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Innovating public engagement and patient involvement through strategic collaboration and practice

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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.

Plain English summary

Working in partnership with people, patients, carers and communities is an important and expected component of health-related research activity in the UK. Within health research, 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. This paper describes a unique approach taken by the Public Programmes Team - an interdisciplinary group of public engagement specialists 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. Through preliminary case studies exemplifying the impact of our approach, our achievements and learning between April 2017 and March 2018, we propose that our approach has the potential to be replicated elsewhere. 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.

Introduction

Background: public engagement versus patient and public involvement?

“A diverse and inclusive public involvement community is essential if research is relevant to population needs and provides better health outcomes for all.” Going the Extra Mile 2015 [1].

Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. The definitions of public engagement (PE) and patient public involvement (PPI) in the UK (Box 1) have traditionally led to PE being viewed as awareness raising, sharing, informal learning, debate and dialogue activities; and PPI as more formalised partnerships and processes to influence health research.

Box 1 Definitions of public engagement and patient involvement in the UK

In health research, public engagement and patient involvement in the UK have historically been siloed in, respectively, academic (Higher Education) and health service (National Health Service [NHS]) based research environments, including through distinct funding mechanisms, definitions (Box 1) and communities of practice. For example, the National Institute of Health Research (NIHR) – England’s largest funder of leading-edge health research, focused on the needs of patients and the public – traditionally funds PPI; the Wellcome Trust is the largest funder of PE with science in the UK, and the UK Research Councils routinely fund public engagement within UK Higher Education Institutions. Examples of good practice in PPI and PE abound and the fields have much to gain from working together, not least because they share similar values, challenges and the goal of working towards better health outcomes for all.

Social scientists have long called for scientists and scientific institutions to democratise the production of scientific knowledge (eg. [2]) through engagement, involvement and acknowledging the value of ‘lay’ expertise. Making scientific research more accountable, through involvement and engagement, may address the decline of trust in scientists and scientific institutions, (eg. [3]). Particularly within the arena of translational research, with its potential to yield clinical applications, research is increasingly conceived as multidisciplinary, socially distributed and oriented towards application and use, with an accompanying emphasis on both engagement and involvement [4, 5]. In addition, from a public point of view, arguably, the distinctions between engagement and involvement in health research are artificial.

Recent reports and initiatives highlight the need for:

  • Greater innovation and quality across public engagement and patient involvement [1, 6],

  • Increased effective collaborations between research organisations and civic society [1, 6] including the importance of approaches to bring together communities of people and practice,

  • Enhanced diversity, professional and career development of practitioners across public engagement [6] and patient involvement [1],

  • Better inclusion of so-called ‘harder to reach’, ‘underserved’ or ‘seldom-heard’ audiences [1, 7] in health, research and engagement.

We believe that rather than drawing arbitrary distinctions between public engagement and patient involvement, the two disciplines can work together to foster inclusive research communities. We have developed a way of working across PPI and PE that aims to provide complementarity, and innovate the spaces, between PE and PPI, with a view to addressing the above needs. Our ‘cycle’ of PPIE (an umbrella term to describe the wealth of practices in PPI and PE, used in the absence of a better alternative) is based on our expertise and experience across both PPI and PE prior to 2017.

Background: context of the public Programmes team

Since 2003, the Public Programmes team has worked across applied, health service and academic health research environments, supporting and delivering public engagement and involvement, learning and publishing across these sectors (eg. [8,9,10,11]) and being recognised through awards from both sectors (eg. [12, 13]). Figure 1 tells our story.

Fig. 1
figure1

The Public Programmes Story. Originally with a focus on public engagement with genomics, the Public Programmes team has evolved to engage and involve people across health research. The team is embedded within research programmes and leads large scale national initiatives, with a focus on diversity

Now a small team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, we are embedded across translational health research infrastructure and delivery, hosted by Manchester University NHS Trust. The approach and vision of the Public Programmes Team has evolved to: ‘make health research relevant and inclusive for everyone’. Our values, collaboratively established by our team, with input from our partners (including public partners), are defined as: working together; everyone matters; innovating inclusively; driving excellence. We connect and involve people from all walks of life with health-related research, to the benefit of research, researchers, patients and people, and wider research, health and civic sectors. Importantly, the Public Programmes Team adopt a strategic approach to working across engagement and involvement in health research in Greater Manchester. The team receives funding as an integral part of the NIHR Biomedical Research Centre (BRC) and NIHR Clinical Research Facility (CRF), with match funding from the Wellcome Trust and working in partnership with other NIHR infrastructure (eg. NIHR Greater Manchester Patient Safety Translational Research Centre), the University of Manchester and other research groups and organisations, including industry, regionally, nationally and internationally.

