Catching golden opportunities to create public health evidence as they fly by...

Posted by Dr Helen Walters, NIHR Public Health Consultant Advisor

This week it was announced that a UK collaboration led by Fuse had been awarded prestigious funding to lead a Public Health Intervention Responsive Studies Team (PHIRST), as part of a new national scheme. 

Dr Helen Walters, NIHR Public Health Consultant Advisor

Here Helen Walters introduces the four newly launched public health research teams, contracted under the PHIRST scheme, to enable local authorities to rapidly evaluate interventions aiming to improve health and tackle health inequalities in their areas.

When I was a Director of Public Health in London I knew that my team were delivering innovative schemes that affected large numbers of people. Our hope was that the schemes would improve health and reduce the health inequalities experienced by some highly deprived populations. But we didn’t really know whether they were achieving this.

Did the Healthy Schools programme working across more than 1,500 schools in the capital improve the health of thousands of children? Did the Healthy Workplace award scheme improve sick leave levels for London’s employers? Would getting the Healthy Streets approach into the heart of the Mayor’s Transport Strategy make any difference to physical activity levels in the city?

We were basing these schemes on the little evidence that was available, but we could not find a way to get them evaluated to build that evidence-base any further. Public health practice in local government is mainly distant from academic public health research. Local government does not have a culture of undertaking research. It moves fast, and does not have routes into research funding. Golden opportunities to learn and evaluate were being lost.

The PHIRST Scheme

The NIHR’s Public Health Research programme (PHR) is experimenting with a new scheme to try and solve this conundrum – the PHIRST scheme. PHIRST stands for Public Health Intervention Responsive Studies Teams. The idea is that the PHR contracts with four academic teams who are ready and waiting, fully-funded, to evaluate schemes that are happening in local government across the UK.

The timing could probably not have been worse but somehow, despite pestilence and lockdown, we have managed to appoint four teams, and to match them up with four local authorities that are keen to have their schemes evaluated. Issues include:

• free school breakfast clubs in Hammersmith and Fulham
• citizen-informed design of employment support in Fife - Fuse project in collaboration with Fife Council
• remote provision of drugs and alcohol services in Leeds 
• reducing exposure to adverts for foods that are high in fat, salt and sugar (HFSS) on the transport system in Yorkshire 

The PHIRST teams are led by prominent public health researchers: Ashley Adamson (Newcastle University), Susie Sykes (London South Bank University), Rona Campbell (University of Bristol), and Katherine Brown and Wendy Willis (University of Hertfordshire). They will work closely with each local authority to co-create the evaluation with the heavy lifting being undertaken by the PHIRST teams and fully funded by the NIHR, starting in September.

Timely and accessible research for local authorities

And in a few months the PHR programme will go out to Directors of Public Health and ask for more schemes to evaluate, so we can keep the PHIRST teams busy. If it works the plan is to make this a rolling programme.

Local authorities have huge opportunities to influence health and health inequalities but without an evidence-base they cannot maximise these opportunities. The hope is that this scheme will provide timely and easily accessible evaluations for those who are still hard-pushed Directors of Public Health so that, in the future, there will be an evidence-base.

For further information please visit the NIHR website or email phr@nihr.ac.uk.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.

Helen Walters' blog was originally published on the NIHR website.

Does antibiotic prescribing penalise communities in most need?

Posted by Adam Todd, Reader in Pharmaceutical Public Health in the School of Pharmacy, Newcastle University

Since the discovery of penicillin by Alexander Fleming in the 1920s, there have been over 150 antibacterial drugs developed and marketed for human or veterinary use. The effect these drugs have had on infectious diseases and population health is remarkable. A once considered serious bacterial infection can now be successfully managed using antibiotics prescribed from the doctor. This was not always the case, as our grandparents may testify: bacterial infections were often fatal and the choices available to manage such infections were limited. Bloodletting for pneumonia, mercury for syphilis, and honey for wound infections were all commonly used approaches before the discovery of antibiotics.

