Evaluating the impact of patient and public involvement initiatives on UK health services: a systematic review

Author(s):  
Norma Daykin ◽  
David Evans ◽  
Christina Petsoulas ◽  
Adrian Sayers
BMJ ◽  
2018 ◽  
pp. k4738 ◽  
Author(s):  
Joanna C Crocker ◽  
Ignacio Ricci-Cabello ◽  
Adwoa Parker ◽  
Jennifer A Hirst ◽  
Alan Chant ◽  
...  

AbstractObjectiveTo investigate the impact of patient and public involvement (PPI) on rates of enrolment and retention in clinical trials and explore how this varies with the context and nature of PPI.DesignSystematic review and meta-analysis.Data sourcesTen electronic databases, including Medline, INVOLVE Evidence Library, and clinical trial registries.Eligibility criteriaExperimental and observational studies quantitatively evaluating the impact of a PPI intervention, compared with no intervention or non-PPI intervention(s), on participant enrolment and/or retention rates in a clinical trial or trials. PPI interventions could include additional non-PPI components inseparable from the PPI (for example, other stakeholder involvement).Data extraction and analysisTwo independent reviewers extracted data on enrolment and retention rates, as well as on the context and characteristics of PPI intervention, and assessed risk of bias. Random effects meta-analyses were used to determine the average effect of PPI interventions on enrolment and retention in clinical trials: main analysis including randomised studies only, secondary analysis adding non-randomised studies, and several exploratory subgroup and sensitivity analyses.Results26 studies were included in the review; 19 were eligible for enrolment meta-analysis and five for retention meta-analysis. Various PPI interventions were identified with different degrees of involvement, different numbers and types of people involved, and input at different stages of the trial process. On average, PPI interventions modestly but significantly increased the odds of participant enrolment in the main analysis (odds ratio 1.16, 95% confidence interval and prediction interval 1.01 to 1.34). Non-PPI components of interventions may have contributed to this effect. In exploratory subgroup analyses, the involvement of people with lived experience of the condition under study was significantly associated with improved enrolment (odds ratio 3.14v1.07; P=0.02). The findings for retention were inconclusive owing to the paucity of eligible studies (odds ratio 1.16, 95% confidence interval 0.33 to 4.14), for main analysis).ConclusionsThese findings add weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study. Further research is needed to assess which types of PPI work best in particular contexts, the cost effectiveness of PPI, the impact of PPI at earlier stages of trial design, and the impact of PPI interventions specifically targeting retention.Systematic review registrationPROSPERO CRD42016043808.


2012 ◽  
Vol 17 (5) ◽  
pp. 637-650 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  

2014 ◽  
Vol 7 (4) ◽  
pp. 387-395 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026514 ◽  
Author(s):  
Natalie Cook ◽  
Najma Siddiqi ◽  
Maureen Twiddy ◽  
Richard Kenyon

ObjectivesPatient and public involvement (PPI) is argued to lead to higher quality health research, which is more relatable to and helps empower the public. We synthesised the evidence to look for examples of PPI in health research in low/middle-income countries (LMICs), looking at levels of involvement and impact. Additionally, we considered the impact of who was undertaking the research on the level of involvement and reported impact.DesignSystematic review.Data sourcesEMBASE, Medline and PsychINFO, along with hand-searching references, grey literature, Google search and expert advice.Eligibility criteriaAny health research with evidence of patient or public involvement, with no language restrictions dated from 1978 to 1 Dec 2017.Data extraction and synthesisData relating to stage and level of involvement, as well as impact, were extracted by one researcher (NC), and a coding framework was developed using an inductive approach to examine the impact of PPI on research. Extracted data were then independently coded by a second lay researcher (RK) to validate the data being collected. Discrepancies were referred to a third independent reviewer (MT) for review and consensus reached.ResultsSixty-two studies met the inclusion criteria. The review revealed the most common stage for PPI was in research planning, and the most common level of involvement was collaboration. Most studies did not provide evidence of effectiveness or elaborate on the impact of PPI, and they tended to report impact from the researcher’s perspective. Where impact was mentioned, this generally related to increased relevance to the community, empowerment of participants and alterations in study design.ConclusionsThe literature describing approaches to and impact of PPI on LMIC health research is sparse. As PPI is essential to conducting high-quality research, it should be fully reported and evaluated at the end of the research project.


