Summary
This engagement process, led by NIHR, took place from March 2021 to June 2021. The aim was to produce clear actions and next steps to support NIHR’s plans to improve patient and public involvement, engagement and participation in health and care research (henceforth ‘the improvement plan’). In this report, we refer to patient and public involvement, engagement and participation as ‘partnership working’ or ‘working in partnership’.
In addition to a scoping workshop and pre-event survey, the engagement process centred on three events that brought together a wide group of stakeholders to collaborate, share learning, and produce a set of actions for NIHR and wider stakeholders to take forward as part of the improvement plan.
This report outlines the findings from this process and recommendations for next steps.
This collaborative process produced 16 priority actions to take forward as a part of the improvement plan, but across the entire process a number of overarching themes emerged:
- There is a need for more dedicated funding and resources for partnership working.
- Overall, people are not all fully committed to working in partnership, and do not all see the true value of this approach.
- There are inconsistent approaches to partnership working across and within organisations.
- There is a lack of spaces to connect and share on partnership working.
- Inflexible and complex payment processes are significant and persistent stumbling blocks to effective and successful partnership working.
- There is a need and appetite for training and clear pathways for progression and personal development on partnership working and beyond.
The recommendations from this report are structured around two key questions:
- What actions should the improvement plan focus on?
- How should the improvement plan take these recommendations forward?
What actions should the improvement plan focus on?
This engagement process identified 16 priority actions for the improvement plan to take forward and prioritise. These relate to the five improvement areas identified as priorities based on the findings from NIHR’s report Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research (2015).
16 priority actions
Improvement area: equality, diversity and inclusion
1. Providing sufficient funding and resources that support long-term relationship building with communities and sustained connections
2. Investing in underserved communities, working in partnership with and supporting community groups, and having community champions work within their own communities
3. Taking time to really understand the barriers to involvement and participation for public contributors and investing in actually overcoming them
Improvement area: standards, processes and incentives
4. Making payment processes simpler and consistent, so people are reimbursed fairly for their involvement
5. Providing enough time in the funding process for researchers to work with public contributors to develop their funding applications
6. Providing funding for partnership working at the start of the research process (pre-application/ pre-award) so long-term relationships can be built and embedded
Improvement area: digital engagement
7. Looking outside of NIHR: learning from, supporting and working with community groups and charities, to provide training and share best practice
8. Offering resources and support to provide IT help, equipment and training to those without access, for example through ‘digital buddies’, and use technology and platforms with usability at the heart
9. Taking a personalised approach to engagement to suit individual and group needs – having both face-to-face and digital options possible, and always providing paper copies of information
10. Talking to the people we’re engaging with and asking how they would like to be involved – understanding their needs and preferences to develop the right engagement methods
Improvement area: capacity building
11. Proactively build public awareness of partnership working and how people can get involved, and develop clear pathways and progression for everyone in this space
12. Nurturing and embedding the skills and values needed for successful partnership working from the start of research careers, such as at the Masters or post-doctoral stage
13. Working in true partnership with communities, patient groups, the community and voluntary sector by supporting them to build capacity and acknowledging and valuing their contribution
Improvement area: impact and learning
14. Developing a shared understanding of what we really mean by ‘impact’, which accounts for the nuances of partnership working, and the longer term, more intangible benefits, and providing guidance and expectations on how to capture this
15. Providing training and easy tools to collect feedback, capture impact and share learning, which is focused on improving rather than justifying the value of partnership working
16. Working with public contributors to define what impact looks like to them and to understand their journeys, and in doing so, identifying and improving the process of partnership working from their perspective
How should the improvement plan take these recommendations forward?
In taking forward the improvement plan, the following two areas emerged as core requirements of the approach:
- Progressing learning and sharing: cultivating spaces or networks for continued sharing and learning about partnership working
- Spreading ownership of the actions: enabling the wider public partnerships community to take action
Clear leadership from NIHR at the national level is needed to drive these two areas and underpin the improvement plan.
Terminology used in this report
Partnership working
In this report, we refer to patient and public involvement, engagement and participation as ‘partnership working’ or ‘working in partnership’. This is also commonly referred to and abbreviated to ‘PPI/E’ by some public contributors and the wider NIHR community. Where participants have used these terms or abbreviations in direct quotes, we have retained the language used by them.
Public contributor
Public contributor is an umbrella term used to describe members of the public who take part in patient and public involvement activities. We use the definition of 'public' to include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.
Staff
People who are working in salaried positions in participation, involvement and engagement (partnership working) are referred to as ‘staff’ in this report.
Introduction and purpose
What was the purpose of this engagement?
The NIHR public partnerships team worked with public contributors and other colleagues across NIHR to update and re-energise the priorities set out in the Going the Extra Mile report (2015). This work has produced an outline improvement plan for partnership working in research, focused on five improvement areas.
