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…
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.
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:
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’.
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.
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 virtual PPI Panel of whom we can ask questions of in a more responsive, informal way.
Involving patients, carers and members of the public in quantitative research brings both opportunities and challenges. Above all, it’s important that involvement is proportionate. The selection of papers below discusses who to involve and why, when and how – and also, more controversially perhaps, whether. Several studies comment on the skills researchers need to have if PPI is to be done well. Find out more…
- A 2019 consensus statement sets out some principles for involving the public with data intensive health research. The statement encourages researchers to see the public as part of the solution to ensuring that the research benefits society.
- Ailish Hannigan’s 2018 paper in Health Expectations 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 – an issue that is particularly important for clinical trials, where important outcomes can be missed if good PPI 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.
- Rebecca 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.
- 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 these 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.
- Kathryn 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.
- A blog by Dale Weston (Imperial College) describes how he involved the public in a mathematical modelling study. The researchers recruited interested individuals from a large panel of around 500 people, and offered them a short training course on disease modelling (though uptake was low). They also pointed people to an online guide on how to read a scientific paper. PPI members then attended a one-day workshop in which they critiqued a draft journal article, and commented on proposed questionnaire surveys.