challenges of PPI to the SR

• Benefits and challenges for our PPI colleagues

• Looking forward

Why PPI in SRs?

• To address questions that are important to people – help to prioritise based on experience

• To investigate outcomes that are important to those affected

• To ensure reviews are accessible to people making decisions; readability

• Wider dissemination

• Considered best practice by review authorities: e.g. Cochrane, CRD

• And funders: e.g. HSDR

Models of PPI in SRs?

• Consultation – on key aspects to inform a SR

• Collaborative - involving users via advisory group throughout (or at stages)

• User-led – their idea, impact and direct involvement in all stages of the review e.g. questions, outcomes, criteria, search, types of evidence, screening, extraction, ROB, quality, synthesis, writing up, dissemination

What evidence?

• Shokraneh & Adams (2018) - SR on PPI in SRs

• CINAHL, the Cochrane Library, Embase, HMIC, MEDLINE (31 January 2018)

• 8 reports

• All steps of SRs, including writing the protocol, identifying outcomes, searching and screening, critical appraisal, interpreting results for dissemination and writing the final report.

• Conclusions: PPI for systematic reviews adds value in all steps including identification outcomes step.

FAQs

• How do I meet people to involve in my review?

• How do I manage meetings with the public and

• researchers?

• How do I manage the frequency and content of

• written communications with the public?

• How do I not over burdening the public members of the team?

• Will they know about SRs?

• What training do I need to provide?

• Should I pay people and if so what?

Respite care and short breaks for

young adults with complex

healthcare needs due to a life-limiting

condition and/or complex physical

disability: Mixed-method systematic

review and conceptual framework

development

This project is funded by the NIHR HS&DR Programme (project number 16/115/17)

The views and opinions expressed therein are those of the authors and do not necessarily reflect

those of the HS&DR Programme, NIHR, NHS or the Department of Health.

The beginning…

• Three parents and three young adults with CHCNs

• Supported funding application to HSDR:

– Identify and prioritising review questions,

– Identify outcomes,

– Wrote lay summary of the application,

– Advised on the PPI Advisory Group roles and funding level requested,

– Reviewed protocol,

– Supported our response to reviewers (two rounds)

Setting up

• Lead contact for support and involvement

• PAG Booklet – roles, information, payments

• Flyers for recruitment – national groups, social media, current PPI contacts

• Website

PPI Advisory Group (PAG)

PPI Advisory Group (PAG)

PPI Advisory Group (PAG)

• Agreed goals, roles, payments, etc.

• Three PAG and steering group mtg (18 month)

• Bi-monthly contact with most PAG members

Our current members:

• 4 young adults

• 3 parents

• 1 bereaved parent

• 1 family member (older sibling)

Challenges

• Understanding what a SR is – PAG booklet

• Group contact – skype, face-to-face, TC –mainly individual contact – phone, email

• Long timeline - a range of activities

– SR specific tasks – questions, search terms

– Raising awareness/dissemination tasks:

• creation of a video, animation, content for the website

Refine questions

Refine search terms and sources, Put out the call for

evidence, Develop media

Validation of the knowledge map

Interpretation and synthesis of findings for each stream

Interpretation and overall synthesis

Creation and validation of the conceptual framework ,

dissemination

Thoughts for your review

• Be clear about the purpose of involving members of the public before you get them involved.

• Be clear about your expectations of their role and about what you want them to do – job description

• Realistic timeline for study.

• Consider support and training needs.

• Ensure that members of the public have written material to refer to about the process of the review –clear language, no jargon.

Thoughts for your review?

• Lead contact for public members for queries/support.

• Consider a ‘buddy’ system for support and more than one person as representative in meetings.

• Provide feedback to the people to let them know how their contribution has helped – or be able to explain where you haven’t included their views.

• Involve everyone in dissemination

• Report PPI using the GRIPP checklist (Guidance for Reporting Involvement of Patients and the Public)

GRIPP

PPI Support

• Speak to experienced PPI researchers, not just SR

• Research Design Service (NIHR)

• Previous PPI in SRs

• INVOLVE guidance