Review findings and recommendations

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The government in England has been reviewing how people can be offered a clearer choice about what happens to data about their medical treatment and care. This process highlighted that the way that people are currently informed about cancer registration needs to be improved.

At the moment, individual people can choose not to have their details included in the registry. Cancer patients should receive information about the registry, as well as how they can stop their own data from being included, when it becomes relevant to them; by their hospital, at the point at which they are diagnosed.

However, we’ve heard that not all patients receive this information. We believe that patients have the right to know how their data is being used, and should have the opportunity to make an informed decision about their involvement. 

In partnership with Macmillan Cancer Support, we ran a three-month review to look at how people affected by cancer in England could best be informed about how their data is used in cancer registration.

In order to form our recommendations we listened to the views of 1,400 people affected by cancer, 1,000 members of the public, 340 health professionals and 20 cancer charities. Over three months we ran two online surveys and eight engagement events, commissioned a piece of independent research by Ipsos-MORI, and had many meetings in between. 

We have made five main recommendations, each of which is supported by more detailed sub-recommendations and guidance.

Read the findings from Ipsos-MORI

Read the full report of the review

We found that almost three quarters (74 per cent) of people affected by cancer had never heard of the cancer registry, and wanted to hear more – 83 per cent thought it was important that patients were informed about the registry. Our first recommendation is therefore that soon after a diagnosis, people with cancer should be told about the registry and its uses.

Recommendation 1: Hospital trusts should be accountable for ensuring that patients are made aware of the cancer registry and their ability to opt-out at the earliest appropriate time after diagnosis.

 

However, we know that it would be impossible for this to reach everyone. We were also concerned that the information that’s currently out there about the registry could be improved and made more accessible.

Recommendation 2: There should be multiple channels through which people affected by cancer can find out about the registry and all communication materials need to be tailored to the relevant audiences.

 

We knew that health professionals would play an important part in improving awareness, and should be able to answer questions about the registry from their patients if asked. Although 80 per cent of the health professionals we surveyed knew about the registry, they felt they did not know enough to talk to patients about it and wanted to know more.

Recommendation 3: All healthcare staff that directly interact with people affected by cancer (including support staff and health professionals in primary care and palliative care) should be able to answer basic questions about the registry and signpost to further sources of information.

 

In order to make sure that awareness is improved, we need to be able to measure how well our recommendations are being implemented across the country.

Recommendation 4: The implementation of local and national awareness-raising strategies should be measurable.

 

Finally, we heard a strong message that members of the public should also know about the registry – 74 per cent of the members of the public that we surveyed thought it was important that people knew about it regardless of whether they themselves had a cancer diagnosis. Every organisation that uses cancer data has a part to play in talking about this.

Recommendation 5: General awareness of how the NHS uses healthcare data, including cancer data, should be improved.

Read the full report of the review

We have now submitted our report to the Department of Health, as part of their wider consultation on how health and care data is managed in the NHS. We are now waiting for their formal response. 

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