2019 ◽  
Author(s):  
Shoba Dawson ◽  
Angela Ruddock ◽  
Veena Parmar ◽  
Rebecca Morris ◽  
Sudeh Cheraghi-sohi ◽  
...  

Abstract Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This paper aims to highlight how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people in doctoral research specifically, but also health services research generally.Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle.Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience.Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.


2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Foluso Ishola ◽  
U. Vivian Ukah ◽  
Arijit Nandi

Abstract Background A country’s abortion law is a key component in determining the enabling environment for safe abortion. While restrictive abortion laws still prevail in most low- and middle-income countries (LMICs), many countries have reformed their abortion laws, with the majority of them moving away from an absolute ban. However, the implications of these reforms on women’s access to and use of health services, as well as their health outcomes, is uncertain. First, there are methodological challenges to the evaluation of abortion laws, since these changes are not exogenous. Second, extant evaluations may be limited in terms of their generalizability, given variation in reforms across the abortion legality spectrum and differences in levels of implementation and enforcement cross-nationally. This systematic review aims to address this gap. Our aim is to systematically collect, evaluate, and synthesize empirical research evidence concerning the impact of abortion law reforms on women’s health services and outcomes in LMICs. Methods We will conduct a systematic review of the peer-reviewed literature on changes in abortion laws and women’s health services and outcomes in LMICs. We will search Medline, Embase, CINAHL, and Web of Science databases, as well as grey literature and reference lists of included studies for further relevant literature. As our goal is to draw inference on the impact of abortion law reforms, we will include quasi-experimental studies examining the impact of change in abortion laws on at least one of our outcomes of interest. We will assess the methodological quality of studies using the quasi-experimental study designs series checklist. Due to anticipated heterogeneity in policy changes, outcomes, and study designs, we will synthesize results through a narrative description. Discussion This review will systematically appraise and synthesize the research evidence on the impact of abortion law reforms on women’s health services and outcomes in LMICs. We will examine the effect of legislative reforms and investigate the conditions that might contribute to heterogeneous effects, including whether specific groups of women are differentially affected by abortion law reforms. We will discuss gaps and future directions for research. Findings from this review could provide evidence on emerging strategies to influence policy reforms, implement abortion services and scale up accessibility. Systematic review registration PROSPERO CRD42019126927


BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e047235
Author(s):  
Iona Pearson ◽  
Sue Blackwell ◽  
Rebecca Fish ◽  
Sarah Daniels ◽  
Malcolm West ◽  
...  

IntroductionPrehabilitation in colorectal surgery is evolving and may minimise postoperative morbidity and mortality. With many different healthcare professionals contributing to the prehabilitation literature, there is significant variation in reported primary endpoints that restricts comparison. In addition, there has been limited work on patient-related outcome measures suggesting that patients with colorectal cancer needs and issues are being overlooked. The Defining Standards in Colorectal Optimisation Study aims to achieve international consensus from all stakeholders on key standards to provide a framework for reporting future prehabilitation research.Methods and analysisA systematic review will identify key standards reported in trials of prehabilitation in colorectal surgery. Standards that are important to patients will be identified by a patient and public involvement (PPI) event. The longlist of standards generated from the systematic review and PPI event will be used to develop a three-round online Delphi process. This will engage all stakeholders (healthcare professionals and patients) both nationally and internationally. The results of the Delphi will be followed by a face-to-face interactive consensus meeting that will define the final standards for prehabilitation for elective colorectal surgery.Ethics and disseminationThe University of Glasgow College of Medical, Veterinary and Life Sciences Ethics Committee has approved this protocol, which is registered as a study (200190120) with the Core Outcome Measures in Effectiveness Trials Initiative. Publication of the standards developed by all stakeholders will increase the potential for comparative research that advances understanding of the clinical application of prehabilitation.PROSPERO registration numberCRD42019120381.


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