Our organisation-wide aims are to:

  • Prioritise diversity and inclusion within our contributors, audiences and approaches,

  • Experiment with arts-led approaches,

  • Innovate across engagement and involvement,

  • Deliver best practice evaluation and research informing a continuous cycle of innovation and improvement in our practice,

  • Build capacity for engagement and involvement within researchers and public contributors.

Background – context and opportunities

Our approach builds on a number of contexts and opportunities including: our track record and experience (Fig. 1); already working across public engagement and involvement fields; and a positive shift within PPI in health research to foster more creative and inclusive approaches. It’s clear that multiple methods are emerging to support public involvement (for example, searching for ‘methodology’ within BMC Research Involvement and Engagement alone returned 79 results since the first publication of the journal); a growing confidence in the sector realises that there is no ‘one size fits all’ method (eg. [14]). Another positive shift within public and patient engagement and involvement in health research, recognises the need to understand the impact of engagement and involvement, i.e. The difference engagement and involvement can make to people and to research. Specifically, in Greater Manchester (the second most populous urban area in the UK), the Greater Manchester Health and Social Care budgets became devolved in April 2016, enabling greater collaboration and consolidation across research, healthcare and community landscapes. The region is perceived as ‘testbed’ for working differently and in a more holistic and joined up way across engagement, involvement, research, health and care.

This paper formalises our approach to inclusive research for 2017–2022, by introducing our conceptual ‘cycle’ of engagement and involvement that underpins our practice. We state how we will evaluate our approach, we examine preliminary case studies exemplifying our approach, and report on evidence demonstrating some of its impacts. Finally, we suggest that both our ‘cycle’ and our strategic and collaborative approach present a unique learning opportunity for similar organisations and have the potential to be replicated elsewhere. We are primarily a practice-based organisation and are increasingly aware of the need to publish our approach and work in peer-reviewed publications, even if we are not traditional academics; we have been prompted and encouraged to share our approach through publication by many partners, including NIHR.

Methods

Our approach – a ‘cycle’ of engagement and involvement for professional practice

Our approach (Fig. 2) relies on a model stimulating an interactive ‘cycle’ of engagement, involvement and research. Rather than being focused on PE and/or PPI as an outcome in itself, our aim is to stimulate an inclusive research community by being focused on the purposes of engagement and involvement and working appropriately with researchers from different disciplines, people, patients, creative partners and communities from diverse backgrounds and perspectives to achieve clear objectives for working together. Though the methods we might use for connecting people and research will depend on the circumstances, research area, people and patients we’re working with, our cycle of practice revolves around:

  • Co-creating high-quality engagement outputs that capture curiosity and concerns about research, by working with creative partners, researchers, research staff, engaged people, and public and patient communities including those who might currently be less well heard in research. In this phase, we focus on arts-led approaches as these recognise and celebrate people’s existing positive social identities — as designers, music-lovers, makers or social activists, for example — and, in our experience, are a key way to invite and welcome people, to engage with research, especially those who might not see science as ‘for them’ [15],

  • Amplifying our outputs. This could be through peer-to-peer approaches, broadcast and social media methodologies, and/or partnerships with broadcast, engagement, charity or civil organisations,

  • Completing the cycle relies on finding, nurturing, establishing or signposting to progression routes for all those involved.

Fig. 2
figure2

The Public Programmes ‘cycle’ of engagement and involvement. To stimulate an inclusive research community, the cycle revolves around co-creating high-quality engagement outputs that capture curiosity and concerns about research, the amplifying outputs to reach larger audiences. Completing the cycle relies on nurturing and/or establishing progression routes related to health research for all involved, building on engagement

For engaged audiences, progression routes could be, for example:

  • Taking the next step to an active role in health related research (e.g. helping to develop or prioritise research questions with a research team, acting as co-researchers, advising on recruitment through existing mechanisms or through new relationships developed through working together) and/or,

  • Contributing to, or leading, further research, engagement and involvement, themselves, and/or,

  • Taking part in research, and/or,

  • Developing personal agency, confidence, health and research literacy and connections.

For researchers, progression routes could be, for example:

  • Increased willingness, knowledge of and capability to work alongside different people and patient groups to influence current or future research and research practice,

  • Greater ability to identify, understand, utilise and maximise opportunities for engagement.

For creative practitioners (eg. Musicians, visual artists, radio producers, performance artists), progressions routes could be, for example:

  • Stimulating and developing their practice and portfolio to focus on engagement with health and health research,

  • Developing connections that are mutually inspiring.

