Study collecting the views of young people, parents of children with long COVID, and doctors, finds that long COVID in children is poorly understood by doctors

Posted on July 21, 2021July 20, 2021 by lindsey.pike

Dr Katharine Looker

‘Enhancing the utilization of COVID-19 testing in schools’, is a study which will look at the characteristics of long COVID and COVID-19 infection in children. ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. The study is being funded as a result of a rapid funding call by Health Data Research UK (HDR UK), the Office for National Statistics (ONS) and UK Research and Innovation (UKRI). The study forms part of the larger Data and Connectivity National Core Study, which is led by HDR UK in partnership with ONS.

The COVID-19 testing in schools study is related to the CoMMinS (COVID-19 Mapping and Mitigation in Schools) study being undertaken by the University of Bristol in partnership with Bristol City Council, Public Health England [PHE] and Bristol schools. CoMMinS aims to give us an understanding of COVID-19 infection dynamics centred around school pupils and staff and onward transmission to family contacts, using regular testing. Our study will jointly analyse data from CoMMinS, along with information from Electronic Patient Records, and data from the COVID-19 Schools Infection Survey (SIS; jointly led by the London School of Hygiene & Tropical Medicine [LSHTM], PHE, and ONS). The SIS is a study similar to CoMMinS but carried out nationally.

To help inform research questions and methods for the study, members from the University of Bristol study team gathered views about long COVID in children between 9 March and 30 April 2021 from:

seven young people from the NIHR Bristol Biomedical Research Centre Young People’s Advisory Group (YPAG)
five families whose children have long COVID or suspected long COVID, recruited through two online UK campaign groups for long COVID, and
a survey completed by four GPs and one paediatrician, and an online meeting with two paediatricians.

It is important to note that the opinions gathered were based on small samples which may not be representative.

Through the meeting and survey with the doctors, the study team found that clinical understanding of long COVID in children is currently very limited.

The doctors said that it may be hard to distinguish between long COVID and other conditions with similar symptoms. Many of the symptoms of long COVID, like fatigue and feeling sick, aren’t very specific, and are common to many different conditions. Long COVID in children currently lacks a clinical definition, making diagnosis difficult. It isn’t yet properly understood whether long COVID is a new condition in itself, or a group of conditions like post viral fatigue, which is already recognised.

Young people, and families of children with long COVID or suspected long COVID, who were also asked for their opinion, said that feeling sick or stomach pain, extreme tiredness, and headaches were the symptoms they would rank as most ‘harmful’. For young people, this was based on them imagining having the symptoms. For the families, this was based on their first-hand experience.

The families also said that the symptoms their children were experiencing were numerous, often very severe, and more wide-ranging than those currently listed on the NHS website for long COVID. It is not yet clear what is causing the unusual symptoms.

The families said that they had struggled to get a diagnosis and treatment for their children. They also said that long COVID symptoms were having a significant impact on their children’s day-to-day lives both physically and psychologically, and that some of the children had missed school because of the symptoms. Some of the families also found fevers difficult to manage because their children had to miss school to self-isolate every time they had a fever. They wanted to know why the set of symptoms were being experienced, and why their children in particular had developed them.

It is not known how many children have or will develop long COVID. So far, studies which have tried to measure the rate of long COVID in children suggest it is rare. However, quantifying the number of cases is made difficult by a lack of clinical understanding of long COVID including the lack of an agreed clinical definition. The opinions collected suggest that relying on clinical diagnoses alone will under-estimate cases. On the other hand, there needs to be a cautious approach to estimating the number of cases based on non-specific symptoms, as other conditions which cause similar symptoms may be counted as well.

Caroline Relton, Professor of Epigenetic Epidemiology and Director of the Bristol Population Health Science Institute at the University of Bristol, joint lead for CoMMinS and one of the lead authors of the report, said: “The opinions we gathered further highlight that it is difficult to count the number of children with long COVID on the basis of diagnoses alone while long COVID in children remains poorly defined.

“There are added complications of studying long COVID in children, when it is sometimes difficult to disentangle what might be the result of experiencing infection from what might result from the wider impact of experiencing the pandemic. Isolation, school closures, disrupted education and other influences on family life could all have health consequences. Defining the extent of the problem in children and the root causes will be essential to helping provide the right treatment and to aid the recovery of young people who are suffering.”

