Patient & Public Involvement (PPI)

PPI Panel

The ESHCRU II virtual PPI Panel (the Panel) exists to provide a patient and public perspective on any aspect of the Unit’s programme of work. Learn more…

The Panel is virtual, because members do not meet face-to-face. Requests may include the following:

To raise emerging policy issues that require evidence.
To propose potential research topics.
To identify and frame research questions.
To review study proposals.
To identify implications of results.
To help draft, or comment on, lay summaries for research reports.
To advise on dissemination and impact of research findings.
To provide feedback and comments on our website.

Further details are available in the Panel’s Terms of Reference

Case Study: Wendy Milborrow

“I am a lay member of the ESHCRU Advisory Group. I was asked to join because of my experience as a carer, supporting my husband who has dementia.” Read more…

“During my time as a member, I have attended regular Advisory Group meetings; contributed to specific projects within the programme of work; provided feedback on written information aimed at a lay audience; and contributed to the preparation of funding proposals for research projects.

My involvement in all this work has been interesting and enjoyable. Attendance at meetings was a bit daunting at first – until I realised that I was not expected to understand some of the very technical work that is carried out! I have always felt welcome and supported and that my opinions have been listened to and respected.

As a lay person, I feel that my main contribution to the work of ESHCRU has been to offer a view on how the issues being researched affect real people, from my perspective as a carer and service user. When relevant, I have been able to share some of my experiences in navigating the system, to highlight difficulties and gaps in support as I have found them and to comment on health and care priorities as I see them, which helps to guide the direction of the research.”

Response: Anne Mason

“Wendy made a fantastic contribution to our previous programme of work!” Here’s just one example. Read more…

“GPs are paid to provide an annual health check for their dementia patients. Going into hospital can be a frightening experience for someone with dementia, and can trigger a downward spiral in their health. So we wanted to know – is this annual health check helping to prevent unwanted and unplanned hospitalisations?

Wendy was part of a larger group who helped us think about why unplanned hospital admissions happen. She explained that if GPs can’t respond quickly enough when someone’s health starts to deteriorate, they won’t be able to prevent a hospital admission. So we added measures of access to GPs to our analyses to address this important issue. Wendy also pointed out that some carers will be better equipped than others in negotiating support from the health and care system. So we added measures to our models to capture factors that affect people’s ability to navigate the system. Wendy’s words made a real difference to our research.”

Case Study: Kate Ripley

I became a Patient and Public Involvement (PPI) member of ESHCRU II when I took time out of my full-time job in public health to navigate my 87-year-old mother through diagnosis and care planning in her dementia journey. Read more…

I had worked in adult social care assessment for 10 years and public health Ageing Well for over 4 years and have always had an interest in research particularly the prevention of long-term conditions after working with people with life limiting illness. I also volunteered as Vice Chair on my Patient Participation Group at my local GP surgery, engaging with patients in order to get their voices heard.

Being involved in ESHCRU has been invaluable to me in helping me overcome a sense of loss of my work that I loved and the opportunity to continue to contribute to the research and the health and care agenda. It has encouraged me to keep learning and up to date with the latest research developments and to put forward the views of carers like myself and people living with long term illness. I feel that my work and caring experience can provide real insight, balance and a qualitative dimension to the workstreams, and is also important to my own wellbeing in providing me with a voice to represent patients and service users.

Since joining I have contributed to the PPIE strategy, promoted and raised the profile of PPI in research by doing a talk at an engagement event for researchers applying for funding. I have also reviewed research proposals ensuring PPI is sufficiently embedded.

I sit on workstream 1 & 3 and workstream 2 advisory groups where I am able to influence the direction of research and highlight the real issues people experience when accessing health and care. I feel I can provide the qualitative narrative behind the more scientific and technical aspects of research. For example, I explained that psychological or cognitive aspects of health are important influences on how well a person recovers from surgery, and asked the research team if their study outcomes measures captured these. When reviewing research proposals, I have pointed out where there are opportunities to examine health inequalities and differences between rural and urban areas.

I have been offered excellent support and some really interesting opportunities for which I feel immensely privileged.

Case Study: Nick Price

I joined the ESHCRU Programme Advisory Group in the summer of 2019. I brought no in depth understanding of the world of health economics as a discipline but, instead, a range of experience as an operative in and consumer of (personally and as a carer) the health and social care systems in the UK. Read more…

Early Days

My first direct experience of ESHCRU was a Programme Advisory Board meeting in September 2019. As things have turned out this has been my only face to face contact with the ESHCRU team – or, perhaps, diaspora.