This "golden age" of discovery may, however, soon come to an end, as more and more bacteria are becoming resistant to the antibiotics available to us. It is for this reason that healthcare organisations across the world have been focusing on developing 'stewardship policies' to promote the appropriate use of antibiotics. In England, the situation is no different, and the Department of Health and Social Care has developed an antimicrobial resistance strategy. As part of the plan, doctors have been urged to reduce the amount of antibiotics they prescribe when it is safe and appropriate to do so. As the majority of antibiotic prescribing occurs in primary care settings, such as GP surgeries, healthcare providers working in this setting are set specific prescribing targets.

It is important to establish if the polices are working from an antibiotic stewardship perspective, but also that these polices are fair, and do not penalise communities in the most need of care. Our work aimed to address these questions. To do this, we used antibiotic prescribing data from the NHS, as well as working out the characteristics of the local areas in England using nationally available data sources.

Overall, we found that, in England, the plan to reduce antibiotic prescribing appears to be working: since 2014, antibiotic prescribing has reduced by around 14 per cent. We also found that the prescribing of 'broad spectrum' antibiotics, used to treat a wide range of infections, have also reduced.

When we considered local factors in our analysis, we showed that the most deprived areas of England had the highest levels of antibiotic prescribing. And even when we factored in two long-term conditions – diabetes and Chronic Obstructive Pulmonary Disease – both of which are associated with increased antibiotic use, we still found higher levels of prescribing in the most deprived areas of the country. We also showed that geography was an important factor too: compared to London, all other areas of England had higher levels of antibiotic prescribing – with the East of England, and the North East of England having the highest levels.

You might ask why this is important? Well, that's a good question. Our work shows that in addition to a national strategy to reduce antibiotic prescribing, it is important to consider local needs too. People living in more deprived areas might, for example, have greater health need for antibiotics compared to people living in more affluent areas. National one-sized-fits all targets might not necessarily account for this. If there is greater antibiotic need in deprived areas, doctors working in these areas might be unfairly penalised for prescribing them. This is not fair on the doctors working in primary care, but may also impact on patients too.

The antibiotic stewardship polices appear to be reducing overall antibiotic prescribing, which is a positive thing, although there is still significant variation in prescribing across England. It would be appropriate for future prescribing targets to account for local factors to ensure the most deprived communities are not inappropriately penalised.

The bottom line is if someone is in medical need of an antibiotic, they should be prescribed it, regardless of the characteristics of their local area or where they live.

Adam leads a programme of research that explores how pharmaceutical interventions, including medication, immunisation and screening approaches, can be used safely, appropriately and equitably at a population level.

Image: 

"England Map silhouette" designed by Creazilla: https://creazilla.com/nodes/2538-england-map-silhouette. You may obtain a copy of the License at https://creativecommons.org/licenses/by/4.0/.

It’s not just teaching and curriculum that need a boost in September - what about school fruit and veg?

The School Fruit and Vegetable Scheme offers 2.3 million children aged 4 to 6 attending state-funded primary schools in England a free piece of fruit or veg each school day. It was suspended in March and after months of campaigning the Government finally confirmed the scheme will resume in the Autumn. But how could this Scheme go further to better meet Government aims?

Sofia Parente, Sustainable Food Places Policy & Campaigns Coordinator at Sustain: alliance for better food & farming

Credit: Pexels.com cottonbro

School holidays are upon us and this year, for the first time, 1.3 million UK children on free school meals will have access to support during July and August. Universal Infant Free School Meals and the School Fruit and Vegetable Scheme, suspended when schools closed in March, will be back in September. This should be cause for celebration but unfortunately, it’s not just teaching and curriculum needing a boost in September. Even in ‘normal times’ 80% of children were not eating their 5 A Day. Following lockdown, there’s been a massive decrease in fruit and vegetable intake reported by children receiving free school meals, according to a study from Northumbria University’s Healthy Living Lab. In this study just over half of pupils who would have received free school meals on site stated they had eaten no fresh vegetables across a three-day period following the UK’s COVID-19 lockdown. Vegetable intake dropped from just over two portions per day when children were attending school, to an average of half a portion per day at home. Almost half said they had eaten no fruit in the same period, yet many reported a large increase in their consumption of sugary drinks and snacks. 

