Choice, participation and accountability: assessing the potential impact of legislation promoting patient and public involvement in health in the UK*

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.

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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.

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PP22 An exploration of the facilitators and barriers to paramedics’ assessment and treatment of pain in paediatric patients following trauma (EX-PAT)

Emergency Medicine Journal ◽

10.1136/emermed-2020-999abs.22 ◽

2020 ◽

Vol 37 (10) ◽

pp. e10.3-e11

Author(s):

Barry Handyside ◽

Helen Pocock ◽

Charles Deakin

Keyword(s):

Public Involvement ◽

Patient And Public Involvement ◽

Barriers And Facilitators ◽

Prehospital Emergency Care ◽

Structured Interviews ◽

Cross Sectional ◽

South Central ◽

Paediatric Patients ◽

Facilitators And Barriers ◽

The Uk

BackgroundA cross-sectional service evaluation within South Central Ambulance Service (SCAS) revealed deficiencies in the assessment and management of paediatric patients’ pain resulting from trauma. This suggested a need for further work to identify facilitators and barriers to pain assessment and management amongst this patient group. Studies looking into the barriers and facilitators to paramedics’ assessment and management of paediatrics in pain have been conducted internationally and not solely in traumatic events. These studies are not transferable to the UK setting due to prehospital emergency care differences within these countries.MethodsThis study will utilise qualitative research methods.The study population will be qualified paramedics. In-depth semi structured interviews will be conducted using a guide developed from previous studies and refined at patient and public involvement events. The expected numbers of participants will be 12–15 but will continue to the point of data saturation. Thematic analysis of data will be performed using an open coding technique guided by Braun and Clarke’s six step framework. Once complete member checking will take place with each participant.ResultsIt is anticipated that both positive and negative aspects of paramedics’ role during these incidents will be identified. Previous literature has identified support from colleagues, interaction with parents, and the ability to alleviate pain as facilitators. Barriers have included current educational practices, lack of exposure, guidelines, the prehospital environment, difficulty in assessing young children and difficulty in providing pain relief. It is therefore likely that these themes may emerge but identification of UK-specific barriers and facilitators is anticipated.ConclusionsWith no previous study of this nature conducted before in the UK this could valuably inform the education and teaching provision of ambulance services and universities as well as a platform for policy makers and guideline producers to enhance the tools available to paramedics.

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

Research Involvement and Engagement ◽

10.1186/s40900-021-00324-8 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Rebecca Foster ◽

Hannah Carver ◽

Jason Wallace ◽

Alex Dunedin ◽

Stan Burridge ◽

...

Keyword(s):

Substance Use ◽

Public Involvement ◽

Life Experiences ◽

Patient And Public Involvement ◽

Main Body ◽

The Public ◽

Harm Reduction Intervention ◽

The Rich ◽

The Uk ◽

Do So

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.

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Optimising an intervention to support home-living older adults at risk of malnutrition: a qualitative study

BMC Family Practice ◽

10.1186/s12875-021-01572-z ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Liz Payne ◽

Daniela Ghio ◽

Elisabeth Grey ◽

Joanna Slodkowska-Barabasz ◽

Philine Harris ◽

...

Keyword(s):

Older Adults ◽

At Risk ◽

Public Involvement ◽

Target Population ◽

High Energy ◽

Patient And Public Involvement ◽

Community Dwelling ◽

Good Nutrition ◽

Intervention Content ◽

The Uk

Abstract Background In the UK, about 14% of community-dwelling adults aged 65 and over are estimated to be at risk of malnutrition. Screening older adults in primary care and treating those at risk may help to reduce malnutrition risk, reduce the resulting need for healthcare use and improve quality of life. Interventions are needed to raise older adults’ risk awareness, offer relevant and meaningful strategies to address risk and support general practices to deliver treatment and support. Methods Using the Person-based Approach and input from Patient and Public Involvement representatives, we developed the ‘Eat well, feel well, stay well’ intervention. The intervention was optimised using qualitative data from think aloud and semi-structured process evaluation interviews with 23 and 18 older adults respectively. Positive and negative comments were extracted to inform rapid iterative modifications to support engagement with the intervention. Data were then analysed thematically and final adjustments made, to optimise the meaningfulness of the intervention for the target population. Results Participants’ comments were generally positive. This paper focuses predominantly on participants’ negative reactions, to illustrate the changes needed to ensure that intervention materials were optimally relevant and meaningful to older adults. Key factors that undermined engagement included: resistance to the recommended nutritional intake among those with reduced appetite or eating difficulties, particularly frequent eating and high energy options; reluctance to gain weight; and a perception that advice did not align with participants’ specific personal preferences and eating difficulties. We addressed these issues by adjusting the communication of eating goals to be more closely aligned with older adults’ beliefs about good nutrition, and acceptable and feasible eating patterns. We also adjusted the suggested tips and strategies to fit better with older adults’ everyday activities, values and beliefs. Conclusions Using iterative qualitative methods facilitated the identification of key behavioural and contextual elements that supported engagement, and issues that undermined older adults’ engagement with intervention content. This informed crucial revisions to the intervention content that enabled us to maximise the meaningfulness, relevance and feasibility of the key messages and suggested strategies to address malnutrition risk, and therefore optimise engagement with the intervention and the behavioural advice it provided.

