Friday 1 December 2023

Getting creative to make research more accessible and inclusive

Posted by Victoria Bartle, Fuse Public Partner

We were throwing balls of wool around, picking picture cards to describe ourselves and having a thoroughly inspiring time. This was not your typical research conference!

It was day one and keynote speaker Pam Burnard was encouraging us to challenge the system using creative methods to subvert common assumptions.

Many of the researchers at the International Creative Research Methods Conference in Manchester are independent, not linked to a specific university or funder and this allows them to approach research from a variety of unusual and unfamiliar angles.

The conference is the brainchild of Dr Helen Kara: independent researcher, author, teacher, speaker and creative research methods (CRM) expert. Helen’s vision was to bring together the global CRM community to share knowledge, promote understanding, enable networking and have fun!

After the first day's keynote, I went to see Nicole Brown, a researcher looking at fibromyalgia, a condition that I also have. She had asked people living with fibromyalgia to collect objects to describe how the condition made them feel. One person had taken a photo of her chair - a really comfortable armchair, with a blanket, a table beside it holding drinks, snacks and distractions. This could have been a picture of my own living room! Due to chronic pain and fatigue I have what I call my 'nest'. I have reclining sofas with a side table with all of my remotes, chargers, creams, spare meds, thermostat, drinks, snacks, book, switch, lip balm (etc.) just so that everything I need is within reach and I don’t have to move too much or cause myself too much pain. I found the picture really impactful and saw the potential for objects, artwork and abstract thinking to be able to describe conditions like fibromyalgia which is extremely difficult to explain to someone who doesn’t have it. Using objects as data to assess and evaluate was really interesting and a methodology that I wasn’t previously aware of.

We were then given the task of picking some cards to describe ourselves as researchers.

These are the lego cards I chose to describe me during the sessions by Nicole Brown, who works with objects as data in research.

The skydiver because I feel like I just ask to do things and hope for the best, the singer because I like to present and talk about PPI (Patient and Public Involvement) in research. 

Black widow because she’s a superhero and fights for people who can’t and Rocket because he’s been made up with tech and I felt like he’s a disabled superhero :)

Jargon buzzing

On day 2 the Lawnmowers Theatre Company, run by and for people with learning difficulties, brought out jargon buzzers which were amazing! The characters pressed the buzzers every time someone used a term or word that they didn’t understand. I really want to use these in PPI meetings in the future, but we might not get anything done having to explain all the acronyms and research language that is often used!

Making a 'zine'

I didn’t know anything about zines and wasn’t aware of the Madzine project to help people with mental health conditions to explain how they feel, get things out and be creative. The session was really interesting giving us some history on zines before we were able to create our own. I made one about a project that I have been working on using some paper with stars on to represent the PPI Group members. A black page for accessibility as we all had different barriers to involvement and some of them were difficult to address, hidden or unknown. Some of the zines that they showed us were amazing: creative, visual, unusual, thought provoking and touching. They plan to create a mobile Madzine library that tours around the country so that people can read the zines and share in the experiences of the creators to increase awareness and understanding of living with mental health conditions.

Board games, rockpools and podcasts  

Kath McGuire (University of Exeter/NIHR School for Public Health Research), led our session talking about working with creative methods, public involvement and research dissemination. I briefly introduced the Fuse podcast and explained the collaborative approach to creating it. People were then able to take a look around the room at the variety of creative outputs that we had brought with us, and a video about how we have creatively communicated research in Fuse (see below). We had a snakes and ladders game to be used with PPI groups, or groups of researchers to evaluate their projects: snakes were barriers and challenges and ladders were successes and wins. We also took posters created by Fuse researchers showing their project results (Emma Adams) and Kath had a Blue Health Rockpool from another project. We took questions and explained how we created the podcast, what its impact had been and answered lots of technical questions about equipment, hosting and distribution. Hopefully accurately!

