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 (https://bit.ly/UNFAIRstudy) 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.

Rosemary

"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."

Charlotte

"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)

• Applying to be a co-applicant or public contributor can involve being selected from a group of interested people. Don't let that put you off as there are lots of opportunities. The Research Design Service (RDS) including Creating Connections, or People in Research are good places to start.

• 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.

Time:

• 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.

Challenges:

• 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:

Guidance:

• NIHR guidance on PPIE including guidance for public co-applicants and PPIE remuneration
• NENC RDS Public Involvement Guidance
• UK Standards for Public Involvement
• NIHR RDS Community Engagement Toolkit
• Working Together

Opportunities for public involvement:

• Contact your local Research Design Service (RDS); in North East and North Cumbria, opportunities for involvement are available, for example, through the RDS Consumer Panel and/or Creating Connections
• People in Research

 

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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.

Now that's what I call blogging 2021

Posted by Mark Welford, Fuse Communications Manager, Teesside University

Let’s all channel British novelist E.M. Forster and play a little game of Only Connect. What connects the things below?

“Yes of course, they can all be a type of list” (said in the friendly yet ever so slightly patronising manner of host Victoria Coren Mitchell)

I think it's fair to say that we all love a list. I mean, the premise of another very popular BBC gameshow is basically to list pointless stuff.

So here again (a little later than advertised) is our annual list of the most-viewed Fuse blog posts of 2021!

You'd be forgiven for thinking that this would be dominated by Covid and the pandemic as we saw in the 2020 list.

Obviously, we had our fair share of pandemic related posts. Blogs about misinformation, food insecurity, malnutrition, obesity and what children made of it all. How it impacted on work and engagement with public partners, parents, decisionmakers, practitioners, policy-makers and commissioners. How it affected our mental health, our liberties and even inspired a song and a cat-scale of wellbeing!

But as you can see from the list below it didn't dominate the top 5 chart-toppers of 2021. Perhaps a little escapism goes along way...

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Katsushika Hokusai: The Great Wave off Kanagawa

5. The other third wave: a mass epidemic of very individual pain

Posted by Jack Nicholls, Lecturer in Social Work at Northumbria University

Lockdown restrictions were beginning to ease in the UK. But after the jubilation, what if you don't feel the way you think you should?

A very personal post by Jack Nicholls on the long-term mental health consequences of the pandemic, of lockdown and social restrictions, and of its easing. 

*Content/trigger warning: mental health, depression, suicidal feelings.

Page views: 938

Published: 16 April 2021.

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4. Patient and Public involvement with Parents during a Pandemic: the four ‘P’ challenge

Posted by Hannah Batten, Food and Human Nutrition undergraduate student at Newcastle University. Hannah was on a placement year with the Population Health Sciences Institute, as part of the MapMe study aiming to help parents assess child weight.

Body image scales on the MapMe website are being updated for MapMe2

"Most importantly, is to say to our participants that we are extremely grateful for their time and input, particularly during these uncertain times."

Hannah tells us how she and the MapMe study team met the challenges involved in recruiting and running an online Parent Involvement Panel (PIP) to help review documents and study materials, when parents were already dealing with a global pandemic. 

Page views: 1,029

Published: 5 March 2021.

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3. Should pregnancy 'be incentive enough' to quit smoking?

Posted by Susan Jones, Research Associate at Teesside University

In this blog post on #NoSmokingDay, Dr Jones explored deprivation, guilt, shame, stigma and the complex web of reasons behind smoking behaviour.

Just searched #smoking #pregnancy #incentives - struck by many tweets that say 'pregnancy should be incentive enough' to quit smoking. Clearly the stats tell a different story for a significant minority - the question surely is why and what can be done? @ASH_LDN @FreshSmokeFree

— Dr Susan Jones (@Susan_E_Jones) December 10, 2020

Page views: 1,155
Published: 10 March 2021.