In 2021, NIHR commissioned Kaleidoscope Health and Care to support an engagement process designed to draw on the wisdom and experiences of people working, and/or involved in partnerships or health and care research. This process aimed to move from the five broad improvement areas to a set of specific actions and next steps.
Five improvement areas
The five improvement areas are:
- Equality, diversity and inclusion – ensuring we are working with a wider range of people, through inclusive approaches, and for everyone to feel able to shape health and care research in ways that work for them.
- Standards, processes and incentives – ensuring that NIHR enables and articulates expectations of meaningful partnership working, and facilitates the right processes and support (e.g. accessible recruitment, easier payments for people).
- Digital engagement – ensuring we make the most of modern technology to connect people and make sure we do not miss people who have less access to digital technology.
- Capacity building – ensuring people have the right resources, knowledge, skills and confidence levels for effective partnership working. This also means looking at how to fill gaps in capacity through, for example, training, guidance, and sharing learning.
- Impact and learning – ensuring we can learn from what works and what doesn’t, and having approaches to help us capture the difference and impact of our partnership working.
What did we set out to do?
This engagement process was designed around findings from a scoping workshop and built on existing knowledge and activity to date from across NIHR.
What we set out to do was structured as outcomes, design and questions
Outcomes
We began this process by asking, ‘what is it we want this engagement process to achieve?’. We identified two broad outcomes.
Outcome 1: Support the production of a clear plan for the implementation of improvement priorities
This means:
- The NIHR has a clear plan to deliver the priorities identified for improvement, including objectives, key areas for change, and leaders and resources allocated.
- The process and plan has led to impact, including an increase in the effectiveness of engagement across NIHR.
Outcome 2: Foster buy-in and ownership across the NIHR
This means:
- There is buy-in and ownership from all parts of the NIHR, increasing the visibility of partnership working and strengthening the business case.
- Diverse voices have been involved and shaped this plan.
Design
To develop the design of the engagement events based on the desired outcomes, we explored ‘what do we focus on in the events?’, leading to the following two areas of focus:
Focus 1: Produce a prioritised set of actions for implementation
- Hold a sequenced set of events, to build conversations in order to produce a prioritised set of actions, with a core engaged group.
- Build on what we already know, and on work such as Going the Extra Mile (2015).
- Focus the conversations on practical, clear questions.
Focus 2: Provide participants with a meaningful, enjoyable experience, that they feel they can influence
- Work with a core group across the events. Take the time to listen to participants’ current context and priorities, use surveys and phone conversations to gather insights outside of the events.
- Make this a genuine process and be clear on what is within scope for the conversations.
- Be clear as to next steps, what we hope colleagues do next in their work, and how we want to work with them going forward.
Questions
There were some specific questions we wanted to answer through this engagement process. Over the course of the process, and as we developed a greater understanding of stakeholder preferences and needs, these specific questions were iteratively refined.
Before the events, we wanted to know what people both understood and did not understand about the priorities of partnership working at NIHR. Each event had its own set of specific questions.
Event 1 - introduction and ideas generation
- Do the five priorities based on Going the Extra Mile (2015) resonate with you? What is missing?
- What does success look like in each priority area?
- What practically needs to happen to achieve success in each priority area?
Event 2 - prioritisation of ideas
- How can we refine the set of ideas generated?
- What are the priorities for action?
- What are the risks and barriers? How can we mitigate them?
Event 3 - next steps and how we’re going to work together
- In terms of our priorities for action, what are the next steps? Who will achieve them?
- What do you need to help you to achieve this?
- How will we assess our progress?
What did we find?
Drivers of effective and successful partnership working
The pre-event survey illuminated what stakeholders felt are the biggest barriers and contributors to effective and successful partnership working. These formed the foundation of our conversations on improving partnership working, and mapped on to the five improvement areas well.
Barriers to effective and successful partnership working
The most common barriers were dedicated capacity, funding and resources allocated to partnership working, and an overall sense that partnership working is not sufficiently valued across organisations and in research culture.
Capacity, funding and resources
There is a need for dedicated capacity, funding and resources to do partnership working well. Many respondents noted that it is just themselves or a small team leading on this area of work, often in conjunction (and sometimes in tension with) with other roles.
“I was 'asked' to take this on in March 2021 and I am struggling to devote enough time to this with all other workstreams and responsibilities." Survey respondent
"Access to funding pre-grant and lack of time and resources to reach out and enable involvement of more diverse experiences and perspectives.” Survey respondent
Attitudes, and lack of awareness and buy-in
There is a sense that partnership working is not valued consistently across organisations or within research – it is perceived to be seen as an afterthought, not impactful, or too difficult to do.
