5: WHO you want to reach – patients, public, service users

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This chapter will look at ways of presenting your work to the general public, patients and service users. They may be people who have a condition you are studying, look after a family member or are just interested in how services are delivered or experienced in their community. The first step is about grounding your communication in the problems which matter to patients, service users and citizens. This is illustrated by three recent research studies which are focused on topics of importance, from using emergency services to the experience of living with obesity to parents understanding risks of their children undergoing cardiac surgery. Understanding the context, priorities and realities of patients and service users is critical, with useful insights from interview informants. Research examples in this chapter all involved people in meaningful ways throughout the study, the third step of good engagement. This includes individual contributors who may be part of your team, but researchers looking to extend the reach of their studies need to also think about the role of organisations and networks. These might be patient advocacy groups, peer communities, charities and others. Using vivid stories to bring the research to life is an important last step of good engagement. There is general guidance on making findings accessible for public readers, including examples of easy-read versions of research reports, with advice in later chapters on using the media and writing plain language summaries.

Summary

This chapter will look at ways of presenting your work to the general public, patients and service users. They may be people who have a condition you are studying, look after a family member or are just interested in how services are delivered or experienced in their community. The first step is about grounding your communication in the problems which matter to patients, service users and citizens. This is illustrated by three recent research studies which are focused on topics of importance, from using emergency services to the experience of living with obesity to parents understanding risks of their children undergoing cardiac surgery. Understanding the context, priorities and realities of patients and service users is critical, with useful insights from interview informants. Research examples in this chapter all involved people in meaningful ways throughout the study, the third step of good engagement. This includes individual contributors who may be part of your team, but researchers looking to extend the reach of their studies need to also think about the role of organisations and networks. These might be patient advocacy groups, peer communities, charities and others. Using vivid stories to bring the research to life is an important last step of good engagement. There is general guidance on making findings accessible for public readers, including examples of easy-read versions of research reports, with advice in later chapters on using the media and writing plain language summaries.

Step one: ask the right question

Every research study starts with a problem or area where not enough is known about best services or care. It is always powerful when researchers trace the origins of their project back to the people and families who have prompted this study. This might be a project on improving oral care in care homes using an example of a resident with dementia refusing toothbrushing and experiencing pain, tooth loss and trouble eating. Research evaluating new forms of antenatal visiting may have arisen from the preventable death of a woman who missed booking visits and experienced complications. Or a study on digital befriending services prompted by awareness of social isolation experienced by older neighbours during lockdown. These are all examples of real problems affecting people where research might make a difference.

I have selected here a few recent UK-based studies which all have a focus on patient or public concerns and issues (Boxes 5.1, 5.2, 5.3). Each of these studies has something interesting to say about how people experience health or care. They have involved patients, parents and public consistently and thoughtfully throughout their projects. And they have presented research findings in interesting ways which will be meaningful to general readers, as well as academic audiences. These are just a few studies which caught my attention.

Research example – use of emergency services

Why do people go to hospital emergency departments when they don’t have to?

One study by Joanne Turnbull and colleagues explored the different ways in which people understand and use emergency health services (Turnbull et al 2019). This was partly in response to concerns about rising emergency department attendances with research suggesting some problems, such as urinary tract infections, could be better managed elsewhere. This mixed-method study included a series of panels and interviews drawing on mixed sections of the population, including marginalised groups (such as Eastern Europeans) and heavy users of emergency services in terms of very young and very old adults. It also involved a group of citizens and service users in the design and delivery of the research. This included getting people to draw pictures of where they go for what reason. This showed important differences in assumptions of those using services to those planning and managing pathways of care.

Researchers also used free-text from the qualitative research to illustrate key points, from interpretations of ‘urgency’ to thresholds for accessing different services.

It might not be in their definition of a doctor’s emergency, whether they can do something about it or not, if they’re doing from a doctor point of view. But from our point of view, it’s a panic. When calling 999 for my mum … just being too floppy to get up … It’s not a sort of medical emergency, in their book, in their definition. But it is something that … needs to be dealt with … And it is something that is pretty concerning … It’s just that there’s a sort of boundary thing, the definition. When we were living it, it’s just being in a, sort of, very frightening situation. (Excerpt from qualitative text: with permission from Turnbull et al 2019: 51)

The researchers used this rich material to identify three kinds of ‘work’ which people seeking help do – illness (‘what are my symptoms?’), moral (‘can I justify calling an ambulance?’) and navigational (‘where can I go?’) work. This draws on theories of the ‘treatment burden’ that people with chronic illness bear in managing and making sense of their illness day to day and making use of services and clinical support on offer (May et al 2014). This study highlights how few people understand the notion of urgent care (as opposed to emergency care) and the complex web of individual and community beliefs driving behaviour.

