Could collective community power direct future public health research?

Guest post by Liam Spencer, Research Assistant, Institute of Health & Society, Newcastle University

The Tyne & Wear Citizens are a local division of Citizens UK, a community organising group, which comprises of schools, universities, faith groups and charities. The group launched a ‘Commission on Mental Health’, which aimed to map problems, and identify solutions around mental health services in the region. In early 2018, The Tyne & Wear Citizens approached AskFuse [Ed – Fuse’s responsive research and evaluation service] in order to identify researchers to contribute to the analysis and production of their final report, ‘Living Well: Mental Health and Public Life in the North East’.

Through Professor Eileen Kaner (Newcastle University/Fuse), I had previously been involved in another AskFuse-supported project called ‘PROMOTE:NE’, which looked at young people’s mental health across the North East, and we met with Dr Peter van der Graaf and Lesley Haley from AskFuse to discuss this piece of work. Following this, I met with Revd Dr Simon Mason and Dr Joe Barton from the Tyne & Wear Citizens, and they were very happy to have me working with them, with supervisory support from Eileen.

The Commission had collected over 300 individual written ‘testimonies’ from people across the region, who articulated what was good, and what was not so good about mental health services in the region. It was these testimonies, which formed the basis of the Living Well report, and helped shape what the Citizens were asking local politicians and organisations to commit to. Prior to being involved in this piece of work, I had no understanding of what community organising was, and initially it was a challenge to grasp the concept of what the Commission were aiming to achieve, and how I could best contribute to this. In order to gain a better insight, I attended one of the Mental Health Commission Public Hearings in Durham, where key themes were discussed in front of a public audience, and a meeting of the Mental Health Action Team, where the group refined the ‘asks’ of the report.

Due to my interest in mental health, and experience in this area of research, I wrote the ‘Context’ section of the report, which aimed to set the tone, and provide the audience with relevant information about mental health in the region, and further afield. I was also able to provide relevant literature for, and make comments on the themed sections of the report, which were written by the editor.

Coming from a qualitative research background, it was interesting to learn about the methodologies employed by the Citizens for this piece of work. Community organising is a process where people who live locally come together into an organisation that acts in their shared self-interests. This method was used in order to best capture the voices of those who may not engage with traditional methods of research. This was one of the most fascinating insights I gained from the process, and I believe this method of collective power from the community, could be utilised in directing future public health research, and that groups such as these may well be a starting point for meaningful patient and public involvement work. 

The Citizens had a small pot of money to support our involvement, and seven working days were costed for me to undertake the work. The biggest challenge I faced was the tight timescale. I was working full-time across other projects, and was in the process of writing my MSc dissertation, so the work had to fit around these existing commitments, which meant working outside of normal work hours.

The final report was launched in November 2018, at an event attended by over 500 people at Newcastle’s Civic Centre. Eileen and I were delighted to attend and speak at the event, and it was fantastic to see so many individuals interested in finding out about the work. Although the timescale was tight, I thoroughly enjoyed the opportunity to be involved in this important and innovative piece of work. I had a great working relationship with Simon and Joe, and was well supported by Eileen and Lesley. 

I am passionate about mental health research, and I am proud to have played a part in the production of a report, which aims to improve the lives of those in my home region.

Find out more about the work on the Citizens UK website.

Making the rural a bit more idyllic

Guest post by Christina Dobson, Research Associate, Institute of Health and Society, Newcastle University

Ah, the countryside. The home of all that is natural and healthy, the epitome of the ‘good life’. Where you can stroll down the lane to collect fresh eggs or veggies from your neighbour, simply dropping your money in the honesty box left at the end of their drive. I grew up in a rural area, and still live in one now. I love that I only have to walk (more like dawdle - I have a very curious and distractible three year old!) for 10 minutes (five minutes without said three year old) from my front door and I am in the North Yorkshire Moors National Park.

And it seems that living in a rural area could actually be good for you in a number of ways. You are likely to be more satisfied with your life, experience better health overall, and live an average of two years longer than people in urban areas. Maybe it’s the un-polluted air, the connection between land and food, the sense of belonging and community? Or maybe that is just a myth, sold to us all through Postman Pat?

Because, actually, living amidst the beautiful rolling hills may not be so good for you if you develop cancer. In fact, it may even put you at greater risk of developing certain cancers and make you less likely to survive your cancer. With roughly 20% of the population of England living in a rural area, this poses a serious public health problem.

However, we don’t really know why rural patients are facing poorer survival rates than urban patients. One of the strongest factors is that cancer is often diagnosed at a more advanced stage in rural patients, limiting the treatment options available to them. We know that delays in diagnosis are strongly linked to advanced stage cancers, and, as such, encouraging early diagnosis has been central to UK cancer policy for over a decade.

When we begin to think about where diagnostic delays may be occurring for rural patients, it seems that they are investigated and diagnosed just as quickly as urban patients, after referral to hospital for specialist assessment. It follows then that there may be problems prior to referral to hospital that are slowing down rural cancer patients’ diagnoses, either in the way patients respond to symptoms, or the way they are managed in primary care.