"Tokenistic attitudes from researchers who do not see the value of public involvement." Survey respondent
"The feeling that PPI, as it is practised, is still often stale and mandatory rather than exciting and genuinely transformative." Survey respondent
Lack of shared learning
There currently isn’t space enabled for sharing learning and best practice and collaborating with others.
"The competitive nature of research across the country stops liberal sharing of good PPI approaches in the research community." Survey respondent
Payment processes
Payment processes are felt to be inconsistent and complex, and finance systems can be inflexible, making it difficult to reimburse people for their contributions. It also makes working with people through community groups or charities more complex.
"Fees/expenses not being paid/covered or not being stated from the outset – it can be really awkward & hard as a public contributor to ask if you will be paid to do something." Survey respondent
Access and inclusion
Accessible and inclusive partnership working was important to many respondents. Remote and digital working has enabled access for some but brought about new barriers around technology access.
"The use of technical language can sometimes be intimidating. Limited resources, or not providing reasonable adjustments means some people may find it particularly difficult." Survey respondent
Understanding impact
From both staff in partnership working and public contributors, there was a sense that the impact of partnership working and the contributions are not shared well enough. Some note that there are insufficient tools or guidance on how to understand and assess good partnership working.
"Knowing whether or not my input has had a meaningful or useful impact… Sharing experience can be painful; it would mean a great deal to know if my contribution was worth anything." Survey respondent
Reaching the right people
Many respondents felt that the lack of diversity in those who are traditionally engaged in health and social care research is a barrier to the effectiveness and success of partnership working. In particular, people expressed difficulty in knowing how to reach the right people and groups.
"Difficulties in reaching out [to]/ communicating with 'underserved' communities and people. We need to build relationships and trust but how do we start this?" Survey respondent
Enablers to effective and successful partnership working
While many of the barriers highlighted the need for improvements in systems, processes and guidance, the enablers to effective partnership working largely focused on people and relationships. Respondents mentioned the importance of having effective systems, processes, and guidance to help build strong relationships and to facilitate working with passionate and enthusiastic people.
Investment in relationship building
Where the time had been taken to build and sustain long-lasting, genuine, and trusting relationships with contributors, this was a strong enabler of successful partnership working. In particular, it was stated that it is important to take the time to get to know public contributors as people. This means understanding not just what they contribute to the project, but also their needs and preferences, so as to be able to offer them the right support.
“Getting to know public contributors outside the ‘research arena’. In the virtual world, this meant having social catch-ups and coffee mornings so we get to interact and not talk shop." Survey respondent
Buy-in and engagement from leaders
The necessity of genuine buy-in to partnership working from senior leaders and line management was a common theme, as well as having access to support from the organisation.
"A fully engaged senior management team that is committed to fully accessible and inclusive practice and not tokenism." Survey respondent
Access to dedicated resource
Dedicated funding and resources are underlying enablers of good partnership working. In particular, having nominated individuals or teams who lead on this work is valuable, as they can manage and support their colleagues and organisation in this work in a more focused way.
"Having a team [...] which is dedicated to supporting and developing the public reviewer community, sharing the latest thinking on good practice and helping to tailor this to our programme." Survey respondent
Investment in public contributors
Showing that contributors and their perspectives are valued is important to respondents. This included having the means to pay public contributors, but also investing in them through offering training and support that suits their interests and motivations, and having strong two-way communication.
"Investing in the lay members, treating them as colleagues, really getting to know them and valuing their input. Finding out what motivates them and offering relevant training." Survey respondent
Working with an engaged group
Many respondents recognised the passion and hard work of the contributors they worked with being a driving factor to good partnership working. Having access to groups like this is highly valued.
"Active PPIE members with valuable input – especially during this time, they have been incredibly flexible when it has come to adjusting to online activities." Survey respondent
Joined-up approaches and partnerships
Collaboration, and effective sharing and partnerships across the research and wider community, is a strong enabler to plan activity in a coordinated way. Having the space to share, and strong communication to harness connections in the networks, is valuable.
"A joined-up approach from like-minded colleagues and patient contributors. Working together and listening to each other to plan for the future." Survey respondent
Clarity and guidance from NIHR
Clear messaging about the value of partnership working and support to make it happen from NIHR is important for both getting buy-in at organisations and to seek clarity for public contributors to understand the nature of the work.
"Clarity has been the biggest contributor – there's a lot of vagueness around PPI and it certainly helps for lay members to understand the landscape as that helps them understand the nature of the service we provide." Survey respondent
The five improvement areas
Introduction
In the pre-event survey, we also gained insight into respondents’ initial views on the five improvement areas that had been highlighted as important topics. Generally, respondents felt that these areas were important, however, a number of other key areas for improvement were highlighted that respondents felt were missing.
The five improvement areas are set out below.