Research example – how parents understand risk

Will my child do all right there?

Another study with some compelling patient-facing outputs was actually about how people understand and make sense of risk (Pagel et al 2017). This was part of a wider project on risks around children’s heart surgery, taking into account other underlying health problems of children needing such operations. This had been contentious, as earlier work on 30-day survival rates after children’s heart surgery led to temporary suspension of operations at one centre in 2013. This later study provided more complex models, adjusting risk for underlying health problems. As part of this research, an ambitious programme of work focused on the best way of presenting this new risk model to parents and the public. This was led by Christina Pagel (overall chief investigator) and David Spiegelhalter, a professor of public understanding of science, working with the organisation Sense about Science. Using eight face-to-face workshops over more than a year, they developed and tested different ways of presenting this complex and important information (see Figure 5.1). Four workshops were held with parents of children with congenital heart conditions who may need surgery or had had surgery. A further four workshops were held with press officers and staff from medical charities, hospitals and family liaison groups.

This programme of work included experiments to test knowledge about key concepts such as ‘probability’, ‘risk’ and ‘predicted outcome’ and many iterations of a website and animation. Parents and other workshop participants changed what was presented and how it was presented. This included the addition of important context, such as the need to emphasise that overall survival rates in the UK were high. Early versions had not been clear that hospitals should not be compared to each other on survival rates. And more work was needed on questions like what it means if hospital survival rates are below predicted ranges. Some important sensitivities surfaced. Original imagery to depict child deaths as black boxes were rejected by parents in place of a fade-out icon. Researchers and technical design staff worked with workshop participants to ‘storyboard’ content for an animation. This included simulation of 20 possible futures and answers to the questions parents asked, such as ‘Is hospital X safe?’ As the researchers state when reflecting on this sustained programme of work and interaction, ‘there is no substitute for genuine co-production’.

Thought was given to the promotion and use of the website and animation. The website was tested for mobile phone and tablet compatibility. Promotion ranged from television and radio interviews, news and features in relevant charity newsletters and blog by a parent on mumsnet. It was widely promoted on Twitter and picked up by opinion leaders from Phil Hammond to Simon Singh.

Figure 5.1:
Figure 5.1:

Testing displays of data for parents of children undergoing heart surgery

Research example – understanding obesity

How stigma about weight makes it harder for people to lose weight

Researchers Oli Williams and Ellen Annandale carried out some interesting research with people in a deprived neighbourhood who attended local weight-management groups (Williams and Annandale 2020). This explored the ways in which the stigma associated with body weight and size is experienced by individuals and how it may contribute to worse outcomes in health and wellbeing and more inequality. In a startling observation from their ethnographic studies of weight-management groups, the researchers coined the concept of the ‘weight of expectation’, people identified as obese or overweight actually feeling heavier at weekly weigh-ins when they judged themselves as falling short of ideal or socially acceptable levels of exercise or eating and drinking. These moral narratives of individual responsibility for healthy lifestyles were internalised and produced feelings of shame. The researchers described the paradox of body awareness. On the one hand, people of higher weights can be hyper-aware of their bodies – unlike those of lower weights who can ‘forget’ or be absent from their bodies, drawing helpfully on Leder’s parallel notion of health and disease making people less or more aware of their physical self (Leder 1990). But on the other hand, people of higher weights in their study were often dissociated from the reality of their bodies, judging incorrectly when they had gained or lost weight.

Later, Oli Williams collaborated with illustrator Jade Sarson to create a comic based on these research findings about how weight stigma is felt in the body (see Figure 5.2). This was accompanied by a touring exhibition of the artwork as part of a broader social art collective, Act With Love, that he set up with his brother to collaborate with others and communicate evidence relating to social justice issues in ways that are accessible and engaging for wide and diverse audiences (www.actwithlove.co.uk). Together with his engagement through podcasts, blogs, magazine articles, television and radio appearances and talks at science events for the public, this is a great example of a researcher reaching the public in imaginative ways.

