A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
Data news stories
This is a short set of items for information or interest, providing a short briefing, plus links where these are available:
Cancer Patient Experience Survey (10 Jan 2019)
This follows a long period of discussions and considerations, with the Department stating "This is an important decision, and one which has not been taken lightly.".
The organisations responsible for CPES will still need to seek the relevant approvals, such as from the Confidentiality Advisory Group, to run the survey and to abide by the conditions of those approvals, which may include respecting patient objections.
We've moved the details on the Opt-out to a new page.
National Data Opt-Out (23 May 2018)
Local Health and Care Record Exemplars (23 May 2018)
The chosen areas are:
There is further information here, including links to new patient data-related NHS England webpages up and a film to support the announcement about the partnerships:
Memorandum of Understanding (MoU) on data-sharing between NHS Digital and the Home Office.
use MY data previously submitted information to Public Health England’s consultation on the MoU and our full response can be found here. With thanks to those who responded to the survey, which formed the basis of our response.
The Health & Social Care Committee had previously published its report on 15th April, on the Memorandum of understanding (MoU) on data-sharing between NHS Digital and the Home Office.
The Committee had emphasized the damage the MoU is doing to patient care and confidence in data sharing, and had called for the MoU to be paused.
All of the details are here https://publications.parliament.uk/pa/cm201719/cmselect/cmhealth/677/67702.htm
On 15th January 2018 an article, which initially appeared in the Telegraph, was published, questioning a release of data made by Public Health England (PHE). PHE hold and manage the National Cancer Registration and Analysis Service (NCRAS) for all cases of cancer diagnosed in England. Following the initial article in the Telegraph, several similar articles quickly appeared, variously titled:
“Medical records of thousands of patients were handed to US firms connected to tobacco industry by British health officials, Telegraph probe reveals”
The concerns were around a data release to an organisation called William E Wecker Associates which had been made by Public Health England on 7th March 2016. The details are contained with the PHE Data Release register.
As part of a response article published on the same day by Understanding Patient Data (based at the Wellcome offices), Jem Rashbass from Public Health England responded by saying:
"The absolute responsibility for PHE is to make sure we never compromise patient confidentiality with any data we release. I recognise that this collection of reports in the Daily Telegraph may make the reader think we have been careless and shared patient data with the tobacco industry. We have not. We do not endorse the work of the applicant but the data released was anonymised to the extent that we could make it openly available to anyone. ”
In the days following the article we coordinated questions which members raised with the use MY data secretariat. We combined these questions and wrote to Public Health England on behalf of the use MY data members, seeking clarification on the specific questions raised by members.
A particular concern raised by members was the impact that purely negative stories such as this could have on anyone currently thinking about whether to opt out of the cancer registry or not.
However other points raised by members were more focused on the details of the release, with a general focus on the need for transparency. Essentially, members felt unclear about the conditions that the data were released under, as this didn’t seem clear, and wanted more information.
The responses we received from Public Health England, together with the specific questions asked, are shown below. If members have any further questions that they would like to be followed up, they should contact coordinator@useMYdata.org.uk
Responses to use MY data members questions from Public Health England
1. Did the applicant declare a purpose for their need for the information?
Yes, the requester submitted a research protocol. The summary of the protocol is below:
2. Did the applicant declare how the information was to be used?
Yes. Details below.
3. Did PHE perform analysis to validate this purpose and the extent to which the information could be used?
The team established that the purpose of the request was to compare rates of incidence of different types of cancer in different countries. This is an absolutely standard function of cancer registries worldwide. Second, the safety of the release was established and tested statistically to ensure that patients interests were not at risk and there was no risk of disclosure as a result of the release. The data released were pooled counts of different types of cancer. Release and indeed publication of this data is entirely compatible with ICO guidance on release of anonymised data.
4. Did PHE explore or investigate relationships between the applicant, Wecker, and Marlborough, prior to release of the data?
Funder/sponsor of the project was requested and declared but no links to the tobacco industry were declared. Under the doctrine of transparency, which is a welcome feature of Government policy in the UK and in many other countries, public bodies are not in any way selective as to whom they provide information. Decisions about release of data are instead governed primarily by the interests of the data subjects. This is a matter of policy but also of law in the form of the Freedom of Information Act. Transparency of data and information is an important safeguard in a democratic society and for the accountability of public bodies.
Furthermore the release of the data complied with international best practice. The WHO Framework Convention on Tobacco Control does not prevent the provision of data to tobacco companies. Instead there is duty to ensure that tobacco firms use accurate data and information at all times. It is in fact especially important that tobacco companies know how many cancers are caused by their products. The article suggested that other countries responded differently to us. Again the facts are somewhat different. Numerous attempts have been made by the tobacco industry to get data from Australian Government under FOI. Most appear to have been sucessful. The one study referenced by The Telegraph and which was resisted was for confidential legal advice given to the Australian Government. In the same way in Scotland Stirling University were forced to comply with a request for data.
5. Was the information given in any way limited against the application?
Data was released compliant with the ISB standard for publishing health and social care data and released under an open government licence. The data tables are available on-line.
6. Were there any caveats or penalties that would allow the PHE to subsequently make claims on the applicant?
Open government licence rules are stated here and summarised below: http://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/
7. Was there any clause in the agreement that would allow for the PHE to review the results of the applicants analysis and conclusions?
This is not relevant to this data release in line with open-government license
8. Was the PHE allowed to review any publication of any conclusions of the applicant and indeed restrict such publication should it interfere with the government’s new and expected proposals regarding opt in and opt out?
Please see answer 6. No personal data was shared in this release, the release was anonymous data in line with the ISB Standard and is open and available to all.
9. Was the information “handed to” the applicant or did PHE receive any compensation for providing the data?
Open government licence data is provided free of charge. No fees were charged or paid for this data.
Please see here: https://data.gov.uk/dataset/epidemiology-of-lung-cancer-tumours-in-england-2009-to-2013
Data is available. See an example screen shot of the data (below) - which is also available in full on the data.gov.uk website.
Cancer Patient Experience Survey (1st March 2018)
Parliamentary debate on the Cancer Strategy (1st March 2018)