GRIPP2 reporting checklists: tools to improve reporting of patient & public involvement in research

[Dolphin]

Free full text: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-017-0062-2

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

• S. StaniszewskaEmail author,
• J. Brett,
• I. Simera,
• K. Seers,
• C. Mockford,
• S. Goodlad,
• D. G. Altman,
• D. Moher,
• R. Barber,
• S. Denegri,
• A. Entwistle,
• P. Littlejohns,
• C. Morris,
• R. Suleman,
• V. Thomas and
• C. Tysall

Research Involvement and Engagement20173:13
https://doi.org/10.1186/s40900-017-0062-2

© The Author(s). 2017

Received: 5 July 2017

Accepted: 19 July 2017

Published: 2 August 2017

Open Peer Review reports

Abstract
Background
While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.

Objective
To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2.

Methods
The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.

Results
One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus.

Conclusions
GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.

 

[Dolphin]

Plain English summary

Patient and public involvement in health and social care research is increasingly important, helping to ensure that the research focuses on issues relevant to patients and the public. A wide variety of research papers with public involvement has been published over the past decade, yet many of these papers give little information about how members of the public were involved and what the result of this involvement was. This means that learning from these studies is limited. Working closely with patients and the public, we have developed guidance for people writing about public involvement to suggest what details to report. We carried out a thorough assessment of studies in this area and used a Delphi survey to ask 143 people who are knowledgeable about this topic for their opinions about what should be included in the guidance. The Delphi method consists of a series of questionnaires over a specific time period to find out whether there is agreement among experts about the topic under discussion. We found strong agreement on a number of issues to include in the guidance from the 112 people who completed three rounds of Delphi questionnaires. We also held a one day meeting to find out whether any additional issues for which we hadn’t reached agreement should be included in the guidance.

As a result of this three stage project, we developed two versions of the guidance, a short version of the guidance (GRIPP2-SF), which can be used when reporting public involvement in any study, and a long version (GRIPP2-LF) to use when the study is mainly about public involvement in research. Our aim in developing this guidance is to promote good quality reporting of public involvement, to inform good practice and create effective public involvement.

 

[Dolphin]

The lead author has been involved in at least two ME/CFS studies:

http://forums.phoenixrising.me/inde...me-measures-used-in-cfs-me.10592/#post-186802

Qual Life Res. 2011 May 18. [Epub ahead of print]

Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.

Haywood KL, Staniszewska S, Chapman S.

Source: Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, CV4 7AL, UK, k.l.haywood@warwick.ac.uk.

Abstract
PURPOSE: To review the quality and acceptability of condition-specific, domain-specific and generic multi-item patient-reported outcome measures (PROMs) used in the assessment of adults with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

METHODS: Systematic literature searches were made to identify PROMs. Quality and acceptability was assessed against an appraisal framework, which captured evidence of both the thoroughness and results of evaluations: evidence of measurement (reliability, validity, responsiveness, interpretability, data quality/precision) and practical properties (feasibility, patient acceptability), and the extent of active patient involvement was sought.

RESULTS: A total of 11 CFS/ME-specific, 55 domain-specific and 11 generic measures were reviewed. With the exception of the generic SF-36, all measures had mostly limited evidence of measurement and/or practical properties. Patient involvement was poorly reported and often cursory.

CONCLUSIONS: The quality and acceptability of reviewed PROMs is limited, and recommendations for patient-reported assessment are difficult. Significant methodological and quality issues in PROM development/evaluation were identified by the appraisal framework, which must be addressed in future research. Clear discrepancies exist between what is measured in research and how patients define their experience of CFS/ME. Future PROM development/evaluation must seek to involve patients more collaboratively to measure outcomes of importance using relevant and credible methods of assessment.

PMID:21590511[PubMed - as supplied by publisher]

http://forums.phoenixrising.me/inde...ng-a-patient-evidence-base.28441/#post-432964

Health Expect. 2010 Sep;13(3):312-22. doi: 10.1111/j.1369-7625.2010.00590.x. Epub 2010 Jun 23.

The PRIME project: developing a patient evidence-base.

Staniszewska S1, Crowe S, Badenoch D, Edwards C, Savage J, Norman W.

Author information

Abstract*

BACKGROUND:

The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres.

Much less emphasis is placed on the patient's contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.

AIM:

This article proposes a concept of patient-based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized.

The PRIME project developed a patient evidence-base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).

DESIGN:

Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.

RESULTS:

PRIME has developed a patient evidence-base which has an extensive array of experiences data to provide researchers, clinicians and others with an in-depth insight into the lived experience of ME/CFS that can be used and analysed.

Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient-focused research agenda in ME/CFS.

CONCLUSIONS:

While patient-based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient-based evidence can be considered alongside clinical and economic evidence.

PMID: 20579119 [PubMed - indexed for MEDLINE

 

[Esther12]

The more I understand what sort of arguments seem to appeal to those working in medical research, the more I think that reference to these sorts of guidelines could be useful for us making progress. I have to admit that I'm not enthusiastic about slogging through all these guidelines though.