Perceptions of the cancer registry - Cancer Research UK

September 2016

Perceptions of the cancer registry Attitudes towards and awareness of cancer data collection Report for Macmillan Cancer Support and Cancer Research UK, prepared by Ipsos MORI

16-036870-01 | Version 1 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016 Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI 16-036870-01 | Version 1 | Terms PUBLICand | This work waswhich carried out accordance with the requirements of the international quality standard for Market Research, ISO2016 20252:2012, and with the Ipsos Conditions can beinfound at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

Contents Executive summary ......................................................................................................................... 5 Perceptions of the cancer registry survey................................................................................................................. 5 Background and objectives ......................................................................................................................................... 5 Awareness of the cancer registry ............................................................................................................................... 5 Informing people about the registry ......................................................................................................................... 6 Support for cancer registration .................................................................................................................................. 6 Informing patients under specific circumstances .................................................................................................... 7 Support for different types of health data use ........................................................................................................ 7 Implications of the research for cancer registration ............................................................................................... 8

1 Introduction .............................................................................................................................. 10 1.1

Background .......................................................................................................................................................10

1.2

Aims and objectives .........................................................................................................................................10

1.3

Methodology ....................................................................................................................................................11

1.4

Notes on interpretation of the data .............................................................................................................11

1.5

Structure ............................................................................................................................................................11

1.6

Acknowledgements .........................................................................................................................................12

2 Awareness of the cancer registry ........................................................................................... 13 2.1

Knowledge about the cancer registry ...........................................................................................................13

2.2

Understanding the opt-out system ...............................................................................................................14

2.3

Importance of cancer patients being informed about the registry .........................................................16

2.4

Importance of awareness................................................................................................................................17

3 Informing people about the registry ..................................................................................... 19 3.1

Priority of information about data collection .............................................................................................19

3.2

Appropriate times for informing patients about the registry ..................................................................21

3.3

How should people be told about the registry? .........................................................................................22

3.4

Importance of different pieces of information about the registry ..........................................................25

4 Support for cancer registry ..................................................................................................... 27 4.1

Attitudes towards the current data collection method .............................................................................27

4.2

Support for the principle of cancer data collection ...................................................................................30

5 Informing under specific circumstances ................................................................................ 33 5.1

Informing end-of-life patients .......................................................................................................................33

5.2

Diagnosis after death and the cancer registry ............................................................................................36

6 Support for different types of health data sharing .............................................................. 37 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

6.1

Uses of cancer data ..........................................................................................................................................37

6.2

Uses of health data ..........................................................................................................................................38

6.3

Comparison between health and cancer data .............................................................................................40

7 Appendices ................................................................................................................................ 43 7.1

Appendix 1 – Topline ......................................................................................................................................43

7.2

Appendix 2 – Statistical reliability .................................................................................................................53

7.3

Appendix 3 – Cancer audience sample profile ............................................................................................54

7.4

Appendix 4 – General public sample profile................................................................................................55

16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

Ipsos MORI | Perceptions of the cancer registry

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Executive summary Perceptions of the cancer registry survey Background and objectives The National Cancer Registration Service collects data on patients diagnosed with cancer in England. Cancer registration enables large amounts of good quality cancer data to be collected to inform the way that services are planned and enable further research into the causes of cancer and treatment. Currently, this data is collected automatically, and patients are given the opportunity to opt-out if they choose. However, with previous research demonstrating the priority that the public put on keeping their medical information private 1, and recent concerns about how health data is used and shared, it is important to consult the public and patients over how their health data is collected. Cancer Research UK and Macmillan Cancer Support commissioned Ipsos MORI to find out what people living with cancer (PLWC) and the general public think about the current process of cancer data collection. This report describes findings from online research undertaken in June 2016 into this, looking at two different audiences: people who have or have had cancer, and the general public. Between the 13th June 2016 – 4th July 2016, Ipsos MORI conducted an online survey of 1,033 adults in England aged 18+ who have or have had cancer, and of 1,000 adults in England aged 18+ drawn from the general public. Quotas were set on both audiences and corrective weighting used to reflect the known population of England and of people who have or have had cancer in England. A profile of each audience is given in the appendices.

Awareness of the cancer registry Awareness of the registry is very low among both the general public and people living with cancer (PLWC), though it is slightly higher among the latter group. Just 6% of people living with cancer and 3% of the public know a great deal or a fair amount about the cancer registry. Three quarters of people living with cancer have never heard of the registry (74%), while four-fifths of the public have never heard of the registry (80%). Low awareness of the registry is corroborated by low knowledge of the ability to withdraw data from the registry. Just two-fifths of people living with cancer (38%) and less than half of the general public (46%) correctly believe that information can be withdrawn from the registry. Half of PLWC (51%) and two-fifths (43%) of the general public say they ‘don’t know’ whether data can be removed from the registry. Both audiences place a high importance on people living with cancer being informed about the registry, with four-fifths of PLWC (83%) and a similar proportion of the general public (86%) saying it is important for people living with cancer to be informed. People living with cancer, however, are a little more likely to say being informed is not important (14%, compared with 8% of the public).

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JRRT/Ipsos MORI (2014), ‘Privacy and Personal Data’, https://www.ipsos-mori.com/Assets/Docs/Polls/jrrt-privacy-topline-2014.pdf (accessed 06/08/16) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016


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Despite low levels of awareness, three quarters of each group feel that people generally should know about the cancer registry (73% of PLWC and 74% of the general public). Around one in five from each group believe that it is not important that the public know about the registry (22% of PLWC; 19% of the general public).

Informing people about the registry People living with cancer display a pragmatism about the kinds of information they want about their cancer, placing more emphasis on hearing about opportunities for research (mean score: 3.07 2) and how their data is collected (3.05). The general public, on the other hand, feel the priority should be about the treatments (3.05) and prognosis (3.06). The point of diagnosis is considered the most appropriate time to be informed about the registry (43% of PLWC; 41% of the general public). PLWC, though, are also more practical about when they should hear about the registry, with more of them preferring to hear about the registry after diagnosis (37%, compared with 29% of the general public). Active communication, such as conversations and correspondence, are the preferred channels for being informed about the registry. While the general public think that meetings with healthcare professionals are the most appropriate ways of hearing about the registry (mean score: 3.25), PLWC’s preferred method of communication is a letter or leaflet from a healthcare professional (3.08), possibly showing that people living with cancer have more of an understanding of what is realistic from healthcare professionals or a greater preference to discuss other matters with their HCP. Of those who want to hear from a healthcare professional in a meeting, most think this should be from a consultant (62% for PLWC; 54% for the general public). The general public show more of a preference to hear from the GP (19%) than people living with cancer do (9%). All the different kinds of information that can be communicated about the registry are seen as important by both groups. For people living with cancer, who can access the data (77% say ‘very important’) and what the safeguards are (76%) are seen as the most important pieces of information. There is less of a priority placed on evaluative information about the benefits (59%) and drawbacks (52%) of being part of the cancer registry. The general public generally agree with this priority order.

Support for cancer registration A majority support the automatic method of data collection that the registry uses, whereby data about every incidence of cancer is automatically added to the registry and people can choose to remove information about themselves after the event. Two-thirds (65%) of people living with cancer support the current method of collection, while support from the general public is lower (52%). Active opposition to the registry’s data collection, though, is not common (9% of PLWC; 12% of the general public). There are key groups for whom support for the current method of data collection is higher, including: ▪

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members of the public who know someone who has or has had cancer (56%);

Where mean scores are referred to, these reference questions where respondents were asked to rank various options from 1 to 5, with 5 being the

most preferable option and 1 the least.



▪

members of the public with four or more long-term conditions3 (68%);

▪

PLWC with a great deal or a fair amount of awareness of the registry (85%); and

▪

PLWC who believe that there is an opt-out available from the registry (73%).

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Of those who express opposition towards the current method of data collection this is often due to permission not being obtained prior to inclusion (50% of PLWC opposed to the registration method; 43% of the general public) and, to a lesser extent, due to privacy concerns (12% for PLWC; 9% of the general public). Support for the principle of cancer data use is high, especially among people living with cancer (79%, compared with 73% of the general public). There is some evidence that some PLWC can be further persuaded about the merits of the registry through communication about the benefits of collecting the data. When shown an introduction about the way the registry uses data, support among people living with cancer rises to 85%.

Informing patients under specific circumstances Both audiences believe that informing patients near the end of their lives is important. Six in ten people living with cancer (63%) believe it is important that these patients are informed. The general public put more of an emphasis on informing this group, with seven in ten believing it is important (70%). This can be compared with eight in ten of PLWC and the general public (both 83%) who feel it is important for people generally diagnosed with cancer to be informed. PLWC are more pragmatic about what should happen with people’s data if they are diagnosed towards the end of their life and they cannot be informed. Nearly three-fifths of PLWC believe that if these patients cannot be informed that their data should still be included (57%). Fewer than half of the general public agree that data should be included in these circumstances (42%). Overt opposition to automatic inclusion for end-of-life cancer patients is lower, with two-fifths (18%) of PLWC and three-tenths (28%) of the general public saying that data collected on end-of-life cancer patients should not be automatically included. Both audiences agree that the most appropriate time to inform people near the end of their lives about the registry is at the point of diagnosis (39% for PLWC; 38% for general public). Again, reflecting people living with cancer’s pragmatism, this group is more likely than the general public to agree that information should be included in the registry if a patient receives a cancer diagnosis after death (60% of PLWC, compared with 43% of the general public).

Support for different types of health data use Respondents in both samples were split into two groups, one was shown possible uses of cancer data, while the other was shown the same uses but with cancer data substituted for health data generally. This was to identify any potential differences between attitudes towards cancer data, separate from health data broadly. For both health data and cancer data, support for different uses is higher among PLWC than the general public, but overall support is very high for all uses of data.