As a school Governor and mother of two children in primary school, I’ve heard countless praises of the School Fruit and Vegetable Scheme. Children are naturally hungry mid-morning and fruit and vegetables are the perfect snack. By eating together in the classroom or playground, pupils try fruit and veg that they wouldn’t otherwise try at home. Only last week my niece (a fussy eater when it comes to veg) told me the first time she had ever tried sugar snap peas was in Year 2 when she had free fruit and veg at school. Teachers often integrate it in the curriculum too by using fruit and vegetables in numeracy and literacy lessons.

The reinstatement of the School Fruit and Vegetable Scheme is good news but still some way off when it comes to tackling historical low levels of fruit and veg consumption and under-investment in school food. It only reaches children in Key Stage 1 (pupils aged between 5 and 7) in England and there is no comparable scheme in Wales or Northern Ireland, although in Scotland some local authorities fund fruit in schools.

BIGGER

One of the best ways to ensure children increase access to fruit and vegetables at school is to bring back the scheme bigger and better and to introduce it to other nations in the UK. An efficient procurement process and network of delivery centres makes it possible to deliver 2.3 million pieces of fruit and vegetables to 16,600 schools in England every school day working out at around 8p per child per day. We’ve seen extraordinary progress in food and farming strategy this week. The first report from the National Food Strategy includes strong recommendations to address food poverty and inequality. And the Government’s obesity strategy has arguably some of the most ambitious new policies to date, particularly the 9pm advertising watershed for unhealthy food, with parallel restrictions online and on social media, along with constraints on promotions and progress on labelling. Expanding the scheme to all children in primary school using the set up already in place would be a remarkable value for money measure to help Government meet the ambitions of these two new strategies by helping to level off some of the inequalities in access to fresh fruit and vegetables and would be a game changer given the low levels of fruit and veg eaten by children. The latest evaluation of the scheme shows that while it leads to an increase in younger children eating fruit and veg, longer and integrated interventions would lead to long-lasting impact and sustained levels of consumption in older children.

Better

The first and easiest change to improve the scheme would be to increase the proportion of British seasonal fruit and veg produced to higher standards. According to the Soil Association, only 30-40% of this produce is grown in the UK. Why are we serving imported rock-hard apples to children in schools surrounded by apples in season in orchards in Kent and Somerset or to children anywhere in the UK come to that? This flagship Government procurement scheme should be supporting British farmers and traders, not least to support the aims of other Government departments, but to help the economy, especially now after Britain’s departure from the EU and the uncertainty in the food and farming sector triggered by COVID-19.

The School Fruit and Vegetable Scheme should be re-specified to provide a year-on-year percentage increase of seasonal and certified sustainable produce - such as the Organic or LEAF (Linking Environment And Farming) mark - to help drive towards the Government’s aims in the Environment Bill, Agriculture Bill and climate legislation. This would result in increased fruit and vegetable consumption and benefit British farmers, children and the environment.

Image: Credit: Pexels.com cottonbro

The tickle monster, the exhausted academic and the Select Committee

Posted by Dr Sophie Wickham, Wellcome Trust Research Fellow, Dept of Public Health & Policy, University of Liverpool

In the second instalment of our posts about giving evidence to parliament during lockdown, Dr Sophie Wickham writes about navigating work and childcare in preparation to appear before TWO committee panels.