I very much enjoyed the meeting and the ‘challenge’ of grappling with the world, language and mechanics of health economics. I found the less technical / data-based presentations more accessible and only ‘lost the thread’ a few times during the meeting.

I found the people there to be very friendly and welcoming and the comfortable atmosphere was conducive to relaxed questioning and debate.

Initial Thoughts

The meeting prompted me to think about where health economics fits into the overall system of understanding healthcare need and demand and providing appropriate policy options.

I wondered if there was merit in a ‘whole systems’ view here whereby quantitative and qualitative data gathering and dissemination sit together in assembling knowledge and framing policy options.

I submitted the following graphic explaining my thinking to the ESHCRU team:

Next Steps

In 2020, I joined a newly established ESHCRU II Advisory Group supporting members of the ESHCRU II team in York commencing work on a separate health inequalities research project, also funded by NIHR.

I was invited (by Nils Gutacker) to assist in the finalisation of a research brief as part of the funding application. The project aim was to develop methods to help policymakers decide how to pay GPs so that people in more disadvantaged communities benefit more from the NHS.

My brief was to review the draft research brief wording to assess:

Whether the text was easy to understand,
Where wording was overly technical and could be improved
That it ‘made sense’ overall.

I produced a simple critique of the presentation of the brief together with some suggestions for editing to optimise its ‘user friendliness’.

Conclusion

Overall, I have been on a steep learning curve in health economics on which I have sought to absorb the material and understand the principles and processes of this field of research, whilst hoping to bring to the work some personal social experiences of the impact of the health and social care systems on people in the UK.

PPI Overview

Our aim is to involve patients, carers and the public in a meaningful way by including them as members of all our Advisory Groups. We have 4 PPI members on our Programme Advisory Group and 3 PPI members on our Workstream Advisory Group.

The Groups oversee and advise on our programme of work. Public members offer a patient / public perspective and work with other members of the Group to:

Identify and frame our research questions.
Direct the focus of investigations to key issues of importance to service users and the public.
Identify implications of results for patients, service users, carers and the public.
Advise on how to disseminate the findings of our research.
Propose potential research topics for our new programme.

We also have a PPI Panel of whom we can ask questions in a more responsive, informal way.

Useful Documents

PPI Panel’s Terms of Reference.
Programme Advisory Group’s Terms of Reference.
Programme Advisory Group’s Membership List.
PPI Payment Policy.
Privacy Policy.
Jargon Buster.
PPI Training Resources.
Public Involvement Strategy.

Technical Corner

To address problems facing the health and care system, the ESHCRU team undertakes quantitative research that uses sophisticated statistical techniques. We rarely use qualitative methods such as interviewing people, nor do we often collect data directly from patients or carers. Instead, our research generally relies on analyses of ‘big data’, that is large datasets containing many thousands or even millions of cases. Find out more…

The data we use come from administrative sources, such as hospital or GP records, or from major surveys or cohort studies undertaken by other organisations. Cohort studies contain information on a large sample of individuals, with data collected at regular intervals over a number of years. Though expensive to conduct, cohort studies can help answer many different problems with health and care – so they can represent good value for money.

All of this means we have no contact with the individual people whose data we are using. Indeed, one of the conditions of access to these datasets is that we are not permitted to even try to identify individuals!

The data we use relate to people’s lives but the public may be unaware or feel disconnected from how their data are used or what benefits their use in research can bring in terms of improving the health and care system. However, they have a right to know this and their support and buy-in are essential.

Involving patients, carers and members of the public in quantitative research brings both opportunities and challenges. Involvement is a good way of helping people appreciate the benefits that come from data-intensive research. But there are some challenges of involving the public with our research.

Recruiting the right people: ESHCRU is a programme of work spanning multiple projects, so who should we involve? It is quite straightforward to identify the right sort of people to involve when a study focuses on a particular health condition or age group. But in ESHCRU, our work more often covers broad populations with many different health and/or social care needs, and individual projects study different populations.
The ‘dismal science’: our research is about economics, so projects may examine issues that the public are unaware of or even uninterested in: for example, how health and care organisations function, how contracts are designed, or how providers are paid. Indirectly this sort of work can make a big difference to how care is experienced by very large numbers of people and also to the value for money delivered to the tax payers whose money funds such services. But engaging with the public on these topics may be more challenging than for clinical trials, for example, because the impact on society is less direct.
Communicating: the methods we use are often very technical and so explaining clearly what we did and what we found calls for excellent communication skills. It’s easy to lapse into jargon, and difficult to provide the right amount of detail. But if we don’t communicate well, we risk making people feel disengaged from the work and our research won’t benefit from their insights and experience.