Attending the conference really broadened my view of research and public involvement. Lots of researchers at the conference felt that by making their work more creative it made it more inclusive. By reducing or removing established barriers to involvement such as language, terminology, education level and academic preconceptions they were able to engage with a wider, more diverse group of people. They could still be academically rigorous and produce research that stands up to peer review and meets publication standards whilst including more people, accessing people with appropriate lived experience of their topic of study and making involvement engaging, interesting and fun!

I have come away from the conference wanting to make Patient and Public Involvement meetings more creative, use games and objects to describe feelings and opinions, implement the jargon buzzer and design engaging dissemination methods that are relevant to the target audience of the study, drawing on the skills of the researchers and PPI teams.

A special thanks to Kath Maguire, Daniel Mutanda and Heather Boult (University of Exeter/NIHR School for Public Health Research), and the Fuse colleagues: Lesley Haley, who helped me with the podcast aspect of the workshop 'market place'; Ella Anderson for preparing the workshop activity; and Mark Welford for producing the Creatively communicating research video that we used in the session.

Friday 10 November 2023

What is the best way to reduce the amount of meat we eat?

Posted by Jack Hughes, PhD Candidate in Behavioural Science; Mario Weick, Professor of Behavioural Science; and Fuse Associate Milica Vasiljevic, Associate Professor of Behavioural Science, from Durham University

The science is clear that eating meat can be bad for our health; eating meat has been linked to an increase in cardiovascular risks, diabetes, stroke, cancers, and even dementia. Meat is also bad for the planet, with the livestock industry being estimated to be responsible for up to 15% of greenhouse gas emissions. Eating meat is also surprisingly closely connected to the risk of pandemics, with zoonotic diseases (caused by harmful germs that spread between animals and people) much more easily spread from eating animals.

Governmental policy and legislative choices play an important role in our excessive meat consumption. The Committee on Climate Change has recommended a 20% reduction in UK meat consumption by 2030 if we want to hit our net zero targets. Additionally, the Department of Health and Social Care recommends eating no more than 70g of meat a day, but average meat consumption in the UK is closer to 90g. So, what is the best approach? Do we advocate for a ‘nanny state’ that bans meat or imposes hefty taxes? Or do we advocate for a removal of all subsidies for meat farming and just let the market and people decide how much meat we consume under the hopes that awareness of the dangers of meat will drive down consumption?

There are of course significant problems with both approaches, but maybe there is a third option. One that can be applied not just to meat but to all society’s destructive large-scale behaviours, from alcohol to tobacco to ultra-processed foods to sedentary lifestyles.

In 2003 Richard Thaler and Cass Sunstein coined the phrase Libertarian Paternalism. Essentially arguing that the best way to produce policy is to design interventions that change behaviour without affecting people’s right to choose. So, you can still eat as many steaks as you like but policy will build an environment that unconsciously discourages eating an excessive amount. This idea could be argued to balance individual and government responsibilities, the government is nudging people to healthier choices, but the individual still gets to make the final decision.

For example, in a recent study of ours we found that sticking a graphic warning label (similar to those you see on cigarettes) onto meals could reduce the amount of meat chosen. Not only were the labels effective, leading to between a seven and 10 percent reduction in meat meals chosen, but the idea of introducing them as policy received fairly neutral responses. Which, let’s be honest, makes it more popular than most policy proposals!

When we look at recent research we can see that a variety of interventions have shown promising effectiveness on reducing meat consumption. Whether changing the ratio of meat to non-meat meals on offer, making meat meals less appealing by using less flattering descriptions, changing which meals appear at the top of the menu, or adding eco and warning labels to discourage the selection of meat meals, there are many ways of changing the environment without reducing the freedom of choice consumers ask for.

The question is though: is this approach the best or the worst of both arguments? Does Libertarian Paternalism thread the needle between governmental and personal responsibility? Others might say the approach is too hands off, or too hands on. If we accept that as a society we would benefit from eating less meat, which policy strategy do you support? The ‘nanny state’, the free market, or the libertarian paternalist approach?

