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REGISTERING OUR INTEREST Understanding teenage & young adult cancer data


INTRODUCTION At Teenage Cancer Trust we use data to help us understand the needs and experiences of young people with cancer and their families.

We make sure young people don’t face cancer alone. We do it by helping the seven young people who are diagnosed with cancer every day1 and their families deal with the many ways that it can impact on your body, your mind and your life. We do it in partnership with the NHS and by bringing young people together so they can support each other. And we do it from the moment cancer is diagnosed until long after treatment is over.

Good clinical data are key to what we do - helping us to explain why the experience of cancer is different for young people compared to adults and children and helping us to promote earlier intervention, innovative treatment or to create a more age-appropriate, and improved, experience. And, by hearing about the experiences of cancer patients we can ensure that our services are better suited to meet the needs of patients.

Our 28 purpose-built NHS wards (usually called units) across the UK are at the core of our work. They’re designed to feel more like a home than a hospital ward. They’re comfortable and contemporary, rather than simply clinical. And they bring young people together, because talking to someone who knows what you’re going through is a vital way of feeling less alone and more normal.

The purpose of this report is to discuss the availability of national data about teenagers and young adults with cancer in the UK, as well as the challenges of data sharing and collection. It’s about what we can know, what we can’t and the opportunities which data present. In this report, we also share what young people with cancer have told us about their views on their own health data and discuss the impact this could have.

By educating young people about the signs and symptoms of cancer and working with health professionals to improve their knowledge, we strive to significantly improve their diagnosis experience. And through our own research and working with our partners in the NHS, UK governments, and other organisations both nationally and internationally, we aspire to improve outcomes for all young people with cancer.

North West Cancer Intelligence Service, Average number of cancers diagnosed in UK among teenagers and young people (aged 13-24) by type for 2008-2010, 2013 1

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CANCER DATA IN THE UK Cancer registration has been part of the UK health system for over 50 years; currently cancer patients’ information is automatically included within the database, though they are able to opt out should they wish to do so.

In England, the data are held by the National Cancer Registration and Analysis Service (NCRAS), but each of the four nations has its own cancer registry. The Northern Ireland Cancer Registry (NICR), for example, is run as a partnership between the Public Health Agency and the Centre for Public Health at Queen's University of Belfast. The Welsh Cancer Intelligence and Surveillance Unit holds records from 1972 onwards and uses them to report on data about cancer patients across Wales. In Scotland, as well as the general Scottish Cancer Registry, there is a specific database for people with cancer aged 0-24, called the Scottish Cancer Registry for Children and Young People; the fact that this registry is so age-specific means that it can focus entirely on improving services, treatments and experiences for children and young people with cancer. The registries work collaboratively and individually to tell us about who gets cancer, how they’re diagnosed, what their treatment is and what their outcomes are, as well as demonstrating the effects of new processes or interventions within the cancer pathway. Without the registries, we would know far less than we currently do about cancer in the UK. Although the systems of the registries are different, the protections around the information are the same: the databases are subject to a series of strict controls and protocols around the collection, storage and release of data in order to protect patients and their information. Internationally, the picture is very similar; from the National Program of Cancer Registries (NPCR) in America to the Australian Cancer Database (ACD), countries all over the world collect information about cancer patients. Because of this, we can share best practice with our global counterparts in teenage and young adult cancer. However, it’s not always easy to compare international cancer journeys or data collection processes with those in the UK.

All of the data collected across the UK are used by the NHS and by other organisations; for example, charities can work with the registries to build an accurate picture of the patients they help or use data to support the research which they fund. The charity sector is very supportive of the registries because without these sources it can be hard for charities to understand the impact that they’re making. Cancer Research UK has championed the system by working with Public Health England to develop an information leaflet to explain how they work2. In September 2015, it was announced that Dame Fiona Caldicott, the National Data Guardian, would carry out a review into NHS data use. The review set out two distinct sets of recommendations, one on the new security standards to be followed by all organisations which use health and social care data, and another on a new model for how people can make choices about how their data are used. This model is simple, with people being given just one or two options for how their personal health data are utilised. Caldicott’s review provides an opportunity to build a system of data collection in the NHS which will help us to create better services for our patients. However, any new data collection processes need to acknowledge the role of the cancer registries; making decisions without full consideration could lead to a reduction of quality in cancer data. This could make it harder for cancer services across all ages and patient groups to understand the needs of their patients and achieve best practice. If this happens, it will be more important than ever that the public is informed about the uses and benefits of data collection. We need to work together to educate people about how and why data needs to be collected and to tell them about the choices they can make about data sharing.