Thanks to funding from Yorkshire Cancer Research, and alongside colleagues from Aberdeen and Glasgow, we are starting to look for answers to some of these questions. This study will involve interviewing people in rural Yorkshire to understand their experiences of bowel cancer symptoms and decisions around if, how, and when to seek help about them. The findings from these interviews will be used to work with local communities to think about what interventions we may be able to design to encourage people in rural areas to present to their GP and, hopefully, increase the likelihood that their cancer is diagnosed at an earlier stage and that they will survive.

It is an exciting study, as there is so little known about symptom experiences in rural populations, with lots of issues to explore. For instance, availability and regularity of public transport, provision of health care services in rural areas, hidden poverty, cultural beliefs and experiences of ill health and employment, to name but a few. And then there’s the messy complexity of defining the ‘rural’, or maybe we should be looking to instead describe the multitudes of ‘rurals’? Plenty to keep me busy!

With the arrival of National Bowel Cancer Awareness Month it’s been valuable to reflect on the importance of this study and the opportunities and challenges that lie ahead. Understanding some of the barriers to timely presentation that exist for rural populations, and devising ways to overcome them is our challenge for the next two years, and beyond. Maybe, longer term, we can help to make the ‘rural’ a bit more idyllic.

What fairy tales and pinball machines can tell us about using research

Posted by Peter van der Graaf, AskFuse Research Manager / Fuse Knowledge Exchange Broker, Teesside University

Once upon a time... the UK Knowledge Mobilisation Forum 2019 took place in Newcastle at Seven Stories, the National Centre for Children’s Books. The Forum brings together practitioners, researchers, students, administrators and public representatives who are engaged in the art and science of sharing knowledge and ensuring that it can be used. This year I was part of the organising group and we deliberately chose Seven Stories as location for the Forum with its focus on stories, which are an important mechanism for exchanging knowledge.

5 points awarded to Dan Wolstenholme of House Gryffindor 

Knowledge mobilisation wizards are also visiting #UKKMb2019 @fuse_online pic.twitter.com/010WtfEwh1

— UK KMb Forum (@UKKMbF) March 20, 2019

The Centre, spread out over seven floors, provided plenty of exercise to get to the different rooms for interactive poster sessions, knowledge fayres, fishbowls and workshops. The Harry Potter themed conference room also allowed me (not pictured right) to dress up as a Ravenclaw student while serving coffee. But the real highlight of the conference for me were the stories being shared by the key note speakers, Ishbel Smith from Heart in Mouth, who reflected on her practical experiences, and Andree le May and John Gabbay from the University of Southampton, who provided an in-depth research perspective. I will relate two of their stories: the first involves a house made of sweets, the second is about a pinball machine.

The power of stories is often underestimated in research but has gained some traction in academia, particularly for evaluating new interventions and because they make great impact case studies. At the same time, it has proven notoriously difficult to capture any impact in a story: we don’t really know what happens to research findings once they leave academia and trying to trace impact is like Hansel and Gretel clinging onto tiny bread crumbs in a large wood.

This brings me to the first story. Ishbel Smith used the story of Hansel and Gretel to highlight that the siblings missed the blindingly obvious (a house made of sweets is too good to be true and likely to be a trap), because they were too focused on the breadcrumbs and did not see the wider picture or context in which they were walking (a deep dark wood inhabited by a hungry witch). As knowledge mobilisers it is vital to understand where we are in a given situation to be able to unlock the relevant knowledge in that context.

Ishbel reiterated that contextual knowledge is just as important as content. Understanding the context in which research evidence is used and, perhaps more importantly, what happens to that evidence in a practice or policymaking context, is vital for mobilising it. To clarify this, Andree Le May and John Gabbay, told a story about how research evidence is transformed by using the analogy of a pinball machine.

In this second story, research evidence gets batted around across various groups of people within organisations as they interact with it. In each interaction, the evidence is slightly changed: people put their own spin on it and adjust it slightly for their own needs. The evidence literally receives a battering but in this process the evidence is made fit for a particular context and socially reconstructed. Like the pinball getting batted around inside the machine, with every contact the evidence changes shape. Perhaps not noticeably at first but you end up with something quite different and unrecognisable from the research evidence that you put into the dissemination process at the start. This means that, if you don’t understand as a researcher that your research findings will be transformed when it is being used by practitioners and policy makers, then you will never be able to find and follow it for your impact case studies.

Andree and John persuasively pointed out that the craft of knowledge mobilisation is not only using the right skills to get evidence into practice, but also to be able to be part of the story of how evidence is used. This requires not only technical skills (which are mostly studied by implementation science) but also the use of soft skills, such as the striking the right tone and style, being able to get your message across and contextualise knowledge; for example, do we know what the right problem and the right solution is for the context in which we are trying to mobilise knowledge?

Perhaps the most important skills we can develop for mobilising knowledge is how to enable learning: what did work and didn’t work in this context? How can we help others to apply research evidence into their own context? Stories provide a powerful tool for this: not to highlight what we have achieved as research institutions in the next REF submission, but to create a space to reflect on our experiences of using research evidence in different practice and policy context. To make these stories impactful, they have to be told by the people who used the research evidence. And we as researchers have to be willing to listen and be able to reflect on them with the evidence users.