scholarly journals Sustaining patient and public involvement in research: A case study of a research centre

2013 ◽  
Vol 7 (4) ◽  
pp. 146-154 ◽  
Author(s):  
Clare Jinks ◽  
Pam Carter ◽  
Carol Rhodes ◽  
Roger Beech ◽  
Krysia Dziedzic ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Centre

scholarly journals Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

2021 ◽  
Vol 5 (2) ◽  
Author(s):  
Zoë A. Sheppard ◽  
Sarah Williams ◽  
Richard Lawson ◽  
Kim Appleby
Keyword(s):  
General Hospital ◽  
Public Involvement ◽  
District General Hospital ◽  
Patient And Public Involvement ◽  
Rural District ◽  
Relevant Research ◽  
The Public ◽  
Research Volunteers ◽  
Large Groups

The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

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 PANDA: A case-study examining a successful Audiology and Otology Patient and Public Involvement and Engagement research group

2020 ◽  
Vol 7 (3) ◽  
pp. 230-241
Author(s):  
Laura Boddy ◽  
Richard Allen ◽  
Rosalyn Parker ◽  
Margaret E O'Hara ◽  
Amy V Gosling
Keyword(s):  
Research Group ◽  
Public Involvement ◽  
Patient And Public Involvement

scholarly journals Developing a typology of the roles public contributors undertake to establish legitimacy: a longitudinal case study of patient and public involvement in a health network

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e033370
Author(s):  
Jacqueline Barker ◽  
Pam Moule ◽  
David Evans ◽  
Wendy Phillips ◽  
Nick Leggett
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Health Science ◽  
Strategic Decision ◽  
Longitudinal Case Study ◽  
Health Network ◽  
The Public ◽  
Patient Advocate

ObjectiveTo identify how public contributors established their legitimacy in the functioning of a patient and public involvement programme at a health network.DesignA longitudinal case study with three embedded units (projects) involving public contributors. Interviews (n=24), observations (n=27) and documentary data collection occurred over 16 months.SettingThe West of England Academic Health Science Network (WEAHSN), 1 of 15 regional AHSNs in England.ParticipantsInterviews were conducted with public contributors (n=5) and professionals (n=19) who were staff from the WEAHSN, its member organisations and its partners.ResultsPublic contributors established their legitimacy by using nine distinct roles: (1) lived experience, as a patient or carer; (2) occupational knowledge, offering job-related expertise; (3) occupational skills, offering aptitude developed through employment; (4) patient advocate, promoting the interests of patients; (5) keeper of the public purse, encouraging wise spending; (6) intuitive public, piloting materials suitable for the general public; (7) fresh-eyed reviewer, critiquing materials; (8) critical friend, critiquing progress and proposing new initiatives and (9) boundary spanner, urging professionals to work across organisations. Individual public contributors occupied many, but not all, of the roles.ConclusionsLived experience is only one of nine distinct public contributor roles. The WEAHSN provided a benign context for the study because in a health network public contributors are one of many parties seeking to establish legitimacy through finding valuable roles. The nine roles can be organised into a typology according to whether the basis for legitimacy lies in: the public contributor’s knowledge, skills and experience; citizenship through the aspiration to achieve a broad public good; or being an outsider. The typology shows how public contributors can be involved in work where lived experience appears to lack relevance: strategic decision making; research unconnected to particular conditions; or acute service delivery.

scholarly journals Patient and public involvement and the implementation of research into practice

2016 ◽  
Vol 11 (4) ◽  
pp. 256-267 ◽  
Author(s):  
Steve Gillard ◽  
Rhiannon Foster ◽  
Constantina Papoulias
Keyword(s):  
Service Delivery ◽  
Conceptual Model ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Successful Implementation ◽  
Science Literature ◽  
Retrospective Case ◽  
Content Type ◽  
The Impact

Purpose Patient and public involvement (PPI) is increasingly central to the delivery of health services research. However, it has proved challenging to evaluate the impact of PPI on the implementation of research into clinical practice and health service delivery. The purpose of this paper is to develop and test a conceptual model explaining how PPI in the research process might impact on implementation. Design/methodology/approach A scoping review of knowledge translation and implementation science literature was performed to develop a conceptual model of the impact of PPI in research on implementation. A retrospective case study of a research project was used to illustrate the model. Findings The authors identified five domains in which PPI can impact on the implementation of research into practice. The review demonstrated that successful implementation depends on developing relational models of knowledge production, valuing experiential knowledge, engaging in collaborative practice, making use of knowledge brokers or tools for knowledge facilitation and embedding these factors into the implementation context. In the case study the authors were able to find examples that illustrated each of the five domains of the model. Originality/value The paper builds on existing endeavour to evaluate the impact of PPI in research, demonstrating that it is possible to model, conceptually, the processes whereby PPI in research might impact on practice and service delivery. By illustrating those processes through the exemplar case the authors also demonstrate the potential for the model to be “operationalised”, allowing the impacts, on practice, of PPI in research to be systematically and directly evidenced.