Our approach: moving from research-led to community-led

Our cycle of practice can be research-led, responding to a demand from the research sector to engage and involve; and/or demand-led (community-led), listening to and responding to people’s and communities’ expectations and thoughts about health-related research. Our demand-led approach complements the ‘human centred’ approach and strategy for engagement recently put forward by the Wellcome Trust [16, 17].

At the outset, our approach will be more research-led. By 2022, we anticipate and hope that our portfolio of work will contain substantially more demand-led activity, thus influencing the research carried out within our context. We are leading this additionally through:

  • Working with local communities to inform and co-produce engagement projects and outreach strategies,

  • Creating equal power dynamics across PPIE practitioners, researchers and public contributors to understand the needs of audiences when we’re communicating research concepts,

  • Involving patients and public contributors in delivering sessions within both engagement and training events,

  • Running focus groups for people and patients within engagement events,

  • ‘Involved communications’– applying user-testing and co-production in communicating about our organisation, our engagement, our involvement and our research.

We will publish the methodologies and findings of our community-led work in due course.

Our approach – outcomes and evaluation

We are aware that the outcomes associated with our work are multiple, including:

  • Individual empowerment and transformational growth: for all the people involved in our work, including public contributors, creative experts, researchers and others,

  • ‘Better’ research - through more inclusive and relevant research practice,

  • ‘Better’ engagement and involvement – through more inclusive and relevant practice,

  • Increased opportunities for research collaboration and innovation.

Taken together, the above outcomes have the potential to positively contribute to health. Our challenge is to capture impacts and share the learning of a long term body of work and across the range of outcomes listed above. Due to our 5 year approach, we will evaluate each activity, event and project as standard, also routinely collecting monitoring information against our organisation-wide aims across our entire research community (researchers and public contributors).

Our success criteria will focus on:

  • Reported changes to research (priorities, design, implementation, analysis, dissemination). This is assessed through: the number of publications evidencing the impact of public involvement; number of public contributors acknowledged in publications, as co-authors, and as co-applicants on research grants; narratives describing the nature and impact of public involvement and engagement on research; and interviews with researchers and public contributors regarding the impact of involvement and engagement,

  • Increased diversity of public contributors, recognising the value of intersectional approaches. Through anonymised surveys, developed on advice from the Manchester Urban Collaboration on Health, we have started to capture anonymised demographics of our partners and audiences according to ethnicity, geographical location (postcode), level of education, and other protected characteristics,

  • Inclusive practices and environments that are recognised and valued by all. Our community-led strand of work will pioneer and evaluate approaches that will be published in due course,

  • Progression routes (in research settings or otherwise) adopted by public contributors and researchers are assessed via survey and through regular qualitative interviews with researchers, creative partners and public contributors, including during project initiation, interim review and final ‘wash up’ meetings,

  • Increased knowledge, skills and confidence in PPIE from researchers and contributors, as assessed through regular surveys and interviews (including through an external evaluation consultant) with researchers,

  • Increased knowledge, skills and confidence of researchers to work with diverse audiences/contributors, as assessed through regular surveys and interviews with researchers,

  • Developing personal agency, confidence, health and research literacy and connections amongst public contributors,

  • Extended reach of PPIE and research, as assessed by metrics related to event attendance, communications (eg. Social media reach).

We are working to standardise the evaluation of our PPIE strategy, activities, meetings and feedback processes. A bespoke Customer Relationship Management system is being developed to track and monitor our PPIE, its impacts and progression routes.

Results

Results: exemplifying our method

Two case studies (Box 2, Box 3, Additional file 1) presented here exemplify our ‘cycle’ approach to innovating involvement and engagement practice and some of their associated evaluation findings.

Box 2 Case study - #DesignforMSK [26] and YourRheum [9, 27]
Box 3 Case study - Summary of #BreathtakingLungs [21]

Results: key preliminary achievements

We are just at the beginning of testing our approach; our early (Year 1; Fig. 3) notable achievements, and continuing challenges, include:

Fig. 3
figure3

Summary of PPIE achievements in Year 1. Visual summary of public and patient involvement and engagement (PPIE) outputs achieved by the Public Programmes team from April 2017 to March 2018

A joint PPIE strategy across translational research infrastructure: working intensively with research, public and patient partners, we have elaborated a joint PPIE strategy [18] across the Public Programmes team, Manchester BRC, Manchester CRF and the Research & Innovation Division of the Manchester University NHS Foundation Trust (and in partnership with the University of Manchester). Over 100 staff, researchers and contributors contributed. Other research partners with whom we collaborate also sign up to our strategic aims.

