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.

National Disease Registration Service
(Publication date 2021-04-15)

use MY data working with the National Disease Registration Service

The National Disease Registration Service (NDRS) is publishing a series of data stories and asking use MY data to comment on each one, bringing a patient perspective to the use of patient data.

The first data story focusses on the Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project, highlighting how patient data has been used to understand howpeople with rare autoimmune diseases have been affected during the COVID-19 pandemic.

David Snelson, Advisory Group Member, reviewed the data story and commented:

“This research is very important for people with a rare disease. When someone is diagnosed with a rare disease, they are often shocked and worried. Research like this helps clinicians to provide the right treatment and to advise the patient on how to manage their condition. Often people with a rare disease join a patient support group and research like this can also help the group to advise its members.

This study shows what can be done when trusted organisations use our health data. When data from a whole population is used and different parts of our health data are linked together, we get a better picture of the most important issues.”

The data story was published on 07 April and is available here.

[Read/Print the full story here]

Accountability transparency and public participati
(Publication date 2020-03-02)

Understanding Patient Data have published new research on what the public thinks about businesses and organisations using data held by the NHS.

The research shows that members of the public support the use of NHS held health data by third parties, only when there is benefit to patients across the UK, rather than for short term financial gain for the NHS. Benefits to patients includes things like improving disease detection or developing new medicines and treatments.

Dr. Natalie Banner, who leads Understanding Patient Data said This research shows that people are excited by the idea that NHS held data could be used to improve care for patients, and help everyone live longer, healthier lives. At the same time, this data is about people, so the public should have a say in how its used. The Government must act now or risk damaging the trust people have in the NHS.

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NHS data Report
(Publication date 2020-02-13)

The report NHS data Maximising its impact on the health and wealth of the United Kingdom was published on 5 February.

It acknowledges that Citizens have not been involved in setting the rules & principles by which decisions about data use are made and pushes for this to change.

The report has a section Public opinion and engagement. For the report, a series of interviews were conducted. Patients, the public and health care professionals were not consulted. The report addresses this by saying:

Interviewees included representatives from government, the NHS, academia, industry (technology and life sciences), research institutions, charities and data privacy organisations. We have not consulted the public or healthcare professionals for the purposes of this paper, as we chose to focus on experts in the data policy and governance space. Part of the rationale of the paper is to understand which issues should be explored with the public and how to do so.

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How should we think about clinical data ownership?
(Publication date 2020-01-30)
Angela Ballantyne has published an article examining whether individuals own their own healthcare data. I argue in favour of a broader relational account of ownership, and suggest that the solution to potential data harms involves strategies to reconnect patients with their data and engage them in debates and decision-making about secondary uses. Transparency is a necessary platform for public engagement and should be prioritised across the clinical data ecosystem. The article entitled How should we think about clinical data ownership? was published on 7 January and is free to access.

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Barriers to working with NHS Englands open data
(Publication date 2020-01-15)

Researchers from the DataLab, housed at the University of Oxford, have this month published a paper discussing the Barriers to working with National Health Service Englands Open Data.

The authors use their experiences of developing and maintaining OpenPrescribing.net, an online tool to help users explore NHS primary care prescribing open data, to describe what kind of barriers are encountered when trying to access the data and suggest solutions that would make the data more usable and impactful.

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NHS Digital Bulletin
(Publication date 2019-12-13)

NHS Digital - Research bulletin - England focus

The recent NHS Digitals November research bulletin highlights a "clinical review that explores how other organisations use patient-level data released through our Data Access Request Service (DARS)". The report outlines five main areas of impact and breaks down how different organisations use the patient data held by NHS Digital.

The bulletin also has links to NHS Digitals statistical publications.

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Understanding Patient Data Update
(Publication date 2019-12-13)

Understanding Patient Data has published an update blog. Alongside providing an update on recent activities and the growing team, the blog highlights three key areas that the 2020 strategy will focus on:

Growing our partnerships to support the people best placed to have conversations about how patient data is used (including health professionals, charities and patient groups)

Ensuring the views of patients, health professionals and the public are heard by the people who set national policy and make decisions about how patient data is managed and accessed

Understanding and promoting the views of diverse groups of people, to prevent the concerns of underrepresented groups being neglected in decisions how patient data is used.