- Equality, diversity and inclusion - ensuring we are working with a wider range of people, through inclusive approaches, and for everyone to feel able to shape health and care research in ways that work for them.
- Standards, processes and incentives - ensuring that NIHR enables and articulates expectations of meaningful partnership working, and facilitates the right processes and support (e.g. accessible recruitment, easier payments for people).
- Digital engagement - ensuring we make the most of modern technology to connect people and make sure we do not miss people who have less access to digital technology.
- Capacity building - ensuring people have the right resources, knowledge, skills and confidence levels for effective partnership working. This also means looking at how to fill gaps in capacity through, for example, training, guidance, and sharing learning.
- Impact and learning - ensuring we can learn from what works and what doesn’t, and having approaches to help us capture the difference and impact of our partnership working.
The key topics that respondents felt were missing from the improvement areas were:
- awareness building and training to show the value of partnership working
- developing long term relationships with communities
- setting clear objectives
- supporting public contributors, aftercare and communication with public contributors throughout and after their contribution is made
- building strategic partnerships with different groups
- strong and clear leadership
- data, privacy and artificial intelligence
Prioritising the improvement areas for discussion
To make best use of the time we had together in the events, we wanted to understand the interest in each improvement area to help us to design the sessions.
We asked participants to select the three most important improvement areas to discuss in these events.
Equality, diversity and inclusion was the most popular area to discuss, with 90% of participants choosing the area in their top three. This was also reflected in each event, where this area was consistently the most selected discussion topic.
This was followed by impact and learning (68%), capacity building (63%), standards, processes and incentives (50%), and digital engagement (30%).
Overall, there was general interest in all the improvement areas, so we continued to use all of the five areas to structure the rest of the conversations.
The five improvement areas: ideas for action
Over the three events, we explored the issues underlying the improvement areas, and produced a refined, prioritised set of ideas to create impact in each area, as well as identifying specific actions to take together.
Equality, diversity and inclusion
Participants felt that the area of equality, diversity and inclusion was an issue for many reasons. Underpinning many conversations was that this is a systemic issue that is reflected across society, but there is a role for us (individuals, NIHR, and other health and care organisations and funders) to challenge it.
It was felt that there has traditionally been a ‘top-down’ approach, but there is a need to truly reach out to communities and form relationships within all ‘seldom heard’ communities, and show that everyone’s voice, knowledge, or experiences are truly valued.
There is a need for a greater range of ways to be involved that is driven by the people involved, not set externally or by researchers. It was also reflected that there is a lack of a coordinated approach to this, as well as the need for dedicated time, resources and funding to do this well.
Ideas for action generated on the topic of equality, diversity and inclusion
The first three areas listed below were seen by participants to have the greatest likely impact.
- Providing sufficient funding and resources that support long term relationship building with communities and sustained connections
- Investing in underserved communities, working in partnership with and supporting community groups, and having community champions work within their own communities
- Taking time to really understand the barriers to involvement and participation for public contributors and investing in actually overcoming them
- Providing training led by people with protected characteristics to develop a better, deeper and shared understanding of what we mean by equality, diversity and inclusion and ways we can remove barriers
- Having individuals dedicated to partnership working and supporting opportunities for career development for people within the communities we are serving
- Giving more decision-making power to communities, for example, by implementing a “Citizens’ Assembly” style approach – bringing a reflective sample of the population together to set the agenda and shape the conversations on issues that are important to them
- Investing in working with age groups not currently being engaged, particularly younger people and those aged 80+
- Digging deeper into the data to understand who is currently participating, where the gaps are, and building on this to measure change over time
- Providing the right incentives and remuneration for involvement – including improving payment systems as the effect on benefits is a barrier to involvement
Some suggested specific actions
Several specific actions were identified:
- Diversify senior leadership, such as by providing incentives and investment to encourage diversity and inclusion at senior levels
- Actively elevate the position of the public contributors on grant committees to ensure they are involved in decision making throughout
- Include a specialist in ethics on grant boards
- Provide training for ethics committees on equality, diversity and inclusion and partnership working
- Provide grants that accurately calculate the costs for the staff time needed for relationship building that isn’t tied into single research projects, to provide the time and resources to invest in longer-term relationships
- Fund equality, diversity and inclusion champions at NIHR level
- Provide a mechanism to actively value, encourage and resource research that reflects the priorities and experiences of those facing inequalities, and that enables the type of involvement that lets diverse voices be heard
Standards, processes and incentives
It was felt that there was variation in how processes, such as reporting requirements, are implemented, and there is a need for streamlining these across organisations. Payment processes were stated to be an important part of enabling good partnership working, but generally, it was felt that they were too complex and inconsistent.
There are larger structural issues that underpin the challenges with processes, such as organisational structures (e.g. universities) being inflexible and not enabling effective partnership working. It was also felt that generally partnership working is based on involving people in predefined structures, rather than shaping these structures through partnership working from the outset.