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Cancer Research UK, Cancer Registration Leaflet, 2014

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WHAT WE KNOW ABOUT YOUNG PEOPLE WITH CANCER During the year we engage with young people through our services, at events and online, to make sure that we know as much as possible about their cancer journeys in order to help us understand where our efforts should be focused. In addition, we work with other organisations and charities to inform our work and engage with young people to find out what they think needs to change.

INCIDENCE

16,600 15-24 year olds in the UK are living up to 20 years after their initial diagnosis with cancer4

In the UK, seven young people aged 13-24 are diagnosed with cancer every day3

For 13–24 year olds, the three most common cancer types are3:

Leukaemia (9%) Lymphoma (20%) 2,582 teenagers and young adults are diagnosed each year: this breaks down in to 2,130 in England, 121 in Wales, 97 in Northern Ireland and 234 in Scotland3.

Malignant melanoma (9%)

For young men, the most common cancers are germ cell tumours (e.g. testicular cancer), which make up 27% of diagnoses, whilst for young women the most common cancers are carcinomas (e.g. thyroid, cervix, bowel and ovary), which account for 31%5.

North West Cancer Intelligence Service, 2013 4 Macmillan Cancer Support, 2014 5 Cancer Research UK, 2013 Cancer Research UK, 2016 8 National Cancer Patient Experience Survey, 2014 9 Fern et al, 2014

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Teenage Cancer Trust, 2013

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DIAGNOSIS

37% of young people are diagnosed via A&E, with 26% of these having previously presented at their GP with at least one of the most common cancer symptoms6

Around half of all teenagers with cancer will go to the GP three times or more before receiving a diagnosis6

SURVIVAL

Over 80% of young adults aged 13-24 with cancer now survive for over five years in the UK4

MORTALITY

The survival rates for teenagers and young adults vary widely across different cancer types, ranging from 99% for thyroid carcinomas to 56% for bone tumours7

CLINICAL TRIALS

Aged 15-19 Around 280 teenagers and young adults with cancer aged 15 to 24 die each year in the UK7

Aged 20-24

Around 30% of young people aged 15-19 and 14% of young people aged 20-24 enter clinical trials compared with 50-70% of children5 & 9

PATIENT EXPERIENCE 71%

85% 51% of 16 – 25 year olds felt that they understood the explanation of what was wrong with them, compared to an average of 73%8

71% of 16 – 25 year olds had confidence in their doctors, compared to 85% on average8

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WHAT ARE THE DATA CHALLENGES? There’s a lot of public data on cancer, but there are also many challenges in collection and analysis, some which are particular to teenage and young adult cancer, and some which are common across other small disease population groups. Often, we have to work hard to see the full picture.

RARE AND LESS COMMON CANCERS Cancer in teenagers and young adults is rare so we often have to rely on data which are only partly relevant to young people with cancer. For example, the Care Quality Commission’s children and young people’s Patient Experience Survey tells us a lot about how young people feel about their doctors and hospital environments, but it’s for all young patients, not just those being treated for cancer. We can assume that some of the responses given by young people may be relevant for cancer patients, but we can’t be certain. For common cancers, there are more resources available to keep information as up to date as possible. In contrast, the data on teenagers and young adults, like those of other small population groups, can go unchanged for years because charities don’t have the funds for comprehensive research and national organisations aren’t able to dedicate consistent resources. For example, we rely on data about incidence rates for teenage and young adult cancer which were published in 2013 and are based on statistics from 2008 to 201010. Until more recent information is published, we have to plan for the needs of young people tomorrow using data from several years ago.

DEFINING THE AGE RANGE Organisations define teenagers and young adults in different ways when they collect data. For example, many studies set out the teenage and young adult age group as those aged from 16–24. On the opposite end of the scale, some groups only collect data on young people who are below 18, placing anybody older in an adult category. This variation in definition means that many reports can’t tell us everything we want to know; it’s very hard to find data which apply

North West Cancer Intelligence Service, Average number of cancers diagnosed in UK among teenagers and young people (aged 13-24) by type for 2008-2010, 2013 10

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exactly to the age group that we support and often difficult to compare one study with another. At Teenage Cancer Trust we support young people aged 13–24, because we believe that their physiological and psychological needs are distinct from those of children or older adults. Data sets which don’t completely cover the teenage and young adult age range can still be very illuminating, but it would be even more useful to have a better understanding about what all young people with cancer are going through.