How do you adequately prepare for what feels like the most important milestone in your academic career? In ‘The Before Time’, pre-lockdown, for me, this would have meant revising and rehearsing, collecting advice and feedback from mentors and peers – and repeating the process until I felt polished and confident. It can take hours, days even, of focus, repetition and attention to detail, to hone the take-home messages from the research, and ensure that, under pressure, they are communicated with ease. But in the early days of these ‘Strange New Times’, this usual process became untenable. Part of my mind was devoted to worrying about the future, the rest to entertaining a 3-year-old, rolling around on the floor, playing eye-spy or assuming the role of an otherworldly tickle monster. My powers of persuasion were devoted to parenthood, begging my child to try new foods – the consequence of supermarket shortages in the early days of panic-buying – or to join me on long walks, in the faint hope of a full night’s sleep, so far elusive. Navigating a full day’s childcare and snatching some hours of work at dawn and dusk, naturally my productivity plummeted – and with it my ability to remain engaged with my work, and to focus on the task ahead. 

What was I trying to prepare for? Two things:

1. The All-Party Parliamentary Group (APPG) on Universal Credit and Mental Health. This cross-party group brings together Members of Parliament wishing to discuss constituents’ experiences of Universal Credit, receive advice and support from various agencies, share best practice, and monitor this critical policy as it is rolled out. On 28 February, the Lancet Public Health had published the online edition of an article I had submitted with colleagues at the University of Liverpool, on the mental health impacts of Universal Credit. It had immediately been picked up by the APPG secretariat and, that same day, I had received an invitation to speak before the group. With lockdown came a hiatus in all physical oral evidence presentations, and the event had been deferred and moved online. As it turned out, the new date was only a week after what was to be a second daunting event.
2. The House of Commons Work and Pension Select Committee (SC) on Universal Credit and the wait for first payment. The Select Committee had opened an inquiry into the matter and asked for written evidence. Findings from these committees are reported to the Commons, printed, and published on the Parliament website. The government then has 60 days to respond to the committee's recommendations. Just as lockdown descended, I and other researchers had submitted written evidence, combining our quantitative findings (Wickham et al 2020) with robust qualitative findings (Cheetham et al 2019). As first author on the quantitative article, I had been invited to give oral evidence, alongside Dr Mandy Cheetham, the qualitative lead (read about Mandy’s experience here).

All-Party Parliamentary Groups, senior colleagues in my Department had informed me, were relatively relaxed and involved 10-minute presentations by each panel member, followed by MP’s questions. The entire meeting would last an hour. Colleagues that have made the trip to parliament to present evidence to APPGs in person described the experience as positive – though there can be interruptions, when MPs are called to vote on bills. Select Committees are much more formal. You attend as a ‘witness’, answering questions posed by a small group of MPs – questions which you do not know in advance. Any evidence provided may be translated into recommendations from the Select Committee, to which the government must respond: the potential for evidence-based impact is huge. In short, I was terrified.

I knew that opportunities to speak directly to these committees are rare. I had been handed a brilliant opportunity, and felt the urgency and weight of responsibility in my whole body. I was told to “practice, practice, practice”. But as with many parents, the days leading up to the Select Committee, and all the days of lockdown that had gone before, were spent working at the fringes of my child’s waking hours, before 7am and after 8pm. I was able to lock in some practice interviews with senior colleagues at the tail-end of their working days or family time, and one colleague and friend spent an evening listening as I practiced, helping to fine-tune my answers.

To my relief, a few days before I was due to give evidence, my childminder resumed part-time work. For both events, I was able to fully concentrate on the task at hand. There are some advantages to providing evidence remotely:

1. You can be in your PJs from the waist down.
2. You can have notes… Notes all around you – on screens, walls, floor – anything that might catch your eye and support you in making your argument. 
3. You can do rapid research, if needed. 
4. It might feel less intimidating – after all, you are in your house, what’s the worst that can happen? 
5. Though I am dismayed by the mere existence of a “touch up my appearance” feature on Zoom, I absolutely used it. I found that it negated the need for make-up - war paint that I reserve for interviews and weddings. 
6. The simple logistical advantages. No need for travel or childcare arrangements, and, in the case of the APPG, MPs were not running off to vote on other matters and you have their undivided attention. 