Figure 5.2:
Figure 5.2:

Comic book bringing to life research on weight and stigma

Why should anyone be interested? This is the first order question when thinking about communicating your findings. You need to draw a thread back to the original problem and connect it to the research which followed, using stories of individuals or families to make the point. In most cases, your research will have been funded because of some uncertainty or need which should be addressed to improve services or care. Sometimes you will be able to trace back to organisations or individuals who articulated the knowledge gap and why it mattered to them. Emphasising the relevance and potential use of your research to lead to better experiences of care is important.

Step two: understand the context

Researchers who want their findings to be read by people who may be affected by the condition or care in question, or have a general interest, need to appreciate a perspective that might be different from the professional or academic. A good understanding comes from close involvement with the right organisations and people with lived experience, outlined in more detail in the next section of this chapter. It also helps to hear the advice and insights of experienced people who span the worlds of research and public experience, like Sally Crowe (Box 5.4).

Interview – Sally Crowe

Dialogue not broadcast

Sally Crowe has experience in developing research literacy and making evidence accessible to patients and the public. She had three main messages for researchers.

1. Speak with, not at people

‘There is a big push for researchers to get their findings out on social media. But there is a difference between “broadcast” mode and dialogue mode, although these are not mutually exclusive. What frustrates me is when a researcher comes with their findings to a community of interest, which is easy to find now with a social media hashtag. The researcher speaks, people are interested in the research, want to ask questions, find out more but the researcher doesn’t enter into dialogue. It is all about developing the relationship.

I’m part of two social media groups: one for cancer, which I have, and one for “Long COVID” as I have had continuing symptoms. You can spot successful interventions by researchers when it is a dialogue and two-way conversation – there may be a request in there, perhaps to recruit people to a study or test out findings. Patients and the public have a healthy radar for spotting people who act as if it is a one-way relationship, extracting things without giving back. Researchers can learn a lot from sharing findings with those who might be affected, who might have interesting reactions to the research. Be open to what may come out of that dialogue with a patient group or community – let yourself be changed by the conversation, whether it is a different take on your results or ideas for further research.

2. Put the people back in

It’s easy to forget the humanity in research – we may overly focus on methods, representativeness and reproducibility but it’s ultimately people who make up the research, it is people who do the research. People take part in research because of an emotional response, for example they or someone they know has the disease. Very rarely do people come in from a public perspective because they want to know more about randomised controlled trials, but that’s how the system sees it, thinking that’s what people need to know. We need to focus on the human interaction, building on why people get involved in the first place.

When I’m working with different sorts of people in research understanding, stories and metaphors have proved powerful. Stories are not just anecdotes – evidence-based healthcare has sometimes had a bit of a problem with stories – it’s an amplification of an experience which can embed and contextualise the research.

3. Don’t over-simplify

People living with long-term conditions or life-limiting illness already experience lives that are complex and uncertain. My experience is that they can often cope with findings that are uncertain, that’s part of life. People may not need over-simplistic tabloid ‘silver bullets’, I think what they want is honesty and transparency and a respectful way to deal with implications with their clinicians. Having said that, there may be issues of health and research literacy, particularly for people with cognitive limitations, or where English is not a first language for example. In this case, it is important to have clarity and simplicity, you need to land one key message.’

Sally has written a very good blog about how her recent experience of living with a rare and aggressive cancer has informed – and, at times, changed – her approach to engaging patients and public in research:

https://blogs.bmj.com/bmj/2019/02/22/sally-crowe-patient-and-public-involvement-a-smooth-sea-never-made-a-skilled-sailor/

Step three: involve the right people throughout your study

Engaging public and service users in research

Engaging patients, public or service users throughout the study has become increasingly important but is not always done well. Indeed, there is a growing body of research on public engagement and whether it has led to changes in what and how research is done (Boaz et al 2016).

In the three research examples at the start of this chapter, the methods and outputs mirror the subject of the study itself. All are participatory and reflect the values and preferences of the patients and public who might be interested in the research. Having genuine input from people you want to reach throughout your study is an important factor in maximising the chances of it being used. And genuine input from public contributors can bring fresh perspectives on assumptions underpinning research and what it means (Figure 5.3).