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Small base size (53), treat with caution 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016


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Among people living with cancer, there is little difference in support for cancer data uses and health data uses, with a broadly similar ‘strongly support’ measure across health and cancer data uses: ▪

for research into treatments (74% strongly support for cancer data; 71% for health data);

▪

to contact people if new treatments become available (73%; 72%);

▪

to research causes of a cancer/a disease (72%; 71%);

▪

for direct care (60%; 66%); and

▪

to plan services (59%; 58%).

For the general public, though, there is some evidence that cancer data has a special status, compared with health data. Two-thirds (66%) of the public strongly support cancer data being used to contact patients when new treatments become available, compared with 60% for health data. Similarly, half of the general public strongly support cancer data being used to improve services (50%), but only two-fifths feel the same about health data generally (40%).

Implications of the research for cancer registration This research has shown that support for the broad aims and goals of cancer registration is high among the public, who want to see cancer research being furthered by access to patient data. In comparison with other research into health data, such as into sharing data with commercial organisations and with academics for less defined research, support for this kind of data use is very high. Support for the aims of the registry are higher among people who have some personal experience of cancer than among the general public. While the views of the general public are important, it should be remembered that those who are included in the cancer registry, the patients, are generally more supportive of both cancer registration in principle and also more supportive of automatic inclusion. However, this research shows that there are areas to be considered if the high support for cancer registration is to be maintained. Firstly, awareness of the registry is low, and while this is to be expected among the general public, low awareness among people living with cancer is connected to lower levels of support for the current data collection method that the cancer registry uses. There is also some suggestion that the right communication of benefits to people who have cancer may even lead to greater support among people living with cancer. Those that oppose the registry tend to do so on grounds of a lack of permission being given and the research also shows uncertainty around the ability to opt-out. Raising awareness, and particularly awareness of the withdrawal option, could be one way of lowering concerns that permission is not being asked before inclusion of the data. Among those who oppose the registry’s current method of data collection, lack of consent appears to be a key factor driving concern from both people living with cancer and the general public. However, across the research, PLWC are more pragmatic and so may be more willing than the public to understand that the registry cannot be opt-in if it is to be effective. These concerns aside, there is a great opportunity provided by the cancer registry to demonstrate to the public and patients how good research needs good data. This report shows that informing people living with cancer more about the



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registry might lead to substantial support for data collection, if the collection is done appropriately, and with a commitment to go to reasonable lengths to inform patients about what data will be used, by who and how.



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1 Introduction 1.1 Background The importance of complete data on people living with cancer is vital for conducting research into the causes of cancer and the impacts of cancer and its treatment on patients. Registries like the National Cancer Registration Service provide a way of collecting large amounts of good quality data on patients. However, it is also important to ensure that where information is communicated about the benefits, risks and purposes of the registry that it is relayed in a manner appropriate to the sensitivities of the situation. The concerns around privacy and the security of health data on the one hand 4, and the huge value placed on data for research into cancer on the other, mean that patient and public engagement around the collection of patient data is vital. Other research, like that on Commercial Access to Health Data, has discovered that there is support for health data collection when done correctly, but that this trust is fragile 5. Cancer Research UK and Macmillan Cancer Support commissioned Ipsos MORI to find out what people living with cancer and the general public think about the process of cancer data collection. This report describes findings from online research undertaken in June 2016 into this, looking at two different audiences: people who have or have had cancer, and the general public.

1.2 Aims and objectives The project set out to gain a deeper understanding of the views of people living with cancer (PLWC) and the general public on the collection of data in the cancer registration system. As part of this, there were several subsidiary objectives to support the main aim. 

To explore awareness of the cancer registry.



To understand when people affected by cancer and the general public think is the most appropriate time to inform patients about the collection of cancer data.



To understand people affected by cancer and the general public’s views on informing people with cancer about the registry under specific circumstances, such as at the end of life, and what should happen to the data if people in these circumstances are not informed.



To explore how general attitudes towards health and cancer data compare between the general public and people living with cancer.

4

JRRT/Ipsos MORI (2014), ‘Privacy and Personal Data’, https://www.ipsos-mori.com/Assets/Docs/Polls/jrrt-privacy-topline-2014.pdf (accessed

06/08/2016) 5

Wellcome Trust/Ipsos MORI (2016), ‘Commercial access to health data’, https://www.ipsos-

mori.com/researchpublications/publications/1803/Commercial-access-to-health-data.aspx (accessed: 05/08/2016) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016


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1.3 Methodology Between the 13th June 2016 – 4th July 2016, Ipsos MORI conducted an online survey of 1,033 adults in England aged 18+ who have or have ever had cancer, and of 1,000 adults in England aged 18+ drawn from the general public. Interviews were carried out using Ipsos MORI’s Online Access Panel, which includes 361,000 online panellists aged 16 and over in Great Britain. This panel was used as it provides a fast and a cost-effective way of screening a large number of people to find those who have or have had cancer. In order to achieve the completed surveys with this hard-to-reach group, an initial survey was used to identify panel members who have or have had cancer. This group was then targeted with the follow-up main survey. Partner panels were also used to achieve the final quotas for the cancer audience. Quotas were set on age and gender for PLWC, and on age, gender and region for the general public, in order to reflect the demographic profiles of each group as closely as possible. Corrective weights were also applied to bring the sample in line with the population. ▪

For the general public, the weighting was by gender, age group and region, using 2011 census data.

▪

The PLWC weights for age and gender were calculated using Macmillan-National Cancer Intelligence Network cancer prevalence estimates, produced from data collected in the cancer registries. Additional weights for region were calculated using regional cancer prevalence data on the Local Cancer Intelligence toolkit.

The questionnaire was developed collaboratively between Macmillan Cancer Support, Cancer Research UK and Ipsos MORI, with input from all parties. This process was also aided by an initial immersion session at a Cancer Research UK and Macmillan Cancer Support patient involvement workshop and four cognitive interviews with members of the patient involvement group to provide an initial test of the questionnaire.

1.4 Notes on interpretation of the data The report presents the headline findings in chart format and then describes these findings in the text, going into any relevant details of sub-groups. Differences are statistically significant unless otherwise stated. Please see the appendix for details on statistical significance. The survey results can provide an indication of the prevalence of views in society, and also about how different groups hold differing attitudes. This can be useful in understanding which factors might affect a certain point of view. These should also be viewed with caution – sub-groups do not tell the whole story. Age differences, for instance, might be a function of an entirely different set of factors, like location or internet use. Where percentages do not sum to 100, this is due to computer rounding and/or participants being able to select multiple responses.

1.5 Structure The structure of the report broadly follows the structure of the questionnaire (which can be found in the appendices). However, some questions have been moved around in order to aid the flow of the report. The report chapters are thematic and cover the following question areas. 

Chapter two discusses awareness of the cancer registry, including awareness of the opt out system.





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Chapter three describes attitudes to informing people with cancer about the survey – exploring whether respondents believed informing was important, and when, by whom, and by what method they should be told about the registry.



Chapter four explores overall support for the cancer registry’s data collection method and the principle of using cancer data.



Chapter five looks at respondents’ views on informing people in specific circumstances, such as end-of-life cancer patients.



Chapter six discusses support for different types of health data sharing.

1.6 Acknowledgements Ipsos MORI would like to thank Dr. Louisa Petchey and Julie Flynn at Macmillan Cancer Support and Michael Chapman, Rose Gray and Naomi Gay at Cancer Research UK for their support and input into the study. We would also like to thank their colleagues in both organisations who provided help on the survey and questionnaire. Finally, we would like to thank those members of the public who took time out of their day to share their experiences with us: members of the patient involvement groups, and all those participants who took part in this important research.



2 Awareness of the cancer registry This chapter explores overall awareness of the cancer registry, including understanding of the opt-out system and perceptions of how important awareness is.

Key findings ▪

Awareness of the registry is very low among both the general public and PLWC, though it is slightly higher among the latter group.

▪

There is also a low awareness of the ability to have information removed from the registry.

▪

The general public are more likely to think that information can be removed, while PLWC often make the incorrect assumption that their information cannot be removed from the registry.

▪

Both audiences place a high importance on cancer patients being informed about the registry, though PLWC are a little more likely to say being informed is not important.

▪

Both groups believe that people in general should be aware of the registry, with around three quarters of each group considering it important.

2.1 Knowledge about the cancer registry All respondents were presented with a short description of the cancer registry6 and then asked to rate their awareness of it. Awareness of the registry is very low among both the general public and PLWC, although PLWC claim to be slightly better informed. Four out of five members of the general public state they have never heard of the cancer registry (80%), with just under three out of four members of the PLWC group stating the same (74%). In comparison, 6% of PLWC feel they know a great deal or a fair amount about the cancer registry, while only 3% of the general public think likewise.

6‘In

England, when a person is diagnosed with cancer, information about them is automatically included in a national database called the cancer registry. This information is stored by Public Health England (PHE). The data for the registry is collected directly from hospitals and healthcare professionals.’ 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

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Very low awareness of registry among general public and people living with cancer Q1. Before today, how much, if anything, had you heard about the cancer registry?

6%

83%

A great deal

4% People living 10% 10% with cancer 2%

74%

A fair amount Just a little

3% General public

Heard of, know nothing about

89%

7% 9% 2%

Never heard of

80%

1%

Don’t know

Bases: 1,033 England adults who have or had cancer, 1,000 England general public, 13th June to 4th July 2016

Source: Ipsos MORI 2

While the numbers in the sub-groups who say they know ‘a great deal’ or ‘a fair amount’ are very small, there appears to be a consistent difference by employment status in people’s lack of awareness. Nearly four-fifths (76%) of non-working people living with cancer have never heard of the registry, compared with two-thirds (66%) of people living with cancer who are in work. Similarly, over four-fifths (84%) of general public non-workers have never heard of the registry, while fewer (78%) of the working public have never heard of the registry. For the general public, awareness is also low among those who are over 55, where 84% say they have never heard of the cancer registry.