I did not capitalise fully. I was in work clothes, head to toe, and my sparse notes did not obscure the screen. I felt self-conscious: seeing yourself, and the background to your everyday life in this context can be disconcerting. There is the distinct impression of giving others a window into your life that you may not want to share. But ultimately, the greatest disadvantage was the lack of preparation time. Would this be obvious, and impact how my evidence was interpreted?

The Select Committee was on the 17 June. Some initial sound problems were dealt with prior to live streaming. You are asked in advance to ensure that no one else is using your internet, and to power down any devices that access the internet, to ensure that all bandwidth is reserved for the Zoom call. When joining the call, I could see the Chair, Labour MP Stephen Timms, with a few socially distanced colleagues, in a parliamentary room. Joining remotely were the three other witnesses and other MPs, though these MPs were visible only when asking a question. I found this to be a challenge, as I tend to feed off body language and facial expressions. It felt a bit like a PhD viva, albeit an odd one. There was the same need to defend and justify my work, and the stakes were high – in this case the potential policy consequences. In the end, I felt as though I made my points. A few answers were long-winded, and I felt flustered on occasion – always a danger when you don’t know the questions in advance. When it was over, I mainly felt that more time was needed, given the depth and breadth of evidence on the topic.

The APPG was one week later. As anticipated, it was much more relaxed, but there were also many more MPs on the call, all working from home. In this committee, all questions to witnesses were presented in the chat feature. As a result, there was time to read and re-read a question before it was asked, and time to collect your thoughts before answering – something I wish I could have done for the Select Committee. This meeting also felt brief, but there was a palpable sense that both presenters and audience were eager to understand and improve the policy at hand.

Time will tell whether the evidence presented will translate into policy change. I feel good about my efforts to contribute; participating in both committee panels has been an exceptional experience. But behind the impact, behind the evidence and beyond the research, preparing for these events and sustaining the work has felt very much like keeping up with the Joneses, and I am exhausted.

Image:

1. "Do you have a last request before you go in front of the Commons Culture Select Committee?" by Grizelda Grizlingham via University of Kent, British Cartoon Archive (Reference number: GGD0368, Published by: The Independent, 25 Oct 2012, with thanks to Copyright holder: Grizelda Grizlingham): https://archive.cartoons.ac.uk/Record.aspx?src=CalmView.Catalog&id=GGD0368&pos=80

The long and winding (and emotional) road to impact

Posted by Mandy Cheetham, Research Associate, Teesside University

Having submitted written evidence to the Work and Pensions Select Committee inquiry on the impact of the 5 week wait for Universal Credit (details here), I had not anticipated being invited to give evidence by Zoom to a panel of MPs in the midst of lockdown. The evidence submitted (available here) drew on qualitative research into the experiences of claimants in North East England (Cheetham et al 2019) and quantitative research showing the mental health impact of Universal Credit, undertaken by colleagues from Liverpool University (Wickham et al 2019). Dr Sophie Wickham and I were both invited to be part of a panel for the second evidence session. I had watched the first evidence session to see the lines of inquiry pursued, realising (with dismay) it was available live on parliament tv.

As witnesses, we had been given a broad indication of the areas on which MPs would focus their questions. These included the effects of the 5 week wait, its impact on mental health, and our thoughts on what could be done to mitigate the adverse effects. I had read and re-read our research paper, digested more recent reports and published literature and carefully prepared my responses to the anticipated questions. I had emailed colleagues in local advice organisations to see if the issues identified in the research were still relevant. I had a chat with a university colleague who had given evidence to a different committee drawing on our research on energy drinks 2 years previously. A final check that the technology worked in a test call the afternoon before and all was set.

Following advice from the friendly and efficient clerk of the committee, I had moved my laptop away from the background distractions of grandchildren’s Batman costumes and toys. I woke up early on the morning of 17 June feeling nervous with anticipation. ‘Trust you know enough’ were the calm words of advice offered by one committee official.’ ‘Stick to the evidence; be focused and don your cloak of authority’ came texted advice from a senior academic colleague with a good luck message. I have a tendency to talk too much when I’m nervous, and knew I needed to avoid waffling, so this was a helpful reminder. But I wasn’t sure I had a suitable cloak of authority handy.