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Virtual Worlds as a Tool to Facilitate Weight Management for Young People

Journal of Virtual Worlds Research ◽

10.4101/jvwr.v6i1.7026 ◽

2013 ◽

Vol 6 (1) ◽

Cited By ~ 3

Author(s):

Michael James Taylor ◽

Dave Taylor ◽

Myutan Kulendran ◽

Paul Gately ◽

Ara Darzi

Keyword(s):

Young People ◽

Weight Management ◽

Virtual Worlds ◽

Second Life ◽

Public Involvement ◽

Well Being ◽

Patient And Public Involvement ◽

3 Dimensional ◽

Sustained Weight Loss ◽

The Uk

Childhood obesity is a serious problem in the UK, with around 20% of children aged 10-11 being overweight or obese. Lifestyle interventions can be effective, but there is limited evidence of their effectiveness in delivering sustained weight loss. The present research explored potential of web-based, 3-dimensional virtual worlds (VWs) for facilitation of weight-management, well-being and patient and public involvement (PPI) for young people. Attendees of a weight management camp took part in induction sessions for use of the VW of Second Life. All participants successfully learned how to interact with one another and navigate the virtual environment. Participant appraisals of Second Life were varied. Some found it complicated and difficult to use, and some found it fun and the majority stated that they would choose to use VWs again. There is considerable potential for use of VWs to promote weight management, and Second Life or a similar VW could be used to deliver this. Potential barriers include members of the target sample having limited access to computers with necessary system requirements for running VWs, and that some may find VW-based educational experiences unappealing or challenging to navigate. For some however, VWs may provide a useful mode for provision of education, PPI and support relating to weight management.

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Using the Plan-Do-Study-Act model: Pacesetters experiences

International Journal of Health Care Quality Assurance ◽

10.1108/ijhcqa-09-2011-0053 ◽

2013 ◽

Vol 26 (7) ◽

pp. 593-600 ◽

Cited By ~ 5

Author(s):

Pam Moule ◽

David Evans ◽

Katherine Pollard

Keyword(s):

Case Studies ◽

Public Involvement ◽

Action Learning ◽

Patient And Public Involvement ◽

Work Place ◽

Enabling Factors ◽

Content Type ◽

Evaluation Approach ◽

External Evaluators ◽

The Uk

Purpose – This article aims to analytically review the Plan-Do-Study-Act (PDSA) model used in the Pacesetters national programme evaluation. Design/methodology/approach – The evaluation team's two-fold role is outlined: supporting project teams to develop PDSA plans and collect evaluation data. Four case studies are used to show the PDSA model's application and effect in a participatory action learning approach. Despite limitations, it is clear that all four case studies illustrate the PDSA model's potential benefits in a participatory evaluation approach, which involves public and patients. Findings – The model's effectiveness is premised on several enabling factors such as: teams appreciating the model; a climate that values all learning and open to re-planning; engaging any external evaluators whose role is clearly communicated to all project stakeholders in a timely fashion. Practical implications – There are clear intentions to promote evidence-based commissioning in the UK that values patient and public involvement. The PDSA model has the potential to test and implement changes in real work-place settings and to involve the public in evaluation. Originality/value – Case study analysis identifies new reflections on the PDSA model's use to support innovative NHS practice development with public involvement in a participatory approach.

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Shifting research culture to address the mismatch between where trials recruit and where populations with the most disease live: a qualitative study

BMC Medical Research Methodology ◽

10.1186/s12874-021-01268-z ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Tanvi Rai ◽

Sharon Dixon ◽

Sue Ziebland

Keyword(s):