Figure 5.3:
Figure 5.3:

Service users making sense of research

Source: NIHR (2018) Help at home – use of assistive technology for older people.doi: 10.3310/themedreview-03385

Public and patient engagement has become a requirement for funders like NIHR in the research which they support. Levels of engagement vary, from a few representatives on a study group to public contributors as co-applicants leading parts of research. At its most developed, engagement becomes co-production where power is shared between the public, practitioners and researchers. This needs active commitment from researchers with ‘constant reflection on power differentials and managing these to build trust’ (Hickey et al 2018).

Indeed, there is a recent turn towards labelling everything as ‘co-production’ – so much so that a researcher recently coined a phrase new to me of ‘cobiquity’ (Williams et al 2020). There are real questions about what true co-production demands and how that sits with other aspects of academic practice (Oliver et al 2019). It is not easy to do this well, and recent helpful contributions have emphasised practical ‘design principles’ to thoughtful and effective engagement (Boaz et al 2018).

Engaging patients and the public in shaping the research agenda

An important development in involving patients and the public in identifying research needs is the JLA approach to priority-setting.1 They have just completed their 100th exercise in which public members and charities or patient groups come together with clinicians and researchers to identify pressing problems which need to be researched. There is then a structured process with careful facilitation to prioritise research topics, ensuring everyone’s voice is heard. There are various iterations to arrive at a top ten of the most important research questions to go forward to funders, although the translation of priorities to research is not a given (Staley et al 2020).

This deliberative process is well-documented, with a manual now in its eighth edition which has evolved since the first exercise in 2004 (Cowan and Oliver, 2021). The scope of the exercises has also broadened, from initial narrow treatment questions on effectiveness to broader uncertainties about experiences and services in areas like living with hearing loss and social work research. The genuine involvement of users has resulted in different research agendas than those set in traditional ways – for instance, the inclusion of breathing exercises in the top priorities for asthma research. This is an interesting model and it is noted that the strength of the partnership itself, bringing together stakeholders in a different way, is as important as the artefact of the priority list (Staley et al 2020) and could provide a powerful ‘pull’ for use of the completed research.

These exercises in involving and working with service users, patients and the public in identifying research needs, carrying out the work and sharing findings are welcome. But researchers need to be mindful of the complexities and the wider issues at stake. There is an established body of evidence, both theoretical and empirical, on the limitations of much public engagement, including failings in reflecting and reaching diverse communities (Ocloo and Matthews 2016). Peter Beresford has worked for many years in the fields of public engagement and advocacy, rooting his work in a deep understanding of wider contexts (Box 5.5). This includes both the political, institutional and structural forces at play and the broader movements of civil rights and identity which inform many of the challenges and blocks to meaningful engagement (Beresford 2016).

Interview – Peter Beresford

Positive circle of connection

I spoke to Peter Beresford about his life and work in public participation as a service user, campaigner, researcher and teacher, particularly in the fields of mental health and disability. His work has been characterised by a commitment to ‘bottom-up’ rather than ‘top-down’ forms of research and knowledge-sharing.

His early work with his partner, Suzy Croft, in the 1970s involved door-to-door participation with residents in south London to shape local planning and services. They found that most people felt disconnected from decisions in their neighbourhood. The results of their work were shared with local people in various ways, from shopfront displays and media coverage to household drops of accessible summaries. Involving people in research included a commitment to feed back the results and support further action.

Like others I have talked to, Peter talked about the need to humanise research. As he put it, ‘we should bring all of ourselves and see all of other people in the work we do’. Often, academic language is distanced and alienating and researchers are disciplined to speak in a detached ‘third person’ way, devoid of context. But as humans, we want to relate to each other and connect.

Peter underlined the need for responsibility in research, given the potential to do harm as in past examples of research and practice in areas like over-use of medication in mental health policy. Researchers can feel powerless, particularly early in their career, in relation to funders, publishers or managers. Peter emphasised how researchers should own their power to do harm as well as good, linking academic activity to broader causes of social justice, social change and progress, as the ‘emancipatory disability research’ movement has sought to.