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2. Things I wish I’d known when I started my PhD… (part 1)

Posted by members of the Population Health Interventions Programme at the MRC Epidemiology Unit

Research doesn't happen overnight, avoid comparison and channel your inner Arsène Wenger ("Le Professeur"). In our second most popular blog post, the early, mid and senior career researchers at University of Cambridge share their tips for PhD survival.

Here is part 2 which interestingly received only half as many views despite including a High School Musical reference.

Page views: 1,347

Published: 4 June 2021.

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1. Can Forest School inspire the next generation to be happy & healthy?

Posted by Katie Beresford, undergraduate student at Durham University

With more than 2,700 views this is our most read post of 2021 by some distance!

In it Katie explores growing up in the Lake District, embracing nature, finding school restrictive and struggling academically in her early years.

Nearly two decades later she is completing a Fuse summer internship with the NIHR School for Public Health Research and is tasked to review literature discussing the effectiveness of Forest School as a public health intervention.

Why not grab a coffee and take a walk with Katie into the woods to find out what she discovered...

Page views: 2,746

Published: 8 October 2021.

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So there you have it, the top five Fuse blog posts of 2021. Congratulations to Katie who wins a rare and coveted Fuse paperweight!  

Fantastically both Katie and Hannah's blog posts were part of our Fuse blog Student Series which we launched last year! This showcases posts by students who have been challenged to write a blog as part of their studies. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research. Hopefully this will encourage other students to take the plunge!

As always, many thanks to our loyal readers and fantastic contributors.

Can we do any better in 2022? If you fancy giving it a go, please find out what we are looking for and how to take part here. All contributors receive a much sought-after Fuse badge.

Images:

2. Image: Katsushika Hokusai, (CC0 1.0), via Wikimedia Commons

4. Mr. Alexander Ottesen, CC BY-SA 2.5, via Wikimedia Commons

Patient and Public involvement with Parents during a Pandemic: the four ‘P’ challenge

Posted by Hannah Batten, Food and Human Nutrition undergraduate student, Newcastle University.  Hannah is on a placement year with the Population Health Sciences Institute, as part of the MapMe intervention team.

If you have a primary school age child, then you’ve probably heard of the National Child Measurement Programme (NCMP). For 13 years, it has collected data on the height and weight of children aged 4-5 and 10-11 years old in England. This information is used to calculate what is called the ‘weight status’ of a child and the results reported to parents via letter. Unfortunately, these letters often receive a mixed response, with many parents mistrusting the results.

Research has also shown that parents often struggle to recognise if their child is overweight, preventing them from taking action to address this.

Body image scales on the MapMe website are currently being updated for MapMe2

This issue sparked the development of the MapMe intervention, led by Fuse Director Prof Ashley Adamson and Angela Jones, which aims to help parents assess child overweight / obesity. The MapMe tool includes:

• sex and age specific body images of children ranging from underweight to very overweight
• information on the consequences of being overweight in childhood
• advice on healthy eating, physical activity and links to further support.

Funded for large scale testing by the National Institute for Health Research, the MapMe tool will be delivered as part of the National Child Measurement Programme across nine areas, aiming to improve how parents respond to the letters and the NCMP process, supporting parents to take action.

The project originally had a 3-year time frame, with the intervention scheduled to be delivered in 2020/21. But, as with many other things, COVID-19 got in the way and with schools closed this prevented the delivery of the NCMP, which delayed the project by a year. Although this was disappointing, it has allowed extra time for us to focus on preparing for the next part of the study focusing on Patient and Public Involvement (PPI).

Doing PPI during a pandemic

PPI involves gaining insight during the research process from members of the public, improving research by providing additional expertise from a non-researcher perspective. One key task for the MapMe2 study was to figure out how we could recruit and run an online Parent Involvement Panel (PIP) to help review documents and study materials, when parents are already dealing with a global pandemic.