In the event, the preparation paid off. I stuck to my bullet points and weaved in quotes from participants when I could. It wasn’t perfect and there’s always more to say. I’m not sure it’s possible to do justice to the harrowing experiences which had been shared by research participants, but I tried. There is a big focus in academia on impact, and I sometimes feel limited recognition of the time and multi-layered approaches needed to achieve it. Immediately after the evidence session, which lasted an hour, I was contacted by a journalist from the Independent asking about a paper I had mentioned in my evidence. Within an hour the Sun online quoted our evidence in an article supporting their campaign to make Universal Credit work.

Evidence is clearly not the only, or the most important deciding factor in the messy world of policy making. I believe we need to use a combination of political levers of influence at our disposal to affect changes when opportunities present themselves. This felt like a huge moment. The priorities and timeframes of academia and policy making do not always align. The study I was reporting grew out of embedded research with community members in Gateshead who talked about their fears about Universal Credit being rolled out in 2017, fieldwork was undertaken April – October 2018, written up and paper submitted in November 2018 and published in 2019. Following the select committee, a colleague posted links to the evidence session on the Facebook pages of organisations who had supported the research for community members to see. It felt right to let participants know what had happened.

Since 2018, we have shared the research findings at numerous conferences and with Department for Work and Pensions staff, but with limited effect. COVID-19 has prompted temporary changes to be made to Universal Credit, which will help. My experience in the shielding hub demonstrates how many families claiming Universal Credit, particularly those with children, continue to struggle with the additional costs of lockdown. Last month, Therese Coffey announced the re-instatement of conditionality requirements and sanctions, which will add to Universal Credit claimants’ stress at a time of economic insecurity, rising unemployment, unprecedented job losses, and anxiety about the future. Even a global pandemic can’t halt political will it seems.

In my view, public health is political. Lobbying and advocacy are a core part of our role, particularly when government policy has such a crucial role to play in addressing inequalities. We need to continue to highlight the harmful impacts of policy on particular groups and be part of the process of informing solutions. Researchers need to seek out these opportunities for ‘academic activism’ (Askins 2009) to help shape policy. We need to provide training and support to academics at all levels, and accept the emotional investment these efforts require. After all, the drive to impact is fuelled by emotional as well as scientific engagement with our subject matter.

Reference:

• Askins K. (2009) ‘That’s just what I do’: Placing emotion in academic activism Emotion, Space and Society doi 10.1016/j.emospa.2009.03.005

Images:

1. Screenshot taken from parliamentlive.tv: https://parliamentlive.tv/event/index/5d5e46b8-c323-4a64-8bca-53e2ed17cb4f 16/07/2020
2. Screenshot taken from The Sun website: https://www.thesun.co.uk/news/11883566/universal-credit-wait-12-weeks-severe-hardship 16/07/2020

Not an equal opportunity disease: Covid-19 and health inequalities

Posted by Clare Bambra, Professor of Public Health, Newcastle University and Ryan Riordan, 5th Year Medical Student, University of Cambridge

Spanish Flu of 1918 was experienced unequally, with higher rates
  of infection and mortality among the most disadvantaged

As Covid-19 began to spread rapidly across the UK in early March, politicians and the media were keen to tell us that we were ‘all in it together’ and that the virus ‘does not discriminate’. As time passed, it became apparent that this wasn’t the case.

We now know that Covid-19 is far from a socially neutral disease, with clear clusters of more severe impact amongst our most deprived and marginalised communities.

We now know that people living in more socio-economically disadvantaged neighbourhoods and minority ethnic groups have suffered more with higher infections and death rates.

Historically, this has also been the case - evidence has shown that previous pandemics including the Spanish Flu of 1918 and the H1N1 pandemic of 2009 have also been experienced unequally, with higher rates of infection and mortality among the most disadvantaged parts of the country – both in the UK and internationally. 