The findings highlight that examining GP and hospital visits, and school attendance, might currently be a more useful and feasible way of assessing how COVID-19 has affected children, rather than relying only on diagnoses of long COVID. However, the study researchers also need to be aware how often healthcare is accessed according to need, and absence from school due to self-isolation, which will affect what is being measured.

Feeling sick or stomach pain, extreme tiredness, and headaches will be important symptoms to consider in the study.

Read the full report

Find the full report on the CoMMinS study news page.

Using evidence to advise public health decision makers: an insider’s view

Posted on December 18, 2019December 18, 2019 by lindsey.pike

This blog post reviews a recent seminar hosted by the MRC IEU, PolicyBristol and the Bristol Population Health Science Institute.

Public health is one of the most contested policy areas. It brings together ethical and political issues and evidence on what works, and affects us all as citizens.

Researchers produce evidence and decision-makers receive advice – but how does evidence become advice and who are the players who take research findings and present advice to politicians and budget-holders?

We were pleased to welcome a diverse audience of around 75 multidisciplinary academics, policymakers and practitioners to hear our seminar speakers give a range of insider perspectives on linking academic research with national and local decisions on what to choose, fund and implement.

In this blog post we summarise the seminar, including links to the slides and event recording.

Seminar audience — Seminar attendees in the Coutts lecture theatre. Image credit: Julio Hermosilla Elgueta

Chair David Buck from The King’s Fund opened the event, highlighting the importance of conversations between different sectors of the evidence landscape, and of local decision-making in this context.

‘The art of giving advice’

The session was kicked off by Richard Gleave, Deputy Chief Executive, Public Health England, who is also undertaking a PhD on how evidence is used in public health policy decision making.

His presentation ‘Crossing boundaries – undertaking knowledge informed public health’ set the context, observing that most academic teams – from microbiology labs to mental health researchers – aim to improve policy and practice; but ‘the art of giving advice is as important and challenging as the skill required to review the evidence’.

Richard then introduced a range of provocations and stereotypes about how the policy decision making process can be framed.

Citing Dr Kathryn Oliver, he encouraged attendees to challenge the idea that there’s an ‘evidence gap’ to be crossed, and instead focus on doing good working together to improve the public’s health.

Giving an example of the Institute for Government’s analysis of how the smoking ban was enacted, he noted the role of a small number of influential groups and individuals in securing a total ban in 2007. He encouraged actively crossing the boundaries between academia, policy and practice, and working with boundary organisations and influencers as part of this process.

‘Partnerships between science and society’

Professor Isabel Oliver gave a second national perspective.

Speaking as a research-active Director of Research, Translation and Innovation and Deputy Director of the National Infection Service, she suggested that ‘Partnerships between Science and Society’ are the key to evidence based public health.

She questioned why is it when we have such an abundance of research, we still don’t have the evidence we need? And why does it take so long to implement research findings? She argued that a key issue here is relevance; how relevant is the research being produced, especially to current policy priorities?

Isabel outlined challenges including:

Needing evidence quickly in response to public health emergencies, and not being able to access it, for example how to bottle-feed babies during flooding crises, or whether to close schools during flu pandemics
Mismatched policy and research priorities; e.g. policy needing evidence on the impact of advertising on childhood obesity, but research focusing on the genetics of obesity
The (unhelpful) prevalence of ‘more research needed’ as a conclusion, and knowing when the evidence is sufficient to make a decision
A need to develop trust between stakeholders, made more challenging by the frequency of policy colleagues moving roles.

She also questioned whether the paradigm of evidence-based medicine works for complex issues such as public health or environmental policy.

Isabel concluded with some observations; that broader and more collaborative research questions that address the real issues are needed; and collaborating with a broad range of stakeholders, including industry and finance, should not be discounted.

She finished by reiterating a call for public health advice that is relevant, and responds to a policy ‘window’ being open.

Seminar speakers L-R: Dr Olivia Maynard, Richard Gleave, Professor Isabel Oliver and Christina Gray. Image credit: Julio Hermosilla Elgueta

‘Local perspective’

Christina Gray, Director of Public Health at Bristol City Council gave the local view, providing a helpful explanation of her role and the process of decision making within a local authority.

She outlined three key principles:

The democratic principle; elected members are ‘the council’; officers (including her role) provide advice. Local authorities are close to their people and are publicly accountable. Their decisions are formally scrutinised and need to be justified, and resource allocation is a key – and stark – challenge, especially in the context of austerity.
The narrative principle: how the society that the authority represents holds multiple legitimate (and competing or conflicting) perspectives and realities, which all need to be considered.
The (social) scientific principle; the development of human knowledge in a systematic way – which is then shared into the democratic process, as one of a range of narratives.