Ideas for action generated on the topic of standards, processes and incentives
The first three areas listed below were seen by participants to have the greatest likely impact.
- Making payment processes simpler and consistent, so people are reimbursed fairly for their involvement
- Providing enough time in the funding process for researchers to work with public contributors to develop their funding applications
- Provide funding for partnership working at the start of the research process (pre-application/ pre-award) so long-term relationships can be built and embedded
- Ask the right questions in the application processes to get researchers to think about partnership working from the start, and making this an essential part of the process
- Provide the space, resources and opportunities to share good practice and learning
- Senior leadership to proactively endorse partnership working to embed this into organisational cultures by showing its impact and value
- Providing ongoing standard training in partnership working that is flexible, co-productive, and accessible to all to embed this into the culture
Some suggested specific actions
Several specific actions were identified:
- Develop clear guidance for payments
- Build on good practice from other contexts and from within research, to create resources like short advice documents
- NIHR to provide leadership to actively address the issues around payments and benefits with HM Revenue and Customs, Department of Health and Social Care, HM Treasury and other bodies
- Avoid funding deadlines close to public holidays or school holidays
- Develop a national database to allow researchers to find community partners or public contributors, which can also support the identification of gaps in existing relationships and areas of most need
- Increase the overall funding for partnership working to allow time and money to develop lasting, genuine links with communities throughout the whole research process
Digital engagement
The impact of the pandemic and remote working was a key theme of participants’ responses on the topic of digital engagement, as this time has illuminated many underlying issues now digital engagement has become the norm.
It was felt the transition to largely digital working was a culture shock as building the relevant skills was not previously a priority.
Attendees stated digital exclusion is particularly important to this issue – not everyone has the same access to digital technology or services, or the skills to be able to engage confidently. It was noted that some people find working digitally stressful, especially if there are technology issues, which can affect confidence.
Particularly during the pandemic, though, it has been difficult to offer the right support without being face-to-face to help people get started or improve their digital capabilities.
Ideas for action generated on the topic of digital engagement
The first four areas listed below were seen by participants to have the greatest likely impact.
- Looking outside of NIHR: learning from, supporting and working with community groups and charities, to provide training and share best practice
- Offering resources and support to provide IT help, equipment and training to those without access, for example through ‘digital buddies’, and use technology and platforms with usability at the heart
- Taking a personalised approach to engagement to suit individual and group needs – having both face-to-face and digital options possible, and always providing paper copies of information
- Talking to the people we’re engaging with and asking how they would like to be involved – understanding their needs and preferences to develop the right engagement methods
- Holding workshops for people to learn how to engage digitally, and train staff on digital partnership working
- Provide a space to share best practice, resources and training on digital engagement, and a way to connect locally to reach people who are excluded
Some suggested specific actions
Several specific actions were identified:
- Create an ‘inspiration pack’ signposting good and creative practice on digital engagement
- Create a platform to share resources and learning
- Set up a task group to look at how we can learn from others on digital engagement
- Partner with local libraries for support, particularly on digital exclusion and printing
- Specifically ask contributors how they want to continue to be involved, and what support they need
- Provide consistent training for both researchers and public contributors on how to engage or work digitally
Capacity building
Participants felt this was an issue because partnership working and building relationships need sufficient time and resources to do well.
For many, partnership working is an add-on to existing roles, therefore its priority level can fall. It can also be seen as a ‘box-ticking exercise’ and in many circumstances, only minimum training or support for researchers is provided. It was noted that capacity issues are often hard to identify, due to the unpredictability and variability of projects.
It was also felt that there has been a ‘top-down’ approach to partnership working and that there is a need to empower and support people to be involved throughout the process.
Ideas for action generated on the topic of capacity building
The first three areas listed below were seen by participants to have the greatest likely impact.
- Proactively build public awareness of partnership working and how people can get involved, and develop clear pathways and progression for everyone in this space
- Nurturing and embedding the skills and values needed for successful partnership working from the start of research careers, such as at the Masters or post-doctoral stage
- Working in true partnership with communities, patient groups, the community and voluntary sector by supporting them to build capacity and acknowledging and valuing their contribution
- Developing a shared understanding of what true partnership working looks like, standardised expectations and requirements, and the impact we want to make
- Providing standardised and accessible training for researchers, staff and public contributors and members of the public to learn how to work in partnership
- Providing adequate and specific funding for training and staffing for partnership working
- Creating opportunities for regional collaboration to share learning and resources and support one another with engaging with local groups
- Recognising and rewarding good partnership working, and actively showing that it is valued and valuable
Some suggested specific actions
Several specific actions were identified:
- Simplify application forms for public contributors – only ask the essential information and why people want to get involved
- Actively talk to organisations who are getting this right – have a space to share learning and good practice
- Strengthen the conditions for funding around partnership working
- Develop a map, menu, or pathway that clearly explains how to get involved and the opportunities available
- Work with libraries and GP surgeries in particular to promote NIHR and opportunities to get involved
Impact and learning
An underlying reason that impact and learning is an issue is that there isn't currently a shared understanding of what impact looks like.