LOW RESPONSE RATES It can be difficult to get a high response rate amongst young people; surveys are not often designed with them in mind, which means they can contain content which doesn’t seem relevant or which is presented in a format which is less appealing for young people to engage with. In addition, there’s the problem of population group size. Teenage and young adult cancer accounts for only 1% of all cancer diagnoses in the UK11 and when broad research like the Cancer Patient Experience Survey is carried out, it relies on a sample of patients across the country. Therefore, even if 100% of the young people asked to take part did respond, they would still make up a tiny number of the final total. But we know that young people tend to be less likely to respond than older patients. For example, in the 2014 Cancer Patient Experience Survey, 903 people aged 16–25 were asked to respond, compared to 118,081 respondents overall12, making up 0.8% of the total sample group. However, only 278 young people filled out the survey, giving a response rate of 32.8% for 16-25 year olds compared to rates of up to 70% in older patients.

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Cancer Research UK, Teenagers’ and Young Adults’ Cancer, 2013 Quality Health, National Cancer Patient Experience Survey, 2014


Small sets of data like this can provide informative insights into the experiences of a young cancer patient, but it’s not possible to draw broad, effective conclusions with so few participants. In order to understand what young people with cancer experience, more work needs to be done on how best to engage with them. As a charity, we’re well placed to find out how young people feel about their cancer, as we deliver services every day to young people before, during and after treatment across the UK. We know young people want to share their stories and we believe that charities like us can help them to do this.

EMOTIONS AND DATA When a person feels that health services have supported them really well or let them down at such a difficult and emotional point in their lives, they may feel more compelled to report their experiences than if they have had a more generalised experience. The phenomenon of people who have had an unexpectedly positive or poor experience being more likely to share their story is called non-response bias and affects a lot of studies, especially those which rely on self-completion like many patient experience surveys. This means that, whilst we might learn about the extremes of a journey though the cancer pathway, we could be missing out on the full spectrum of experiences. Just as some data sets may be filled with people who were particularly happy or unhappy with their support, others may be dominated by groups which aren’t representative of all young people with cancer. For example, the data we collect at our annual Find Your Sense of Tumour conferences can tell us a great deal about what young people think about their cancer journeys. However, those attending Find Your Sense of Tumour are already

receiving our support and many of them will have been treated on our units, so information gathered here can be affected by under-coverage bias. This means that, although that we might learn a lot about those accessing our services, we still don’t understand how a young person who hasn’t had contact with Teenage Cancer Trust might feel.

PUBLIC PERCEPTION People who have been treated for a serious disease such as cancer can be eager to allow their data to be used. Many of them want to feel that the next patient will not be subject to the same frustrations and pain which they have felt throughout their diagnosis and treatment. This attitude means that there is often little resistance to data collection in cancer patients. However, it’s not just cancer patients who need to be informed about sharing their data. The proposed changes to the opt-out system in England might mean that people choose not to share their NHS data when they are healthy, but change their minds if they are diagnosed with cancer. Public awareness about how useful data can be, whether you’re a cancer patient or not, is needed now more than ever. The cancer pathway does not exist in a vacuum; it is impacted upon by the services which surround and interact with it, whilst the experiences of those outside can still inform us about what improvements need to be made. People can be unsure about the details of data use in the NHS and this lack of knowledge can create a culture of distrust. Informing people about what the NHS wants to do with their data and how those uses could benefit everybody, means that negativity around personal data collection could end.

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WHAT DO YOUNG PEOPLE WITH CANCER THINK? The data in the cancer registries tell us a lot about what it’s like for young people with cancer across the UK, but opting into data collection is a choice.

As the conversation grows around what cancer data the NHS should collect and how they should do it, we think it’s important that the views of young cancer patients are represented. To help their voices be heard, we carried out two surveys on how much teenagers and young adults with cancer know and how they feel about their data being collected through the cancer registries.

METHODOLOGY AND RESPONDENTS Find Your Sense of Tumour survey for young people aged 13 to 17 At our annual Find Your Sense of Tumour conferences, we carry out a brief survey on the experiences of the young people attending. At our 2016 under 18s conference, we added three questions on data collection and the cancer registry to this general survey. The questions were multiple choice and the percentages are based on the number answering the question, not the whole sample size. 34 young people responded, aged 13-17. Around half identified as female and half identified as male and about 20% were currently in treatment for cancer, whilst the rest had finished treatment.

The respondents were self-selecting and they had all had previous contact with Teenage Cancer Trust. The sample size was limited.

Online survey for young people aged 18 and over We designed a short online survey which we sent out to 288 young people who have or have had cancer. The survey used free text and multiple choice questions and was based on a broader piece of research developed by Macmillan Cancer Support and Cancer Research UK on cancer patients' attitudes to data. All the percentages are based on the number answering the question, not the whole sample size. A total of 22 young people responded; they were aged from 18-25 and around three quarters of the respondents identified as female and about a quarter identified as male. Most had been treated for cancer in the past but around 17% were currently in treatment. Our respondents were self-selecting and they had all had previous contact with Teenage Cancer Trust. The sample size was also limited.