2.2 Understanding the opt-out system People with cancer are able to opt out of having their information recorded on the cancer registry, but awareness of this opt-out system is not widespread. Four in ten (38%) of people who have or have had cancer think that information can be removed from the cancer registry. This correct belief is more commonly held by the general public, nearly half (46%) of whom think that information can be withdrawn.


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General public more likely to think that info can be removed from registry Q2. Do you think it is true or false that people who have cancer can choose to have their information removed from the registry?

% ‘Definitely / probably true’

People living with cancer

38%

General public

46%



Around one in ten people who have or have had cancer and the general public believe they probably or definitely cannot choose to have their information removed from the registry (11% for both audiences). PLWC are less certain than the general public that they can choose to have their information removed, with half saying they don’t know if it is true or false (51%). In comparison, just over two-fifths of the general public are uncertain (43%). This points to a clear communication action point for the registry. There is a link between awareness of the registry and knowledge of the opt-out system. Within the general public group, those who are more aware of the registry are more likely to believe they can opt out, with 72% of those who knew a great deal or a fair amount about the registry 7 believing they can opt out. In comparison, under half of those who know little about the registry think they could opt out (45%). Similarly, among PLWC, those who are more aware of the registry are more likely to think they can opt out (61%) than those who are not aware of the registry (34%). Although the general public are more likely to be correct that they can opt out, given their low awareness of the registry it is unlikely they know with certainty that they can opt out. Moreover, this suggests an attitude towards data collection whereby the general public expect to be able to choose and control what happens with their data. In comparison, people living with cancer make incorrect but possibly a more pragmatic assumption about withdrawal of data.

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Caution: small base size (29) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

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2.3 Importance of cancer patients being informed about the registry All respondents were presented with a short explanation of the kinds of data included in the cancer registry 8, and then asked to rate the importance of people living with cancer being informed about this data collection. Both PLWC and the general public put a high importance on informing people living with cancer about the collection of their data. Over four-fifths of PLWC (83%) say it’s important that people diagnosed with cancer are informed about the inclusion of their data in the cancer registry.

Most see cancer patients being informed about data collection as being important Q4. How important is it for people diagnosed with cancer to be informed about the collection of data for the cancer registry and the choices they have about their information being included?

% ‘Very / quite important’ People living with cancer General public

83%

86%



A similar proportion of the general public (86%) agree that it is important to inform people living with cancer, though a higher proportion of the general public say informing people living with cancer is ‘very important’ (52%, compared with 43% of PLWC). Conversely, one in ten of the general public think informing people living with cancer is not very important or not at all important (8%), a smaller proportion than the PLWC audience (14%). As might be expected, importance of informing people living with cancer is linked with importance of informing the public about the cancer registry. Of those that believe that it’s important for the general public to be informed, over nine-tenths of both samples also believe it’s important for people living with cancer to be informed (94% for PLWC and 95% for the general public).

‘The registry contains the following information about people diagnosed with cancer: their name and address; age; gender; date of birth, the type of cancer or condition; when and how they were diagnosed; what treatment they received; and the outcome of this treatment. To get a more complete picture, this information can also be linked to other data when available. Personal information that could identify an individual is only shared outside the registry under strict controls and only with people who are legally allowed to see this information. ’ 8


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Similar proportions agree, but slightly more of cancer audience think informing is not important Q4. How important is it for people diagnosed with cancer to be informed about the collection of data for the cancer registry and the choices they have about their information being included?

83% People living with cancer

14% Very important

43%

40%

10%

86% General public

52%

10% 3% 3%

35%

8% 5% 1%

Quite important Not very important Not at all important Don't know



There is also evidence among PLWC of some differences by social grade. Those PLWCin the highest social grade tend to think that informing people living with cancer is less important than those in the lowest social grade (79% of AB, compared with 90% of DE social grade). Among the general public, those who know someone affected by cancer put a higher priority on people living with cancer being informed about the registry than those who do not know someone with cancer (88% compared with 82%). Opposition to the current method of registry data collection among the general public is also connected to importance of informing, with over nine in ten (93%) of general public who oppose the current collection model saying that informing people living with cancer is important (compared with 89% of supporters of the current data collection model). The proportion of this group that think informing people living with cancer is ‘very important’ is very high (75%, compared with 51% of general public supporters of cancer registry data collection).

2.4 Importance of awareness Both PLWC and the general public believe that people in general should know about the cancer registry regardless of whether they have been affected by cancer.


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And most think that people ought to know about the cancer registry Q5. How important, if at all, is that people generally know about the cancer registry, regardless of whether they have been affected by cancer?


22% Very important

30%

43%

19%

3%4% Quite important

74% General public

28%

19% 46%

17%

7% 2%

Not very important Not at all important Don't know



Just under three in four people in both groups agree that it is very or quite important for people to be aware of the registry (73% for PLWC and 74% for the general public). Similar numbers of people affected by cancer believe it is not very important or not at all important for people in general to know about the registry as the general public do (22% for PLWC and 19% for the general public). Those with long term conditions (LTCs) are more likely to assign importance to knowing about the registry. Among PLWC, more than four out of five people with four or more LTCs say knowing about the registry is important (84%): in contrast, only 67% of those with no LTCs agree. A similar pattern can be seen among the general public. Here, 78% of those with one to three LTCs agree that general awareness is important, compared to 71% of those with no LTCs. For the general public, it is possible that this factor is related to age, where four-fifths of over-55s believe that it is important for people generally to know about the cancer registry (79%, compared with 70% of 18-34s and 73% of 35-54s). The importance placed on informing the public in general about the registry is broadly lower than the importance placed on informing people living with cancer (as discussed in 2.3). While 73% of PLWC feel it is important that the public generally are informed, this proportion is ten percentage points lower than the 83% of PLWC who feel it is important for people living with cancer to be informed. Similarly among the general public, 74% think the public ought to be informed about the registry, which rises to 86% when asked about the people living with cancer being informed.



3 Informing people about the registry This chapter addresses questions about how people living with cancer should be informed about the data collected by the cancer registry. It looks at how information about data collected should be prioritised among other information communicated to people living with cancer, as well as when and how they should be informed about the cancer registry.

Key findings ▪

People living with cancer are more pragmatic and have a more ‘long-term’ view about the kinds of information they want in relation to their cancer, placing more emphasis on hearing about opportunities for research and how their data is collected. The general public, on the other hand, feel the priority should be about the immediate issues of treatments and prognosis.

▪

Both groups focus on the point of diagnosis as the best time for being informed about the cancer registry. However, PLWC are more practical about being informed, with more of them opting to hear about the registry later during the course of treatment.

▪

People living with cancer and the general public want to receive information directly, rather than passively, but PLWC prefer this information through correspondence. The general public generally feel this information should be conveyed face-to-face.

▪

Of those who want to hear from a healthcare professional, most think this should be from a consultant.

▪

Of different kinds of information that can be communicated about the registry, both groups feel all of the information is important.

3.1 Priority of information about data collection Respondents were asked to rank five different kinds of information, based on how important they are for someone to know when they are diagnosed with cancer. These responses were then calculated into mean scores. It is worth noting that these mean scores are very similar and so they should be treated with caution. In this section we discuss the indicative ranking between them, rather than the specific differences between means. Among people living with cancer, the priorities are opportunities to further participate in medical research (mean score: 3.07 out of 5) and the nature of the information collected about them and how this information could be used (3.05). After this, the next important types of information were where to get emotional and practical support for their cancer (3.02) the treatment options that are available (2.94); and the prognosis for the cancer (2.93). This suggests that people living with cancer taking part in our survey have a ‘longer term’ perspective when answering this question. The priority order for the general public differs from people living with cancer, with the prognosis (3.06) and the treatment options (3.05) perceived as most important. After this, the general public thinks that people living with cancer need to have information about:


19

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▪

practical and emotional support (2.97);

▪

what information will be collected (2.97); and

▪

opportunities to participate in medical research (2.96).

The general public’s priorities reflect their need to focus on the immediate issues. The difference in priorities between the general public and PLWC is quite marked, and may, again, be down to the more experienced views of PLWC towards cancer care. The general public, on the other hand, put more emphasis on the information that could inculcate the most fear, such as prognosis and treatment.

Mixture of views on what info is the priority at diagnosis Q3. Please rank the following pieces of information in the order of how important they are for someone to know when they are diagnosed with cancer.* (MEAN SCORES)

Opportunities to participate in medical research


General public

What information will be collected about them

Where to get practical and emotional support

What the treatment options are and side effects

Whether their cancer is curable

3.07

3.05

3.02

2.94

2.93

2.96

2.97

2.97

3.05

3.06


*See appendices for full question wording


Among PLWC, those who think it is important that people are generally informed about the registry also put a priority on information about data collection being communicated to patients (3.12 compared with 2.80 of PLWC that say it is not important for people generally to be informed). Information about data collection was also a priority for people living with cancer who wanted to hear more directly about the registry, such as those who wanted to hear about it from a healthcare professional (4.34) or in a letter from the registry (3.50). Among the general public who know someone with cancer, there was a weaker emphasis on information about data collection (2.88 for those who know someone with cancer, compared with 3.12 for those who do not know someone with cancer). This group puts a greater focus on hearing about the treatment options (3.11).


