scholarly journals Measuring the impact of patient and public involvement: the need for an evidence base

2008 ◽  
Vol 20 (6) ◽  
pp. 373-374 ◽  
Author(s):  
S. Staniszewska ◽  
S. Herron-Marx ◽  
C. Mockford
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
The Impact

scholarly journals Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e016948 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Iveta Simera ◽  
Kate Seers ◽  
Carole Mockford ◽  
...  
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Reporting Guidelines ◽  
Consensus Development ◽  
Face To Face ◽  
Three Phase ◽  
Health And Social Care ◽  
The Impact

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

scholarly journals Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis

BMJ ◽  
2018 ◽  
pp. k4738 ◽  
Author(s):  
Joanna C Crocker ◽  
Ignacio Ricci-Cabello ◽  
Adwoa Parker ◽  
Jennifer A Hirst ◽  
Alan Chant ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Lived Experience ◽  
Odds Ratio ◽  
Public Involvement ◽  
Meta Analysis ◽  
Patient And Public Involvement ◽  
Retention Rates ◽  
The Impact

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.

scholarly journals Person-centred medicines optimisation policy in England: an agenda for research on polypharmacy

2016 ◽  
Vol 18 (01) ◽  
pp. 24-34 ◽  
Author(s):  
Janet Heaton ◽  
Nicky Britten ◽  
Janet Krska ◽  
Joanne Reeve
Keyword(s):  
Public Involvement ◽  
Guideline Development ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Patient Experiences ◽  
Patient Perspectives ◽  
Critical Examination ◽  
Medicines Management ◽  
Health And Social Care ◽  
Medicines Optimisation

AimTo examine how patient perspectives and person-centred care values have been represented in documents on medicines optimisation policy in England.BackgroundThere has been growing support in England for a policy of medicines optimisation as a response to the rise of problematic polypharmacy. Conceptually, medicines optimisation differs from the medicines management model of prescribing in being based around the patient rather than processes and systems. This critical examination of current official and independent policy documents questions how central the patient is in them and whether relevant evidence has been utilised in their development.MethodsA documentary analysis of reports on medicines optimisation published by the Royal Pharmaceutical Society (RPS), The King’s Fund and National Institute for Health and Social Care Excellence since 2013. The analysis draws on a non-systematic review of research on patient experiences of using medicines.FindingsThe reports varied in their inclusion of patient perspectives and person-centred care values, and in the extent to which they drew on evidence from research on patients’ experiences of polypharmacy and medicines use. In the RPS report, medicines optimisation is represented as being a ‘step change’ from medicines management, in contrast to the other documents which suggest that it is facilitated by the systems and processes that comprise the latter model. Only The King’s Fund report considered evidence from qualitative studies of people’s use of medicines. However, these studies are not without their limitations.We suggest five ways in which researchers could improve this evidence base and so inform the development of future policy: by facilitating reviews of existing research; conducting studies of patient experiences of polypharmacy and multimorbidity; evaluating medicines optimisation interventions; making better use of relevant theories, concepts and tools; and improving patient and public involvement in research and in guideline development.

Involving older people in the design and conduct of clinical trials

2015 ◽  
Author(s):  
Kate Wilde ◽  
Zena Jones
Keyword(s):  
Personal Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Power Struggle ◽  
Research Strategies ◽  
Academic Knowledge ◽  
Key Points ◽  
The Uk ◽  
New Treatments ◽  
The Impact

Key points• There are strong policy drivers in the UK to involve patients not only as participants in research, but also as members of the research team.• Patient and public involvement (PPI) can have significant benefits to the patient as well as to the research project.• Many research funders require PPI explicitly described and evaluated in research proposals.• Researchers need increased awareness of PPI, guidance, and a framework of how best to implement PPI within their research strategies.• There is a risk of ‘tokenistic’ involvement of service users.• There is the potential for a power struggle between the PPI representative with personal experience and the lead researcher with academic knowledge of the condition studied.• There is a need to formally evaluate the impact of PPI on the effectiveness of research to bring new treatments to patients.

scholarly journals The impact of patient and public involvement on UK NHS health care: a systematic review

2011 ◽  
Vol 24 (1) ◽  
pp. 28-38 ◽  
Author(s):  
C. Mockford ◽  
S. Staniszewska ◽  
F. Griffiths ◽  
S. Herron-Marx
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Impact

scholarly journals Mapping the impact of patient and public involvement on health and social care research: a systematic review

2012 ◽  
Vol 17 (5) ◽  
pp. 637-650 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care ◽  
The Impact

scholarly journals Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

scholarly journals Listening to the Silence: What does unrecorded information in the Electronic Health Record tell us? Findings from a Patient and Public Involvement Event

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Julie George ◽  
Serena Luchenski ◽  
Elizabeth Williamson ◽  
Amitava Banerjee ◽  
Peter E Saunders
Keyword(s):  
Missing Data ◽  
Public Involvement ◽  
Digital Health ◽  
Transmitted Disease ◽  
Patient And Public Involvement ◽  
Extensive Literature ◽  
Sensitive Information ◽  
Framework Analysis ◽  
Electronic Health ◽  
The Impact

ABSTRACTObjectivesHandling missing information is an important methodological challenge in electronic health records research, with the reasons for missingness dictating how missing data should be handled. While there is extensive literature on methodological approaches to handling missing data, there is relatively little research with patients or clinicians investigating why information may be unrecorded in the medical records. A patient and public involvement event was held, embedded with a wider EHR event (UCL Festival of Digital Science - March 2016), to explore unrecorded information from a patient and researcher point of view with a view to developing further research in this area. ApproachCo-chaired by an academic and lay chair, members of the Farr Patient and Public Involvement Forum, academics, students and the general public attended workshop held during the Festival of Digital Health. A brief exercise was used to demonstrate the impact of missing data. Participants then worked in small facilitated groups to discuss situations where information about them (or people they knew) had not been recorded, the reasons why this information was not recorded and what the impact (or potential impact) was on the patient. A standardised data form was used by facilitators to record participants’ conversations. The data forms were summarised into Excel and a brief thematic analysis was conducted. A written evaluation of the workshop was also completed by participants and included in the analysis. ResultsThe evaluation was overwhelming positive about embedding PPI workshop within an event with a wider remit, from both researchers and patient and public representatives. Preliminary findings on reasons for missingness included change of address or provider (both general practice and secondary care), individual clinician approaches to recording data, process of computerisation of medical notes, early stages of disease not reported to GP and unwillingness to disclose more sensitive information such as sexually transmitted disease. Discussion also included reasons for misrepresented or other errors with data. Further findings from the framework analysis will be presented. ConclusionThis exploratory workshop showed that patient and public involvement events can be embedded successfully within events aimed at professionals. Preliminary findings suggest that reasons for missingness often related to features of the provider or clinician as well as the patient.

scholarly journals Innovating public engagement and patient involvement through strategic collaboration and practice

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah Holmes ◽  
Katharine Cresswell ◽  
Susannah Williams ◽  
Suzanne Parsons ◽  
Annie Keane ◽  
...  
Keyword(s):  
Professional Practice ◽  
Public Engagement ◽  
Health Research ◽  
Patient Involvement ◽  
Economies Of Scale ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Activity ◽  
North West ◽  
The Impact

Abstract Background Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

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