There are no shortcuts to meaningful and inclusive participation. Peter emphasised the challenges for researchers in finding the right people and working with them in the right way. But there are organisations and networks which can support good and diverse involvement, including the ‘user led organisation’ he helped to found Shaping Our Lives as an independent national network of disabled people and service users (www.shapingourlives.org.uk). ). And the more effort in involving service users throughout any research project, the greater the chances that the research will be used and useful. Researchers should aim, in Peter’s words, to create ‘a positive circle of connection’ with the communities they want to reach.

Step four: partner with organisations, networks and champions

A starting point for good communication is to understand your audience, who they trust and where they go to for information. Patient bodies, charities, advocacy organisations, resident groups and third sector organisations are often important as a collective voice for particular communities. These may be formal organisations with staff and foundations or self-organising networks for people with particular conditions or needs. Working with them you are likely to have better reach and are more likely to get your items on their newsletters, websites and mailouts. They may also help you to identify individuals with influence on social media, who are a trusted voice for the communities you are trying to reach.

Chapter 8 will look in more detail at the role of the media in presenting, promoting and only sometimes distorting research findings. Using print and broadcast media, as well as social media channels, can be a good way of amplifying your research. For instance, researchers in Southampton working on respiratory diseases were able to engage a broadsheet journalist in a sustained and evidence-informed campaign on air quality and health (see Box 8.2).

But often ‘narrowcast’ can be more effective than ‘broadcast’. This means working with partner organisations to use their networks and established communities to engage in dialogue about research. At our evidence centre, we collected together research on pressing problems and in each case worked closely with patient or public members. This included disability and age-related charities and voluntary community groups on our report on assistive technology for older people. For our review of research on the organisation of stroke services, we worked with the Stroke Association. Through their networks, we engaged stroke survivors and carers in the shaping of the report and in the promotion of it through face-to-face events and activities of their regional and local branches. Input from stroke survivors and family carers on our steering group helped to give greater emphasis to the research on early supported discharge and rehabilitation programmes and the reality – and struggles – of life after hospital. Earlier drafts of our report had given more prominence to the acute phases of stroke management and care. People with lived experience also foregrounded research on particular rehabilitation activities – such as evidence on walking programmes – as positive contributions to the research story. They contributed patient vignettes to bring to life some of the research themes (Figure 5.4).

Figure 5.4:
Figure 5.4:

Patient experiences vignettes to illustrate research

Source: NIHR (2017) Roads to recovery: organisation and quality of stroke services.doi: 10.3310/themedreview-001685

National organisations like Age UK or Mencap have skilled and effective communication teams, who are good at conveying complex research simply. They are also on the lookout for relevant research which will make good stories for their newsletters, campaigns and fundraising activities. Organisations and individuals can also advise on appropriate use of language, such as ‘a person with diabetes’ rather than ‘a diabetic’. Working with advocacy groups, we changed our language in our learning disability services report from ‘people with challenging behaviour’ to ‘behaviour which challenges’. These subtle differences are important.

Step five: present content which is engaging and accessible

Plain language summaries

A good test for any research is that you could explain your findings to another parent at the school gates or a fellow passenger on a bus. Many research funders now require plain language summaries of 300–500 words. We will consider in more detail in Chapter 9 how this is done and why it needs real investment of time and effort to get right. It is difficult to write clearly and simply about complex findings and stay true to the science. This includes giving some sense of the weight of evidence or level of certainty from your study in relation to the wider evidence. You also need to involve your target readers in the writing and editing of the summary.

There has been some knowledge translation type work to test, develop and refine these summaries working with panels of patients and general public (for instance, Synnot et al 2018). There is also a body of literature on parallel attempts to translate clinical guidelines for general and public use. One interesting example used content analysis for detailed review of patient versions of clinical practice guidelines and contrasted this with what the literature said patients and public wanted (Santesso et al 2016). They found that most guidelines for patients focused on disease, tests and treatment but had little information on issues of interest to patients such as benefits and harms, how to navigate the system or self-care advice. Few paid attention to beliefs, values and preferences. And not many patient versions used stories or scenarios to personalise the information for the reader. None of this is surprising. It is very difficult to make information simple, accurate and relevant to different contexts and readers. But it underlines the importance of public-facing summaries and setting aside time and resources to work with others to get it right.