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3.2 Appropriate times for informing patients about the registry Respondents were asked to judge when the most appropriate time would be for cancer patients to be informed about the registry. The overall message was similar for both PLWC and the general public, with more favouring being informed at diagnosis than at any other single point (43% of PLWC and 41% of the general public). However, overall, people living with cancer are more practical about when the best time would be, tending to be more open to hearing about the cancer registry after diagnosis (37% after diagnosis) than the general public are (29% say after diagnosis). Conversely, the general public are more likely to think people living with cancer should be told about the registry during the first tests for cancer (21% of general public, compared with 13% of PLWC).

At point of diagnosis most appropriate time to be informed for many Q6. If people diagnosed with cancer are informed about the registry, when would the most appropriate time be?*


General public During first tests

13%

21%

At diagnosis

43%

41%

During treatment

20%

37% say

Between treatments

4%

18% 4%

after diagnosis

After treatment

13% *% 2% 5%

Before/as soon as information is recorded I don’t think cancer patients should be informed about the registry

29% say after diagnosis

7% 1% 2%

Don’t know

7%




Among people living with cancer, those who are in an advanced stage of cancer9 are most likely to want to hear about the cancer registry at the point of diagnosis. Those people living with cancer who are in remission or cancer free, on the other hand, are more likely to feel that once the treatment has ended is appropriate (16%, compared with 13% of the overall PLWC audience). In the general public sample, those with four or more long term conditions (LTCs) were most likely to think that people living with cancer should be told about the registry at diagnosis (64%, compared with 38% with no LTCs; 42% with 1-3 LTCs). This could potentially be linked to age, as older members of the public also think this communication should happen at diagnosis, with half of over-65s giving this response (52%).

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Caution: small base size (38) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016


3.3 How should people be told about the registry? As with the priorities for different kinds of information for cancer patients (section 3.2), respondents were asked to rank five different ways of hearing about the cancer registry, based on how appropriate they are for informing people diagnosed with cancer about the registry 10. Mean scores were then calculated for each communication method. As with the priorities for information, the mean scores cluster quite closely together, and so caution should be exercised when comparing mean scores directly. This section compares these rankings indicatively to give an idea of the differences between PLWC and the general public. People living with cancer were most likely to want to hear about the registry in a letter or leaflet, either directly from a healthcare professional (3.08) or from the cancer registry itself (3.06). Other methods that were less preferred by PLWC were: ▪

in a face-to-face meeting or appointment with a healthcare professional (HCP) (3.01);

▪

in a leaflet available in a waiting room (2.93); and

▪

from posters in hospitals (2.93).

The general public, on the other hand, are more demanding of HCPs, with a face-to-face meeting being the most preferred method for being informed (3.25) or a leaflet or letter from their HCP (3.08). This may reflect less exposure to the burden that HCPs are under from the general public, or may reveal a greater weight placed on the advice of HCPs, as opposed to other roles in the health sector. Alternatively, people living with cancer may believe they have other things they want to discuss with HCPs directly. The less popular means of communication among the general public are: ▪

in a letter sent by the cancer registry (3.05);

▪

from posters in hospitals (2.84); and

▪

in a leaflet in the waiting room (2.77).

In both populations, though, active contact with the patient, whether by correspondence or in consultation, are preferred to passive forms of communication.

10

The two per cent of respondents in each sample who do not think that cancer patients should be informed about the registry were not asked this

question as it was not relevant to them. 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

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People living with cancer more likely to prefer pragmatic options for being informed Q7. Please rank the following in order of the most appropriate way of informing people diagnosed with cancer about the cancer registry.* (MEAN SCORES) In a letter sent by the cancer registry

In a face to face meeting with a healthcare professional

From posters in hospital

In a leaflet available in the waiting room

3.08

3.06

3.01

2.93

2.93

3.08

3.05

3.25

2.84

2.77

In a leaflet or letter from a healthcare professional


General public

Bases: All except those who do not think cancer patients should be informed about the registry, 1,012 England adults who have or had cancer, 984 England general public, 13th June to 4th July 2016



Among people living with cancer who oppose the current data collection method, receiving a letter from an HCP was a preferred method of hearing about the registry (3.38, compared with 3.09 of supporters of the model). Similarly, those people living with cancer who oppose the collection of cancer data generally also preferred hearing about the registry through correspondence with an HCP (3.39, compared with 3.04 for supporters of collection of data). Among the general public, a leaflet or letter from an HCP is generally more preferred by those with a degree (3.20) and those who use the internet daily (3.10), and these factors may well be linked. Conversely, those in the AB social grade (2.73) are less likely than those in the DE social grade (3.05) to think that posters in hospitals are an appropriate way of informing patients. For those respondents who ranked a face-to-face conversation with a healthcare professional in their top three most appropriate methods of communication, they were asked a follow-up question about which HCP would be most appropriate to provide information about the registry. Both populations generally prefer to hear from consultants, but more so for people living with cancer (62%, compared with 54% for the general public), potentially due to their understanding of the role and expertise of specialists. The general public, however, have a greater expectation of their GP to give them information regarding the registry (19%, compared with 9% of the cancer audience). Other healthcare professionals that PLWC want to hear from include: ▪

nurses (18%);

▪

key workers (10%); and


24


▪

specialist cancer / Macmillan / Marie Curie nurse (1%).

For the general public, other HCPs they feel could be appropriate include: ▪

nurses (15%);

▪

key workers (11%);

▪

any or all of the HCPs listed (1%).

People living with cancer want to hear from consultants, rather than GPs Q8. Which of the following healthcare professionals do you think would be most appropriate for providing information about the cancer registry? General public

People living with cancer 0% Any/all of them

62% Consultant

1% Specialist cancer nurse

18% Nurse

9% GP

10% Key worker

1% Any/all of them

54% Consultant

0% Specialist cancer nurse

19% GP

15% Nurse

11% Key worker

Bases: All those who ranked a healthcare professional in their top three appropriate information sources, 529 England adults who have or had cancer, 531 England general public, 13th June to 4th July 2016


Among PLWC who wanted to hear from an HCP, men tend to prefer hearing directly from the consultant (72%, compared with 53% of women), whereas women are happier getting this information from a nurse (25%, compared with 9% of men). For PLWC as well, there also appeared to be greater continuity between which HCP they wanted to hear from and when they felt was the most appropriate time to be informed. People living with cancer who think patients should be informed when having the first tests for cancer were more likely to think the GP is the most appropriate contact (23%), while those people living with cancer who believe that diagnosis is the most appropriate time to be informed prefer hearing from a specialist (70%). Similarly, people living with cancer who want to hear from an HCP during treatment have more of a preference for hearing from HCPs who they have more contact with at that time: nurses (27%) and key workers (17%). Members of the public who place importance on patients being informed about the registry also think this information should come from a specialist source (56%, compared with 39% of the public who think informing patients is not important). Conversely, members of the public who do not believe informing patients is important are more likely to feel 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016


that a nurse is the most appropriate healthcare professional (30%, compared with 13% of those who believe informing patients is important). The consistency between appropriateness of time and the communicator is also present among the general public.

3.4 Importance of different pieces of information about the registry Generally, different kinds of information about the registry are considered important. For PLWC, the following kinds of information are all given a similar level of importance: ▪

data and security safeguards (95%);

▪

who is able to access the information (95%);

▪

the benefits of a cancer registry (94%);

▪

what the information will be used for (94%); and

▪

information kept in the registry (93%).

The potential risks and drawbacks to being included in the registry are considered slightly less important than the other kinds of data, but still widely seen as important (84%). ‘Very important’ responses proved a great differentiator of priorities for these questions. Three quarters of people living with cancer say it is important to know who will have access to the data (77%), and a similar proportion say the information about safeguards is important (76%). Fewer put a high priority on what the information will be used for (71%) and what information is kept in the registry (67%). The lesser priorities for people living with cancer are the benefits of having a cancer registry (59%) and the potential risks and drawbacks (52%). Looking at the ‘very important’ measure shows that there is a preference for knowing about the details of what data is collected, how it will be used and by whom. They are less interested in evaluative information summarising the risks and the benefits.


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Importance of different kinds of information for an informed choice Q11a-e. How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry? % ‘Very important’


General public

76% 73%

What data security and safeguards are in place

77% 76%

Who is able to access the information

What the benefits are of having a cancer registry

59% 58% 67% 71%

What the information in the cancer registry is used for

67% 69%

What information is kept in the cancer registry

What the potential risks and drawbacks are to being included in the registry

52% 55%

Bases: All except those who do not think cancer patients should be informed about the registry, 1,016 England adults who have or had cancer, 984 England general public, 13th June to 4th July 2016 Source: Ipsos MORI 15

The general public also placed great importance on each of the different kinds of information. There was slightly less of a deficit between the risks and drawbacks and the other kinds of information, with nine in ten saying that the risks and drawbacks are important to be aware of (89%). The ’very important’ responses for the general public tell a similar story to PLWC, with similar proportions giving a priority for each: ▪

who can access the information (76%);

▪

security safeguards (73%)

▪

what the information is used for (71%);

▪

what information is kept in the registry (69%);

▪

the benefits of having a registry (58%); and

▪

the potential risks and drawbacks (55%).


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4 Support for cancer registry The following section describes support for the system of cancer registry. Primarily, it explores support for the current method of data collection that the registry adopts, as well as reasons for opposition. The last part of this chapter also looks at support for the principle of using data about people living with cancer.

