Misinformation, data uncertainty and the cat scale of wellbeing - global lessons on knowledge exchange during a pandemic

Posted by Peter van der Graaf, Associate Professor, AskFuse Research Manager & NIHR Knowledge Mobilisation Research (KMR) Fellow, Teesside University and Roland Bal, Professor of Healthcare Governance at Erasmus University Rotterdam

While the evidence base on successful practices in knowledge exchange is growing rapidly, the COVID-19 pandemic presents unprecedented global challenges. During an online taster event for the upcoming Fuse international conference on knowledge exchange in public health, international experts shared their learning from the pandemic.

Perhaps the biggest challenge during the pandemic has been communication. Governments demanding quick access to the latest scientific evidence to inform their decision making in the fight against COVID-19; researchers dealing with a lack of data and uncertainty in interpreting emerging data on spread of the virus and risks to health; and both struggling with the spread of misinformation on social media and in other places of power. 

In spite of these challenges, awareness of public health and research evidence has increased significantly during the pandemic. Some public health figures, such as England's chief medical officer Chris Whitty, have become household names ("next slide please") and ‘R numbers’ are now common knowledge. We learned to be more flexible in funding, designing and conducting collaborative research, with gold-standards being replaced by ‘good enough’. 

Maureen Dobbins from the National Collaborating Centre for Methods and Tools within McMaster University in Canada, demonstrated how they were able to develop new synthesis methods and dissemination plans with local government to mobilise evidence for decision making within less than a month. For example, they conducted a rapid review on household food insecurity for the Public Health Agency of Canada with support from Public Health Advisor Leanne Idzerda. They dealt with uncertainty in these rapid reviews by grading the evidence by asking: ‘How likely are the findings to change with more evidence?’

As professionals, we learned to deal with the uncertainty of data by making better use of our personal connections. Roland Bal from the School of Health Policy and Management at Erasmus University in Rotterdam showed how Dutch clinicians mobilised their informal network of colleagues at the local, regional and national level to coordinate beds for COVID-19 patients across hospitals in the Netherlands and reduce uncertainty about available intensive care unit capacity. This resulted in a dedicated bus service for transporting patients between hospitals.

Existing monitoring and coordinating structures between hospitals no longer worked in the pandemic and were replaced with new informal ones, in which emotions and politics played a much larger part. Roland dubbed this the importance of ‘relational epistemology’ and also drew attention to the ‘dark side’ of these new coping strategies, where people outside these relational structures were seldom heard and the patient voice and experience not included. 

However, researchers also developed new ways of engaging with their partners in research. For example, Jane Powers and Mandy Purington from the Bronfenbrenner Center for Translational Research at Cornell University, USA engaged with youth workers and health care providers in their ACT for Youth project by transitioning to innovative remote and virtual formats, including game and role play, using avatars. Part of these formats is an acknowledgment of the emotional impact that the pandemic has on partners and therefore the need to create a space in these activities to check in on partner wellbeing. Perhaps their greatest innovation is the ‘cat scale’ which Heather Wynkoop Beach from the Bronfenbrenner Center introduced during the event - which cats represent you today?

Finally, policy makers, professionals and researchers have had to learn to deal with misinformation about COVID-19. Peter Lurie, President of the Center for Science in the Public Interest, in Washington, D.C., USA showed that the actual amount of primary misinformation about COVID-19 is very small but can do plenty of damage, due to many people simply referring to it online. Of the 479,225 articles he found in his review on COVID-19 vaccines in a wide range of media outlets, only 3.7% contained misinformation, and of those only 3% contained what he called ‘primary misinformation’, with the vast majority of articles simply referring to a very small number of primary sources of misinformation. However, some of these articles were sent to more than 400 million subscribers, indicating that the reach of misinformation can be vast!

C-WorKS: COVID-19 Consequences – Want it? or Know it? Share it!