The paper described in this blog-post can be accessed here:

Hughes, J. P., Weick, M., & Vasiljevic, M. (2023). Impact of pictorial warning labels on meat meal selection: A randomised experimental study with UK meat consumers. Appetite, 190, 107026.

Friday 3 November 2023

Should researchers act as disruptors?

Learning from the Dutch Academic Collaborative Centres

Posted by Peter van der Graaf, Associate Professor in Public Health & AskFuse Research Manager, and Mandy Cheetham, Research Fellow, from Northumbria University

While Storm Babette was wreaking havoc in the UK, a team of international delegates from Tranzo, scientific centre for care and wellbeing of Tilburg University visited Fuse. The visit focused on sharing learning on how to develop and maintain collaborative research partnerships between policymakers, health practitioners, communities and academic researchers.

Tranzo works in Academic Collaborative Centres (ACCs),which are sustainable partnerships between Tilburg University researchers and health and care organisations at both a regional and national level, including (local) government, third sector organisations and other research institutes. Tranzo hosts in total 11 ACCs, each with a different topic area: ranging from mental health, addiction, intellectual disability, to public health, youth, work & health, social work, care for older adults, and technological and social innovations for mental health. Each centre could be compared to a research cluster within Fuse and is led by an academic lead.

Despite the diversity in topics addressed in each centre, there are five underlying research themes:

  1. health-related behaviour, health care policies and societal influences; 
  2. social inequality and inclusivity; 
  3. mental health care, capabilities and recovery; 
  4. client perspective and participation, experiential expertise, and; 
  5. the (health) care system.

We could call these cross-cutting themes, and this is something Fuse could consider to integrate research across clusters. For example, translational research could act as a cross-cutting theme within Fuse.

The ACCs work in a similar way to Fuse: they connect science, lived experience and professional practice in the domain of health and wellbeing in the Netherlands through co-creation of research and knowledge exchange. These diverse sources of knowledge are valued equally. The principles of establishing long-term partnerships, based on equality, personal relationships will also sound familiar to Fuse members.

During the discussions on the day, we reflected on the importance and challenges of blurring boundaries and the need for ‘living bridges’ between partners organisations. Personal and trusted relationships and a commitment to reciprocity were identified as key for this, but also the need for systems that support and incentivise collaborative working. Unfortunately, universities and research funding programmes are often not set up for this way of working, or narrowly confine knowledge exchange to commercial spin-off companies.

Blurring boundaries, science practitioners, and the fourth-generation university

One of the ways in which Tranzo has tried to blur boundaries is by developing science practitioner roles, which are practitioners who take up a temporary post in universities to develop their research skills and act as boundary spanners for the knowledge they co-create within their practice organisations. These roles can be funded by the health and care organisations (in kind), as they recognise the importance of using more evidence to inform their decision making, by blending scientific knowledge with the knowledge and expertise from practitioners and service users. But sometimes also external funding (grants) is available for co-creation projects with science practitioners. Sometimes it is a combination of in kind and grant funding.

This makes science practitioners the flip side of embedded researchers in Fuse: instead of academic researchers co-locating temporarily in a practice organisation (for example a public health team in a local authority) practitioners spend time in academia, (partly) paid for by their organisation and supported by academics to develop their own research. Both roles help to blur boundaries and therefore science practitioners, which go beyond short-term placements, could be a valuable role to consider for Fuse.

To support this two-way traffic between researchers and practitioners, Tranzo has defined itself as a ‘developing towards a fourth-generation university’: an open network university reaching out and working on innovation with partners and citizens in an ecosystem. While first generation universities are focused on education and second generation universities combine education with research, third generation universities embrace entrepreneurship and try to market their knowledge. However, this happens solely within the space of the university (Steinbuch, 2016).

In contrast, fourth generation universities see themselves as only one space within a wider knowledge eco-system that requires close collaboration with all participants in this eco-system, including policymakers, professionals and service users, but also private organisations, arts and creative industries and international collaborations. Interestingly, the function of senior leaders within fourth generation universities is not to manage processes and structures, but to disrupt them. By disrupting existing practices, ways of thinking, and valuing and using different types of knowledge, more value can be created within the eco-system.

