DEVELOPING CONSENSUS ON THE REPORTING OF
PATIENT AND PUBLIC INVOLVEMENT
Sophie Staniszewska & Jo Brett (RCNRI, University of Warwick)
Iveta Simera (EQUATOR, University of Oxford)
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), 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 limited or incomplete
information provided. There is a need to enhance the quality and consistency of
this reporting in order to develop our understanding of what types of PPI work, for
whom, why and in what context.
We have made some important steps in the right direction. GRIPP (Guidance for
the reporting of Patient and Public Involvement) was developed to identify the
main elements of good reporting for PPI, based on a systematic reviews of the PPI
evidence base (Staniszewska 2011, Brett et al 2012, Mockford et al 2011). We are
now moving to the next stage, using GRIPP as the basis for developing
consensus, or agreement on which items (or aspects of PPI) are essential to
report, drawing on the expertise and experiences of researchers, service users,
clinicians, funders and commissioners. This process of consensus strengthens our
understanding of what should be reported.
There is currently no consensus based guidance for researchers reporting patient
and public involvement. It is therefore timely to develop such guidance to assist
authors in writing papers, editors and peer reviewers in reviewing manuscripts for
publication, and readers in critically appraising published articles. We will be
following EQUATOR methodology to ensure GRIPP 2 is developed using the
same rigorous approach.
Aim: To develop GRIPP 2, a reporting guideline for PPI in health and social care
research, through expert consensus to improve the quality and transparency for
reporting of PPI in health and social care research.
Methods: The study follows standard EQUATOR methodology in the development of
reporting guidance (Moher 2010, Nair 2011, Chan 2013). Your involvement will be in a
three-round Delphi study that will be conducted with participants with experience in the
PPI field using an online survey between October and February 2013.
Selection of preliminary items for the guidelines: Preliminary items (aspects of PPI
reporting) for the Delphi survey will include those in GRIPP 1 and will be grouped using
existing groupings which follows the standard way in which a paper is organised:
General information, Introduction, Methods, Administration, Analysis and Ethical
considerations, Reporting and Dissemination, Other.
Each item will include a heading and a description. The wording in the first survey in
phase 1 of the Delphi is broad, and our aim is to narrow down the number of items
included in the final guidelines
We have ethical approval from the Humanities and Social Sciences Research Ethics
Committee, the University of Warwick (HSSREC 28/11-12 (c))
Participants’ confidentiality will be ensured. Individual responses will be known only
to the researcher and only amalgamated results will be publically available .
The Delphi process is reported in figure 1 below, and described under figure 1.
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 compare their previous rating (please save
a copy of your first survey), and group summary ratings
and all anonymised free text.
Delphi Phase 2
Participants will be asked to re-rate the items and respond
to the existing comments, if desired.
Participants will be asked to rate any additional items
added from Phase 1 of the Delphi survey
Items reaching consensus (from Phase 1 and Phase 2),
and any additional feedback will be reported to participants.
Participants will be asked to rate items that have been
suggested by respondents in Phase 2.
Delphi Phase 3
Participants will be asked to rate items requiring a third
round of feedback: Those rated of moderate importance
(median 6 and 7) after two phases, will be rated again.
Items where comments from respondents have suggested
that single items contained multiple concepts of differing
importance will be delineated. Respondents will be asked
to rate each sub item separately.
Consensus meeting (15-20 experts)
Phase 1: 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: 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, panellists will have their previous rating, and will be presented with
group summary ratings (medians, interquartile ranges [IQRs], and frequency
distributions) and all anonymised free text comments from round 1.
Phase 3: In phase 3 results of items reaching consensus (from round 1 and round 2),
and any additional feedback will be reported. Part 3 of phase 3 will include items
introduced in Round 2. Part 4 & Part 5 of this phase will include items requiring a third
round of feedback as they have been rated moderate importance (6≤ median ≥7) after
the first two rounds of this Delphi survey. These parts will also include single items
that may have had multiple concepts of differing importance identified.
Post Delphi: Generate a list of items The three round Delphi consensus exercise
will be used to generate the items 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.
If you are not sure of the stages, please email:
Jo Brett: J.Brett@warwick.ac.uk
Sophie Staniszewska: Sophie Staniszewska@warwick.ac.uk
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.
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