Patient engagement in research: a systematic review

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

Background

A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?

Methods

We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach.

Results

We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement.

Conclusions

Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

Related collections

Most cited references 16

Record: found
Abstract: found
Article: found

Is Open Access

RAMESES publication standards: meta-narrative reviews

Geoff Wong, Trish Greenhalgh, Gill Westhorp … (2013)

Background Meta-narrative review is one of an emerging menu of new approaches to qualitative and mixed-method systematic review. A meta-narrative review seeks to illuminate a heterogeneous topic area by highlighting the contrasting and complementary ways in which researchers have studied the same or a similar topic. No previous publication standards exist for the reporting of meta-narrative reviews. This publication standard was developed as part of the RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) project. The project's aim is to produce preliminary publication standards for meta-narrative reviews. Methods We (a) collated and summarized existing literature on the principles of good practice in meta-narrative reviews; (b) considered the extent to which these principles had been followed by published reviews, thereby identifying how rigor may be lost and how existing methods could be improved; (c) used a three-round online Delphi method with an interdisciplinary panel of national and international experts in evidence synthesis, meta-narrative reviews, policy and/or publishing to produce and iteratively refine a draft set of methodological steps and publication standards; (d) provided real-time support to ongoing meta-narrative reviews and the open-access RAMESES online discussion list so as to capture problems and questions as they arose; and (e) synthesized expert input, evidence review and real-time problem analysis into a definitive set of standards. Results We identified nine published meta-narrative reviews, provided real-time support to four ongoing reviews and captured questions raised in the RAMESES discussion list. Through analysis and discussion within the project team, we summarized the published literature, and common questions and challenges into briefing materials for the Delphi panel, comprising 33 members. Within three rounds this panel had reached consensus on 20 key publication standards, with an overall response rate of 90%. Conclusion This project used multiple sources to draw together evidence and expertise in meta-narrative reviews. For each item we have included an explanation for why it is important and guidance on how it might be reported. Meta-narrative review is a relatively new method for evidence synthesis and as experience and methodological developments occur, we anticipate that these standards will evolve to reflect further theoretical and methodological developments. We hope that these standards will act as a resource that will contribute to improving the reporting of meta-narrative reviews. To encourage dissemination of the RAMESES publication standards, this article is co-published in the Journal of Advanced Nursing and is freely accessible on Wiley Online Library (http://www.wileyonlinelibrary.com/journal/jan). Please see related articles http://www.biomedcentral.com/1741-7015/11/21 and http://www.biomedcentral.com/1741-7015/11/22

0 comments Cited 167 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care.

Rona Campbell, Pandora Pound, Catherine Pope … (2003)

Interest in how qualitative health research might be used more widely to inform health policy and medical practice is growing. Synthesising findings from individual qualitative studies may be one method but application of conventional systematic review methodology to qualitative research presents significant philosophical and practical challenges. The aim here was to examine the feasibility of synthesising qualitative research using qualitative methodology including a formative evaluation of criteria for assessing the research to be synthesised. Ten qualitative studies of adult patients' perspectives of diabetes were purposefully selected and questions proposed by the critical appraisal skills programme (CASP) adapted and used to assess papers prior to synthesis. Each study was reviewed independently by two experienced social scientists. The level of agreement between reviewers was determined. Three papers were excluded: one because it turned out not to be qualitative research, one because the quality of the empirical work was poor and one because the qualitative findings reported were also recorded in another paper already included. The synthesis, which had two distinct elements, was conducted using the meta-ethnographic method. Firstly, four papers containing typologies of patient responses to diabetes were synthesised. Secondly, six key concepts were identified from all seven papers as being important in enabling a person with diabetes to achieve a balance in their lives and to attain a sense of well-being and control. These included: time and experience, trust in self, a less subservient approach to care providers, strategic non-compliance with medication, effective support from care providers and an acknowledgement that diabetes is serious. None of the studies included in the synthesis referenced any of the early papers nor did they appear to have taken account of or built upon previous findings. This evaluation confirmed that meta-ethnography can lead to a synthesis and extension of qualitative research in a defined field of study. In addition, from it a practical method of qualitative research assessment evolved. This process is promising but requires further testing and evaluation before it could be recommended for more widespread adoption.

0 comments Cited 120 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.

Elin Strømme Nilsen, Hilde Tinderholdt Myrhaug, Marit Johansen … (2006)

The importance of consumer involvement in health care is widely recognised. Consumers can be involved in developing healthcare policy and research, clinical practice guidelines and patient information material, through consultations to elicit their views or through collaborative processes. Consultations can be single events, or repeated events, large or small scale. They can involve individuals or groups of consumers to allow debate; the groups may be convened especially for the consultation or be established consumer organisations. They can be organised in different forums and through different media. We anticipated finding few comparative evaluations that reliably evaluated the effects of consumer involvement. To assess the effects of consumer involvement and compare different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material. We searched: the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1). We scanned reference lists from relevant articles and contacted authors. Randomised and quasi-randomised trials, interrupted time series analyses, and controlled before-after studies assessing methods for involving consumers in developing healthcare policy and research, clinical practice guidelines or patient information material. The outcome measures were: participation or response rates of consumers; consumer views elicited; consumer influence on decisions, healthcare outcomes or resource utilisation; consumers' or professionals' satisfaction with the involvement process or resulting products; impact on the participating consumers; costs. Two review authors independently selected trials for inclusion, assessed their quality and extracted data. We contacted study authors for clarification and to seek missing data. We presented results in a narrative summary and pooled data as appropriate. Five randomised controlled trials of moderate or low methodological quality involving 1031 participants were included. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is very low quality evidence of telephone discussions and face-to-face group meetings engaging consumers better than mailed surveys in order to set priorities for community health goals, and resulting in different priorities being set for these goals. There is little evidence from comparative studies of the effects of consumer involvement in healthcare decisions at the population level. The studies included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of consulting consumers to inform these decisions.

0 comments Cited 116 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Journal

Journal ID (nlm-ta): BMC Health Serv Res

Journal ID (iso-abbrev): BMC Health Serv Res

Title: BMC Health Services Research

Publisher: BioMed Central

ISSN (Electronic): 1472-6963

Publication date Collection: 2014

Publication date (Electronic): 26 February 2014

Volume: 14

Page: 89

Affiliations

[1 ]Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA

[2 ]Unidad de Conocimiento y Evidencia, Lima, Perú

[3 ]Division of Preventive, Occupational and Aerospace Medicine, Mayo Clinic, Rochester, MN, USA

[4 ]Division of Endocrinology, Diabetes, Metabolism, Nutrition, Mayo Clinic, Rochester, MN, USA

[5 ]Center for the Science of Healthcare Delivery, Mayo Clinic, Rochester, Minnesota, USA

[6 ]Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA

[7 ]Mayo Clinic Libraries, Mayo Clinic, Rochester, MN, USA

[8 ]Department of Internal Medicine, University of Missouri, Columbia, MO, USA

Article

Publisher ID: 1472-6963-14-89

DOI: 10.1186/1472-6963-14-89

PMC ID: 3938901

PubMed ID: 24568690

SO-VID: e341d1f3-644c-4aad-8a6a-e856b6aac5f2

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Patient engagement in research: a systematic review

Read this article at

Abstract

Background

Methods

Results

Conclusions

Related collections

International Journal of Applied Technology in Medical Sciences

Most cited references 16

RAMESES publication standards: meta-narrative reviews

Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care.

Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.

Author and article information

Journal

Affiliations

Article

History

Categories

Comments

Comment on this article

Similar content 340

Cited by 623

Most referenced authors 630