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 a need 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.
Figure 1: The Consensus Delphi
Exercise
Delphi Phase 1
Participants will be asked to rate the GRIPP items on a
likert scale from 1= not at all important to 10=very
important.
‘Free text’ comment sections are available after each item,
where you may suggest refinements, reiterations or
suggest additional items.
Participants will be asked to rate the items again, but this
time they can review the group scores for each item and
any anonymised free text provided in the free comment
section.
Delphi Phase 2
Participants will be asked to rate any additional items
added from Phase 1 of the survey
Items accepted for inclusion from Phase 1 and Phase 2,
and any additional feedback will be reported to participants.
Delphi Phase 3
Participants will be asked to rate items that have been
suggested by respondents in Phase 2.
Participants will be asked to rate items from phase 1 and
phase 2 where inclusion status remains uncertain and
needs a third round of scores to make a decision
Consensus meeting (15-20 experts)
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, (13534505)
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.
Classification/Diagnostic.
Methods of Formal Consensus in
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
2013;158:200-207
Annals
of
Internal
MedicineAnn
Intern
Med.