This perspective suggests an extended new role for Fuse: not only trying to be a bridge between different worlds (research and practice) or between different research infrastructures and networks within the North East and North Cumbria - Applied Research Collaboration (ARC), Health Determinants Research Collaborations (HDRCs), and Research Support Service (RSS) - but actively disrupting the status quo by building structures and processes to enable the creation of value through new collaborative partnerships and by stimulating multi-actor innovation.  

The new value that could be created in this way was clearly visible during the two site visits on the day, when we were welcomed by staff and community members at Edberts House and Gateshead Council. Embedded research roles have shone a light in Gateshead on the importance of control for residents, whose lives are often defined by a lack of control and influence over decisions affecting their lives. Research helped them to learn from a community-centred approach and use this learning to inform future planning. Council staff felt more confident and skilled to develop their own research and evaluations and implement solutions using this knowledge and the connections it helped to create with external partners.

It was inspiring to hear from our colleagues in Tranzo and share examples of our collaborative research. We had positive and fruitful exchanges about our experiences, challenges and shared interests including training in the craft of knowledge exchange, mentoring, engagement and impact. We look forward to continuing the conversations and would be interested in any readers' thoughts on how we can be more disruptive as Fuse researchers?

The view from Tranzo

Reflections from Prof. Dr. Ien van de Goor, Program leader Academic Collaborative Center Public Health, Tranzo and Tilburg University

On behalf of the Tranzo delegation, first of all many thanks for the very warm welcome on this stormy day in October. We were impressed by the introductions in the morning program on how translational research within Fuse is taking form. There were some very nice examples of how knowledge exchange can help to increase the flow of evidence into public health practice. And how push and pull factors in this process are taken into account in the Fuse knowledge exchange model. It was very interesting to hear about the co-creation process where research was translated in a book for children with parents suffering from addiction problems. As was the report on the relation between the Covid-19 pandemic and health inequities. Both resonated with Tranzo’s way of working: a diversity of themes and different ways of making an effort to do impactful research.  

Next in the afternoon program we were invited to Edberts House and the Gateshead Council. The way the voice of the community is a driving force in making Edberts House into a successful and valued community project, was impressive to experience (as was the lovely lunch offered!).

The program was finalised by meeting with representatives of Gateshead Council. The enthusiasm of the members from the Council's Public Health team and the Fuse researchers was striking and made clear that direct collaboration and co-creation between academic research and local authorities can contribute significantly to the uptake of evidence in public health policy and practice.

So for Tranzo it was a very insightful and inspiring visit learning about Fuse collaborating with practice and sharing our ways of working and trying to be impactful with scientific research. We really look forward to exploring further opportunities to collaborate, co-create and share our thoughts on finding ways to be disruptive (for the better!)

Friday 20 October 2023

Pulling the PINS on takeaways

Creating healthier food environments through the planning system

Posted by Callum Bradford and Claire O'Malley, Research Associates, Teesside University

Obesity continues to be significant health and social problem, especially due to its links with cardiovascular disease, diabetes, and certain cancers. One potential solution is to change our environment so we are better equipped to make healthier food choices, however, as you can imagine, this is easier said than done!

A tool that can be used to help shape the environment with help from Local Authorities is the Planning System. Many of our towns and cities are full of hot food takeaway outlets and unless you are made of stone (or perhaps a public health researcher?), there will come a day when your motivation is low and you don’t have time to cook a meal, making the local takeaway feel like the obvious solution. But, if we can limit the number of takeaways and improve access to healthier food, we can encourage individuals to make healthier choices.

Research has shown that just over half of Local Authorities in England use the planning system to limit the number of hot food takeaways in their area, with 34% doing so with public health in mind. The most well-known example of this policy is setting a minimum distance a new takeaway must be from local schools, usually set at 400-800m away.

However, when a newly proposed takeaway is rejected, the owner has the right to appeal the decision. This appeal moves the decision from the Local Authority to the Planning Inspectorate (PINS) on behalf of the Secretary of State.