To counteract misinformation and lack of knowledge, Mia Moilanen, who works as an Analytical Programme Manager at Public Health England* in the UK, demonstrated an online knowledge sharing platform called C-WorKS, which was developed during the pandemic. On this platform, health professionals, service commissioners and academic researchers across North East England and Yorkshire share knowledge, expertise and resources on the non-COVID consequences of COVID-19 (e.g. delayed representation of other health conditions, mental health and increasing health inequalities). So far, over 700 members have shared more than 300 resources through C-WorKS.

What the pandemic has taught us more than anything, is the importance of collaboration: to work together to find solutions and that, during public health crises, we need to find new ways of connecting knowledge users, producers and brokers. This requires flexibility in roles, structures, research methods and funding arrangements, which will have a lasting impact on the future of knowledge exchange in public health. We hope to address the complex challenges faced during the pandemic, what we have learned about knowledge exchange, and how we can use this knowledge to improve research and practices in the future at the Fuse conference next year in June in Newcastle, UK. We can’t wait to see you there!

*Public Health England has been replaced by UK Health Security Agency and Office for Health Improvement and Disparities

Watch a recording of the online taster event below

 

Images:

1. Capture from the BBC News website, 19 December 2020. Covid at Christmas: 'Chris Whitty is more popular than Britney Spears'. Source: TWISTED PICKLE. https://www.bbc.co.uk/news/uk-55333205

A tale of two families: diabetes and rugby

Posted by Ruth Boocock, Senior Lecturer in Dietetics, Teesside University

The rain is coming in sideways, the mud is three inches and counting, a Sunday afternoon somewhere in the North of England. My rugby family. Amongst the rain, probably beneath four or five bodies, my seventeen year old daughter is having fun.

A whistle goes and a rain sodden, mud covered monstrosity jogs towards her family on the touch line. An upper arm extended, a mobile phone waved at a discreetly protected sensor and a blood glucose level read. Sometimes it’s an insulin pen to compensate for the adrenaline, other times a sports drink to refuel, such is the trial and error process of educating herself on what management routines work for training and matches. Blood glucose responses to physical activity for this recently diagnosed teenager with type 1 diabetes are highly variable based on activity type and timing and require different adjustments (Colberg et al, 2016)1. There are looks of course. Some parents are confused but a hurried whisper and the confusion is quickly replaced by respect. No mess, no fuss, just ordinary life. There are more important and more exciting things to do. Opponents to fell, tries to be scored. Rugby here, really has no barriers. A progressive, modern, attractive, dynamic and inclusive sport played by all (World Rugby, 2017-2025 vision)2.

Today is World Diabetes Day and the theme for 2019 is ‘The Family and Diabetes’. The aim, to raise awareness of the impact that diabetes has on the family and support network of those affected, as well as promoting the role of family in the management, care, prevention and education of diabetes.

On the rugby pitch my personal and professional life comes into sharp focus. I have spent the last twenty years as a dietitian sharing the journeys of people with diabetes. From the familiar insulin dose adjustment which offers greater freedom to eat and exercise while minimising glycaemic excursions (changes in blood glucose levels), to the battle of weight management and diabetes polypharmacy (the use of multiple medications). Weight loss for those with type 2 diabetes unlocking a future without diabetes or at least the ability to rationalise the use of diabetes medications.

Willowy wings take to the pitch alongside broader hardier oaks. At its best they complement each other wonderfully. From helping to prevent and manage medical conditions to reducing the risk of type 2 diabetes, the benefits of sport and activity on a person’s physical wellbeing are huge. But only 63% of adults are physically active for the recommended 150 minutes weekly, with figures lower still for children (Department of Health and Social Care, 2019; Sport England, 2019)3,4.

