“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

Abstract Background Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research. Main body In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration. Short conclusion It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.

Download Full-text

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

BMJ Open ◽

10.1136/bmjopen-2020-047995 ◽

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.

Download Full-text

Patient and public involvement prior to trial initiation: lessons learnt for rapid partnership in the COVID-19 era

Research Involvement and Engagement ◽

10.1186/s40900-021-00250-9 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Zahra Jamal ◽

◽

Alexander Perkins ◽

Christopher Allen ◽

Richard Evans ◽

...

Keyword(s):

Clinical Trial ◽

Clinical Trials ◽

Research Ethics ◽

Public Involvement ◽

Ethics Committees ◽

Patient And Public Involvement ◽

Research Ethics Committees ◽

The Public ◽

Clinical Trials Unit ◽

The Uk

Plain English summary Patient and Public Involvement (PPI) describes the active involvement of patients and the public in the research process. Through PPI, patients and members of the public are increasingly involved in the design and conduct of clinical trials. PPI has been shown to improve the quality and relevance of research. During the COVID-19 pandemic, clinical trials have been playing a vital role in helping us find ways to prevent and treat the infection and improve our understanding of the virus. It is important that patients and the public are actively involved in deciding how COVID-19 research is carried out. Unfortunately, Research Ethics Committees in the UK have seen far less PPI for COVID-19 research studies compared with research before the pandemic. A key reason for this is that research is being designed much faster than normal and researchers may feel they do not have time to properly involve patients and the public. In this paper, we share our experiences of PPI for a COVID-19 clinical trial. We show that it is possible to rapidly involve patients and the public in COVID-19 clinical trials. We also explain how the design of the clinical trial was changed in response to feedback from public contributors. Lastly, we discuss the wider learning from this process which might be useful for researchers planning PPI activities for COVID-19 clinical trials in the future. Abstract Background: Clinical trials are playing a critical role in the global public health response to the COVID-19 pandemic. Despite the increasing recognition of the value of PPI in clinical trials, just 22% of the COVID-19 research proposals reviewed by Research Ethics Committees in the UK at the start of the pandemic reported PPI. There is a perception that PPI might result in delays in delivering research and therefore delays in obtaining important results. In this paper, we report our experience of rapid PPI for a COVID-19 clinical trial. Methods: RAPID-19 is a COVID-19 clinical trial which was planned to be submitted for fast-track ethics review in the United Kingdom. During the development of the trial protocol, the PPI Panel at the London School of Hygiene & Tropical Medicine Clinical Trials Unit was involved in the design of the study. The meeting with the PPI Panel lasted just over 1 h and was conducted by teleconference. Results: Although we only had a short period of time to explore the study with the PPI Panel, we were able to gain valuable insight into how the trial would be perceived by potential trial participants. Substantive changes were made to the trial to improve the acceptability of the research without compromising the study timelines. Having access to public contributors with relevant lived experience is an important resource for a Clinical Trials Unit and is critical for rapid PPI. The move to remote working due to lockdown required virtual discussions which helped to overcome some of the barriers to organising face-to-face meetings at short notice. Conclusions: PPI for clinical trials can be conducted in a time-efficient manner within the pressured environment of a pandemic. Involving PPI contributors at an early stage in protocol development maximised the opportunity to shape and influence the trial as well as limited potential delays which could occur if changes to the protocol had to be made at a later stage.

Download Full-text

‘Give Us The Tools!’: development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension

BMJ Open ◽

10.1136/bmjopen-2020-046450 ◽

2021 ◽

Vol 11 (6) ◽

pp. e046450

Author(s):

Samantha Cruz Rivera ◽

Richard Stephens ◽

Rebecca Mercieca-Bebber ◽

Ameeta Retzer ◽

Claudia Rutherford ◽

...

Keyword(s):