Emerging evidence from a variety of countries suggests that these inequalities are being mirrored today in the Covid-19 pandemic. Both then and now, these inequalities have emerged through the syndemic nature of Covid-19, as it interacts with and exacerbates existing social inequalities in chronic disease and the social determinants of health.

The syndemic of COVID-19, non-communicable diseases (NCDs)
 and the social determinants of health

This is down to a number of factors – not least unequal exposures to the social determinants of health (the conditions in which we are born, grow, live, work and age) leading to higher rates of almost all of the known underlying clinical risk factors that increase the severity and mortality of Covid-19 (e.g. high blood pressure, diabetes, cardiovascular disease).

We may have been living under the same regulations, but across the country, our experiences of ‘lockdown’ were widely different. We knew this. We weren’t ‘all in the same boat’ - we were in the same ocean in the middle of the same storm - but some were on luxury liners and others on rapidly-deflating dinghies.

We saw lower-paid care workers, shop workers, transport workers, factory workers continuing to work face-to-face with the public, while others worked from home on full pay or were furloughed with some semblance of job security.

There were families trying to stay sane in small flats without outdoor space and with empty cupboards, whilst others in more fortunate circumstances trebled their flower delivery order to ensure their homes looked good during Zoom meetings.

 

The divide in our society is stark on many levels, and as we go forward, who will pay the price of the multi-billion pound interventions that the government has put in place to see us through this period, and bear the brunt of the post-Covid-19 global economic slump? 

Covid-19 has laid bare our longstanding social, economic and political inequalities. Even before the pandemic, life expectancy amongst the poorest groups was already declining in the UK and the USA and health inequalities in some European countries have been increasing over the last decade.

I know that this all makes for grim reading for researchers, practitioners and policymakers concerned with health inequalities. So what can we do?

It is vital that this time, the right public policy responses, such as expanding social protection and public services and pursuing green inclusive growth strategies, are undertaken so that the Covid-19 pandemic does not increase health inequalities for future generations. Public health must ‘win the peace’ as well as the ‘war’. It is our job to make that case.

As we start to shape our ‘new normal’ and as the government unveils its post-Covid-19 recovery plans for the UK, public health policy must be a priority.

We need to act now if we want to avoid deepening the health inequality divide even further for generations to come.

Read the full essay: The Covid-19 pandemic and health inequalities

With thanks to the NIHR Applied Research Collaboration North East & North Cumbria 

Image attribution:

1. Otis Historical Archives, National Museum of Health and Medicine / Public domain. https://commons.wikimedia.org/wiki/File:Emergency_hospital_during_Influenza_epidemic,_Camp_Funston,_Kansas_-_NCP_1603.jpg
2. The syndemic of COVID-19, non-communicable diseases (NCDs) and the social determinants of health (adapted from Singer and Dahlgren and Whitehead). With acknowledgement to Chris Orton from the Cartographic Unit, Department of Geography, Durham University, for his assistance with the graphics. https://jech.bmj.com/content/early/2020/06/13/jech-2020-214401.full?ijkey=haFkUOyJurtabHz&keytype=ref#F1
3. Screenshot taken from the Financial Times website: https://www.ft.com/content/8ea1c992-89f8-11ea-a109-483c62d17528 09/07/2020

Would easy-read documents for all mean a more inclusive healthcare system?

Posted by Kate Byrnes, Graduate Tutor & PhD Student, and Emma Giles, Reader in Public Health Behaviour Change, Teesside University

When you receive letters from the hospital or the doctors, what do they look like? Text heavy, with no pictures, and in a small font size? That is how the letter looked when I received my invitation to cervical screening.

Traditional appointment letter

Now imagine that instead of getting that letter, you received a letter which was written in a large font, used shorter sentences and included pictures. How would you react? Would you feel like the information was simple and clear to understand? Would you feel like you were being patronised and treated like a child? Or, would you even care?

