Making it clear and relevant: patients and carers add value to studies through research document reviews

2016 ◽  
Vol 20 (1) ◽  
pp. 36-43 ◽  
Author(s):  
Kristina Staley ◽  
Joanne Ashcroft ◽  
Lisa Doughty ◽  
George Szmukler
Keyword(s):  
Public Involvement ◽  
Ethics Committees ◽  
Patient And Public Involvement ◽  
Ethical Review ◽  
Evaluation Team ◽  
Content Type ◽  
Regulatory Processes ◽  
Health And Social Care ◽  
Set Up ◽  
Research Document

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process. Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice. Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers. Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research. Originality/value – This original work adds value to the practice of patient and public involvement in research.

Developing and evaluating guidelines for patient and public involvement (PPI) in research

2015 ◽  
Vol 28 (2) ◽  
pp. 141-155 ◽  
Author(s):  
Katherine Pollard ◽  
Anne-Laure Donskoy ◽  
Pamela Moule ◽  
Christine Donald ◽  
Michelle Lima ◽  
...  
Keyword(s):  
Service User ◽  
Public Involvement ◽  
Good Practice ◽  
Patient And Public Involvement ◽  
Service Users ◽  
User Research ◽  
Content Type ◽  
Research Guidelines ◽  
Health And Social Care ◽  
Service User Research

Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

Uncovering the values that motivate people in relation to payments for involvement in research

2014 ◽  
Vol 18 (1) ◽  
pp. 17-20 ◽  
Author(s):  
Teresa Roca ◽  
Peter Bates
Keyword(s):  
Factor Analysis ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Unique Contribution ◽  
Content Type ◽  
East Midlands ◽  
Health And Social Care ◽  
Participation In Research ◽  
Practical Implications

Purpose – The purpose of this paper is to contribute to response to the 2013 health and welfare reform in the UK by looking specifically at how health research stakeholders in the East Midlands perceive reimbursements for their participation in research. Design/methodology/approach – In keeping with the government research agenda, a survey was distributed to patient and public involvement in research volunteers and other stakeholders in the East Midlands region. In total, 251 useful returns were statistically analysed using descriptive and frequency based statistics and factor analysis. Principal Component Analysis and Varimax Rotation with Kaiser Normalisation were used. This was supplemented by thematic analysis of the content of open questions. Findings – 29 per cent of respondents reported experience with payments and/or reimbursement of expenses for participation in research. Three main factors emerged from the exploratory factor analysis indicative of the values that underpin participants motivation to participate in research. These were “as an opportunity for self-development”, “volunteering”, and “work and market forces”. This revealed that local organisations were somewhat out of step with stakeholders motivations. Research limitations/implications – It is a small study, and therefore has limited power to predict. Wider societal factors were not taken into account and may also impinge on the responses given, especially if respondents are dependent on welfare benefits and vulnerable to shifting community attitudes. Practical implications – This study has got practical implications for policy makers, ethics committees, agencies promoting patient and public involvement, and research organisations. It should influence the design of health research, allow systems to be aligned with individual motivation, maximise recruitment to research and enhance the validity of research findings. Social implications – Genuine coproduction will enhance the quality of health and social care research, and will be strengthened by payment systems that respond the ethical position of participants rather than simply organise around welfare benefit regulations. This study also has the potential to influence guidance from major funders of health research. Originality/value – This study offers an unique contribution into a neglected, complex yet significant area of research practice.

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 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.

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

Blowin’ in the wind: The involvement of people who use services, carers and the public in health and social care

2016 ◽  
Author(s):  
Karen Newbigging
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Democratic Deficit ◽  
The Public ◽  
Health And Social Care ◽  
Rapid Diversification

Patient and public involvement (PPI) is often framed in terms of addressing the democratic deficit in the NHS but in England, since 2000, it has become increasingly aligned with the reform of the NHS to become patient centred by enabling people to exercise choice as a right and responsibility across all aspects of healthcare. Since then, there has been a rapid diversification of approaches to and methods for PPI, which experienced organisational turbulence under the Labour administration. This chapter discusses the evolution of PPI in England before 2010, and it examines the Coalition’s reforms of PPI, and the implications of these reforms.

scholarly journals Scoping review protocol: is there a role for physical activity interventions in the treatment pathway of bladder cancer?

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e033518
Author(s):  
Sneha Mehrotra ◽  
Megan Rowland ◽  
Hanyu Zhang ◽  
Beth Russell ◽  
Louis Fox ◽  
...  
Keyword(s):  
Physical Activity ◽  
Bladder Cancer ◽  
Scoping Review ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Cochrane Library ◽  
Ethical Review ◽  
Intervention Programme ◽  
Wide Audience ◽  
The Impact

IntroductionPatients with bladder cancer (BC) have been found to have worse experiences than those with other cancers which may partly be due to impact on quality of life. Currently, little is known about the impact of physical activity (PA) on BC outcomes. This scoping review aims to identify what interventions are available, their reported efficacy and feasibility, and a description of potential underlying biological mechanisms for their effects.Methods and analysisPreferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review (ScR) guidelines and the Levac methodology framework will be followed/used. Electronic databases will be searched (MEDLINE, EMBASE, the Cochrane Library, PsycInfo and Health, OpenGray). Two independent reviewers will screen all abstracts and titles and during a second stage and full-text publications for inclusion. All studies describing PA (as an existing lifestyle or as part of an intervention programme) during BC management will be included. Study characteristics will be recorded; qualitative data will be extracted and evaluated using the Donabedian framework. Quantitative data will be extracted and summarised. A further consultation step will be carried out with patients, their family members and healthcare professionals.Ethics and disseminationResults will be disseminated through a peer-reviewed publication. Through the consultation step, we will ensure that findings will reach a wide audience and recommendations can be made for future development of PA interventions for patients with BC. Data used will be from publicly available secondary sources, and the consultation step will be carried out as part of patient and public involvement so this study does not require ethical review.

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