Clinical Trial ◽

Public Involvement ◽

Patient And Public Involvement ◽

Patient Reported Outcome ◽

Flow Diagram ◽

Additional Patient ◽

The Public ◽

Patient Reported ◽

Trial Protocols ◽

User Friendly

Objectives(a) To adapt the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-patient-reported outcome (PRO) Extension guidance to a user-friendly format for patient partners and (b) to codesign a web-based tool to support the dissemination and uptake of the SPIRIT-PRO Extension by patient partners.DesignA 1-day patient and public involvement session.ParticipantsSeven patient partners.MethodsA patient partner produced an initial lay summary of the SPIRIT-PRO guideline and a glossary. We held a 1-day PPI session in November 2019 at the University of Birmingham. Five patient partners discussed the draft lay summary, agreed on the final wording, codesigned and agreed the final content for both tools. Two additional patient partners were involved in writing the manuscript. The study compiled with INVOLVE guidelines and was reported according to the Guidance for Reporting Involvement of Patients and the Public 2 checklist.ResultsTwo user-friendly tools were developed to help patients and members of the public be involved in the codesign of clinical trials collecting PROs. The first tool presents a lay version of the SPIRIT-PRO Extension guidance. The second depicts the most relevant points, identified by the patient partners, of the guidance through an interactive flow diagram.ConclusionsThese tools have the potential to support the involvement of patient partners in making informed contributions to the development of PRO aspects of clinical trial protocols, in accordance with the SPIRIT-PRO Extension guidelines. The involvement of patient partners ensured the tools focused on issues most relevant to them.

Download Full-text

How to improve diversity in patient and public involvement

British Journal of Hospital Medicine ◽

10.12968/hmed.2021.0176 ◽

2021 ◽

pp. 1-8

Author(s):

Rebecca Golenya ◽

George D Chloros ◽

Michalis Panteli ◽

Peter V Giannoudis ◽

Anthony Howard

Keyword(s):

Lived Experiences ◽

Public Involvement ◽

Healthcare Professionals ◽

Patient And Public Involvement ◽

Future Research ◽

Barriers To Participation ◽

The Public ◽

Common Barriers ◽

Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

Download Full-text

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

Research for All ◽

10.14324/rfa.05.2.16 ◽

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.

Download Full-text

THE STUDY OF AGING A SEARCH FOR MEANINGFUL PATIENT AND PUBLIC INVOLVEMENT IN GERONTOLOGICAL QUALITATIVE DATA ANALYSIS

Innovation in Aging ◽

10.1093/geroni/igz038.2953 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S802-S803

Author(s):

Barbara Hanratty ◽

Rachel Stocker ◽

Katie Brittain

Keyword(s):

Data Analysis ◽

Research Team ◽

Qualitative Data ◽

Public Involvement ◽

Long Term Care ◽

Patient And Public Involvement ◽

Term Care ◽

The Public ◽

Care Research

Abstract Patients and the public are involved in health and social care research more than ever before. Much effort has been put into developing patient and public involvement (PPI), and promoting co-production of research with patients and the public. Yet there is little guidance for researchers on how to involve PPI partners in the research process, or how involvement can be judged as meaningful. This presentation has its origins in the attempts of one research team to question and navigate a way of involving PPI in long term care research. In this presentation, we describe our model of collaborative qualitative data analysis with PPI partners, in a study exploring primary care services for older adults living in long-term care facilities in England. Anonymised interview transcript excerpts were presented in written, audio, and role-play format to our PPI partners. PPI partners derived meaning from interview data, identifying, confirming and critiquing emerging themes. Their input at this critical stage of the study deepened our initial analysis and prompted the research team to new and different interpretations of the data. This talk addresses ways of engaging PPI partners in innovative ways during data analysis, and offers other researchers some questions, challenges and potential principles for effective practice. We conclude that in areas such as long term care, with multiple stakeholders and a dynamic environment, effective PPI may be flexible, messy and difficult to define.

Download Full-text

Involving older people in the design and conduct of clinical trials

10.1093/med/9780199689644.003.0015 ◽

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.

Download Full-text

Cognitive and environmental interventions to encourage healthy eating: evidence-based recommendations for public health policy

Royal Society Open Science ◽

10.1098/rsos.190624 ◽

2019 ◽

Vol 6 (10) ◽

pp. 190624 ◽

Cited By ~ 1

Author(s):

Lindsay A. Walker ◽

Christopher D. Chambers ◽

Harm Veling ◽

Natalia S. Lawrence

Keyword(s):

Public Health ◽

Behaviour Change ◽

Cognitive Training ◽

Evidence Based ◽

Environmental Interventions ◽

Average Percentage ◽

Public Health Burden ◽

The Public ◽

The Uk ◽

Do So

Policymakers are focused on reducing the public health burden of obesity. The UK average percentage of adults classified as obese is 26%, which is double that of the global average. Over a third of UK adults report using at least one weight management aid. Yet, many people still struggle to change their diet-related behaviour, despite having the awareness, intention and capability to do so. This ‘intention–behaviour gap’ may be because most existing dietary-choice interventions focus on individual decision-making, ignoring the effects of environmental cues on human behaviour. Behaviour change interventions that ‘nudge’ people into making healthier choices by modifying the food environment have been shown to be effective. However, this type of intervention is typically challenging for policymakers to implement for economic, ethical and public accessibility reasons. To overcome these concerns, policymakers should consider ‘boosting’ interventions. Boosting involves enhancing competences that help people make decisions consistent with their goals. Here, we outline cognitive training as a boosting intervention to tackle obesity. We synthesize the evidence for one type of cognitive training (go/no-go training) that may be effective at modifying food-related decisions and reducing body weight. We offer evidence-based recommendations for an obesity-focused Public Health Wales behaviour change programme.

