Public involvement in the systematic review process in health and social care: A narrative review of case examples

Boote, Jonathan; Baird, Wendy; Sutton, Anthea

doi:10.1016/j.healthpol.2011.05.002

Cited by 95 publications

(146 citation statements)

References 25 publications

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“…While we may never be able to adequately control for every contextual nuance, a more solid understanding of the goals of patient engagement, some level of consensus on measurable impacts and development and validation of measures Legitimacy [26,27] and credibility [27] Accountability [26,27,38,61,66] Public trust in public institutions [26,27] Majority of patients and researchers felt that involvement improved credibility [46] None reported…”

Section: Future Perspectivementioning

confidence: 99%

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Evaluating patient and stakeholder engagement in research: moving from theory to practice

2015

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Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value -or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes. Keywords: comparative effectiveness research • evaluation • patient engagement • patient-centered outcomes research • PCOR • review • stakeholder engagement BackgroundEngagement of patients and other healthcare stakeholders (herein, stakeholder partners) is increasingly recognized as essential to patient-centered comparative effectiveness research (CER), which is intended to answer questions of importance to patients and their caregivers [1]. Often described as researchers doing research with patients, rather than for, at or to them [2][3][4], patient-engaged research implies a level of involvement that extends beyond the role of research subject [5]. This shift has been fueled in part by the 2010 creation of the Patient-Centered Outcomes Research Institute (PCORI) by Congress with the passage of the Patient Protection and Affordable Care Act. PCORI is committed to producing and promoting high-integrity CER that is 'guided by patients, caregivers, and the broader healthcare community.' [6].The PCORI Methodology Report states that patient engagement can include: defining topics and formulating study questions, identifying a study population and choosing interventions, comparators and outcomes, developing optimal strategies for recruitment and retention of study participants, conducting a study and analyzing results and disseminating research findings into clinical practice [7]. Generally, the value of engaging stakeholder partners in research is that it can help reorient and improve the research enterprise, reduce clinical uncertainty and speed adoption of meaningful findings that hold great promise with the ultimate goal of improving patients' care experience, decision-making and health outcomes [6].Despite the growing interest in and demand for research that engages stakeholder partners -or, 'research done differently,' [8] there is limited evidence in the published literature to demonstrate the value -or return on investment -of this engagement. This evidence gap is reflective of a general lack of evaluation of research engagement activities. In fact, the majority of published research with a stakeholder partner engagement dimension does not include an evaluation component [9][10][11]...

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Section: Future Perspectivementioning

confidence: 99%

“…Fairness [26][27][28]50,66] Respect and trust between researchers and engaged stakeholders [9,26,27,68] Development of trust between researchers and service users [38] None reported…”

Section: Moral Obligationmentioning

confidence: 99%

Evaluating patient and stakeholder engagement in research: moving from theory to practice

2015

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“…The epistemological argument states that service users have direct knowledge of their own illness, disease or health condition that can be of benefit to researchers, who may not have first-hand experience themselves of the illness, disease or health condition that they are researching. 161 DUAG members were therefore expecting that their experiential knowledge would add value to the DAFNE research programme. Although this personal experiential knowledge was seen to be important by the researchers interviewed in this evaluation, there were concerns expressed that the DUAG members actively involved in the research programme were not representative of the wider community of DAFNE graduates and that more should have been done to enable DUAG members to engage with their wider community either through the DUG or through DAFNE online.…”

Section: Dafne Users Action Group Members' Motivations For Getting Inmentioning

confidence: 99%

“…The issue of continuity problems with regard to users attending research meetings has recently been highlighted in reviews of the literature on user involvement in clinical trials 154 and user involvement in systematic reviews. 161 Reflections on the training and support provided to DAFNE Users Action Group members…”

Section: 154mentioning

confidence: 99%

Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

Heller

Lawton

Amiel

et al. 2014

Programme Grants for Applied Research

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Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

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“…Patient and public involvement (PPI) has had a complex and sometimes difficult relationship within the health research sector but has emerged as a focus of considerable attention for researchers working at the intersection of health services research and the social sciences and has spawned a significant body of work (Farrell, 2004;Martin, 2008;Staley, 2009;Boote et al, 2011;Brett et al, 2014;author a1;author a2). Such is the strategic commitment to PPI in the UK that the major health research funding body (National Institute for Health Research, NIHR) supports a national advisory group -INVOLVE -dedicated to supporting PPI in health and social care research (see invo.org.uk).…”

Section: Introductionmentioning

confidence: 99%

Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas

2018

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Patient and public involvement (PPI) has emerged as a key consideration for organisations delivering health research and has spawned a burgeoning literature in the health and social sciences. The literature makes clear that PPI in health research encompasses a heterogeneous set of practices with levels of participation and involvement ranging from relatively minimal contributions to research processes to actively driving the research agenda. In this paper, we draw on the work of JurgenHabermas to explore the ways in which PPI was accomplished in a cancer research setting in England. Drawing on ethnographic data with PPI participants and professional researchers, we describe the ways in which the life-world experiences of PPI participants were shaped by the health research system. We argue that PPI in this setting is less about exploring differences with regard to a plurality of expertise and more about simply watching or supporting the professional researchers at work. Keywords (up to 8):Patient and public involvement; Habermas; system and life-world; cancer research network.

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Public involvement in the systematic review process in health and social care: A narrative review of case examples

Cited by 95 publications

References 25 publications

Evaluating patient and stakeholder engagement in research: moving from theory to practice

Evaluating patient and stakeholder engagement in research: moving from theory to practice

Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas

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