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.

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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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


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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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