Our research looked at the ins-and-outs of this process. Specifically:
  • What are the influences behind a decision by the Planning Inspectorate?
  • How is the Planning Inspectorate perceived by professionals involved in the process?
  • What barriers do Local Authorities need to overcome to win a case?
  • What factors make for a better chance of success?
To explore this, we spoke to local planners and public health professionals, including the Planning Inspectorate to get a greater insight into the process.

The main findings from our interviews were that:
  1. there was a discrepancy between what public health professionals, planners and the Planning Inspectorate considered to be public health evidence; and
  2. how public health professionals countered this with their enthusiasm to try and shape healthier environments.
The Planning Inspectorate was viewed by all as fair and neutral. However, public health professionals believed they had to go out of their way to ‘state the obvious’, in that new takeaway outlets would likely be harmful to local health. Conversely, planners and the PINS were keen to point out that public health is just one small aspect of planning policy.
“I think there seems to be an expectation from the public health side of things that planning will provide policy…like restricting take-aways will be the end of it from a health point of view, and of course planning is not actually designed to do that.”    
Planning Officer
This perceived constraint that health-based evidence was not given enough weight in decisions was offset by the enthusiasm of public health professionals to limit hot food takeaways in their area. They were often very proactive in defending appeal cases, stressing the importance of communication across a Local Authority, finding robust statistical evidence (as opposed to ‘anecdotal qualitative evidence’), and having good knowledge of their local area. Having this information in a Local Authority’s Local Plan (this guides decisions on future development proposals and addresses the needs and opportunities of the area) supported this activity and removed the need for re-researching the area for each application.
“It's all well and good having the policy but it needs the evidence as well to back it up. So, having access to the public health team and the public health evidence is a really, really relevant part of the appeals process” 
Public Health Professional
Planning policy can be used to successfully limit the number of takeaways within a local area. However, if such policies are to be used reliably to prevent their spread in our towns, public health professionals need adequate support to defend appeals, and planning needs to give greater consideration to public health evidence.

Friday 21 July 2023

How to choreograph a dance between policy makers and academic researchers?

Posted by Peter van der Graaf, Associate Professor in Public Health at Northumbria University and AskFuse Research Manager

Dancing is a key move in public health, particularly if you want to make an impact with your research. Knowledge exchange is not just a science or even an art, but very much a dance between researchers and policy makers about the use of research evidence. To complete this dance successfully and get evidence used in decision making, both partners need to follow certain steps. However, learning the steps (science) or performing them perfectly (art) is not sufficient: it requires instinct and feel for where you are in the dance and why you are doing it.

To develop a dance plan for your interactions between policy makers and academic researchers, Fuse hosted a special session (or dance class) at the European Implementation Event in Basel, Switzerland on 8 June. The EIE2023 brought together over 300 implementation scientists, practitioners and funders from across health, social welfare, education and other sectors in Europe. Over two days through fishbowls, science slams, workshops, inspiring keynotes and oral presentations, participants explored how to create a new normal for implementation science in society.

Our session explored dance challenges (e.g. moving too slow, bad timing, outfit malfunctions, and unsynchronised performances) and new routines in response (see: ‘What did we learn?’ below) that we have developed in Fuse over the last 15 years collaboratively with our partners. In the session, we highlighted examples of creative communication (the art of knowledge exchange), research performance both backstage and frontstage (AskFuse), and dancing together (embedded research) to set the scene for a discussion about what makes a successful dance between policy makers, health practitioners and academic researchers. We invited conference participants to share their own reflections of dance routines they have developed to support knowledge exchange and implementation of research evidence in practice and policy making.

What did we learn? 10 dance lessons

1. Academic researchers need to learn four basic steps for dancing with policy makers (see the Fuse knowledge exchange model):
  • Raising awareness, using creative communication.
  • Knowledge sharing through joint events.
  • Making evidence fit for purpose (localising and tailoring).
  • Supporting uptake and implementation (e.g., capacity, co-production, linking activities).
2. A deviant knowledge broker can help to facilitate backstage conversation and protect policy makers and academic researchers from missteps.