Working with a large and varied group of public contributors: We have recruited and embedded public contributors for monthly Executive Group, quarterly Governance Board, and additional strategic meetings. In Year 1, we have worked directly with over 250 public contributors in a variety of ways (eg. As part of governance, or on specific projects).

Flourishing our research-led involvement and co-production of research. 213 public contributors were involved in 27 bespoke face-to-face patient ‘panel’ involvement meetings serving specialties within BRC and CRF themes. Alongside meetings, a broader online approach for either light-touch digital, or response-mode involvement work has been developed. 42 research projects have involved public contributors, including, for example, the first UK trial of Proton Beam Therapy [19]; experience-based co-design work with the Manchester CRF [20] and the development of a Deaf Experts by Experience Group to advise on hearing health research.

A focus on young people: Voice Up – a young people’s research advisory panel with approximately 70 members from diverse demographics, and representing every Borough of Greater Manchester – has been set up and included as part of the GenerationR network of Young People’s Advisory Groups.

Engaging numerous people: Our research-led engagement has held over 15 events and directly reached over 4000 people directly (and several hundred thousand more online and via social media) to raise awareness of our research, including opportunities to get involved or participate. Significant projects include: Breathtaking Lungs [21] (Box 3, Additional file 1); The Future in your Hands - a touring photography exhibition developed with musculoskeletal patients [22]; and the 100 Voices project [23], as well as multiple open days, engagement events in collaboration with creative, community and research partners across Greater Manchester.

Developing capacity for researchers: we have delivered training for 76 research staff, advised researchers on 16 grant applications and implemented a baseline survey of researcher training needs. By bringing NIHR-funded and Higher Education PPIE leads from across the North of England for a one-day workshop, and establishing a local forum for Cancer PPIE practitioners, we have stimulated networks and communities of practice to share learning.

Celebrating our research community – including our public contributors, researchers and creative partners. Our research community is our greatest asset and a highlight of Year 1 was a ‘tea party’ held for 72 people to say ‘thank you’ to our research community, in particular, our public contributors.

Beginning to understand the progression routes taken by everyone we work with – although this is at an early stage. We continue to document progression routes of all involved.

Pioneering demand–led and inclusion PPIE work, by developed relationships with over 40 community voluntary sector organisations across Greater Manchester. 5 projects have been delivered with young people from Wai-Yin Chinese Society, Ananna (a Bangladeshi Women’s group), Safe Ambition, Reform Radio [24], and #ThisVibrantThing festival. A successful collaboration has been established and funded by the Wellcome Trust, engaging and involving Jewish communities in pregnancy and placental research. A two-day Community Innovation event in July 2018, working with Greater Manchester Black and Minority Ethnic network. All will be reported on in due course.

Discussion

This paper sets out to: firstly, introduce a unique approach to working innovatively and inclusively across the fields of public engagement and patient involvement through a new ‘cycle’ model of professional practice. Secondly, it reports preliminary results that exemplify and demonstrate the utility, applicability and impact of the model. Thirdly, it explains the wider context of the strategic and collaborative approach undertaken by the Public Programmes team. Finally, we suggest that both the ‘cycle’ and the Public Programmes Team’s strategic and collaborative approach have the potential to be replicated and applied elsewhere. We believe that the collateral knowledge generated through our approach has the potential to benefit research, researchers, people, communities and health.

Testing the ‘cycle’ of engagement and involvement

The case studies present projects and their evaluation which positively address the success criteria associated with the ‘cycle’ model (see Methods) and therefore suggest that the model could present an effective way of bridging PE and PPI to foster more inclusive research. The case studies (Box 2, Box 3, Additional file 1), and other projects described in the Results section, reported:

  • Changes to research, for example through the establishment of a national research advisory group (YourRheum) including people who had taken part in #DesignforMSK; changes to research protocols through involvement (eg. [19]),

  • Increased diversity of public contributors: most of the public contributors who progressed from ‘engaged people’ (Fig. 2) to people actively involved in research, had never connected with health research before and represented communities and constituencies underrepresented in public involvement,

  • The value of creative approaches as ‘entry points’ to engagement and involvement. For example, at least two of the young adults in #DesignforMSK (who then progressed to members of YourRheum) describe that they would not have taken part in the project had it not had a creative element,

  • Increased knowledge, skills and confidence in PPIE from researchers and contributors, as witnessed by researcher comments,

  • Extended reach of PPIE and research, as demonstrated by the impressive numbers of people directly and indirectly engaged (eg. through social and mainstream media) by #BreathtakingLungs, #DesignforMSK and other projects in Year 1,

  • People and patients developing agency, confidence, health, research literacy and, in some cases, positive health outcomes. For example, participants in #BreathtakingLungs reported reduced social isolation and being able to breathe more easily as a result of the engagement activities. Reduced social isolation was a strong feature reported by the young participants in #DesignforMSK. This finding echoes a wider arts and health agenda linking cultural activities and public health (eg. [25]).