The blog is available to read here - https://understandingpatientdata.org.uk/news/hello-again

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New research from Reform; Data-driven healthcare:
(Publication date 2019-11-01)
New research from Reform; Data-driven healthcare: regulation and regulators

The field of data-driven technologies in healthcare has seen massive expansion over the past few years. With this comes huge potential to improve patient experience and care, if these technologies are harnessed in the right way. Central to making this vision a reality is smart regulation. Unfortunately, it is often viewed as a burden or barrier to innovation.

To remedy this, Reform has been working in collaboration with NHSX to produce several easily digestible sources of information which can be used by innovators, medical practitioners, statutory bodies, regulators and any other interested party to understand the full regulatory pipeline for data-driven technologies in healthcare.

They have produced a series of videos which provide a high-level summary of the innovation journey and regulatory compliance process in the UK, for data-driven technologies in healthcare. You can watch them here .

They have also designed a high-level static map which gives an overview of the entire regulatory process.

They have created a dynamic standalone presentation with full details and hyperlinks to guidance from regulators and statutory bodies (to be viewed on a widescreen and in presentation mode).

Reform also contributed a chapter (titled Mapping the regulation journey) to the NHSX report Artificial Intelligence: How to get it right , published on 30 October 2019.

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Online Targeting and Bias in Algorithmic Decision-
(Publication date 2019-07-23)

Interim reports published on Online Targeting and Bias in Algorithmic Decision-Making

The Centre for Data Ethics (CDEI) have published the Centre for Data Ethics & Innovation’s interim reports for our two major Reviews into Online Targeting and Bias in Algorithmic Decision-Making.

These reports set out the issues that the Centre for Data Ethics are addressing and their approach, an update on their progress to date and how they will spend the next few months as they work up towards final recommendations to the Government.

Alongside these reports, they have also published landscape summaries which have informed each review and summarises the academic, policy and other literature in these two areas.

The Centre comments "While our Calls for Evidence have formally closed, we are keen to continue to work with and hear from interested parties and stakeholders across these issues".

To get in touch with the Reviews team, please email policy@cdei.gov.uk.

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Cancer registration data blog
(Publication date 2019-07-11)

The National Cancer Registration and Analysis Service - Case studies & blog - Cancer registration data

The National Cancer Registration and Analysis Service (NCRAS) has published an informative blog and case studies, highlighting how patient data is used to save lives & improve treatments. The emphasis is on the patient as the source of the data.

NCRAS has been "working with patients, healthcare professionals, and the public to develop these case study type stories which describe how exactly NCRAS, and others, use patient information to improve cancer care."

The first case studies are here cancer data stories along with the blog .

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AMRC Impact Report 2019
(Publication date 2019-07-11)

Association of Medical Research Charities - Report - Making a difference: Impact Report 2019 - UK focus

A report from the Association of Medical Research Charities (AMRC) following on from its initial Impact Report in 2017 and "incorporating two more years of data and new stories of how charity-funded research has impacted patients and society."

The report is structured around the five areas of impact:

  • Generating new knowledge
  • Translating research ideas into products and services
  • Creating evidence that will influence policy or other stakeholders
  • Stimulating further research via new funding or partnerships
  • Developing the human capacity to do research

The report is available here - https://www.amrc.org.uk/impact-report-2019

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Electronic Health Records in Ireland
(Publication date 2019-07-11)

IPPOSI - Event - Electronic Health Records in Ireland: getting it right from the start - Monday, 7 October, Dublin - Ireland focus

The Irish Platform for Patient Organisations, Science and Industry (IPPOSI) is hosting a free conference designed to encourage discussion and debate on the design and development of eHealth technologies in Ireland.

Hosted as part of the IPPOSI 2019 Theme of Patient Data , this conference offers a unique forum for discussions on how the design & development of eHealth technologies in Ireland can be based on peoples needs, with a focus on ethical sharing, patient privacy and respect for peoples choices and preferences.

Full details of the event, including registration are here .

IPPOSI is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health policy and innovation.

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Best practice guidance for public involvement
(Publication date 2019-07-11)

Health Research Authority - Guidelines - New best practice guidance for public involvement

The Health Research Authority (HRA) has launched brand-new public involvement pages with information about how to involve patients and the public well from the beginning of your research projects.