A recent survey by the Association for Young People’s Health found that young people were overwhelmingly in favour of being able to digitally access their medical data; 87% of the respondents were positive about the idea13. However, the survey also demonstrated that young people were uncertain about what data were presently shared. The Association for Young People’s Health’s work wasn’t on the cancer registries but it shows that there could be support for data collection and use in young people who haven’t been cancer patients.

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Association of Young People’s Health, NHS Digital Strategy Consultation, 2016


WHAT WE FOUND Only around HALF of those aged under 18 had heard that the NHS collects data on cancer patients14

Young people thought collecting data on cancer could help with: •

Improving medical care 24% of the under 18s, 29% of the 18+s

New treatments - 18% of the under 18s, 18% of the 18+s

Planning or improving NHS services – 17% of the under 18s, 20% of the 18+s

A better understanding of the causes of cancer – 20% of the under 18s, 20% of the 18+s14 15

87% of young people aged 18 and over said that they hadn’t heard or didn’t think they’d heard of cancer registries15

NONE of those aged 18 and over thought that the NHS probably or definitely did not have a central record of people with cancer15, compared to 27% of the adults who responded to the Macmillan Cancer Support/Cancer Research UK survey16

NONE of the under 18s thought that the data collection was a bad idea; 64% thought it was a good idea and 36% were unsure14

78% of young people aged 18 and over said they absolutely wouldn’t or wouldn’t really have any concerns about the NHS collecting data about their cancer15

These surveys tells us two key things about young cancer patients and their cancer data: they recognise the value of the cancer registry, but they don’t feel they have enough information about it. We also know that young people want to help others because of their own experiences. At our past Find Your Sense of Tumour conferences, we’ve asked attendees how they feel about the use of their physical samples. 80% said that they would want samples collected for research to be used in any study in which they might be useful and almost 60%17 said that they would want samples left over from their

procedures to be automatically used for research. When it comes to using their own experiences and data to help others, many young people don’t appear to hesitate. Our research shows that young people see the opportunities in collecting data. The openness to and enthusiasm for data collection which we found in our survey should be supported and encouraged – these patients can set the tone for the next generation of NHS users. It’s up to the NHS, the government and the third sector to engage young people to make sure that they’re able to make an informed choice, not just an instinctive one.

Teenage Cancer Trust, Find Your Sense of Tumour conference survey, 2016 Teenage Cancer Trust, Your Data and the NHS, 2016 16 Cancer Research UK and Macmillan Cancer Support, Review of Informed Choice for Cancer Registration, 2016 17 Teenage Cancer Trust, Find Your Sense of Tumour conference survey, 2014 14 15

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WHAT’S THE FUTURE OF DATA? As this report demonstrates, there are both challenges and opportunities in gathering and analysing cancer data. Although there can be problems with collection and analysis, our surveys suggest that young people are supportive of using data to improve services.

The changes which our health system will be making to the way it thinks about data collection are potentially very helpful. They will ensure that patients and their information are safer and will create an opportunity for us all to re-think how we feel about our data being used, and how this could improve the lives of others. Teenage Cancer Trust is committed to collaborating with other charities and organisations like Public Health England and NCRAS as well as with the devolved nations in order to achieve change; together, we can make sure that the public fully understand the choices they have when it comes to their data.

Invest in an analyst post at NCRAS to work on data about teenagers and young adults with cancer, looking at what is and is not available to build a better picture of their experiences, needs and outcomes

Inform young people with cancer about the cancer registry through our website and our young person’s guide that goes to every newly diagnosed teenager and young adult

Continue to fund specialist staff, including Clinical Nurse Specialists and Youth Support Coordinators who are trained to speak to young people about sensitive issues such as data sharing, tissue sampling and other associated topics

Fund Multi-Disciplinary Team coordinators in all regions across the UK by 2020, to work closely with NHS staff to identify all young people with cancer in their area, making sure they are able to choose the best options for their treatment, care and support

WHAT WILL WE DO? Teenage Cancer Trust wants every young person to have an informed choice when it comes to data, and we’ll continue to make the case for them to be included in national surveys and conversations. We will: •

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Continue to work with partners including the NHS, other charities and the cancer registries to ensure that young people are involved in wider discussions about how cancer data are collected and used, including seeking to capture the patient experience of patients under 16


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Teenage Cancer Trust relies on the generosity of the public.


Registering our interest