Developing Consensus on the Reporting of Patient and Public Involvement

Developing consensus on the reporting of patient and public involvement

Sophie Staniszewska & Jo Brett (RCNRI, University of Warwick)

Collaborators (in alphabetical order):

Altman D (EQUATOR, Universty of Oxford), Barber R (ScHARR, Sheffield University), Cook S (British Medical Journal), Denegri S (INVOLVE), Entwistle A (UNTRAP, Warwick University) Littlejohns P (Kings College London), Mockford C ((RCNRI, University of Warwick), Moher D (Ottawa Methods Centre, Canada), Morris C (Peninsula College of Medicine and Dentistry, Seers K ((RCNRI, University of Warwick) , Simera I (EQUATOR) (University of Oxford), Suleman R (UNTRAP, University of Warwick), Thomas V (NICE), Tysal C (UNTRAP, University of Warwick)

Introduction: Patient and public involvement (PPI) in health and social care research is often poorly reported in research papers, with incomplete information which limits our understanding of what studies have done. As a result, there is aneed to improve the way in which PPI is reported to provide a greater understanding of the benefits that it can bring to research and for patients and the public.

We have made some important steps in the right direction. GRIPP (Guidance for the reporting of Patient and Public Involvement) is a reporting guideline that has been developed using the current literature around PPI (Staniszewska 2011, Brett et al 2012, Mockford et al 2011). We would now like to draw on the expertise and experiences of researchers, service users, clinicians, funders and commissioners to develop agreement on which items (or aspects of PPI) are essential to be included in this reporting guideline. This will be conducted in line with the methods used by EQUATOR (Enhancing the

Quality and Transparency Of Health Research) who provide expert guidance

in the development of such reporting checklists.

Phase 1 (Oct): In phase 1, participants are asked to rate the GRIPP items from 1 to 10, or no opinion. A rating of 1 corresponds with unimportant and 10 corresponds to very important. Space will be provided against each item for free text comments to suggest refinements, reiterations or to suggest additional items.

Phase 2 (Dec): In phase 2, participants are asked to rate the GRIPP items again, including any additional items suggested in Phase 1. No changes will be made to the items apart from the addition of newly nominated items from round 1 (drafted to include heading and description).

For each item, panelists will have their previous rating, and will be presented with group summary ratings and all anonymised free text comments from round 1.

Phase 3 (Feb): In phase 3 results of items chosen for inclusion (from round 1 and round 2), and any additional feedback will be reported. Some items from round 1 and 2 may need further grading if it is unsure whether to include them or not after the first two phases of this study.

After the Delphi: Generate a list of items: The three phase survey exercise will be used to generate the items (or aspects) for the next version of the GRIPP checklist. If there are a large number of items at this stage, the items may be reduced by consensus within the research team to make them manageable for discussion at a consensus face-to-face meeting.

References:

Brett J, Staniszewska S et al (2012). Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations.19 JUL 2012.

Mockford C,Staniszewska S. Griffiths F, and Herron-Marx S (2011). The impact of patient and public involvement (PPI) on UK NHS healthcare: a systematic review. International Journal for Quality in Health Care, (1353-4505)

Staniszewska S, Brett J, Mockford C, Barber R (2011). The GRIPP checklist: Strengthening the quality and transparency of reporting for patient and public involvement in research. International Journal of Technology Assessment for Health Care, 27 (4):391-399.

Moher D, Hopewell S, Schulz KF, Montori V, Gøtzsche PC, Devereaux PJ, Elbourne D, Egger M, Altman DG, for the CONSORT Group. CONSORT 2010 Explanation and Elaboration: updated guidelines for reporting parallel group randomised trial. BMJ. 2010;340:c869

Nair R, Aggarwal R, Khanna D. Methods of Formal Consensus in Classification/Diagnostic. Criteria and Guideline Development. Arthritis Rheum 2011 41:95-105

Chan AW, Tetzlaff J; Altman D, Laupacis A, Gøtzsche P et alSPIRIT 2013 Statement: Defining Standard Protocol Items for Clinical Trials Research and Reporting Methods Annals of Internal MedicineAnn Intern Med. 2013;158:200-207