The papers below all describe PPI in data-intensive research. They consider who to involve and why and how – and also, more controversially perhaps, whether. Several studies also discuss the skills researchers need if involvement and engagement is to be done well.

Why involve?

A 2019 consensus statement on involvement and engagement in data-heavy research urges researchers to see the public as part of the solution to ensuring that the research benefits society. Benefits include raising awareness of the value of such research, empowering the public to make decisions about how their data are used and shared, as well as bridging the gap between the research and the people whose data are being used.
In the context of clinical trials, involving patients can help them understand how statistics are used and why. Patients can also reality-check the relevance and meaningfulness of proposed outcome measures, based on their personal experiences.
Johnson and colleagues (2021) found that involving people in end-of-life research improved their study, which involved analysing existing datasets. PPI helped the research team to prioritise their research questions and work out what could and could not be answered, and provide real-life examples to illustrate findings.

Who to involve?

Hannigan’s 2018 paper considers the potential for and challenges of PPI in statistical research. Hannigan notes the difficulties of recruiting sufficient numbers of people, as well as representative samples of the population of interest. In clinical trials, important outcomes can be missed if good involvement is not in place at an early stage. Hannigan also underscores the need for research teams to have appropriate skills to facilitate PPI and build partnerships.
A ‘data safe haven’ is a secure place where data can be stored and accessed only by individuals with special training in how to handle data safely. Involving the public in the work of a data safe haven in Wales is described by Jones and colleagues. The organisation considers involvement of the public as a duty and has made it a strategic priority. A consumer panel composed of 16 members of the general public has been set up to advise on a wide range of topics including how to help GPs engage with data sharing, and the use of mobile phone data for research.

How to involve?

Kandiyali and colleagues (2018) discuss PPI in health economics research on children. Setting out case studies to show how patients and members of the public can be involved in cost-effectiveness analyses, the authors then draw out a number of potential benefits and recommend ways forward for future practice.
Researchers at Imperial College describe how they involved the public in a mathematical modelling study of ‘flu vaccination. Participants were offered a short training course on disease modelling and shared an online guide on how to read a scientific paper. At a one-day workshop, public contributors critiqued a draft journal article and commented on draft questionnaire surveys.

Whether to involve?

Oliver and colleagues (2019) sound a note of warning about “the dark side of coproduction”. Coproduction is a collaboration that involves stakeholders in the research process, though the term is used loosely and can be used to describe many approaches. Its aim is to make science more inclusive and democratic. Oliver et al argue that coproduction has potential benefits, but also potential risks and costs –that the latter are rarely considered. The authors argue for a more reflective approach to ensure coproduction is used where it can be most useful.

Skills required for researchers

A consensus statement outlines 8 principles for involving the public with data intensive health research. These boil down to being inclusive and accessible, having clarity of purpose and approach, ensuring communication is two-way, and doing it well: good governance, regular evaluation and keeping an eye on the end goal – producing an impact.
Communicating statistics to the public is tricky at the best of times, but is especially challenging when those numbers are about survival rates in children’s heart surgery. The NIHR’s Five-step guide to involving the public in communicating research emerged from work by Christina Pagel to provide parents with access to reliable information on surgical outcomes. Her aim was to develop a website explaining how survival rates are calculated, and what they mean and what they don’t mean. The guide explains how people were involved at each step and the differences their contributions made to the website. For example, parents wanted information they considered most important to be placed up front, and they helped choose the best words to describe statistical concepts.
Halle Johnson and colleagues ran a workshop to identify opportunities for meaningful involvement with palliative care research using big datasets. Explaining terminology was the essential first step, with a longer-term aim being to involve the public in supporting new data collections.
Several important steps are needed for meaningful public involvement in the work of a data safe haven. People need to feel welcome; be encouraged to ask questions; are provided with information in a digestible format; and given enough time to think through issues. Engagement, which a two-way process, can best be achieved by fostering respectful relationships. This means being inclusive of different types of people whilst taking account of each individual’s level of interest. It also means treating people as equals, and communicating clearly and openly.