4.1 Attitudes towards the current data collection method Support for the current data collection method Currently, when a person receives a cancer diagnosis in England, the information collected about them is included in the registry automatically. People are able to contact the registry if they would like their data removed. Respondents were presented with this information11 and asked if they support this method of data collection. Broadly, there is support for this method of collection among both audiences. People living with cancer were more supportive, with two-thirds (65%) expressing support and nine per cent opposing. Among the general public, half support the method of data collection that registry currently adopts (52%), with one in ten opposing (12%). A similar proportion of each group is uncertain about the current method, with 23% of people living with cancer and 28% of the general public saying they neither support nor oppose the current method.

Support for current data collection method higher among people living with cancer than public broadly Q9. To what extent do you support or oppose this way of collecting data for the cancer registry?


65% support

9% oppose

General public

52% support

12% oppose



11

Please see questionnaire in appendix for full wording. 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

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As well as being more likely to support, PLWC also tend to ‘strongly’ support the current method of collecting data more than the general public (25% and 17%, respectively). In contrast, only 2% of PLWC and 7% of the general public strongly oppose the current method. While support is high, there are a lot of people on the fence. A quarter of people living with cancer (23% say neither support nor oppose; 2% say don’t know) and over a third of the general public (28% say neither support nor oppose; 7% say don’t know) are unwilling to express an opinion either way on the topic. This may mean that these individuals need more information on the subject before they commit to an opinion. The research on Commercial Access to Health Data12 showed that how data is collected is often just one concern – who is using that data and why are also important considerations for many.

General support for current data collection method of the registry Q9. To what extent do you support or oppose this way of collecting data for the cancer registry?

9%


25%

40%

23%

52% General public

17%

7% 2% 2%

12% 35%

28%

9% 4% 7%

Strongly support

Tend to support

Neither support not oppose

Tend to oppose

Strongly oppose

Don’t know

Bases: 1,033 England adults who have or had cancer, 1,000 England general public,

13th

June to

4th

July 2016


For PLWC, support is steady across the different demographics. Awareness, however, plays a substantial role in support. Over four-fifths (85%) of those who have heard a great deal or a fair amount about the cancer registry support the current method of data collection, compared with six in ten of those who have only heard of or never heard of the registry (62%). Those people living with cancer who support automatic inclusion for end-of-life patients are more likely to support the current method of collection as well (79%, compared with 43% of those who think data from uninformed, end-of-life cancer patients should not be included).

12

Wellcome Trust, Ipsos MORI (2016), ‘Commercial access to health data’, https://www.ipsos-

mori.com/researchpublications/publications/1803/Commercial-access-to-health-data.aspx (accessed: 05/08/2016) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

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Knowledge of the opt-out availability was also linked with support among people living with cancer. Nearly three-quarters (73%) of those who think information can be withdrawn from the registry also supported the current method of collection, compared with six in ten of those who do not believe data can be withdrawn from the registry (63%). Among the general public, support for the current data collection system is higher among over-55s (58%) than 18-34s or 35-54s (both 49%). Support is also higher among members of the public with more long term conditions (LTCs), with nearly seven in ten of those with four or more LTCs supporting the current method of collection (68%, compared with 50% of those with no LTCs; 55% of 1-3 LTCs). Support among the general public is also higher for those who know someone with cancer (56%) than those who do not know anyone with cancer (46%). Reasons for opposition to the registry’s collection method Those that oppose the registry’s data collection were asked a follow-up question about their reasons for opposition. For both audiences, these largely centred around concerns about consent.

Reasons for opposition centre around privacy and consent Q10. And why do you say you oppose this way of collecting data for the cancer registry? (UNPROMPTED) Showing mentions of 5% or over Permission should be obtained before inclusion

43% 12% 9%

Privacy concerns Concerns that patients are not told about the registry Need full disclosure about how information will be used

6%

6%

Identifiable information should not be included

2%

6%

Concerns that third parties will use information

2%

Diagnosis/treatment is enough to deal with Don't know

9%

7% 5%

It should be opt in not opt out

Unclear on the use of cancer registry

50%

17%

6%

4% 5% 2%

7%

People living with cancer General public

10% 7%

Bases: All those who oppose current method of collecting data for the cancer registry, 107 England adults who have or had cancer, 122 England general public, 13th June to 4th July 2016


Across both groups, concerns are similar. Around half of opposition comes from permission not being obtained prior to inclusion (50% of PLWC; 43% of general public) and this is backed up by demand for the registry to be opt-in (6% of PLWC; 17% of general public). Privacy concerns are also quite central (12% for PLWC; 9% of general public), as well as practical aspects of privacy: identifiable information being included (6% for PLWC; 2% of general public) and concern over third parties having access to data (6% for PLWC; 2% of general public).



Because of small base sizes for this question, there are not many meaningful sub-group differences. However, people living with cancer who oppose the current method of collection, but that support collection of cancer data in general were mostly being put off by the lack of consent and lack of information, rather than privacy concerns. This suggests that there is a proportion of people living with cancer who oppose the current method of data collection but do not oppose cancer data collection being used on principle, and that these people could be persuaded with more communication and engagement.

4.2 Support for the principle of cancer data collection As well as questions related specifically to the registry, the study also looked at more general support for collecting cancer data. To do this, respondents were faced with a trade-off: should we collect data about patients because it can improve cancer services and treatments, or not collect this data because of the risks to privacy and security? As well as this, for both audiences, half of the sample received an extra piece of introductory text before the question to identify whether extra information about the registry could help assuage some doubts. The extra text is similar to the kind of text used by the cancer registry to explain uses of cancer data to patients:

“The cancer registry in England collects the medical information of people diagnosed with cancer. The data is used to improve cancer services and treatment, such as planning NHS services, investigating potential causes of cancer and identifying trends in cancer diagnosis, survival, treatment and care. However, some people have concerns that if their personal healthcare data is collected and shared for purposes beyond their direct medical care, it could be lost, stolen or used for commercial gain.” Support in this trade-off scenario is high across both groups. PLWC are very supportive, with nearly four-fifths of those who did not see the introduction supporting collecting cancer data (79%), while 12% say the data should not collected. With the above introduction, support rises further with 85% of the cancer audience believing we should collect cancer data. Opposition among people living with cancer shown the introduction stays around the same at around one in ten (9%). It is worth noting that the very high proportion who agree strongly with the principle of cancer data collection (62%) does not change with the introduction. This suggests that the introduction is successful in convincing some of those who are on the fence or oppose data use, and not so successful in further persuading those people living with cancer who show some support in favour of cancer data collection.


30

31


PLWC might be swayed by persuasive information Q18A/B. Which of the following statements comes closest to your view?


Introduction, using official explanation text*

85% 62% A: We should collect data about patients because it can be used to improve cancer services and treatments

9% 4% 5% 4%

23%

B: We should not collect data about patients because of the risks to privacy and security

No introduction

79% 62%

12% 17%

7% 5%7%

Agree much more with A than with B

Agree a little more with A than B

Agree equally with both/agree with neither

Agree a little more with B than with A

Agree much more with B than with A

Don't know

Bases: Split sample, 501 England general public adults shown introduction, 499 England general public adults not shown introduction, 13th June to 4th July 2016



Support for the principle of cancer data collection among the general public is also high, though slightly lower than PLWC, with three quarters agreeing data should be collected about patients (73% without the introduction). Around one in seven of those who did not see the introduction believe the risks of collecting data outweigh the benefits (14%). The extra information, however, makes no difference to the attitudes of the public. A similar proportion of those who saw the introduction think that data about patients should be collected (72%), while one in eight (12%) think that this data should not be collected.


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General public not persuaded by additional information about registry Q18A/B. Which of the following statements comes closest to your view?

General public

Introduction, using official explanation text*

12%

72% 46% A: We should collect data about patients because it can be used to improve cancer services and treatments

26%

10% 7% 5%

No introduction

14%

73% 49%

25%

B: We should not collect data about patients because of the risks to privacy and security

9% 8% 6%

Agree much more with A than with B

Agree a little more with A than B

Agree equally with both/agree with neither

Agree a little more with B than with A

Agree much more with B than with A Bases: Split sample, 500 England adults shown introduction, 500 England adults not shown introduction,

Don't know 13th

June to

4th

July 2016



While these findings suggest that informing people living with cancer using the kind of information conveyed in the introduction will have a positive impact on how happy they are to have data collected, this information will not necessarily have the same impact on the general public. The general public might need different kinds of information to be further convinced about the benefits of cancer registry.


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5 Informing under specific circumstances This chapter explores attitudes towards informing people about the registry under specific circumstances: when people are diagnosed with cancer near the end of their life, and when people are diagnosed after they have died.

5.1 Informing end-of-life patients Importance of informing end-of-life patients Chapter 3 discussed how people with cancer should be informed about the registry under normal circumstances: however, respondents were also asked about informing people who are only diagnosed with cancer towards the end of their lives. The general public tends to assign more importance to informing both end-of-life patients and cancer patients in general about the collection of cancer data. Among the general public, seven in ten say informing end-of-life patients is important (70%, compared to 63% among PLWC). Around one third of PLWC do not consider informing end-of-life patients important, compared to only a fifth of the general public (32% compared to 21%).

Informing end-of-life cancer patients is important, but people living with cancer more pragmatic Q12. Where cancer diagnosis is towards the end of life, how important is it that people are told about the cancer registry and the choices they have about their information being included?