Patient and public involvement: in theory and in practice

2014 ◽  
Vol 128 (4) ◽  
pp. 318-325 ◽  
Author(s):  
A Robinson
Keyword(s):  
Research Design ◽  
Patient Group ◽  
Research Funding ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
North East ◽  
Funding Application

AbstractBackground:You've probably heard of patient and public involvement by now. You may even have ‘involved’ people in your research. But why involve patients, carers and members of the public at all? Is it just another hoop to jump through when preparing a research funding application for submission, or could it actually add something to your research? Could involving patients and members of the public even help you to design and deliver better research, with outcomes focused directly on the needs of your patient group?Objective:This article aims to answer some of these questions. It considers the theory underpinning patient and public involvement. This is followed by practical suggestions and advice to help you develop (or further develop if you already involve people!) patient and public involvement within your own research. There is also a case study to illustrate some of the main points, and extracts written by members of Research Design Service North East Consumer Panels.

scholarly journals P074 Insights into creating a virtual patient and public involvement initiative

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Eleanor Hawkins ◽  
Tracy Hyndman ◽  
Raj Amarnani ◽  
James Kimpton ◽  
Su-Ann Yeoh ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Health Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Face To Face ◽  
London Hospital ◽  
University College ◽  
University College London

Abstract Background/Aims  Patient and public involvement (PPI) initiatives are important to ensure patient-centered research. However, traditional focus groups can present challenges including the recruitment and retention of patient partners. Additional challenges to patient involvement have also arisen due to the coronavirus pandemic (COVID-19). The University College London (UCL) Patient Partners in Rheumatology Research initiative has been developed to explore novel ways to boost patient involvement and foster an active collaboration between basic researchers and patient partners. Methods  Two online surveys were designed to obtain information with regards to the expectations and practicalities of this initiative. One survey was sent to patients who had registered an interest in being patient partners and the other survey to rheumatology researchers at UCL and University College London Hospital (UCLH). Results  We received responses from 25 researchers and 21 patients. The majority of patients who responded (71%) had not previously been involved in PPI. Most of the researchers (84%) had previously utilised PPI, however 20% of those had some difficulty accessing it. Most patients (86%) were interested in becoming a patient partner. Amongst those with reservations, one stated that “I don't think I have the qualifications to be involved with scientists and researchers”. Over half of patients (52%) were happy to participate in PPI more than five times a year and most researchers (84%) expressed that five times a year was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to social restrictions because of COVID-19, we asked both patients and researchers their preferred mode of meeting. Both groups favoured a mixed (virtual and face to face) meeting arrangement (81% for patients and 68% for researchers). A third of patients (38%) expressed that they would need technical assistance accessing a virtual meeting. Almost all patients (95%) were happy to contribute to lay summary reviews remotely via email. Conclusion  Based on the insights gained from the survey results, our PPI initiative meetings will be hosted in a hybrid virtual/face to face format. These will be held at a time and frequency that is convenient for the patient partners to increase participation across wider demographics. This survey has highlighted that we have to be mindful of certain patient perceptions of PPI which creates a barrier to patient involvement and that some individuals may require further support in accessing virtual meetings. By designing a PPI initiative that creatively addressed the needs of both the researchers and patient partners we hope to create a platform for productive dialogue and collaboration to ensure patient-centred research, despite the changes brought about by the COVID-19 pandemic. Disclosure  E. Hawkins: Other; funded by National Institute of Health Research, Clinical Research Network. T. Hyndman: None. R. Amarnani: None. J. Kimpton: None. S. Yeoh: Other; University College London Hospital National Institute of Health Research Biomedical Research Centre, UCLH Charities, Royal College of Physicians and Rosetrees Trust. M. Castelino: Other; University College London Hospitals National Institute for Health Research Biomedical Research Centre.

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