It was noted that impact will look different on different projects and to different people, which will lead to variation. But in particular, it was felt that there aren’t standardised processes for capturing and reporting impact and learning across organisations.
Reporting is currently taking place, but more needs to be done to ensure the right information is being collected and assessed consistently.
Furthermore, working in partnership is not seen as an important outcome in itself, and so it may not be captured in the focus of the research.
It was noted that there is also a reinforcing cycle: assessing impact and learning requires resources and funding – but to acquire this, we need to show the value of partnership working.
Ideas for action generated on the topic of impact and learning
The first three areas listed below were seen by participants to have the greatest likely impact.
- Developing a shared understanding of what we really mean by ‘impact’, which accounts for the nuances of partnership working, and the longer term, more intangible benefits, and providing guidance and expectations on how to capture this
- Providing training and easy tools to collect feedback, capture impact and share learning, which is focused on improving, rather than justifying the value of partnership working
- Working with public contributors to define what impact looks like to them and to understand their journeys, and in doing so, identifying and improving the process of partnership working from their perspective
- Creating spaces to share and celebrate success and the value that partnership working has made, as well as safe spaces to explore learning and improvement, beyond impact reports
- Increasing overall funding and directly funding community groups to engage with researchers throughout the whole research process
Some suggested specific actions
Several specific actions were identified:
- Actively ensure that impact is framed around learning, rather than proving partnership working is worthwhile
- NIHR to show and evidence why they want impact, what they will do with it and how they define it
- Create a forum to share learning about showing the impact of partnership working well, such as a prize or another space to learn from good examples
- Make training on partnership working mandatory, and incorporate how impact is shown
Other findings
How to continue the conversation
For some participants, the conversations we had throughout the process were very new to them, while others have been having similar conversions or asking similar questions for a long time. However, overall, there was general enthusiasm for bringing a group of this size together to explore the issues and collaborate in this way. Many participants reflected on how many people are working in this space and the importance of creating opportunities for people to share, collaborate and make change.
There was a strong desire from participants to keep the conversation going and maintain the momentum felt during the events. In particular, participants were keen for:
- Updates on progress and regular communication: NIHR to follow up with the group with updates on how the conversations have been acted upon and what is happening next, for example through a newsletter, meetings or other updates.
- Reporting on progress and actions: Some participants were keen for more formal reporting on the actions with the group and the wider public.
- Follow up workshops: Some participants are particularly eager for more meetings or workshops to follow up on these conversations, as a space to review action and keep people involved.
- Hearing more from public contributors: Many people reflected that the public voice could have been stronger in these conversations and that it’s important that public contributors are at the centre of any follow-up work.
- Set up groups on the improvement areas: Many participants were keen to continue to be involved in particular areas, to help move the conversation forward and to put recommendations into action. Task groups were suggested as a way to oversee actions.
- Commitment to action: Underpinning the desire for the conversation to continue, was the importance of genuine action and change as a result of the conversation - it’s about action not just more talking.
Some of the reflections from participants are below.
"The fact that we have been asked to contribute to this very important topic and aren't just being handed something to implement." Reflection on Event 1
"The sheer numbers of people involved and enthusiasm to be part of it." Reflection on Event 1
"Still lots of conversations to be had. Let’s keep talking." Reflection on Event 2
Other observations
In addition to the findings from the discussions across the events, there were a number of other observations that cut through the process.
Language and terminology
Throughout the events, it became apparent that there was not one set of fixed terms or language used for partnership working. The use of terms like ‘patient and public involvement and engagement’ can be exclusionary, and isn’t always comprehensive enough to cover all the facets of partnership working (such as participation). It was a risk that language and terminology could become a significant stumbling block for the conversation. Agreeing and aligning around a shared understanding and language is particularly important in this space.
In the second and third events, there was a more explicit push to avoid jargon or acronyms and there was a sense of shared responsibility to make the events accessible and inclusive.
Involvement of public contributors
Several participants reflected on how valuable and important it was to have public contributors in the room for these conversations. Others felt that there should have been many more public contributors and for their voice to have been more prominent in the discussions.
Only a small proportion of respondents to the pre-event survey and registration page identified themselves as public contributors.
Interaction of improvement areas
As explored in this report, many of the conversations and ideas generated in particular improvement areas related to those in other areas. There are common themes among all areas, including payment processes, lack of space to share learning, and the need for more clear guidance and standards from NIHR, for example. The improvement areas interact and reinforce one another, and it’s clear that there are several consistent issues that need to be considered as a whole, rather than with the angle of distinct improvement areas.