Rugby helps to maintain or improve aerobic capacity (the ability of the heart and lungs to get oxygen to the muscles), strength and balance and bone health and contributes to meeting the physical activity guidelines. Other benefits to exercise include reduced stress and improved self-esteem. Rugby reminds these girls that nobody’s self-worth comes from how they look or the perfect make-up or beautiful hair or high fashion clothes of online celebrities. There is a wonderful freedom here but also a challenge. Obesity. There is a fine line between giving girls and women confidence in their bodies and shape while also encouraging those patterns of healthy eating that will allow them to play at their best and get the most out of their training and their life. We do not always get the balance right. Push come to shove however they are out there two-to-three-times a week, come rain or shine working incredibly hard, growing as team mates and women, and reducing their risk of developing type 2 diabetes by 30-40%. That has to be an excellent beginning.

On the pitch there is just the team, on the side lines the wider rugby family. Sometimes also the diabetes family. Nicknames abound. Banter flows. Yet there are no labels. There are no diabetics, no 'fat girls', just a team and its friendships, its victories and losses, its celebrations and of course, lots and lots of mud.


Ruth’s current doctoral studies seek to identify barriers and enablers to the implementation of diabetes remission strategies for adults with type 2 diabetes recently diagnosed within general practice in one of the most deprived local authority districts in England.


References:

1. Colberg et al. (2016). Physical Activity/Exercise and Diabetes: A Position Statement of the American Diabetes Association. Diabetes Care; 39(11): 2065-2079. https://doi.org/10.2337/dc16-1728
2. Accelerating the global development of women in rugby 2017-25. https://www.world.rugby/womens-rugby/development-plan?lang=en 
3. Department of Health and Social Care (2019). UK Chief Medical Officers' Physical Activity Guidelines. https://www.gov.uk/government/publications/physical-activity-guidelines-uk-chief-medical-officers-report
4. Sport England (2019). Active Lives Adult Survey: May 18/19 report. https://www.sportengland.org/media/14239/active-lives-adult-may-18-19-report.pdf

Images:

1. 'Logo for the World Diabetes Day' by International Diabetes Foundation via Wikimedia Commons: https://commons.wikimedia.org/wiki/File:World_Diabetes_Day_logo.svg
2. Published by: West Park Leeds Girls Rugby ‘Meet your #innerwarrior’ event, with thanks to Kurt Nutchey

Public health isn’t good politics

Knowledge exchange lessons from the 4th Fuse international conference (part 1)

Posted by Peter van der Graaf, AskFuse Research Manager, Teesside University

When I attended the Fuse knowledge exchange conference in Vancouver, B.C. earlier this month, I did not know that some Canadian squirrels are black.

I also did not know how much knowledge exchange was embedded in Canadian research. In the UK we are struggling to get researchers involved in knowledge exchange while working in an academic system that does not reward these activities. For Canadian researchers this is a fundamental part of their job and firmly embedded in the CIHR (the Canadian equivalent of NIHR) mission statement: "… excel the creation of new knowledge and its translation into improved health for Canadians" (Canadian Institutes of Health Research Act).

As surprised as I was to see black squirrels skirting the trees in Stanley Park in Vancouver, I was also surprised by the number of Canadian presenters at the Fuse conference who pointed to the impossibility of translating research evidence into practice.

For instance, Steven Hoffman, made a convincing case about public health being not good politics and therefore difficult to translate into policy. He argued that everything that public health does makes it invisible to policy makers. For example, we focus on prevention instead of treatment, which is much more difficult to observe and showcase.

An image from Steven Hoffman's presentation

Moreover, the more successful we are (when we prevent population diseases from spreading), the greater our invisibility becomes (there is no longer a disease to worry about) and, consequently, the more difficult it is to ask for more resources to keep prevention efforts up.

We also focus on supporting long-term chronic conditions instead of delivering acute services that can provide an instant solution to health problems. Furthermore, our data, as a population science, is based on statistical lives instead of individuals with a face and story. This all makes public health a hard-sell to politicians.