Recruitment and communication

To accommodate people being stuck at home during COVID-19, parents were recruited through social media and network sites such as the Newcastle University staff pages. Once the Panel was created, we asked parents how they wanted us to communicate with them and kept in frequent contact via email and newsletter to keep them informed and engaged in the project. As this was unknown territory for everyone, good communication with the Parent Involvement Panel was essential.

Moving online

Pre COVID-19, we had planned to hold face-to-face meetings with the parents in easily accessible venues such as the Great North Museum in Newcastle upon Tyne. However, as has become the norm with lockdown and social distancing measures, in person gatherings have been replaced with Zoom meetings. On the plus side, this allowed the meetings to go ahead and parents to attend from any location, but did result in frequent technical issues! When preparing for remote meetings, we sent out documents to parents in advance and scheduled breaks to avoid ‘Zoom fatigue’. We also used ice breakers at the beginning of sessions to make parents feel at ease.

Making information accessible to all

COVID-19 has intensified the digital divide in the UK, with a large number of people having limited access to, or understanding of, devices. Reading information and training documents on the small screen of a smartphone or tablet is not a practical or enjoyable experience. In an attempt to address this, we send hard copies of the Parent Involvement Panel manual through the post.

We have also created videos that will be posted on YouTube (example below), making them easily accessible to parents whenever they wish. The videos include members of the study team welcoming and informing parents about the project and their role, as well as short animations providing training tips. Although these are perhaps not Oscar-winning performances, they provide the information in an alternative and accessible format for volunteers.

 

Learning from our experience in carrying out remote Patient and Public Involvement during COVID-19, information needs to be provided in an accessible way like videos, and volunteers need to be aware and comfortable with the options available to feedback their opinions.

Saying thank you

Finally, and most importantly, is to say to our participants that we are extremely grateful for their time and input, particularly during these uncertain times.

As long as we are mindful of these new challenges, online Patient and Public involvement can still be a valuable and effective way to work.

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

Summer school at home: Learning online and adapting research to reach the ‘hard to reach’

Posted by Emma Adams, Newcastle University, and Jo Dawes, University College London, NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellows

Starting a new post in a new institution just as a global pandemic and lockdown sweeps the UK is not how we envisaged beginning our NIHR School for Public Health Research (SPHR) fellowships. When our training and development allowance letters came through initial thoughts were to delay booking any training until it was possible to attend in person. However, as time passed, it became clear we may be waiting some time. This realisation coincided with hearing about the “Applied Research Methods with hidden, marginal and excluded populations” course run by Nuffield College, University of Oxford. The course is usually a weeklong residential summer school, but this year it was offered online. The idea of spending five full days sitting at home doing online learning seemed a disappointing second best to a week in Oxford and somewhat limited our enthusiasm. However, these concerns were misplaced. We could not believe how engaging the course was, with tutor Andrea Rossi doing an excellent job of varying the activities, keeping us captivated and packing the course with relevant, interesting, and interactive tasks. 

For this ‘participatory research method’ we were given 5 minutes to create a map of our childhood community, using items we could easily reach. The task was designed as an ‘icebreaker’ activity to start a conversation about our childhoods. Using available objects, rather than drawing, takes away any pressure interviewees might feel about their aptitude for drawing. This activity could be adapted in rural communities using found items outside. Once my map was created, I talked about the map and why I had highlighted specific aspects of my community - this is the point at which ‘data collection’ might start.

Beginning with what makes a population ‘hard to reach’, we were armed with the linguistic tools to define whether our population was hidden, marginal, elusive, rare, excluded, or blurred (see Table 1 for breakdown). By breaking down populations into these different categories, we were better able to understand approaches for reaching and involving them in research. People experiencing homelessness may be perceived as ‘hard to reach’, when in fact they might just be elusive (purposely hiding or not reporting). If we, as researchers, recognise individuals may be making a conscious decision not to report, then perhaps we need to build a foundation of trust. The responsibility a researcher has to find ways to reach the ‘hard to reach’ was one of the most important things that we learned. 