Capacity Building ◽

Health Research ◽

Active Sites ◽

Public Involvement ◽

Research Participation ◽

Healthcare Services ◽

Patient And Public Involvement ◽

Research Activity ◽

Set Up ◽

The Uk

Abstract Background Research participation is beneficial to patients, clinicians and healthcare services. There is currently poor alignment between UK clinical research activity and local prevalence of disease. The National Institute of Health Research is keen to encourage chief investigators (CIs) to base their research activity in areas of high patient need, to support equity, efficiency and capacity building. We explored how CIs choose sites for their trials and suggest ways to encourage them to recruit from areas with the heaviest burden of disease. Methods Qualitative, semi-structured telephone interviews with a purposive sample of 30 CIs of ongoing or recently completed multi-centre trials, all of which were funded by the UK National Institute of Health Research. Results CIs want to deliver world-class trials to time and budget. Approaching newer, less research-active sites appears risky, potentially compromising trial success. CIs fear that funders may close the trial if recruitment (or retention) is low, with potential damage to their research reputation. We consider what might support a shift in CI behaviour. The availability of ‘heat maps’ showing the disparity between disease prevalence and current research activity will help to inform site selection. Embedded qualitative research during trial set up and early, appropriate patient and public involvement and engagement can provide useful insights for a more nuanced and inclusive approach to recruitment. Public sector funders could request more granularity in recruitment reports and incentivise research activity in areas of greater patient need. Accounts from the few CIs who had ‘broken the mould’ suggest that nurturing new sites can be very successful in terms of efficient recruitment and retention. Conclusion While improvements in equity and capacity building certainly matter to CIs, most are primarily motivated by their commitment to delivering successful trials. Highlighting the benefits to trial delivery is therefore likely to be the best way to encourage CIs to focus their research activity in areas of greatest need.

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Assessing the possibilities and challenges of patient involvement in sexual, reproductive and HIV/AIDS services

Sexual Health ◽

10.1071/sh15224 ◽

2016 ◽

Vol 13 (3) ◽

pp. 213 ◽

Cited By ~ 3

Author(s):

Jane Meyrick ◽

Debra Gray ◽

Abigail Jones

Keyword(s):

Health Services ◽

Sexual Health ◽

Online Survey ◽

Public Involvement ◽

Service Providers ◽

Healthcare Services ◽

Evidence Base ◽

Patient And Public Involvement ◽

Convenience Sample ◽

The Uk

Background: Patient and public involvement (PPI) is a key feature of healthcare services in the UK. Sexual and reproductive health and HIV (SRHH) services face unique PPI challenges, as the anonymity and confidentiality required by service users can be a barrier to attracting patient input. PPI could improve sexual health services, through increased trust in services and the ability to tackle sexual health inequalities. However, specific practical guidance on how to address PPI in sexual health and the evidence to support it is sparse. Methods: This research aims to begin building an evidence base for PPI in sexual health services through: 1) an audit of PPI in SRHH in the Bristol region; and 2) a parallel survey of potential users of sexual health services about their experiences of PPI. For the audit, 18 SRHH organisations from all those in the region invited complete a short online survey, representing a range of different service providers. For the survey, participants, through a convenience sample via the University of the West of England and social media, were invited to complete an anonymous online survey of their experiences of PPI in SSRHs; 96 people responded. Results: Reliance on customer satisfaction approaches and patients not being asked for feedback or what PP is for are reported. Services cite under-resourcing and a lack of time as barriers. Conclusions: Improving the use of patient’s voice in SRHH could be supported through clarity of purpose (measured against outcomes), better communication with patients, and the need for flexible methods.

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Introducing patient and public involvement practices to healthcare research in Austria: strategies to promote change at multiple levels

BMJ Open ◽

10.1136/bmjopen-2020-045618 ◽

2021 ◽

Vol 11 (8) ◽

pp. e045618

Author(s):

Raphaela E Kaisler ◽

Stefan Tino Kulnik ◽

Elisabeth Klager ◽

Maria Kletecka-Pulker ◽

Eva Schaden ◽

...

Keyword(s):

Public Involvement ◽

Ethics Committees ◽

Patient And Public Involvement ◽

Healthcare Research ◽

Research Institutes ◽

Research Communities ◽

Positive Attitudes ◽

Open Questions ◽

Grant Scheme ◽

The Uk

BackgroundPatient and public involvement (PPI) in research is well-established in the UK. However, it can be challenging to introduce PPI to research communities where there is limited prior knowledge, experience or appreciation of PPI. We aimed to explore current PPI practices, experiences and ethical and operational challenges with PPI within our own research community in Austria, to inform strategies for supporting PPI in Austria going forward.MethodsWe surveyed scientists at 21 research institutes of the Ludwig Boltzmann Gesellschaft (LBG) and representatives of 32 medical and university research ethics committees in Austria using online questionnaires. We analysed quantitative data using descriptive statistics, and we collated textual responses to open questions. We combined survey data with anecdotal evidence from our personal experience to summarise current challenges around implementing PPI in Austria.ResultsNineteen scientists from nine research institutes indicated generally positive attitudes towards PPI. However, the majority reported they rarely or never involved patients and members of the public in roles of consultation, collaboration or control in research. Six of eight ethics committees were unfamiliar with PPI. We discern five current challenges to implementing PPI in Austria: lack of knowledge and skills for PPI among scientists, scepticism about the usefulness of PPI, conflation of PPI with qualitative research, uncertainty about ethical requirements for PPI and uncertainty about publishing PPI activities.DiscussionWe suggest that the provision of guidance about ethical requirements of PPI is a strategic priority. To address this, and following on from a recently introduced PPI training and grant scheme by the LBG, our surveys have initiated a dialogue with ethics committees and have informed the development of a checklist for ethical aspects of PPI.ConclusionOur experiences may provide useful examples to others who seek to introduce or strengthen PPI practices within their own research communities.

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