But it is not only our modus operandi that causes this hard sell: the system in which policy makers operate makes the use of research evidence unlikely. Paul Cairney from the University of Stirling explained in his talk that policy makers must ignore almost all the evidence that they are presented with to make decisions. They do this, not by weighing up the evidence carefully as we as researchers would like them to do, but by taking shortcuts, which Paul described as ‘bounded rationality’.

Policy makers either select evidence that helps them to reduce uncertainty about how to achieve their goals or, (and this is the more popular option) they apply their gut-level, emotional, belief-driven knowledge to reduce ambiguity about policy options. Moreover, policy makers are often not in control of the policy process and therefore they cannot tell us what evidence is useful, when and how it will influence the decision-making process.

If public health policy is not good politics and research evidence is a hard sell to policy makers, what can we do to make a better investment case for public health? Luckily both speakers provided their own shortcuts for making it more likely that public health and our evidence would be heard and used by policy makers:

1.) Recraft the narrative. Smoking was banned in public places not because smoking was harmful to smokers but because the campaigns focused on the dangers of second-hand smoke to the wider public, particularly children. By reframing the story from an individual blame game to an emotive public issue, public interest could be galvanised and used to put pressure on national Government to take action, building on local interventions already in place with a proven evidence-base.

2.) Take account of how democracy works: politicians need votes. As public health researchers we need to give them glory in the eyes of their voters and provide them with opportunities to leave a visible legacy. We could this by advertising our successes more clearly and by making it personal. Eugene Milne, Director of Public Health at Newcastle City Council, summed this up in a simple statement: "...‘it could happen to me’, mobilises people".

3.) However, to do this effectively, we need to be aware of hierarchy in politics and different policy contexts and networks. Most importantly, we need to be able to navigate diffused decision-making processes. As Paul emphasised in his presentation, policy makers have different ideas about what counts as good evidence, and there are many ‘policymakers’ across many levels and types of government. In other words, there are many sources of policy relevant knowledge that public health research evidence has to compete with.

It will take time and long-term relationship building to understand and navigate the different policy contexts, networks and types of evidence used in both. Unfortunately, public health students are generally poorly equipped to navigate these networks. Steven Hoffman remarked that we are not equipping our PhD students with knowledge of political systems and, in not doing so, set ourselves up for continued failure to make public health and our evidence visible to policy makers.

This does not mean that each student should become a political expert and advocate fiercely for her/his research findings. But it does entail a student being able to recognise their role in the wider system that they are part of, including various political networks and contexts. How can we teach our students to act from their position in a political system in a way that will make public health more visible?

This brings me back to squirrels. The squirrels that I encountered in the park stood out because they were black; a different colour to the common British grey and (less common) red squirrels that I’m used to seeing. In a similar vein, we could make our PhD students stand out by teaching them how to take evidence shortcuts in the political system.

Sharon Hodgson, Shadow Minister for Public Health, speaking
at an event in Sunderland

When I returned to the UK, with more appreciation for squirrels, I attended a spotlight event at the University of Sunderland the next day, which aimed to increase the visibility of public health research at the university. Although heavily jet-lagged, what sparked my interest at the event was a debate that took place between Sharon Hodgson, the Shadow Minister for Public Health and various researchers in the room. They sparred about the evidence for introducing a minimum unit price for alcohol in England and whether 40p made more ‘sense’ (and to who) than 50p. The ensuing debate demonstrated many of the arguments made in this blog and therefore will be the focus of my next blog (part 2) with John Mooney, Senior Lecturer at the University of Sunderland.

We will use this example to demonstrate how Canadian experiences might inform local practice in the UK by recrafting the narrative, taking account of Labour as an opposition party, and making it personal for voters.