32%


30%

33%

11% 6%

21%

70% General public

38%

Very important

21% 32%

Quite important

Not very important

16%

5% 9%

Not at all important

Don't know



These responses mirror the response to questions about informing people under usual circumstances (discussed in Chapter 3). However, both audiences assign more importance to informing people under usual circumstances than they do to end-of-life patients. While 63% of people living with cancer think informing end-of-life patients is important, 83%


34


think informing cancer patients under ordinary circumstances is important. Similarly, while 70% of the general public value informing end-of-life patients, 86% support informing patients in general. There is a strong relationship between importance of informing cancer patients usually and informing them towards endof-life. Among PLWC, 70% of those who think informing people living with cancer was important also think informing end-of-life patients is important. For the general public, 76% who think informing cancer patients also think informing end-of-life patients is important. Automatic inclusion when patients are not informed While both audiences do value informing end-of-life cancer patients about the registry, when informing is not possible PLWC audience takes a more pragmatic view towards data collection than the general public does. Nearly three-fifths of PLWC believe that information should be included in the cancer registry when informing end-of-life patients has not been possible, compared to two fifths of the general public (57% and 42%). The general public are also more likely than PLWC to say that information should not be included in the registry (28%, compared to 18%).

Automatic inclusion of data more supported by PLWC Q13. Where people are diagnosed with cancer towards the end of their life and where it is not possible to inform them about the cancer registry or the choices they have, which of the following comes closest to your view? General public


12% Don’t know

1% Information included, next of kin informed 1% Information should be included anonymously

57% Information should be included

18% Information should not be included 11% Decisions should be made by relatives

17% Don’t know

1% Information included, next of kin informed 1% Information should be included anonymously

42% Information should be included 28% Information should not be included 12% Decisions should be made by relatives



Overall, although both audiences value informing patients, people living with cancer are more pragmatic about the data, while the general public take a more protective stance. Among PLWC, 53% of those who said informing end-of-life patients was important agreed that data should be recorded if patients could not be informed. Even among those who said informing end-of-life patients was ‘very important’, half still said that the individual’s information should be included (50%). In comparison, 42% of the general public who said that informing was important agreed that information should be recorded, falling to 39% among those who thought informing was ‘very important’.


35


This means that while people generally put importance on the principle of informing people in end-of-life stages, when this is not possible they often still think the data should be collected. A respondent placing importance on informing patients near the end of their life does not mean they will oppose automatic inclusion of their data. When to inform cancer patients diagnosed near end-of-life Similar to when questioned about the appropriate time to inform people with cancer (see Chapter 3), when asked about the most appropriate time to inform end-of-life patients, both the general public and people living with cancer suggest at the point of diagnosis is best (38% for the general public and 39% for PLWC). However, the general public think that discussing the registry during the first tests for cancer is the second most appropriate time (20%), while only 11% of PLWC agree that this is an appropriate time. A fifth of PLWC think that end-of-life patients do not need to be informed at all (19%): in contrast, only 9% of the general public think the same. This contrasts to when both groups were asked about informing cancer patients in general: there, only 2% of both groups suggest not informing patients.

Time to be informed for end-of-life diagnosis similar to regular diagnosis Q14. When would be the most appropriate time to inform people diagnosed with cancer about the cancer registry if they aren’t diagnosed until near the end of their life?

General public

People living with cancer 11%

During first tests

20%

At diagnosis 38%

39% 15%

14%

During treatment During gaps between different treatments

4% 5%

7%

5%

Once treatment has ended *%

19%

3%

Next of kin should make decision

1%

I don’t think they need to be informed

9%

Don’t know

9%



In Chapter 3, we detailed attitudes towards when is most appropriate for patients to be informed about the registry. Here, we have found that people do not necessarily hold consistent views on when to tell someone about the registry when it comes to end of life scenarios. For example, among PLWC who believe that patients should be informed at diagnosis, only 68% believe that this remains the most appropriate time even when patients are near the end of their lives. Similarly, among the general public who support informing at diagnosis, 72% support this with end-of-life patients. However, among PLWC who support telling patients after treatment has ended, only 29% still support this with end-of-life patients. Instead, 31% now say that these patients don’t need to know about the registry.


36


5.2 Diagnosis after death and the cancer registry The proportions of people who support the automatic collection of data about deceased people who could not be informed about the cancer registry are similar to the proportions of people who support the use of data from people near the end of their lives. Three-fifths of PLWC believe that, when informing is not possible, information about people who are diagnosed with cancer after they have died should be included in the cancer registry (60%). By contrast, over two-fifths of the general public support this (43%).

Support for automatic inclusion after death higher for PLWC Q15. In some cases, people are not diagnosed with cancer until after they have died. In these cases, which of the following statements comes closest to your view? People living with cancer

% ‘Strongly / tend to support’

60% Information should be included

9% Don’t know

1% Information should be included anonymously


General public 43% Information should be included

15% Don’t know

0% Information should be included anonymously




People living with cancer are slightly more protective of the data of deceased people than end-of-life patients, with 22% saying data should not be used, compared with 18% who thought data from end-of-life patients should not be used. The general public is equally as likely not to support the use of data from deceased people as they are from end-of-life patients (29% and 28%, respectively).



6 Support for different types of health data sharing As was described at the end of chapter four, there is widespread support for the principle of cancer data use. The final chapter of this report shows how support for different data uses compares between cancer data and health data generally. For these questions, respondents in both audiences were split sampled, with half of each group being asked to what extent they support different uses of cancer data and different uses of health data. For instance, half the sample were asked to what extent they support people’s health data being used to ‘research treatments for a disease’; the other half of the sample were asked to what extent they support cancer data being used to ‘research treatments for cancer’. Thus, this chapter compares responses to both health and cancer data between the general public and people living with cancer.

6.1 Uses of cancer data Support for the different uses of cancer data is high, and among people living with cancer there is an exceptionally high level of support13. Support among people living with cancer across the different uses of cancer data ranges from 94% for contacting patients if new treatments arise to 89% for direct medical care. General support is slightly lower for the general public, but still around nine in ten support the different uses of cancer data. Support ranges from 90% for researching treatments for cancer to 83% for using cancer data for direct medical care. Given these very high levels of support, a combined ‘strongly / tend to support’ measure is not a good differentiator of views. Looking at ‘strongly support’ responses, people living with cancer demonstrate their priorities for cancer data. Three uses of data receive a great level of strong support from PLWC:

13

▪

research treatments of cancer (74%);

▪

contacting people if new treatments become available (73%); and

▪

researching the causes of cancer (72%).

When compared with past work, looking at health data sharing. See, among others, Ipsos MORI / Wellcome Trust (2016) ‘Commercial access to health

data’, https://www.ipsos-mori.com/researchpublications/publications/1803/Commercial-access-to-health-data.aspx (accessed: 26/08/16) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

37

38


High support for uses of cancer data Q17a-e. To what extent would you support or oppose data about people’s cancer being used for the following purposes?* % ‘Strongly support’ 74%

To research treatments for cancer

62% 73%

To contact people if new treatments become available for their cancer

66% 72%

To research causes of cancer

To plan cancer services

By healthcare professionals for direct medical care

62% 59% 50% 60% 52% People living with cancer

Bases: Split sample, 517 England adults who have or had cancer, 500 England general public, 13th June to 4th July 2016

General public



These three priorities compare with the two uses with a lower level of strong support among people living with cancer: use for direct care (60%) and to plan cancer services (59%). The ‘strongly support’ measure shows a similar story for the general public, who place a greater weight on contacting people if new treatments become available (66%) and researching treatments (62%) and causes (62%) of cancer. Use for direct care (52%) and planning cancer services (50%) receive lower levels of strong support. Levels of overt opposition for using cancer data are low for both samples, ranging from two to four per cent for PLWC and just four to seven respondents in the general public sample.

6.2 Uses of health data The pattern of support for uses of health data mirrors closely that of cancer data. Support is again extremely high among people living with cancer, ranging from 96% supporting health data being used to contact people if new treatments become available to 90% who support using health data to plan hospital services. Levels of support are lower for the general public, but still very high. Nearly nine in ten (89%) support health data being used to contact people if new treatments become available. There is a bigger drop among the public, however, in health data being used for planning hospital services. The average deficit between people living with cancer and the general public on the other health data uses is seven percentage points. The support deficit between PLWC and the general public on using health for improving hospital services is 12 percentage points. This deficit is not seen for cancer services, and suggests that there is a small amount of scepticism in the wider public towards uses of health data for generic health planning, compared with other kinds of data use.


39


Support for the uses of health data consistently higher for people living with cancer Q16a-e. To what extent would you support or oppose data about people’s health being used for the following purposes?* % ‘Strongly support’ 72%

To contact people if new treatments become available for their condition

60% 71%

To research the causes of a disease

58% 71%

To research the treatments for a disease

57% 66%

By healthcare professionals for direct medical care

54% 58%

To plan or improve hospital services


Bases: Split sample, 516 England adults who have or had cancer, 500 England general public, 13th June to 4th July 2016


General public


As with uses of cancer data, the ‘strongly support’ indicator provides a good differentiator of support levels. For PLWC, strong support is highest for: ▪

contacting people if new treatments become available (72%);

▪

researching treatments for a disease (71%); and

▪

researcing the causes of a disease (71%).

Slightly fewer strongly support health data being used for direct care (66%). The scepticism towards using health data for planning hospital services is evident for people living with cancer here who show less strong support for planning generic hospital services (58%). The story is similar for the general public whose strong support is highest for: ▪

contacting people if new treatments become available (60%);

▪

researcing the causes of a disease (58%); and

▪

researching treatments for a disease (57%).



There is less strong support for health data being used for direct care (54%), but again, the lowest levels of strong support are reserved for planning hospital services (40%) – the only time across all uses of data that strong support falls below half. These findings are corroborated by other surveys on attitudes towards data. Three quarters in a survey for the Royal Statistical Society14 said that hospitals and GPs should have access to health records for reasons related to care (77%). This level is slightly lower than in this study, but broadly in line with the 85% of the general public who “tend to” / “strongly support” a similar health data use.