3. Go with the music: as the context and process in which evidence is useful changes constantly, it is an important skill for researchers to be able “to go with the music” based on ongoing relationships with policy and practice partners.

4. Emotional engagement between researchers and policy makers is essential to get a better feel for the music. A heart-to-heart or moaning about bad performances helps you to improve dance routines and hide missteps. Don’t forget the power of cookies!

5. Embedded research helps to develop an instinct for the dance, based on a better understanding of each other’s organisational contexts. Embedded research allows you to be part of solutions, developed with the communities affected, not just report on the effect on interventions and their implementations.

6. Public health is political; lobbying and advocacy are a core part of the embedded research roles.

Choreographing your own dance routine

We presented participants with the following questions to help develop their own dance routines: 

In response, conference participants started to develop their own dance metaphors for describing their experiences with collaborative research between academics and policymakers. Someone referred to their routines as a ‘silent disco’, where academics and policymakers were dancing to different pieces of music without knowing what the other where listening too. Other participants emphasised the need to spend time together first before you start picking music, to get a better understanding of each other’s musical tastes (classical meets punk?).

Overall, participants felt inspired to start to think more deeply about their own dance plans. How would you answer the above questions and what would your dance plan look like? 

Friday 30 June 2023

One size fits none, watch your language, and keep pondering...

Insights from the Integrated Community Care to Promote Healthy Ageing event

Posted by Hamdi Hamzah, Research and Evaluation Coordinator with NECS Research & Evidence

It was my first time attending an event that saw people (some of us dressed in red) from across different professions – academics, healthcare professionals, voluntary, community and social enterprises (VCSE) professionals and members of the public – come together to share common interests and explore future opportunities or collaborations.

Being new to the health and social care sector and a career changer with experience working with large corporations through strategic human resource roles, the Integrated Community Care to Promote Healthy Ageing event co-hosted by Fuse introduced something that I felt was closer to what was happening on the ground, especially when research and practice interweave. From this event, I have identified seven insights that I felt were worth sharing.

But first... what exactly is Integrated Care? The NHS England website describes Integrated Care Systems as: “…partnerships of organisations that come together to plan and deliver joined up health and care services, and to improve the lives of people who live and work in their area.” They also provide a helpful video explainer.

So, on to my magnificent seven:

1. There is no “one-size fits all” approach to care

Throughout the event, this was a common theme from both presenters and attendees, who continued to stress the importance of putting individual needs at the forefront in providing care. To echo Dr Bethany Bareham (pictured right), Fuse Associate and NIHR fellow at Newcastle University through her talk on providing support to older adults with co-occurring alcohol and mental health problems, support for one individual may not be needed for someone else.

2. Similarly, there is no one way to answer a research question

The event brought together different questions, methods and groups of people to enhance our understanding of promoting healthy ageing. For example, a video presentation by Dr Vanessa Davey, a Research Associate at Newcastle University, on the feasibility of developing a data set in care homes to assist in care delivery and commissioning decisions was eye-opening. You might think that digital GP records could readily be used in one form or another to build this data set, but it is clearly not that straightforward as data from other systems, namely social care, could (and should) provide additional insights into this dataset. Most importantly, while we might take different approaches and target different populations, we are all aiming towards achieving the same goal.

3. Language can have an important effect on how we approach a question

Simply put, are we talking about the same thing? We might think that the terminologies that we are using are similar but they could mean different things to different people. For example, Dr Dan Cowie (pictured right), clinical lead with the North East and North Cumbria (NENC) Ageing Well Network (who also spoke about the Frailty iCARE platform) posed the question: are "personalised care," "personhood" and "person-centred" the same thing for the groups of people that researchers are interested in studying? How we phrase the topic we are researching could also help or hinder what we get out of our work.