Public Health England, have developed a cancer screening invitation letter in an ‘easy read’ format along with an easy read booklet. Both of which can be provided to support women with learning disabilities to access cervical screening. 

 

PHE cervical screening: easy read invitation letter template

Within an easy read document, the images are left-aligned on the page, with text for each image on the right side. This helps the reader gain an understanding of what the written text says.

However, women with a learning disability, do not receive these easy read versions as standard. Every women invited to screening is given a booklet along with the invite letter which goes some way to explain both what happens during the appointment and the content of the letter. However, would it not be better for everyone to receive an easy-read version in the first instance?

Someone may only receive additional information in an easy read format, if they are identified by their GP surgery as having a learning disability, or because they receive support from healthcare services for people with a learning disability.

What about women who have a mild learning disability and do not receive any support? Or people who struggle to understand written information? It is possible these groups of people will be less likely to attend cancer screening simply because they do not understand the invitation letter.

Four in 10 adults in the UK struggle to understand and use typical medical information designed for the public (NHS, 2020). This is called ‘health literacy’. Having low health literacy has been linked to a range of problems, including poor general health, inappropriate use of health services and reduced life expectancy (NHS, 2020). One mechanism to limit the effects of poor health literacy, is having information in plain English, with simple and short sentences, without jargon.

Therefore, if the NHS is to use standardised letters, should they all be in a simplified, easy read format? This could help services meet the requirements of the Equality Act (2010) which stated that services need to make “reasonable adjustments” to their provision including to the information they provide.

The need for reasonable adjustments within the cervical and breast cancer screening programmes has been highlighted in my PhD research. The research is exploring the attitudes and opinions of women with a learning disability, family carers, and paid care workers towards cervical and breast cancer screening. Within the interviews each participant completes a Q sort (a card sorting task) to identify whether participants agree, disagree, or are neutral towards 28 statements. Each statement is placed on an individual card. The card is then placed onto a grid, to reflect how much they agree or disagree with the statement. Upon completion, it represents a picture of a participant’s range of attitudes and opinions towards cervical and breast cancer screening. The below figure shows a completed Q sort by a women with a learning disability.

Q sort by a women with a learning disability

When designing my PhD research, woman with a learning disability where involved in Patient and Public Involvement (PPI). PPI is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE, 2020). The Health Research Authority (HRA) has acknowledged that public involvement can positively impact upon the design of research, especially in the design stage (Health Research Authority, 2017). By including Experts-by-Experience it is possible to find out what matters most to the public, especially when the research is controversial or on a sensitive topic. This is the primary reason that I wanted to use PPI during the research. Additionally, there has been very limited research conducted in England on this topic, and involving people with a learning disability in the design of the research.

The PPI in my research was split into three consecutive phases; identifying women’s preferences for how they would like written information to be presented to them; checking the easy-read documentation developed for the research, and obtaining the women’s preferences on the design of the Q grid. The importance of removing jargon and medical terms was highlighted in the results of the PPI, when the phrase ‘lady bits’ was used, women with a learning disability understood the location and some of the problems they might face going for screening, but didn’t always understand the word ‘cervix’. This is an important consideration for the invitation letters to cancer screening.

The invitation letters for cancer screening use terminology such as ‘cervical’, ‘cervix’ and ‘Human papillomavirus’ and assume that people will know what these words mean. What impact could using jargon and medical terminology have on the women receiving the letter? One problem is that women could misunderstand the procedure. Whereas, in an easy read document, the anatomically correct terms could be used, alongside an image, or further description. As the below image depicts:

PHE cervical screening: easy read invitation letter template

Ultimately, should there be standard information provided to all, which is written in a way that everyone can understand? Would more people be able to understand the information? Would this have an impact on uptake of services such as screening, and would this result in a more inclusive healthcare system?

Images:

1. Courtesy of the BBC: https://www.bbc.co.uk/news/uk-england-tyne-4794639

2/4. Courtesy of Public Health England: https://www.gov.uk/government/publications/cervical-screening-supporting-women-with-learning-disabilities