Equality, diversity and inclusion
It was clear from the sessions that there was a lot of appetite to explore the area of equality, diversity and inclusion in particular. It was always the most selected discussion group to join in the events, and it was clear that this improvement area really resonated with many participants.
Overarching themes
We used the five improvement areas as a tool to structure our conversations in the events. However, there are some cross-cutting issues that arose across the improvement areas, and some common challenges or stumbling blocks that were consistently driving conversations. If we move beyond the structure of the five improvement areas, we can see some key messages and overarching issues.
Need for more dedicated funding and resources
The need for an uplift in the overall funding for partnership working was prominent across many conversations. In particular, the need is for funding and resources dedicated specifically to partnership working.
Payment processes
The complexity and inflexibility of payment processes is a common challenge that has pervasive effects across partnership working. In particular, there are significant issues around paying public contributors who receive benefits, which has knock-on effects on the diversity of people who engage in this work.
Inconsistent approaches
The lack of clear guidance and standards was a common theme. There was appetite from participants for NIHR to take clear leadership in setting the direction, standards and processes of partnership working, as well as setting what ‘good’ looks like.
Lack of spaces to share
There is currently a lack of sharing of best practice and spaces to collaborate with peers, and indeed some feel that there is instead a culture of competitiveness in research culture. There is a need for space to share best practice, connect with others and collaborate over common issues.
Need for training and clear paths for progression
There was appetite for consistent training in the skills associated with partnership working across stakeholder groups and stages of the research career, including training for public contributors. Embedding these skills into research career paths is also important for making a cultural shift that puts partnership working at the heart of research.
Some people don’t see the value in partnership working
Across research and wider society, there is a feeling that partnership working and the contributions of the public are not always consistently and genuinely valued, or are seen as an ‘add-on’. There is a need for awareness building and evidence gathering of its true value. As a funder, NIHR has a significant opportunity to use its leverage to make partnership working both the norm in research, but also truly valued, such as by making it a mandated part of funding applications.
Conclusions and recommendations
Through this rich and wide-ranging series of conversations, we believe that there are a number of key messages that can be drawn out in conclusion, as well as a number of recommendations.
This process has produced a set of ideas and some specific actions for next steps to improve partnership working, generated by a wide group of key stakeholders. The next challenge is to translate this into a set of actionable steps that speak to NIHR’s circumstances, stakeholders and wider ambitions and, importantly, will realistically achieve change. Some of the actions speak to work already ongoing by NIHR and colleagues, and sharing progress in these areas will be important. It’s important that the next steps are transparent, co-designed with stakeholders and fed back to those who have contributed in this process. This will include understanding what is clearly within the remit of the NIHR CED team, wider NIHR stakeholders, or the wider community, and where further conversations are needed to determine who owns the actions.
A key part of this process was to secure buy-in to changes and to develop a sense of ownership over the process and actions from stakeholders. Overall, there was enthusiasm from participants to help further the improvement of these areas and continue to be involved. It’s important to harness this appetite and goodwill, especially while there is momentum from the events. In particular, setting up small, focused task groups of people who are interested in each improvement area could be a way to have more in-depth and focused conversations and, crucially, build a sense of ownership of the actions and accountabilities. In further conversations, it’s essential that the public voice is at the centre, and that any engagement models the type of partnership working that encompasses NIHR’s values, standards and best practice.
There is a lot of appetite from participants to have an open space to connect with others to share experiences, learning and best practice on partnership working. NIHR CED are in a good position to harness this desire to collaborate and be a central ‘broker’ of these relationships, such as by creating and supporting a learning network for people working in public and patient involvement, participation and engagement.
There is a general sense that participants are looking for clear leadership from NIHR to not only set standards and consistent processes, but to also take a significant role in awareness building of partnership working across research and wider society, and setting a cultural tone that truly values partnership working. As a new centre, the NIHR CED is in a good position to use its leverage and influence for wider awareness building across research and wider society.
How to cite this report
NIHR, Next steps for partnership working with patients and the public: Engagement report, 24 September 2021 [URL], (Accessed on: [DATE])
Appendix 1: What did we do?
The engagement process was formed of three stages: a scoping workshop; a stakeholders and pre-event survey; and the series of three events.
Stage 1: Scoping workshop
On 12 March 2021 we brought together a small group of people who are particularly engaged with the improvement plan for a scoping workshop to co-create the engagement process.
We discussed what we wanted to achieve, how we can focus and structure the conversation, and the specific questions we wanted to answer.
The findings from this workshop were used to define the scope, purpose and aims of the engagement process, as well as inform the events’ design.