4. Co-production of research through VSCE organisations

Local communities should be involved in every activity within the research lifecycle, such as research planning, analysis and dissemination, and not just during the delivery stage of the study – an opinion shared by Greta Brunskill from Voluntary Organisations' Network North East (VONNE) in one of the workshops. Patient and public involvement (PPI) is a useful platform to involve members of the public and co-produce research, but there is the risk of “professionalising” these platforms, which may lead to voices from certain communities not being heard.

5. But what about before we reach a specific age?

There was interest from the audience in exploring personal and environmental factors before someone even reaches a specific age. The idea of testing the impact of, for instance, universal basic income among young people on healthy ageing was food for thought and suggests that a lot of where we are now or – perhaps will be in the future – could depend on factors in the present such as lifestyle, socioeconomic status and access to relevant services.

6. Addressing health inequalities remains challenging

Expanding on points 4 and 5 above, health inequalities remain a hot topic in this field of work. Access to care, health literacy (a person’s ability to understand and use information to make decisions about their health), personal qualifications and involvement of underserved communities were mentioned by attendees either during the talks or workshops as challenging areas. Introducing care or support may not work if barriers to accessing care remain.

7. Keep pondering

The entire event not only provided the opportunity to know what research is being conducted but showed the tremendous volume of research questions left to be explored! One of the themes that came out of Tania Jones' workshop on maximising the use of pharmacy services was the bigger role that they may play in primary care, especially in 2026 once pharmacy graduates enter the job market with prescribing qualifications. This could in turn lead to more questions, for example, is there an inclination for pharmacists to prescribe pharmaceutical over non-pharmaceutical treatments?

While the possibilities are endless, identifying questions that are crucial and impactful may be the first step to starting a research journey and finding the right collaborators. Regardless, we should continue to think about things that we are working on, as Lesley Bainbridge (pictured right), clinical lead in the NENC Ageing Well Network, quite aptly put it, "Some of the best research questions come from what we ponder."

Images: provided with thanks to NHS NECS Research & Evidence Team

Friday 16 June 2023

The Power of Partnership

Our Top Tips for co-production with inclusive and meaningful Public and Patient Involvement and Engagement 

Posted by Rosemary Nicholls, Patient and Public Involvement and Engagement (PPIE) member, and Charlotte Parbery-Clark, Fuse researcher at Newcastle University and Public Health Registrar

This image was co-produced with members of the public, researchers and film production company Kaleidoscope CFA as part of the UNFAIR research programme. You are welcome to use and share the animation or images whilst acknowledging the source ( when doing so. 

Earlier this year, members of the public with researchers at Newcastle University launched an animation that explores public views of health inequalities. The animation was created as part of the UNFAIR project, which is funded by the National Institute for Health and Care Research (NIHR).

Here Rosemary and Charlotte share their experiences as co-applicants on the project and give some top tips for members of the public and researchers.


"A key factor in the success of this project was the leadership style of the professional UNFAIR researchers. Their excitement and commitment to the study and to us as members of the Patient and Public Involvement (PPI) advisory team was infectious. The timely exchange of emails kept us all informed of progress and involved in deciding next steps. There was ongoing respect for what we had to offer.

"I was confident in my views and sometimes doubtful about the practicalities of what was being proposed, thinking: “This isn’t going to work.” But I found various methods much more successful than I expected and I learned through my surprise that I’d been wrong!

"A risk of consulting people in disadvantaged settings is that they may assume that the researchers will be able to effect immediate improvement in their circumstances, so it’s important to be clear from the outset about the aims and likely outcomes of a project and I feel we succeeded in this. The people we met in community groups emphasised how vital it is for them to be treated with respect and I’m confident that we put their needs at the top of our agenda when we asked them questions.

"There were occasions when we had to reassess our approach and resilience became a useful quality. The excellent teamwork that Charlotte and I had developed over previous months enabled us to undertake a successful review of our methods and move forward."


"When the opportunity came up to co-lead the project, I was excited but also a bit apprehensive as I was new to this type of work and was unsure about how to 'get it right'. One thing I was sure of was that I wanted to involve members of the public throughout the project in a meaningful way and avoid it being 'tokenistic'. So, the start of my PPIE journey involved lots of reading and reflecting about how to approach it!