Embedding PPIE and inclusive research

At a more programmatic level, our evaluation (so far) and experience points to a growing culture change, embedding PPIE within research, and according it a high-level status within translational research infrastructure. The challenge remains to continuously ensure that different voices are supported to be heard, within reporting, executive and governance structures that are sometimes less flexible than specific projects. Another challenge remains in acknowledging, planning and building in the time and effort – in particular from researchers, with many demands on their time already – required for effective PPIE. Whilst our team facilitates this ‘on the ground’ and through our strategic, joined up and practical approach, researcher involvement is crucial and often compromised by other demands.

Shifting the emphasis of PPIE from research-led towards community-led will take time. A challenge for our Team will be in maintaining relationships with communities and organisations, understanding that trust requires continued engagement especially in the context of austerity and pressures on community organisations. The balance between developing trust and programmes of co-produced work, as well as delivering on research-led commitments, remains acute.

A strategic and collaborative approach

Working through strategic collaboration has enabled the Public Programmes team to operate as a financially self-sufficient, semi-independent organisation, underpinned and hosted by the Manchester University NHS Foundation Trust. Furthermore, the approach has successfully leveraged funding for joint PPIE initiatives across the range of research organisations partnered with the Public Programmes Team. Through this way of working and business model (which has the potential to build up financial reserves and streamline processes), the Public Programmes Team achieves a joined up approach to plan and deliver patient and public involvement and engagement at size and scale. This allows economies of scale and continuous improvement. For example, working across several research organisations with a unifying strategy, allows a strong presence, a ‘critical mass’ of multiple research groups at public and community events, that can be coordinated by one team. Working across multiple organisations further allows for effective shared learning and capacity development.

Going forwards, we are committed to reporting on and sharing our progress, through NIHR and funding and reporting requirements, through publications such as these and our less academic communications (e.g. YouTube channel) and events. We have been encouraged to disseminate our approach through publication by many including NIHR, even though we are not traditional academics. This is the start. We hope you enjoy it.

Conclusion

This paper outlines the approaches taken by the Public Programmes team at Manchester University NHS Foundation Trust – a team of public involvement and engagement specialists, embedded within translational health research infrastructure and delivery in Greater Manchester, UK – to innovate inclusive research, engagement and involvement, through strategic collaboration and practice. Our evolving practice and the beginning of its evaluation lead us to believe that our way of working is effective in: addressing our vision of making health research relevant and inclusive for everyone; embedding and joining up public involvement in a busy and fertile health research ecosystem; addressing our strategic priorities of diversity and inclusion, working with arts-led approaches, delivering gold standard evaluation and building capacity for engagement and involvement within researchers and public contributors.

Availability of data and materials

Not Applicable

Abbreviations

MBRC:

Manchester Biomedical Research Centre

MCRF:

Manchester Clinical Research Facility

PPIE:

Public and Patient Involvement and Engagement

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Acknowledgements

The authors would like to acknowledge and thank all the public contributors, creative practitioners and researchers who have contributed to the work presented in this paper.

Funding

This work was funded by the NIHR Manchester Biomedical Research Centre, the NIHR Manchester Clinical Research Facility and the Wellcome Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, the Department of Health or the Wellcome Trust.

Author information

BS and LH are co-Directors of the Public Programmes team, responsible for the team’s overall work and lead authors on this paper. AK and CW led the #BreathtakingLungs project. SW led the #DesignforMSK project. SP and KC led the YourRheum initiative. SI led the communities and inclusion work. JM, ER and OJ supported other elements of work reported in this paper. All authors read and approved the final manuscript.

Authors’ information

BS and LH are co-Directors of the Public Programmes team.

Correspondence to Bella Starling.

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The authors declare that they have no competing interests.

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Additional file

Additional file 1:

Case study - Summary of #BreathtakingLungs [21]. (PDF 782 kb)

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Holmes, L., Cresswell, K., Williams, S. et al. Innovating public engagement and patient involvement through strategic collaboration and practice. Res Involv Engagem 5, 30 (2019) doi:10.1186/s40900-019-0160-4

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Keywords

  • Patient and public involvement
  • Public engagement
  • Health research
  • Inclusion
  • Diversity