Stage 2: Stakeholders and pre-event survey
Participants were invited to take part in this programme by the NIHR CED team. They included staff and public contributors from NIHR coordinating centres, funded research programmes, centres, schools, and research funders outside of the NIHR. Stakeholders were invited to extend the invitation to others who they felt would bring useful insight.
As part of the registration process, stakeholders were invited to respond to a short survey to share their initial reflections on the discussion topics, to inform the shape of the events and to ensure that people who could not attend the events could have their perspectives included in the discussion.
We hypothesised that the five improvement areas were likely to be significant drivers of effective and successful partnership working, as this was based on evidence from Going the Extra Mile (2015), but we wanted to ensure we provided enough space for participants to share other drivers and factors.
191 people responded to the survey, of which 97% (185 people) had registered to attend one or more of the events.
Respondents came from a range of stakeholder groups, including researchers, clinical roles, and public contributors. The majority of participants were working on patient and public involvement and engagement as part of their main jobs, with roles such as ‘Public Patient Involvement & Engagement Lead/ Manager/ Director’. Twenty-three people (12% of respondents) identified first as public contributors.
The survey
The survey asked participants the following questions:
- Reflecting on your own work, what has been the biggest barrier to effective and successful patient and public involvement and engagement?
- Reflecting on your own work, what has been the biggest contributor to effective and successful patient and public involvement, engagement and participation?
- Reflecting on the five improvement areas for prioritisation, is anything missing?
- Out of the five improvement areas, which are the top three most important to discuss in these events?
- What questions do you have about these improvement areas?
- What else would you like to share?
Stage 3: Events
From May to June 2021, we brought together participants for a three-event process to collaborate on improving partnership working across NIHR. The events built on one another, with a specific focus on:
- building on the conversations, experience and great work of those in the room
- generating a prioritised set of actions and agreeing how to implement them
- exploring how we will work together.
Event 1: Ideas Generation – 12 May 2021
Around 130 people came together for the first event, where we shared the current context and the overall process; began to explore the five improvement areas, specific ideas for improvement; and created a space where we are able to share what matters.
We asked the following questions:
- Why do you think this improvement area is really an issue?
- If there were no limits, what would we do to solve these issues?
Event 2: Refining and prioritising our ideas – 26 May 2021
At the second event, around 110 people joined to review and build on the previous event’s insights and begin to refine ideas into practical and prioritised steps and actions.
Presenting the ideas generated in the previous event, we asked:
- How can we refine and improve the ideas generated in Event 1?
Event 3: Working together to achieve impact – 8 June 2021
Around 116 people came together for the final event to further refine and prioritise the ideas to develop specific actions and explore how we’ll continue to work together.
Building on the refined ideas, we asked:
- Reflecting on all the refined ideas, which would have the most impact?
- What’s the next step? What actually needs to happen to achieve this?
- How can we work together and keep the momentum going?
- How the programme design adapted
This programme design was iterative, responding to the needs and preferences of the audience, the purpose and context. We sought feedback through the pre-event survey (to incorporate into the planning); during the events; and through post-event feedback and other conversations with participants.
The key ways in which the design iterated during the course of the programme are outlined below.
Structuring the conversations
We wanted the programme to have the right balance between building on work to date and not duplicating other conversations, and the opportunity to have conversations with a fresh perspective, rather than having a rigidly set agenda. The improvement areas developed from Going the Extra Mile (2015) were one tool we could use to structure the conversation.
We used the pre-event survey to understand how best to structure the conversation, particularly asking people what was missing and any questions they had. Overall, it was felt that the five improvement areas were a useful tool to structure the conversations.
Responding to high attendance levels
This programme was originally scoped to engage with a smaller group of stakeholders, but we also wanted the sessions to be open, and encouraged invitees to extend the invitation to their networks and bring in people they felt would bring useful insight. The level of interest was higher than anticipated. Overall, 191 people responded to the pre-event survey and expressed interest in the programme, and across all events over 100 people joined each of the events.
Due to the higher than expected attendance numbers, we adapted the event design between the first and second events to ensure that we could have the most productive and psychologically safe conversations, even with a larger group. We brought in extra breakout group facilitators to keep the groups smaller and more intimate, and to ensure that everyone had a chance to have their voice heard. In particular, the Equality, Diversity and Inclusion discussion groups tended to be the most oversubscribed group, so we ensured that we had enough facilitators to cover a number of these groups.
Responding to variation in experiences and preferences
Participants joined us from a range of roles and levels of experiences and interest in the topics and each had their own preferences and needs for this sort of engagement. It was essential that this programme created a safe space for everyone to have their voice heard, no matter who they were.
To account for different needs and preferences, we adapted the events based on feedback, such as by underlining the need to avoid using jargon or acronyms that can be alienating. Smaller discussion groups meant that the conversations could be more open and more voices could be heard in the events.