6.3 Comparison between health and cancer data The split sample experiment, showing some respondents health data uses and some cancer data uses did not reveal many differences. For people living with cancer, there are no differences in overall support between health and cancer data being used. There is only one difference in levels of strong support, and this shows more of a support for health data being used for reasons of direct care (66%), while cancer data is not as widely supported for this purpose (60%). With this being the only difference for people living with cancer, it is not possible to conclude that they see cancer data uses as more of a priority than wider health data uses. However, given these questions were asked at the end of the survey, it is also possible that the PLWC who were asked about health data were thinking to some extent about cancer data when they answered these questions. Among the general public, there is some evidence of cancer data holding a more privileged position in their attitudes towards data than health data more broadly. Over four-fifths of the general public support using cancer data to plan cancer services (84%), compared with 78% who support using health data for planning and improving hospitals services. The difference in levels of strong support is even more marked: half (50%) strongly support using data to plan cancer services, compared with two-fifths (40%) strongly supporting using health data for planning hospital services. The public also show greater strong support for people with cancer being contacted about new treatments (66%) than people with an unspecified condition (60%), again suggesting that cancer data use is seen more charitably than health data use by the public.

14

RSS/Ipsos MORI (2014), ‘New research finds data trust deficit with lessons for policymakers’, https://www.ipsos-

mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx (accessed: 06/08/16) 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

40


Appendices


41

43


7 Appendices 7.1 Appendix 1 – Topline

Technical note: Ipsos MORI carried out an online survey with 1,000 members of the public and 1,033 people who have or have had cancer. All respondents were interviewed online and in England, aged 18+. The data are weighted to be representative of gender, age, region and working status for the general public; the data are weighted to be representative of gender, age and NHS region for the people living with cancer. Fieldwork was carried out between 13th June 2016 to 4th July 2016. Highlighting has been added to show where results are significantly different between the people living with cancer and the general public. A highlighted cell shows that the value is significantly higher as compared with the other sample. Results are based on all respondents unless otherwise stated. Please note that where percentages do not sum to 100, this may be due to respondents being able to give multiple responses to a question or computer rounding. An asterisk (*) indicates a percentage of less than 0.5% but greater than zero. A dash (-) indicates a percentage of zero. People living with cancer (a) Q1.

Q2.

General public (b)

Base size: Before today, how much, if anything, had you heard about the cancer registry?

1033

1000

A great deal A fair amount A little Heard of, know nothing about Never heard of Don't know A great deal/a fair amount Heard of, know nothing about/never heard of Net At least heard of

2% 4% 10% 10% 74% * 6% 83% -77% 26%

* 2% 7% 9% 80% 1% 3% 89% -86% 19%

Base size: Do you think it is true or false that people who have cancer can choose to have their information removed from the cancer registry?

1033

1000

Definitely true Probably true Probably false Definitely false Don't know Definitely true/probably true Probably false/definitely false Net

5% 33% 10% 1% 51% 38% 11% 26%

6% 40% 10% 1% 43% 46% 11% 35%


44


Q3.

Q4.

Q5.

Q6.

Base size: Please rank the following pieces of information in the order of how important they are for someone to know when they are diagnosed with cancer. Please rank in order of importance, where 1 is the least important and 5 is the most important.

1033

1000

What the treatment options are and how serious the side effects could be

2.94

3.05

Whether their cancer is curable and if not how long they might expect to live

2.93

3.06

What information will be collected about them and how this will be recorded and used Where to get emotional and practical support for their cancer

3.05 3.02

2.97 2.97

What opportunities there may be to participate in medical research

3.07

2.96

Base size: How important is it for people diagnosed with cancer to be informed about the collection of data for the cancer registry and the choices they have about their information being included?

1033

1000

Very important Quite important Not very important Not at all important Don't know Important Not important Net importance

43% 40% 10% 3% 3% 83% 14% 69%

52% 35% 8% 1% 5% 86% 8% 78%

Base size: And how important, if at all, is it that people generally know about the cancer registry, regardless of whether they have been affected by cancer?

1033

1000


30% 43% 19% 3% 4% 73% 22% 51%

28% 46% 17% 2% 7% 74% 19% 55%

Base size: If people diagnosed with cancer are informed about the cancer registry, when would be the most appropriate time?

1033

1000

While they are having the first tests for a suspected cancer When they are told they have cancer During the period they are being treated During the gaps between different kinds of treatment Once their treatment has ended Before / as soon as any information is recorded and entered onto the registry Everyone should be aware that such a register exists already It depends on the patient / state of patients health Next of kin should make the decision / be present There shouldn`t be a registry in the first place

13% 43% 20% 4% 13% * * * -

21% 41% 18% 4% 7% 1% * * -


45


When Consultant / Doctor thinks it is the right time Other I don't think cancer patients should be informed about the registry Don't know

Q7.

* * 2% 5%

* 2% 7%

1012

984

3.01 2.93 3.08 3.06 2.93

3.25 2.77 3.08 3.05 2.84

511

531

A GP A consultant doctor, e.g., an oncologist A nurse A key worker Other

9% 62% 18% 10% 1%

19% 54% 15% 11% 2%

Base size: To what extent do you support or oppose this way of collecting data for the cancer registry?

1033

1000

Strongly support Tend to support Neither support nor oppose Tend to oppose Strongly oppose Don't know Support Oppose Net support

25% 40% 23% 7% 2% 2% 65% 9% 56%

17% 35% 28% 9% 4% 7% 52% 12% 40%

Base size: And why do you say you oppose this way of collecting data for the cancer registry?

98*

122

Concerns about privacy Concerns that the information will be used by third parties Concerns that patients are not being informed of the cancer registry Do not trust organisations to comply with data security Do not agree with identifiable information being included Diagnosis and treatment is enough to deal with already Do not agree with government data collection Full disclosure of how information will be used must be given The choice should be to `opt in` not automatic inclusion Permission should be obtained from the patient before inclusion No other illness puts you on a register Doctor / patient confidentiality

12% 6% 9% 2% 6% 2% 2% 7% 6% 50% 1% 3%

9% 2% 6% 3% 2% 7% 3% 5% 17% 43% 2%

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) Please rank the following in order of the most appropriate way of informing people diagnosed with cancer about the cancer registry. Please rank in order of importance, where 1 is the least important and 5 is the most important. In a face to face meeting or appointment with a healthcare professional, e.g., a doctor or nurse In a leaflet available in the waiting room In a leaflet or letter from a healthcare professional In a letter sent by the cancer registry From posters in hospitals

Q8.

Q9.

Q10.

Base size: (asked of all those who ranked a healthcare professional in their top 3 appropriate information sources) Which of the following healthcare professionals do you think would be most appropriate for providing this information?


46


What is the use of a cancer registry? It is wrong / unfair / I don`t agree with it Other Don`t know No answer

Q11a.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry?

4% 1% 2% 10% -

5% 3% 3% 7% 1%

1012

984

67% 26% 5% 1% 2% 93% 5% 88%

69% 24% 2% 1% 4% 93% 3% 89%

1012

984

71% 22% 4% 1% 2% 94% 5% 89%

71% 21% 3% 1% 4% 92% 4% 89%

1012

984

77% 18% 3% * 2% 95% 4% 91%

76% 18% 3% * 4% 94% 3% 91%

What information is kept in the cancer registry Very important Quite important Not very important Not at all important Don't know Important Not important Net importance

Q11b.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry? What the information in the cancer registry is used for Very important Quite important Not very important Not at all important Don't know Important Not important Net importance

Q11c.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry? Who is able to access the information Very important Quite important Not very important Not at all important Don't know Important Not important Net importance


47


Q11d.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry?

1012

984

76% 19% 3% 1% 1% 95% 4% 91%

73% 19% 3% 1% 4% 92% 3% 89%

1012

984

59% 35% 3% 1% 2% 94% 4% 90%

58% 32% 3% 1% 5% 91% 4% 86%

1012

984


52% 32% 10% 1% 4% 84% 12% 72%

55% 33% 5% 1% 5% 89% 6% 83%

Base size: Where cancer diagnosis is towards the end of life, how important is it that people are told about the cancer registry and the choices they have about their information being included?

1033

1000

Very important Quite important

30% 33%

38% 32%

What data security and safeguards are in place Very important Quite important Not very important Not at all important Don't know Important Not important Net importance

Q11e.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry? What the benefits are of having a cancer registry Very important Quite important Not very important Not at all important Don't know Important Not important Net importance

Q11f.

Base size: (asked of all except those who do not think cancer patients should be informed about the cancer registry) How important do you think it is for people diagnosed with cancer to know each of the following in order to make an informed choice about whether their information remains in the registry? What the potential risks and drawbacks are to being included in the registry

Q12.


48


Q13.

Not very important Not at all important Don't know Important Not important Net importance

21% 11% 6% 63% 32% 31%

16% 5% 9% 70% 21% 49%

Base size: And where people are diagnosed with cancer towards the end of their life and where it is not possible to inform them about the cancer registry or the choices they have,

1033

1000

The individual's information should still be included in the cancer registry The individual's information should NOT be included in the cancer registry Decision should be made by relatives / next of kin Depends on what information is being used for Information should be included anonymously / no personal identifying details Information should be included but next of kin must be informed Individuals should always be informed / consulted Other Don't know

57% 18% 11% * 1% 1% * * 12%

42% 28% 12% * * 1% 1% 17%

Base size: And when would be the most appropriate time to inform people diagnosed with cancer about the cancer registry if they aren't diagnosed until near the end of their life?