The guidelines have been produced by the HRA Public Involvement Team, which works with researchers, patients and the public to ensure patients and the public are placed at the centre of health and social care research.

There are four key principles for best practice in public involvement:

  1. Involve the right people - people who have lived experience relevant to the health condition or social care situation being researched, and to the people the study will aim to recruit as participants
  2. Involve enough people to provide a reasonable breadth and depth of views on the issues that are likely to be important to the people the study will aim to recruit, and who it is intended to benefit
  3. Involve those people enough in as many aspects of the study as is feasible, productive, and appropriate to the research - and at the right times
  4. Describe in your application how it helps using the question specific guidance in the Integrated Research Application System (IRAS) to make it clear how involving people well helps to address potential ethical issues.

The guidance is here .

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National Data Guardian - Consultation response
(Publication date 2019-07-11)

National Data Guardian - Consultation response - Response to the comments and feedback on the NDG proposed work priorities

The National Data Guardian for Health and Care (NDG) has published the response to the consultation on proposed work priorities.

In response to the consultation feedback the NDG has refined plans and will be pursuing three refocussed priorities. These are:

  • Supporting public understanding and knowledge
  • Encouraging information sharing for individual care
  • Safeguarding a confidential health and care system

Addressing the plan to encourage information sharing for individual care, the response states:

  • We will continue to support the work to develop a framework to realise the benefits for patients and the NHS where health and care data is being used to underpin innovation. This will come under our priority: Supporting public understanding and knowledge
  • We will address respondents calls for the NDG to support the use of data in innovation which can improve care. This will now come under the priority Supporting public understanding and knowledge.
  • We will examine what additional public engagement would be most useful on the subject of the benefits from the use of health and care data. This will now be addressed as a new area of work under the priority: Supporting public understanding and knowledge.
  • We will amend our priority for Safeguarding a confidential health and care system to reference work looking at the linking of health and care data with other types of information.

The full response is here .

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Public attitudes to organisations and NHS data
(Publication date 2019-07-02)

National Data Guardian poll findings: public attitudes to organisations innovating with NHS data

Dame Fiona Caldicott, the National Data Guardian for Health and Social Care, has today released the results of a poll on public attitudes to NHS organisations working with partners to use data to develop new medicines and technologies to improve health.

The polling, which was undertaken with more than 2,220 people in England, tested what the public thought would be fair when partnerships with universities or private companies result in new discoveries that could be traded commercially. It presented a range of benefits that result from such partnerships, including improved care for patients, financial benefits for the NHS and profits being made by partner organisations.

To give some headline findings, the poll found strong support for the idea that the NHS and patients should benefit from partnerships with universities and private companies. For example:

  • 58% felt it is fair that the NHS shares in a profit with a partner university, and 56% with a partner private company
  • 73% agreed the NHS should benefit in other ways eg, through getting access to new technologies or medicines at a reduced cost
  • 77% agreed that the "main benefit for NHS patients is improved care and treatment"

However, views on profits being made by partners were less clear:

  • 49% agree or strongly agree that it is fair that a profit is made by a partner university, and 51% by a partner private company
  • A significant proportion neither agreed or disagreed that it is fair that a profit is made by a partner university (41%) or a partner private company (36%)

Dame Caldicott has suggested that the proportion of respondents neither agreeing or disagreeing with questions may be because these are issues that have not been yet discussed sufficiently with the public.

use MY data will have a significant and continued role to play moving forward.

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The Swallows Carers Survey- Shaping the future
(Publication date 2019-06-26)

The Swallows Head and Neck Cancer Charity are conducting a National survey on Carers of Cancer patients. The survey is for ALL types of cancers and its aim is to understand what support is given, what support is needed, how support can be reached and what impact being a cancer patient carer can have on carers as they go through diagnosis, treatment and beyond with their patients.

The survey is online and will only take approximately 15 mins. You can complete the survey here .

The Swallows hopes that by completing this survey you will help give a voice to carers across the UK and help implement change for the future of cancer carers, please share the link on social media to help us understand the full impact for carers.

If you have any queries please contact Wendy Brown at wendy@theswallows.org.uk

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