Christina outlined a case study example of an initiative on period dignity which Bristol City Council is leading as part of Bristol’s One City Plan, and how the evidence base for the programme was located and used. She posed the question of what evidence matters locally, and suggested that evidence of impact, economic evidence, and retrospective evidence that demonstrates whether what has been done works, in order to build on it, are the most helpful. To close, Christina highlighted the importance of being ‘paradigm literate’ in order to navigate the complexity of public health decision making.

Academic perspective

Our final speaker, Dr Olivia Maynard, gave an academic perspective on how to advise decision makers.

Focusing on practical tips, she outlined her own work on tobacco, smoking, e-cigarettes, alcohol and other drugs and how she has engaged with various opportunities to work with policymakers.

Starting with a clear case for doing the work (it’s important, it’s interesting, to create impact), she went on to outline methods of engagement:

Proactively presenting your work; introduce yourself to policymakers interested in your area such as MPs, Peers, APPGs, subject specialists in parliamentary research services, advocacy groups, and PolicyBristol; review Hansard and Early Day Motions; get involved in parliamentary events
Respond to calls for evidence (University of Bristol researchers can find curated opportunities via the PolicyBristol PolicyScan)
Work directly with policymakers, for example via Policy Fellowships (for example with POST)

Olivia outlined some reflections around the differences between academia and policymaking.

Timelines for action is one, but she also used the changes towards plain packaging as an example to note that the policymaking process can span numerous years, presenting many opportunities for intervention.

She referred back to Christina’s point about ‘multiple competing realities’ to highlight that evidence is one of many factors to consider in policymaking.

She also encouraged academics to challenge ‘imposter syndrome’, by emphasising ‘you are more of an expert than you think you are’, and needing to make yourself known to be offered opportunities.

Where next?

Chair David Buck highlighted a number of themes running throughout the presentations including recognising the paradigms used by different stakeholders; questioning what counts as evidence, and being able to provide advice from an uncertain evidence base; and what these themes mean for all of us (and how willing are we to act on these reflections?)

The seminar concluded with a facilitated Q&A session spanning topics such as:

Should all research which influences policy be coproduced with user groups and policymakers?
What kind of ‘payback’ do stakeholder organisations need for their involvement in research projects?
How should researchers develop the skills needed to cross boundaries?
What funding is available for policy relevant research?
How can we make our evidence ‘stand out’?
Should academics have a responsibility to critique policy?

The seminar started numerous conversations which we hope to continue.

Chair David Buck facilitates our Q&A. Image credit: Julio Hermosilla Elgueta

Access the slides:

1. Richard Gleave Crossing boundaries – undertaking knowledge informed public health

2. Isabel Oliver Partnerships between science and society

3. Christina Gray Evidence into practice

4. Olivia Maynard An academic’s perspective

View a recording of the event on the IEU’s YouTube channel: https://www.youtube.com/watch?v=-ew-RvzV-D0

Contact lindsey.pike@bristol.ac.uk if you’d like to hear about future events.

How can researchers engage with policy?

Posted on July 22, 2019July 29, 2019 by lindsey.pike

Dr Alisha Davies

Dr Laura Howe

Prof Debbie Lawlor

Dr Lindsey Pike

Follow Alisha, Laura, Debbie and Lindsey on Twitter

Policy engagement is becoming more of a priority in academic life, as emphasis shifts from focusing purely on academic outputs to creating impact from research. Research impact is defined by UKRI as ‘the demonstrable contribution that excellent research makes to society and the economy’.

On 25 June 2019 the IEU held its first Engagers’ Lunch event, which focused on policy engagement. Joined by Dr Alisha Davies, Head of Research from Public Health Wales, Dr Laura Howe, Professor Debbie Lawlor and Dr Lindsey Pike from the IEU facilitated discussion drawing on their experiences – from both sides of the table – of connecting research and policy. Below we summarise advice from our speakers about engaging with policy.