"Co-leading with Rosemary and working with the UNFAIR PPIE contributors was invaluable as we could bounce ideas off each other and consider a variety of perspectives. They kept me right with the 'academic speak' I would sometimes slip into. I learnt so much with so many firsts, such as applying for funding for this type of work (and being successful!), creating flyers, navigating remuneration, as well as being involved in creating an animation."


Top tips for members of the public (especially if considering a co-applicant role)
  • Be confident about taking up the role, if you would like to do it. The researchers have asked you because they’re confident you can contribute relevant skills and experience.
  • Check that you have the time to commit to being a co-applicant. In terms of hours, the commitment may not be very great, but being able to respond to emails quickly (within 48 hours) and to attend online and in person meetings at arranged times can be important. It’s likely that you will be consulted about suitable times, perhaps by doodle poll, but there may be occasions when you need to prioritise the project to ensure continuity and re-arrange your diary. Ongoing dialogue between you and the researchers to figure out the best approach together works well.
  • Each stage of the project will be well-planned and costed in advance by the researchers and the lay co-applicant is paid by the hour in my experience, depending on the nature of the work. However, there may be occasions when lay co-applicants feel that they can offer further insights and they should feel freely encouraged to check that comments outside the box will be welcome and if so, volunteer their thoughts to the researchers by email.
  • Be willing to ask questions of the researchers and put your point of view across with confidence, but be prepared to find that your assumptions may be proved wrong as the project progresses. Remember that it’s a learning process for us all. Be resilient when necessary and work together to keep the project on track.

Top tips for researchers

Ways of working:

  • Decide how you will involve public contributors at each stage of the project in line with your budget.
  • If working with a specific group of PPIE contributors on a project, decide together how you would like to work. There are tools to help you with this, such as Working Together.
Diversity and inclusion:
  • Remove barriers for involvement as much as you can. For example, provide options such as different online and/or in-person sessions on different days/times, go to community groups and be flexible about timings to ensure it suits public contributors (not expecting people to come to you), or use online platforms, such as Padlet, for people who want to be involved but can't attend the session.
  • Language is really important, be as clear and as simple as possible.
  • To increase diversity of public contributors, networks can help promote the opportunities particularly in public health research compared to disease related research as public health research typically has a wider remit.
  • Building relationships is key and takes time. It is good practice to keep people updated and adapt according to need where you can.
  • Make sure you know how to remunerate public contributors in your organisation before any PPIE sessions to reduce delays.
  • Build in extra project time for unforeseen events.
  • Any challenges that may come about with PPIE work or co-production are opportunities to make the project even better, see them as gifts.
  • Sometimes, what is feasible in the time/resources available may not align with the feedback so be clear that you may not be able to act on all suggestions at the outset. Compromise as well as sharing why you have not been able to act on certain suggestions is useful. Have a way of deciding what you will do if the feedback conflicts with others' feedback is important.

Involving members of the public is incredibly worthwhile strengthening the project in so many ways. Also, undertaking PPIE and/or co-leading provides opportunities for rich learning and skill development for both researchers and public contributors. There is lots of support especially if this is your first time doing this type of work, as either a member of the public or researcher. To find out more about PPIE or public co-applicants, the following resources may be useful:

Opportunities for public involvement:


Rosemary Nicholls is a Patient and Public Involvement and Engagement (PPIE) Representative and Consumer Panel Member, National Institute for Health and Care Research (NIHR) Research Design Service (RDS) North East North Cumbria (NENC) and one of the UNFAIR PPI members.

We would like to thank the UNFAIR PPIE and research team, members of staff who helped facilitate the online workshop as well as everyone who took part in the workshops.

This project was funded by the Tilly Hale Award from Newcastle University and the National Institute for Health and Care Research (NIHR) (ref CA-CL-2018-04-ST2-010).The views expressed in this blog are of the authors and not necessarily those of the NIHR, the Department of Health and Social Care or Newcastle University.