With optimism that the virtual learning might not be as onerous as we had feared, we jumped into three days of research methods (both qualitative and quantitative). Challenging us to approach every technique from both the researcher and participant perspective, we were pulled out of our comfort zones and into creatively mixing research techniques. Opportunities to transform recruitment strategies (such as respondent driven sampling into a data collection tool for analysing social networks were explored. Learning to make the interview experience more interactive challenged our preconceptions of data collection - ever thought about asking a participant to reconstruct an important/memorable place with only items in their kitchen? Having experienced this first-hand, we both agree it was a great facilitation tool as a participant and researcher. The breadth of material in the course left us feeling that it was a week well spent, despite the initial apprehension and sitting at a computer in the blistering summer heat.

As a result of attending this course, we have already adapted how we approach our research activities. Jo was struggling to define a ‘hard to reach’ population in a patient and public involvement (PPI) paper. The course provided real clarity about this topic and helped her confidently address this definition in her writing. Emma was trying to find a way to approach recruitment and the re-shaping and framing of populations has provided me with optimism about my future recruitment strategy.

There is no doubt that by learning online instead of face-to-face, we really missed out on networking opportunities with our course peers - nothing could really replace a good natter over coffee. Conversely, the online nature of the course really opened up the cohort - we were learning with people sitting in their homes in England, Wales, Switzerland, France and Germany, while our tutor taught us from his apartment in Bangkok. Perhaps without being online, we would have been a far less international cohort. After undertaking this excellent course, we certainly feel more positive about online learning, how engaging it can be and how - in these uncertain times - it is important to not simply wait for face-to-face learning to return as the norm. The variety of learning and research activities we used online challenged us to translate so much of what we usually do face-to-face to our ‘virtual classroom’. As a result, we developed skills in how to adapt our current methods of communication in our research.

Our take home messages from the course:

1. Online research and learning can work well if you are creative and willing to be flexible.
2. Researchers must consider reasons some populations are ‘hard to reach' (are they rare, hidden, elusive, marginal, excluded or blurred?).
3. When you recognise WHY a group of people are ‘hard to reach’, you must adapt your research methods to better reach them.
4. Through mixing methods/data sources you can strengthen your understanding of ‘hard to reach’ groups.

You’ve lost that curry feeling: smell, memory and food research

Posted by Duika Burges-Watson

Grant Achatz, a survivor of head and neck cancer and one of the world’s most adventurous chefs, serves a dish in his Chicago restaurant Alinea that frequently makes people cry. Why would pheasant with shallots, cider and burning oak leaves do this and why should we care about some zizzy restaurant food? The principle is based on a neurological fact – our olfactory system is linked directly to the amygdala-hippocampus complex – the ‘substrate of emotional memory’ (Herz 2004, Soudry et al 2011). Research shows that autobiographical memories evoked by odour are significantly more emotional than those recalled with visual cues. It is sometimes called the Proust phenomenon – after a literary anecdote involving a Madeline biscuit and the recall of a powerful childhood memory. In Achatz’s restaurant, burning oak leaves are not eaten - they take you straight to the excitement of autumn.

Pheasant with shallots, cider and burning oak leaves

In the Fuse-led NIHR/RFPB-funded head and neck cancer ‘Resources for Living’ project, we have been running food play workshops to explore the potential of modern cooking techniques and ideas to improve survivors' eating and experience of food . In our workshop next week we are talking curry – it’s what many survivors have told us they miss the most.

As one of our survivors said:

The first meal I ever had with my husband was a curry. I had never been to an Indian restaurant until he took me in the early eighties. I couldn't believe the aroma the flavours and textures. He said he'd never seen anyone so small eat so much. I was hooked!

I used to hate it when people ordered their own curry and rice and put it all on their plate and didn't share. I liked to try a bit of everything to experience all the different tastes and textures. However I didn't like anything too hot and spicy. I found that too much heat from spice destroyed the rich flavours. So a Madras or anything hotter just seemed to lose taste.