Easy-read versions

In our review of research on learning disability services, we commissioned an advocacy group for people with learning disability (My Life My Choice) to work with us on an easy-read version of the report (Figure 5.5). Easy-read information is designed to be understood by people with learning disabilities, memory or language problems. Since 2016, those providing NHS and adult care services have to provide essential information in accessible formats for all users. Easy-read versions usually have much less text, use simple words and have photographs or images accompanying text. We had been engaging with the advocacy group from the start of the project and they produced the first draft of an easy-read version, using skilled facilitation to create and review text with people with learning disabilities. Our editorial team then went through several versions of the text to make sure the main messages stayed reasonably true to the science while being as clear as possible. This was quite difficult where there were mixed findings or a variety of study designs with varying levels of certainty and quality. For instance, our review featured four large evaluations of a complex person-centred approach for managing behaviour which challenged in residential settings. The findings were mixed and it was very difficult to find a way of conveying this which was clear but accurate. This was the first time I had engaged with easy-read format and I found it challenging to extract simple messages, but keep the nuance of the findings. Interestingly, although we had designed the easy-read report for people with learning disabilities and carers, many staff in NHS and residential care settings said it was their go-to version of the report. It is a good discipline for us all – can you make an easy-read version of your main report?

Figure 5.5:
Figure 5.5:

Easy-read version of research on learning disability services

Source: NIHR (2020) Better Health and Care for All – Easy Read. doi: 10.3310/themedreview-04328

Choosing the right images

In our work packaging up evidence, we also learned the importance of images. Again, patient and user groups can be a great source of appropriate images, as many have picture libraries and resources. We were advised for instance not to use stock images to illustrate our review of evidence on services for people with serious mental illness. Too often these featured brooding or despairing shots of people with their head in their hands. Similarly, it was hard to find pictures of overweight people happily engaged in physical activity. The typically negative or bland visuals around older people sparked a viral campaign under the hashtag #nomorewrinklyhands. It is also important to reflect the diversity of populations and people who might be affected by your research.

Practical pointers on reaching patients, public and service users

Involve the right people throughout the study

When people are engaged in meaningful ways from early stages, it makes your job easier in promoting findings at the end. For instance, if some public members on your study team have written patient information leaflets or been involved in recruiting service users to take part in the research, they will have had to explain very simply and compellingly what your study is about and why it matters. Those involved in the study can act as ambassadors and help you understand which aspects are most interesting to people and why.

This step also involves thinking about which communities and individuals might be missing. What efforts do you need to take to capture different voices in your study, beyond the usual suspects? Have you tested out emerging findings with groups of patients or service users or advocacy groups working with you during the project? When sharing your findings, who do you want to reach and where do they go? Are there particular channels or media favoured by different groups or communities?

Write a summary for the general public

Researchers often spend far too little time on plain language summaries and public-facing versions of their work. This takes time to do well and should be done with the people who are the intended audience. Expect many iterations, testing it out with different people. It is a good test to read this out loud to check that it is as clear and simple as it can be (but no simpler). Use an online language test to review your summary against a standard. You should aim for it to be understood by an average 13-year-old. Take it one step further and try to make it accessible for those with memory problems or learning disabilities or whose first language is not English. Creating a proper easy-read version of your work is a particular skill and may need specialist input, but it is a good test to try to explain your work to those who may find it a bit harder. There are guides to help with this, but the main take-home message is that public-facing summaries are important, but take time, skill and close working with others to do well.

Consider new ways of communicating to general audiences

Not everyone can produce a graphic novel or film based on their research findings. But it is worth taking time to consider how you could visualise the key ‘storyline’ of your work. This might take the form of infographics, service user vignettes or cartoons. A good way to communicate your findings is to have a conversation with a community group leader or patient advocate, perhaps through a podcast or video chat. You could also approach festivals and science fairs – which have included end of life researchers and clinicians sparking big conversations on where and how people die and how to make it better. There are people who can help you to do this well. This includes communications teams of target charities who can work with you to hone your messages in a short article which could reach patient and public audiences.

Footnotes

Source: Reproduced with permission. Artworks by Jade Sarson in collaboration with AWL.

  • Figure 5.1:

    Testing displays of data for parents of children undergoing heart surgery

  • Figure 5.2:

    Comic book bringing to life research on weight and stigma

  • Figure 5.3:

    Service users making sense of research

  • Figure 5.4:

    Patient experiences vignettes to illustrate research

  • Figure 5.5:

    Easy-read version of research on learning disability services

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