The benefits of engaging with policy & how to do it

As an academic you need to consider what your ‘offer’ is. What expertise do you bring? This may be topic specific knowledge or relate to strong academic skills such as critical approaches to complex challenges, novel methods in evaluation, health economics. Recognise where you add value; the remit of academia is to develop robust evidence in response to complex and challenging questions using reliable methods – a gap that those in practice and /or policy cannot fill alone.
Find the right people to engage with – who are the decision makers in your area of research? Listen to what is currently important to inform action / policy. Read through local and national strategies in your topic of expertise to understand the wider landscape and where your work might inform, or where you might be able to address some of those key gaps. Academics can also submit evidence to policy (colleagues from the University of Bristol can access PolicyBristol’s policy scan, which lists current opportunities to engage).
Be visible and actively engage. Find out what local events are going on in your area related to your research and go along to meet local public health professionals. It’s a good way to meet people, find commonalities and form collaborations.
Condense your new research into a short briefing, identify what it adds to the existing evidence base, how does it inform given the wider context.
As an academic you will have a network of other research colleagues. Policymakers value being able to draw on this network for information. When providing evidence, don’t just cite your own – objectivity is one of the key advantages of working with academics, and policymakers value your intellectual independence. Your knowledge of the broader evidence base is invaluable.
Setting up a research steering group or stakeholder panel can be a great way to develop your relationships and ensure your research is speaking to policy, practice or industry priorities. Key to this is getting the right people involved – this blog post from Fast Track Impact has some useful advice.

The challenges of engaging with policy & how to navigate them

Academic and policymaking timescales are different. Policymakers need an answer yesterday while academics may not feel comfortable with providing a definitive response without time for reflection. There’s a need for flexibility on both sides.
There are also tensions between the perceived need for certainty and ability to be able to provide it. Policymakers may want ‘an answer’, but the evidence base may not be robust enough to give one. It is more useful to outline what we do and do not know, with a ‘balance of probabilities’ recommendation, than to say ‘more research is needed’.
Language can also be a barrier. Academic language is complex and, at times, impenetrable; policymaker documents need to be aimed at an intelligent lay audience, without jargon, and focusing on what matters to them (outlining policy options and the evidence base behind them – not lengthy discussions of statistical methods). Look at Public Health Wales’ publications, for example on digital technology, adverse childhood experiences and resilience, or mass unemployment events, or examples from the NIHR Dissemination Centre or PolicyBristol to get a sense of the language to use.
Do you think you have time for networking with non-academic stakeholders? The perception of opportunity costs can be another barrier for academics. While time for networking might not be costed into your grant funding, think of it in the same way as writing a grant application; you can’t guarantee the outcome but the potential reward is significant.
There are no guarantees in policy engagement work, and a level of realism is required around what findings from one study can achieve. Policymaking is a complex and messy process; the evidence base is just one factor in decision making. Your recommendations may not be taken up because of politics, resource issues, or other concerns taking priority. Sometimes your relationships will reach honourable dead ends, where you realise that interests, capacity or timescales are not as aligned as you thought. Knowing this before you start is important to avoid feeling disillusioned.

Cartoon showing complexity of policymaking process and comparing it to making sausages — Policymaking is a complex and messy process; the evidence base is just one factor in decision making. Image from Sausages, evidence and policymaking: The role of universities in a post-truth world, Policy Institute at Kings 2017

In summary, the panel concluded that policymakers are interested in academic research as long as their priorities are addressed. While outcomes are not guaranteed, our colleagues at PolicyBristol advise a strategy of ‘engineered serendipity’ – looking for and capitalising on opportunities, being ready to talk about your research in a clear and policy orientated way (why does your research matter and what are the key recommendations?) and aim to build long term and trusting relationships with policymakers.

If you’d be interested in attending a future Engagers’ Lunch, please contact Lindsey Pike.

Further information & resources

PolicyBristol aims to enhance the influence and impact of research from across the University of Bristol on policy and practice at the local, national and international level.

Public Health Wales Research and Evaluation work collaboratively across Public Health Wales and with external academic and partner organisations, and are keen to facilitate research links across Public Health Wales with new national and international partners.

Research impact at the UK Parliament ‘Everything you need to know to engage with UK Parliament as a researcher’

Parliamentary research services across the legislatures include:

House of Commons Library: an independent research and information unit. It provides impartial information for Members of Parliament of all parties and their staff.
Parliamentary Office of Science and Technology: Parliament’s in-house source of independent, balanced and accessible analysis of public-policy issues related to science and technology.
Research and Information Service (RaISe): aims to meet the information needs of the Northern Ireland Assembly Members, their staff and the secretariat in an impartial, objective, timely and non-partisan manner.
Scottish Parliament Information Centre (SPICe): the internal parliamentary research service for Members of the Scottish Parliament.
Senedd Research: an expert, impartial and confidential research and information service designed to meet the needs of Wales’ National Assembly Members and their staff.