The only thing I can eat now in an Indian restaurant is a bit of poppadum. It's a killer, watching my husband and daughter getting stuck in to a really delicious curry on the curry mile and me sitting with a glass of water. Help!

We will be using knowledge about food and memory, clever cooking skills and some of what social science can offer on food and eating, to create, and explore, a curry experience that cancer survivors can participate in. Curry is, after all, more than about the physical experience of eating. It’s where many Brits get to feel Britishness (speaking here as an Australian we do something similar with South East Asian food). We socialise around take-outs and eat-ins. Curry is also pretty intensely flavoursome, spicy and exciting to eat.

We knew when we started the ‘Resources for Living’ work that our research would have resonance beyond this patient group - head and neck cancer survivors have problems with chewing, swallowing, sore mouths, throat narrowing and damage, taste alterations, smell function decline and more (in various combinations) so their experiences are particularly relevant to understanding how we can cope with altered eating difficulties (think loss of taste and smell in ageing, neurological damage etc). But even for so called ‘normal’ eaters there is interest here. For starters (excuse the pun), do people with ‘normal’ eating habits talk about the relationship between food and emotion, food and thinking? This could be a component of food literacy, particularly in the context of modern manufacturing processes where odours can be created at will. Just think of the experience of supermarket shopping near the bakery section. Does the emotional trickery of circulating the odour of baking bread get you to buy more high fat/salt/sugar foods that you don’t need?

As people age, altered taste sensation can lead to all manner of new habits around food – how might the experience of smell be employed to re-engage those that have lost interest in food? Another example: taste disturbance amongst smokers is well documented; why don’t we employ food therapy to increase desire for a more flavoursome smoke-free life?

Remembering an odour memory yet? Perhaps not, but next time you are transported to a sweet childhood memory, perhaps you’ll notice the smell of it.

Moving on in Knowledge Exchange: part 2 of the KE blog series

Posted by Mandy Cheetham

This is the second in a series of three posts on knowledge exchange and translational research.

Whatever we call it, translational research, knowledge exchange, knowledge to action, researchers are generally interested in how our research can make a difference; its impact. In the messy world of public health, it isn’t always easy to ensure this happens, but there are good reasons to try, and lots of experience to draw on in Fuse.

Working with people who are interested in our research findings makes sense in all sorts of ways, especially if we involve them early on. It’s all about developing positive relationships, and maintaining these before, during and after the research process. Policy and practice partners can help identify topics that are relevant and useful, think about how to frame the research questions, contribute to funding applications, work out what design to use, what methods will work, recruit participants, make sense of the data, and use it to inform policy and practice. It relies on being able to collaborate with people, so everyone benefits.

In the last month, I attended two events, the Fuse Members' meeting and a Partnerships for Public Health research meeting, where researchers described how they’d worked alongside public health colleagues in different ways to ensure their research was relevant and useful. There were discussions about the benefits and pitfalls of collaborative research, academics and practitioners working and learning together, ‘researchers in residence’, embedded researchers, developing new skills and perspectives, writing and publishing together.

The events made me think about writing this (my first) blog, to highlight the opportunities for translational research in Fuse. Most of you will know about AskFuse (there'll be more about it in next week's blog) and Fuse Quarterly Research Meetings, planned in collaboration with colleagues in practice. This month’s meeting is on patient and public involvement in research.  There’s a programme of ‘knowledge exchange’ seminars - see link for the latest seminars coming up in November. ‘Open conversations’ are opportunities for anyone with an interest in research to come and test out their early ideas with friendly academics in the Knowledge Exchange Group. This group includes people with experience of collaborative public health research and practice. We take a broad view of translational research, and have drawn on the many different approaches in Fuse to put together a Question and Answer resource about translational research. It includes questions like why bother with translational research, ideas for identifying and involving stakeholders, what to consider in engaging stakeholders, what research designs to use and ways to share results widely, and some of the people in Fuse who can help. We’d welcome your comments on the Q&A resource and how it could be improved, so do let us know what you think.