Download Full-text

PPI in research: a reflection from early stage researchers

Research Involvement and Engagement ◽

10.1186/s40900-019-0170-2 ◽

2019 ◽

Vol 5 (1) ◽

Author(s):

Alice M. Biggane ◽

Maria Olsen ◽

Paula R. Williamson

Keyword(s):

Health Research ◽

Public Involvement ◽

Early Stage ◽

Training Session ◽

Research Integrity ◽

Round Table ◽

Patient And Public Involvement ◽

Main Body ◽

Research On Research ◽

Challenges And Opportunities

Abstract Background The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in methodological health research can help increase research value Thus, it is of great importance that researchers, especially early stage researchers continue to discuss and learn about the future challenges and opportunities of PPI. Objective With this commentary, we aim to disseminate i) key messages from a recent PPI training event and ii) discuss what early stage researchers (ESRs) in the “Methods in Research on Research” (MiRoR) project can do to improve our current and future work by considering and incorporating PPI. Main body The latest MiRoR network meeting held at the University of Split in Croatia (2nd-3rd October), included a PPI training session with presentations from Mr. Stephens a patient, about “Waste in research” and Dr. Westmore a funder on “Research integrity”, followed by smaller round-table discussions. This provided early stage researchers (ESRs) with an opportunity to discuss and explore the benefits and challenges of PPI in research, and the appropriate questions and research that is required for improving the implementation of PPI in clinical research. Conclusion As with intervention research, PPI is also important for methodological research since this will help to increase both the value, integrity and quality of research. By providing early stage researchers with appropriate educational, interactive and real-world training, this will introduce the various merits and challenges associated with PPI in early-stage research.

Download Full-text

Designing a Clinical Pharmacy Primary Care Intervention for Myocardial Infarction Patients Using a Patient and Public Involvement Discussion

Pharmacy ◽

10.3390/pharmacy8010013 ◽

2020 ◽

Vol 8 (1) ◽

pp. 13

Author(s):

Zahraa Jalal ◽

Vibhu Paudyal ◽

Shahad Al-Arkee ◽

Gillian Dyson ◽

John Marriott

Keyword(s):

Myocardial Infarction ◽

Primary Care ◽

Focus Group ◽

Clinical Pharmacy ◽

Clinical Pharmacist ◽

Public Involvement ◽

Patient And Public Involvement ◽

Pharmacy Services ◽

The Public ◽

Pharmacy Intervention

Objective: to conduct a Patient and Public Involvement (PPI) focus group session. To help inform the design of a clinical pharmacy intervention in primary care for patients after a coronary event. Methods: this study followed a public involvement method. Community members of the public and community engaged research patients who had experienced myocardial infarction where invited to actively take part in a focus group discussion. This is to share past experiences and provide input and advice into the design of a potential research proposal. The session took place at a cardiac rehabilitation centre. Results: four key themes were identified from the focus group these included: experiences with pharmacy and primary care services, medicines knowledge, the pharmacist role and building rapport with healthcare professionals. Nine participants and three researchers attended the PPI discussion session. Seven of the participants were patients who had experienced a cardiac event in the last three months and two were carers. Primary care pharmacy services both clinical and public health were not very familiar to the participants. Different experiences with clinical pharmacy services were reported by participants, while one experience was reported to be helpful others perceived community pharmacists to be to be busy and isolated behind a counter. A general practice GP based specialist nurse was a familiar model of care unlike a specialist clinical pharmacist GP based care role. Participants reported limited time in GP consultations and the need to book double appointments. Participants stressed the need to receive consistent information about their disease and medication from different professionals involved in their care. Different views were expressed regarding the ability to build rapport with a clinical pharmacist when compared to a GP. Input on study outcomes and design was provided by participants. Conclusion: participants in this session mentioned that a clinical pharmacy intervention after hospital discharge would be useful for their continuity of care. Plans are in place to continue to involve patients and the public in the write up, ethics and dissemination of the potential clinical pharmacy proposal.

Download Full-text