Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.





NHS Health Research Authority - Consultation
(Publication date 2019-06-21)

NHS Health Research Authority - Consultation - Transparency and openness in health and social care research

The NHS Health Research Authority (HRA) has launched a consultation on transparency and openness in health and social care research. The consultation aims to explore the HRA vision for research transparency, strategy, plans and proposals. Views are sought on the different options for improving transparency performance across the research system.

A series of consultation workshops are planned:

London: Tuesday 16 July

Manchester: Thursday 25 July

Cardiff: Wednesday 31 July

Belfast: TBC

Edinburgh: TBC

Full details of the consultation are here . Responses are being collected via a survey which is here. The consultation is open from Monday, 17 June to Friday, 6 September 2019.

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How big data is helping patients
(Publication date 2019-06-10)

London School of Hygiene and Tropical Medicine - Surviving cancer: how big data is helping patients live longer, healthier lives

The London School of Hygiene and Tropical Medicine have produced an excellent account of their research using cancer survival data, which includes a section on their links with the NCRI Consumer Forum - the report is available here.

Accompanying the article is a four-minute video on YouTube featuring a use MY data member.

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REFORM: a data-driven approach to cancer care
(Publication date 2019-06-07)

This Reformer Thoughts series brings together healthcare experts to discuss the potential of a data-driven approach to cancer care


Reformer Thoughts brings together the opinions of leading experts from academia,business and government; frontline practitioners and public service users, to provide readers with valuable insight into the challenges shaping the policy debate. The series aims to give a platform to innovative ideas and facilitate an open and informed conversation about how we can improve public services.

The article shows how data are currently shaping the delivery of cancer care, how to gain the most from data that are currently available and how to maximise the potential of this data in the future.

The Reformer Thoughts was supported by AbbVie UK.

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New Resource quick-guide
(Publication date 2019-05-29)

Understanding Patient Data (UPD); new Resource quick-guide

What is the quick-guide?

The quick-guide brings UPD resources together in one short, simple summary. It aims to help users to:

  • find UPD resources more quickly
  • address patient and public common concerns
  • feel supported in championing best practice.

This resource was developed following feedback from our supporters, who wanted to be able to share UPD information with new audiences more easily and save time when trying to locate our resources.

The guide is available here: https://understandingpatientdata.org.uk/news/resource-quick-guide .

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Understanding Patient Data (UPD) and NHS England
(Publication date 2019-05-17)

Tender - Public engagement on partnership models involving NHS data

Understanding Patient Data (UPD) and NHS England are going to commission a new research to find out what people think and feel about different partnership models between the NHS and private companies wishing to use NHS data.

The hope is that this work will be a useful way to get a better grasp on what matters to people in practice and to provide guidance to help the NHS navigate this complex landscape. UPD and NHS England are launching the call for proposals now and aim to have the work completed and published openly over the summer.

For more details and to read the request for proposals, please visit here .

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use MY data workshop - Summary
(Publication date 2019-05-17)

The summary from our 7 May workshop Patient data – balancing access and protection – all talk and no access? has now been published.

We have published the summary on our events page with the direct link here .

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The Health Foundation - Report
(Publication date 2019-05-17)

Untapped potential: Investing in health and care data analytics - England focus

A new report from The Health Foundation highlights nine key reasons why there should be more investment in analytical capability, to make better use of the huge amount of data generated by the NHS.

The report summary is available

here

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The Health Foundation - Blog
(Publication date 2019-05-17)

Is data the new oil? - UK & international focus

A balanced blog from The Health Foundation on the analogy of data as new oil.

The blog is here .

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NHS Digital CEO on current data policy
(Publication date 2019-03-15)

Health Service Journal - Article about the view of NHS Digital CEO on current data policy

Talking at a recent event in London, NHS Digital chief executive Sarah Wilkinson has warned a confused policy on data sharing risks sowing deep and almost irreparable public mistrust. She warns that the existing mistrust is already slowing us down on sharing data to improve care, with clinicians in particular anxious about sharing it with the health research systems because they do not feel they can be completely confident in its uses. The National Data Opt-out is described as not sophisticated enough.

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Patient engagement in big data initiatives
(Publication date 2019-03-14)

The London School of Economics Department of Health Policy and Imperial College London Institute of Global Health Innovation host event on the role of patient engagement in big data initiatives.

http://www.lse.ac.uk/health-policy/research/Patient-engagement-in-big-data-initiatives

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DeepMind Health (DMH) / Google acquisition
(Publication date 2018-12-13)

The independent review panel, set up to provide oversight of DeepMind Health's handling of patient data, has been disbanded. The HSJ reported this week:

"The government has sought a 'full explanation' for why an app developed using NHS patient data has been transferred to tech giant Google, where it will receive less independent oversight. In response to written Parliamentary questions , health minister Lord O'Shaughnessy said he had met with Google DeepMind to raise the issues. He said: "We will seek a full explanation from Google about its plans, including why they have halted the independent review panel and how they intend to replace this function. We will work with regulators, including the Information Commissioner's Office, and the Centre for Data Ethics and Innovation to ensure anything that happens as a result of the transfer of Streams respects patients' privacy and complies fully with the law." The government had received assurances that no identifiable patient data has been transferred from Google DeepMind as a result of the change, he said

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NHS Digital's Independent Group Advising on Data
(Publication date 2018-12-13)

IGARD is seeking to recruit a specialist member, who has an “understanding of confidentiality, consent, and the Caldicott Principles. You will be from a clinical, public health, ethics or health research background and we are particularly interested to hear from General Practitioners.” The closing date for applications is Sunday, 6 January 2019. I attach the advertisement, which has a link to obtain further details.

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Reform report
(Publication date 2018-12-13)

The independent think tank, Reform, has published a report ‘Making NHS data work for everyone’

https://reform.uk/sites/default/files/2018-12/NHSdata%20-%20no%20gif%20SP.pdf

The report’s focus is on commercial access to patient data and use MY data contributed to this.

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Big Data approaches to healthcare research
(Publication date 2018-07-07)

I’ve just come across this seminar, at which the use of big data in health research and its potential to improve health outcomes will be discussed.  There are details here - https://www.eventbrite.co.uk/e/big-data-approaches-to-healthcare-research-tickets-46561439519   It is free to attend.

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Type 2 objections not honoured by NHS Digital
(Publication date 2018-07-02)

This story came out today in the HSJ. The Government has revealed that 150,000 Type 2 objections have not been honoured. This is because the GP system provider TPP did not pass patients objections on to NHS Digital, due to a coding error. There are more details here https://www.telegraph.co.uk/news/2018/07/02/150000-medical-records-shared-against-patients-wishes/

Beyond individuals choices not being honoured, this is also likely to damage public confidence in sharing patient data.

For information - Type 2 objections came into being under the Care.data system (and have now been replaced by the National Data Opt-out). Type 2 objections were lodged with the GP and meant that personal identifiable information could be sent to NHS Digital, but should not be disseminated or published by NHS Digital.

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Government response to Lords AI report
(Publication date 2018-07-02)

The Government response to the Lords AI report is here https://www.parliament.uk/business/committees/committees-a-z/lords-select/ai-committee/news-parliament-2017/government-response-to-report/ This will be followed by a debate, the timing of which his awaited.

We have not yet read the full report, but on a quick skim through can see there is much about the commercial value of patient data, yet perhaps not enough about transparency for patients

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