I started to think about the wide range of ways in which Fuse staff and members are involved in translational research - setting up a research practice network in partnership with Public Health England, topic based research development groups, interactive web discussions, time limited placements for academics in strategic planning meetings. There are more examples and we’re keen to hear about your experiences of translational research, so please do get in touch.

In the NIHR research project I worked on recently, one of the participants talked about ‘connecting with people in different ways’. Put simply, translational research is just that. We need to do better to demystify the language we use, learn from our collective experience across and beyond Fuse, and (for those in Fuse) celebrate our achievements as a Centre for translational research. Our research and the strength of our collaborative partnerships will be all the better for it.

The value of involving patients and the public in research

Posted by Christina Dobson

After working for two years as a researcher in the Evaluation, Research and Development Unit at Durham, I began my PhD in January. My PhD examines the effects of social context on symptom appraisal and help-seeking behaviour among patients with symptoms suggesting lung or colorectal cancer. Specifically I'm comparing the accounts of patients who have relatively short help-seeking intervals and patients who have a longer time to presentation. Over the past few years I have been lucky enough to attend a number of seminars which touched upon, or discussed in detail, the importance of patient and public involvement (PPI) in research. I always agreed with the value of public involvement and was sure I wanted to incorporate it into my PhD but arguably viewed it in a ‘rose-tinted spectacles’ type of way - not really understanding it’s potential. 

I tried to recruit some patients for a bit of PPI two months before my ethics application was due but with two weeks to go I still had no-one. My previous passion about patient involvement became more of a fear of not having that ‘box ticked’. A few days later I had got two lay representatives who were interested in being involved, Simon*, a local patient, and Penny*, a patient rep on another study I work on. I sent the documents off (after a terrible explanation of patient involvement in research during the call to Simon) and felt relief that that it was coming together and I had ‘ticked the PPI box’.

After a few days I got a phone call from Simon, and then a couple of days later one from Penny too. I received a comment about the absence of a question on the national bowel screening programme in my interview schedule, something so obvious considering I had worked on a study looking at the barriers to participation in FOBT screening. The title on the study documents (‘Understanding Factors Affecting Help-Seeking’) was heavily critiqued, and rightly so, it was complete jargon and obviously intimidating. So we co-created a new title of ‘A study about what makes people decide to go to their doctor.’ There were a number of other issues raised but I also received a lot of support and praise for other aspects of the study design which boosted my confidence and belief that the research is valuable.

During these conversations I was listening more as a ‘person’ and less as a ‘researcher’ and agreeing – nothing either Simon or Penny said did I disagree with. Reflecting on these conversations made me realise that as researchers, it is very easy to remain firmly seated within our academic bubbles, using our exclusive languages and assuming people understand our implications without explaining them. If we took a more detached look at our research we would be able to see many of these issues ourselves. But too often we become wrapped up in our work. It gets difficult to see the wood for the trees and even harder to take a truly critical look at our ‘babies’. This is why PPI is so valuable, and should be a central part of our research approach.

Most of us in research do what we do because we believe in it and hope that someday our work may make even make the tiniest bit of difference to someone, somewhere. To help us achieve this we need to have good, representative recruitment rates, and to achieve this we need to make participation accessible and interesting.

I can't thank Simon and Penny enough for their input into my study so far. Not only have they improved the quality of the application and study documents, I believe their input will have improved recruitment to the study. Most importantly though, they kicked me out of my academic bubble, and made me think about the study as my lay self, and not my researcher self.

At this point in the study I don’t have any real pearls of wisdom to share. All I can say is please ‘go there’ and don’t just treat PPI as token gesture. I have found that embracing the lay representatives’ input has significantly benefited my study and I am excited to see how Simon and Penny will help to shape the study as it progresses.

Has anyone else had much experience with patient involvement in their research? I would love to hear your stories.


*not their real names