Image: "Black Squirrel" (11997818194_8f66516b30_z) by DaPuglet via Flickr.com, copyright © 2018: https://www.flickr.com/photos/dapuglet/11997818194

Monopoly money, pitching to the converted, and sending Mr Grumpy away happy: doing home and healthy ageing research differently

Dr Philip Hodgson, Senior Research Assistant, Northumbria University

Endings are rubbish, right?  Whether it be a great novel, play, film, TV series – there’s always that feeling that no matter how things are pulled together, it will never be as good as you have pictured in your imagination.  And then, you know, it just ends…

It was perhaps with this in mind that we decided to take a different approach in the last of our four workshops on home and healthy ageing.  Rather than guest speakers being invited to share their knowledge and prompt discussion, the project team attempted to summarise and pitch their ideas for future research back to the group (think Dragons’ Den).  This proved to be challenging, as the previous sessions had been so rich that even synthesising them into brief slides was difficult, never mind placing them in a strategic context for the participants to critique and reflect upon.  Yet, three key themes were identified.  These were in addition to the concept of a ‘home’ being more than just bricks and mortar but personal/psychological, physical and social/environment space(s) – an idea that we used as a starting block in week one and illustrated below.

More than just bricks and mortar
'Home' illustration used in the seminars 

The key themes were:

• Policies and contexts: not only a tension between housing and health policies, but also the need to consider market and narrative factors influencing housing and health decisions;
• The life course approach: the need to think about housing as an individual pathway, in which preventative measures and services are considered before crisis point;
• Transitions and soft services: the need for support to be available as and when people experience key housing and life changes, such as reduced physical health, retirement, or the loss of support networks and being able to navigate different services on offer.

However, this is where we’d like to leave you with a cliff hanger: rather than going through each of themes in-depth (fans of this series will have to wait for our spin off…  er, research papers for that!), we’d instead like to reflect on our process at this stage.  These sessions took a slightly different approach as, rather than being a series of open seminars with presentations that people could dip in and out of, we invited several key individuals to attend each session in turn.  The reasons for this were many, but primarily we wanted to ensure that a diverse range of backgrounds were represented throughout (housing providers, architects, academics, local authority workers, homelessness workers, etc.) to go on a learning journey with us as a research team.  This meant that by the time we reached the final session, there was enough of a shared understanding that we could make the most of the group’s commitment to the project – we would be actually able to start to pin down quite complex concepts, practical issues and, hopefully, future projects.

We tried out different formats to structure the discussions: from world cafés, to games (with Monopoly money!) with researchers pitching ideas to mock panels, which worked to various degrees but always ensured a lively debate.

Do not pass Go. Do not collect £200
Pitching ideas with Monopoly money 

There were, of course, some difficulties.  As I’m sure everyone reading this will know, it is a lot to ask of a practitioner to take one morning out of their schedule, let alone for four seminars.  As a result, engagement had to remain a constant focus and I spent much time nervously lingering by the registration desk hoping for just a few more name badges to disappear before we started!  It was also a challenge in terms of managing the conversations during the sessions: you want all voices to be heard in such a diverse group but we all needed to be pulling in the same direction by the end.

Yet, by the final session, the rewards were immense.  Not only were we able to pitch ideas to a group who had already undergone some of the same learning as us, but this gave everybody the confidence to relate the complex theoretical issues to their own practice (allowing us to capture the breadth of what was possible).  It allowed us to discuss concrete projects, and leave the session with a sense of trust that networks were in place to actually deliver on them.  Perhaps most importantly we found that, what started as a broad idea, was something of relevance across the housing and health sectors.  Even the grumpiest of the project group (naming no names) left the day with a spring in their step.  For that alone, everyone who attended deserves some massive thanks…

So, who needs endings, when we can all just sign up to the sequel?

To be continued…

Photo 2: By James Petts from London, England (Monopoly) [CC BY-SA 2.0 (https://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Star Trekkin' across the (research and quality improvement) universe

Posted by Peter van der Graaf, AskFuse Research Manager, Teesside University

Does improving the quality of care from health organisations need research? This was the question asked at the Annual Network Event of the Clinical Research Network for the North East and Cumbria. The network has been successful over the last four years in bringing together a wide range of clinical staff across the region and promoting and supporting high quality health research, which was celebrated at the event, but the organisers didn’t shy away from asking some tough questions.

