Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment

Vale, Claire; Tierney, Jayne; Spera, N.; Whelan, Andrea; Nightingale, Alison; Hanley, Bec

doi:10.1186/2046-4053-1-23

Cited by 26 publications

(111 citation statements)

References 7 publications

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“…Despite this perceived importance of assessing the return on patient engagement, little is known about “what” to evaluate, and even less about “how.” A number of researchers have tried to assess how patient engagement makes a difference . Although there is no standardized way to assess the impact of patient engagement, very similar benefits, costs and challenges are reported in literature reviews .…”

Section: Introductionmentioning

confidence: 99%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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Background Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis Data were extracted from 91 publications, coded and thematically analysed. Main results A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

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Section: Introductionmentioning

confidence: 99%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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“…Involving service users and the wider public in systematic reviews of research is even more important, because systematic reviews provide short cuts to critically appraised evidence for policy decisions that affect people's lives (Rees and Oliver, 2007). Case examples where users have been involved in systematic reviews have helped identify challenges and facilitate strategies to overcome them (Boote et al, 2015;Vale et al, 2012). Boote et al described reviewers working with users on advisory groups and in panels, as well as through a virtual forum or using Delphi processes via email (Boote et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews

Oliver

Rees²,

Brady

et al. 2015

Res. Syn. Meth.

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BackgroundArguments supporting the involvement of users in research have even more weight when involving the public in systematic reviews of research. We aimed to explore the potential for public involvement in systematic reviews of observational and qualitative studies.MethodsTwo consultative workshops were carried out with a group of young people (YP) aged 12–17 years to examine two ongoing reviews about obesity: one about children's views and one on the link between obesity and educational attainment. YP were invited to comment on the credibility of themes, to propose elements of interventions, to suggest links between educational attainment and obesity and to comment on their plausibility.ResultsResearchers had more confidence in review findings, after checking that themes identified as important by YP were emphasised appropriately. Researchers were able to use factors linking obesity and attainment identified as important by YP to identify limitations in the scope of extant research.ConclusionConsultative workshops helped researchers draw on the perspectives of YP when interpreting and reflecting upon two systematic reviews. Involving users in judging synthesis credibility and identifying concepts was easier than involving them in interpreting findings. Involvement activities for reviews should be designed with review stage, purpose and group in mind. © 2015 The Authors. Research Synthesis Methods published by John Wiley & Sons, Ltd.

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“…We carried out two structured surveys to evaluate the PPI within PROUD; one of participant and community representatives involved in the PROUD study, and the other of researchers from the PROUD team. Both surveys were developed by two of the team members (MG and BH), drawing on a previous survey undertaken within the Medical Research Council Clinical Trials Unit at University College London (MRC CTU at UCL) [15]. They contained a mixture of open and closed questions designed to capture both quantitative and qualitative information on the process and impact of the involvement.…”

Section: Survey Developmentmentioning

confidence: 99%

“…Evidence of the impact of involvement in health research has begun to emerge in the literature [9,15,[17][18][19][20]. Positive impacts include a sense of improved quality, appropriateness, and relevance of research; improving the research question, study design, participant information, recruitment strategies, and interpretation and communication of the results.…”

Section: Contextmentioning

confidence: 99%

“PROUD to have been involved”: an evaluation of participant and community involvement in the PROUD HIV prevention trial

et al. 2020

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Background: The PROUD trial, a HIV prevention trial in men who have sex with men and trans women, set out to involve community representatives and trial participants in several ways. PROUD also aimed to evaluate participant involvement, to learn lessons and make recommendations for future clinical trials. Methods: Two structured surveys, one of participant and community representatives involved in the PROUD study, and the other of researchers from the PROUD team, were carried out in 2017. The results from the surveys were reviewed quantitatively and qualitatively, and themes emerging from the data identified and synthesised. Results: Survey invitations were sent to 88 involved participants, 11 community representatives and 10 researchers. The overall response rate was 55% (60/109). Overall, participants were younger than community representatives, and the majority were from Greater London. As expected, participants were predominantly involved in participant involvement meetings and community representatives in management committees. Participants and community representatives cited different motivations for getting involved in PROUD. Overall, participants were positive about their involvement; only two participants rated their experience unfavourably. Community representatives were also broadly positive. Most participants and all community representatives felt their involvement made a difference to the trial, themselves and / or the organisations they represented. However, some participant answers reflected the impact of participation in the trial rather than involvement in PPI activities. Researchers felt that PPI had positive impact across the entire trial cycle. Half felt they would have liked there to have been more PPI activity in PROUD. Researchers noted some challenges and recommendations for the future, including need for adequate funding, more engagement in PPI by all researchers, the need for PPI expertise to facilitate involvement activities and training and mentoring in PPI. Conclusions: Involving clinical trial participants and wider community representatives as active partners in PPI is feasible and valuable in trials. Researchers are encouraged to consider and appropriately resource participant involvement and prospectively evaluate all PPI within their trials.

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Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment

Cited by 26 publications

References 7 publications

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews

“PROUD to have been involved”: an evaluation of participant and community involvement in the PROUD HIV prevention trial

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