1033

1000

While they are having the first tests for a suspected cancer When they are told they have cancer During the period they are being treated During the gaps between different kinds of treatment Once their treatment has ended Before / as soon as any information is recorded and entered onto the registry Everyone should be aware that such a register exists already It depends on the patient / state of patients health Next of kin should make the decision / be present There shouldn`t be a registry in the first place When Consultant / Doctor thinks it is the right time Other I don't think cancer patients who are diagnosed near the end of life need to be informed Don't know

11% 39% 15% 4% 5% * * * * *

20% 38% 14% 3% 5% * * * 1% * * *

19% 7%

9% 9%

Base size: In some cases, people are not diagnosed with cancer until AFTER they have died. In these cases, which of the following statements comes closest to your view?

1033

1000

This individual's information should be included in the cancer registry The individual's information should NOT be included in the cancer registry Decision should be made by relatives / next of kin Depends on what information is being used for Information should be included anonymously / no personal identifying details Information should be included but next of kin must be informed Individuals should always be informed / consulted Other Don't know

60% 22% 9% * 1% * 9%

43% 29% 12% * * * * * 15%

509

500

which of the following comes closest to your view?

Q14.

Q15.

Base size: (asked of half the sample)


49


Q16a.

To what extent would you support or oppose data about people's health being used for the following purposes? By healthcare professionals for direct medical care, e.g. so information about a patient's allergies is shared between hospitals

Q16b.


66% 26% 4% 2% 1% 1% 92% 2% 90%

54% 31% 10% 1% 1% 3% 85% 2% 83%

Base size: (asked of half the sample) To what extent would you support or oppose data about people's health being used for the following purposes?

509

500


58% 32% 5% 2% 1% 2% 90% 3% 86%

40% 38% 15% 2% 1% 3% 78% 3% 75%


509

500


71% 23% 4% * 1% 1% 94% 1% 93%

58% 29% 8% 1% 1% 3% 87% 2% 84%


509

500

71% 23% 3% 1% 1% 1% 94% 2% 92%

57% 31% 7% 1% 1% 3% 88% 2% 86%

To plan or improve hospital services

Q16c.

To research the causes of a disease

Q16d.

To research the treatments for a disease Strongly support Tend to support Neither support nor oppose Tend to oppose Strongly oppose Don't know Support Oppose Net support


50


Q16e.

509

500


72% 24% 2% 1% * 1% 96% 1% 94%

60% 30% 7% * 1% 3% 89% 1% 88%

Base size: (asked of half the sample) To what extent would you support or oppose data about people's cancer being used for the following purposes?

524

500


60% 29% 6% 2% 2% 1% 89% 4% 86%

52% 31% 12% 1% * 4% 83% 1% 81%


524

500


59% 31% 6% 1% 1% 2% 90% 2% 88%

50% 34% 11% 1% * 4% 84% 1% 83%


524

500

72% 20% 4% 1% 2% 1% 92% 2% 90%

62% 25% 9% 1% * 3% 87% 1% 86%

Base size: (asked of half the sample) To what extent would you support or oppose data about people's health being used for the following purposes? To contact people if new care or treatments become available for their condition

Q17a.

By healthcare professionals for direct medical care, e.g., so information about their cancer is shared between hospitals

Q17b.

To plan cancer services

Q17c.

To research causes of cancer Strongly support Tend to support Neither support nor oppose Tend to oppose Strongly oppose Don't know Support Oppose Net support


51


Q17d.

524

500


74% 19% 3% 1% 2% 2% 93% 3% 91%

62% 27% 7% 1% * 3% 90% 1% 88%


524

500


73% 21% 2% 1% 2% 2% 94% 3% 92%

66% 23% 8% 1% * 3% 89% 1% 88%

Base size: (asked of half the sample) The cancer registry in England collects the medical information of people diagnosed with cancer. The data is used to improve cancer services and treatment, such as planning NHS services, investigating potential causes of cancer and identifying trends in cancer diagnosis, survival, treatment and care. However, some people have concerns that if their personal healthcare data is collected and shared for purposes beyond their direct medical care, it could be lost, stolen or used for commercial gain.

512

501

62% 23% 4% 5% 4% 2% 85% 9% 76%

46% 26% 10% 7% 5% 6% 72% 12% 60%

Base size: (asked of half the sample) To what extent would you support or oppose data about people's cancer being used for the following purposes? To research treatments for cancer

Q17e.

To contact people if new care or treatments becomes available for their cancer

Q18A.

Which of the following statements comes closest to your view? A. We should collect data about cancer patients because it can be used to improve cancer services and treatments B. We should not collect data about cancer patients because of the risks to privacy and security

Introduction shown Agree much more with A than with B Agree a little more with A than with B Agree equally with both / agree with neither Agree a little more with B than with A Agree much more with B than with A Don't know Agree more with A Agree more with B Net


52


Q18B.

Base size: (asked of half the sample) Which of the following statements comes closest to your view? A. We should collect data about cancer patients because it can be used to improve cancer services and treatments B. We should not collect data about cancer patients because of the risks to privacy and security

521

499

62% 17% 7% 5% 7% 1% 79% 12% 67%

49% 25% 9% 8% 6% 4% 73% 14% 59%

No Introduction Agree much more with A than with B Agree a little more with A than with B Agree equally with both / agree with neither Agree a little more with B than with A Agree much more with B than with A Don't know Agree more with A Agree more with B Net


53


7.2 Appendix 2 – Statistical reliability

Size of sample on which survey results are based

Approximate sampling tolerances applicable to percentages at or near these levels15 10% or 90%

30% or 70%

50%

+

+

+

100 interviews

7

11

12

500 interviews

3

5

5

1,000 interviews

2

3

4

Source: Ipsos MORI

Size of sample compared

Differences required for significance at or near these percentage levels 10% or 90%

30% or 70%

50%

100 and 100

10

15

17

250 and 100

8

13

14

500 and 500

4

7

7

1,000 and 500

4

6

6

Source: Ipsos MORI

15

Note that the figures presented here take full account of the impact of weighting on the sampling tolerances of the survey. 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016

54


7.3 Appendix 3 – Cancer audience sample profile The following table contains details of the demographic profile of the cancer audience sample. Sample profile

Weighted %

Unweighted %

Q16 %*

Q17 %*

Q18A %*

Q18B %*

46% 54%

43% 57%

44% 56%

43% 57%

46% 54%

41% 59%

3% 15% 82%

3% 18% 78%

3% 19% 78%

4% 18% 78%

3% 16% 81%

3% 21% 76%

27% 33% 29% 11%

29% 33% 29% 10%

28% 32% 28% 11%

30% 33% 29% 8%

32% 32% 28% 9%

26% 33% 29% 11%

97% 2%

97% 2%

96% 3%

98% 1%

97% 2%

97% 2%

94% 4%

93% 5%

93% 4%

93% 5%

92% 5%

94% 4%

18% 3% 65%

18% 4% 68%

5% 9% 25% 13% 6% 15% 29%

5% 9% 24% 13% 6% 15% 29%

4% 8% 24% 6% 3% 7% 28%

5% 9% 25% 13% 6% 17% 29%

5% 9% 23% 13% 7% 14% 28%

4% 9% 26% 13% 5% 16% 29%

Gender (1,033 valid responses) Male Female Age (1,033 valid responses) 18-34 35-54 55+ Region (1,033 valid responses) North East South London

Ethnicity (1,033 valid responses) White BME

Sexuality (1,033 valid responses) Heterosexual LGBT and other

Cancer status (1,033 valid responses) Localised/stable Advanced Remission/cancer free

Cancer type (1,033 valid responses) Bladder Bowel/colorectal Breast Prostate Cervical/womb Skin All others *unweighted percentages


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7.4 Appendix 4 – General public sample profile The following table contains details of the demographic profile of the general public sample. Sample profile

Weighted %

Unweighted %

Q16 %*

Q17 %*

Q18A %*

Q18B %*

49% 51%

49% 51%

51% 47%

47% 53%

46% 54%

52% 48%

29% 35% 35%

29% 36% 35%

30% 33% 37%

28% 38% 34%

28% 37% 35%

31% 34% 35%

28% 30% 26% 15%

28% 30% 26% 15%

29% 28% 28% 15%

28% 32% 25% 16%

28% 28% 28% 15%

29% 32% 24% 15%

92% 7%

92% 7%

94% 5%

91% 8%

93% 6%

92% 7%

92% 6%

92% 6%

92% 5%

91% 7%

91% 7%

92% 5%

64% 34%

64% 34%

61% 36%

67% 32%

64% 35%

65% 33%

Gender (1,000 valid responses) Male Female Age (1,000 valid responses) 18-34 35-54 55+ Region (1,000 valid responses) North East South London

Ethnicity (1,000 valid responses) White BME

Sexuality (1,000 valid responses) Heterosexual LGBT and other

Family or friend who has/had cancer (1,000 valid responses) Yes No *unweighted percentages



56

Debbie Lee Chan Research Director [email protected] Harry Evans Senior Research Executive [email protected] Emma Carragher Research Executive [email protected]

For more information 3 Thomas More Square London E1W 1YW t: +44 (0)20 3059 5000 www.ipsos-mori.com http://twitter.com/IpsosMORI

About Ipsos MORI’s Social Research Institute The Social Research Institute works closely with national governments, local public services and the not-for-profit sector. Its c.200 research staff focus on public service and policy issues. Each has expertise in a particular part of the public sector, ensuring we have a detailed understanding of specific sectors and policy challenges. This, combined with our methods and communications expertise, helps ensure that our research makes a difference for decision makers and communities. 16-036870-01 | Version 2 | PUBLIC | This work was carried out in accordance with the requirements of the international quality standard for Market Research, ISO 20252:2012, and with the Ipsos MORI Terms and Conditions which can be found at http://www.ipsos-mori.com/terms. © Cancer Research UK / Macmillan Cancer Support 2016