Q (John de Lancie) pictured behind Captain Jean-Luc Picard (Patrick Stewart)

While the network has put a strong focus on numbers, particularly related to regional recruitment targets for patients in trials, its clinical Director, Professor Stephen Robson, acknowledged that this was only part of the story and that it also ignored what happened later in the research process. For instance, how do we ensure that the research findings get adopted by practice organisations? Brilliant studies are useless if they don’t result in changing clinical practice. But how to change this practice?

The event therefore put a renewed focus on quality improvement. How can we help health professionals to improve their practice? One of the network’s partners, the Academic Health Science Network for the North East and Cumbria (AHSN NENC), joined forces last year with NHS Improvement and the Health Foundation to play a leading role in the national roll out of the Q community.

Unfortunately for us ‘Trekkies’, this is not a new Star Trek episode about the famous Q tormenting various Starfleet Captains; instead, the Q community is a force for good that connects health professionals across the UK to improve health and care quality. The community supports members in their existing improvement work and tries to enhance their skills, helps members to share ideas and enable them to make changes in their organisations that benefit patients.

For this episode, Q came out of the 2013 Berwick report, which followed the publication of the Francis Report into the breakdown of care at the infamous Mid Staffordshire Hospital. The report urged health organisations to make better use of members of staff with improvement expertise and made a case for a system devoted to continual learning and improvement. In response, NHS Improvement (with support from the Health Foundation) developed the Q community in 2015, which now has 236 members in the North East (5000+ nationally) and is expected to grow considerably over the next few years.

I unashamedly applied to become a member of this network last year and they were crazy enough to accept me, so I was looking forward to the Q workshop at the annual event, led by Suzy Cook. The workshop looked at the link between research and quality improvement but, to my surprise, focused on the differences and argued that they should be viewed as separate activities with distinct aims, following different processes and timescales. Research was described as a linear and long-term process that is mostly concerned with the effectiveness of existing and new services, while quality improvement was pictured as a more cyclic and shorter term process with linked PDSA cycles (Plan-Do-Study-Act) that focus on the sustainability of services.

This distinction does not do justice to both activities and feels like a rather odd separation: why can’t research inform what practice needs to improve and how? And what about evaluating quality improvement; isn’t research a key component of the PDSA cycle? Luckily, participants in the workshop raised the same objections and an alternative view was provided in the next workshop by Seamus O’Neill, Chief Executive of AHSN NENC.

He argued instead that there was a clear link between research and quality improvement by looking at the adoption of research in the NHS. Quality improvement needs evidence to select the right intervention in the right context. Just sinking money into an innovation because we think it is going to make a difference will not impress funding and commissioning bodies. At the same time, he warned that many quality improving and cost-saving interventions are not used by health care organisations. They are either not aware of them (clinicians do not read journal articles) or they do not know how to adopt them (how can we make it work here?). According to Seamus, this is where quality improvement can come in: using dedicated health professionals, such as the Q community, and their skills to study, plan, do and act on the research evidence.

Researchers and quality improvement professionals need each other, not to put more clear blue water between them, but to make both activities more useful and effective. Even Q in Star Trek perhaps saw the wisdom of this when he remarked: “I look at the universe in an entirely different way now. I mean, I can't go around causing temporal anomalies or subspace inversions without considering the impact it'll have”. (Star Trek: Voyager: The Q and the Grey #3.11, 1996).

North East and North Cumbria - Annual Network Event: Research Matters was held on 26 April at the Stadium of Light in Sunderland.

Photo attribution: “John de Lancie, Denise Crosby (at back), Patrick Stewart, Star Trek TNG, "Encounter at Farpoint," 1987” by Classic Film © 2015: https://www.flickr.com/photos/29069717@N02/20607700773