Our impact
We are working to break down barriers that prevent the use of patient data to save lives and improve outcomes.
Recognising the
patient contribution
We expect the use of our data in research papers to be acknowledged. Together our Members created the Patient Data Citation, adopted widely and endorsed by organisations including Understanding Patient Data and Health Data Research UK to acknowledge the role of patients in research. Please see the Case Studies link below for further details.
Education
& information
We host regular online Education Sessions to explore patient data topics, requested by Members. This is an opportunity to engage with and question directly a wide range of subject experts. Education Sessions are a two-way conversation in terms of learning – for our Members and for our guest speakers. We work to bring the patient perspective to clinicians, researchers, and policy makers Members also receive regular bulletins with patient data news and engagement opportunities.
Starting
conversations
Respected for our data expertise, insights and independence, we are a trusted forum for informed discussion and debate about patient data issues. We create opportunities for dialogue between patients and researchers. Our Members work directly with researchers, to aid the use of patient data. We provide a safe space for academics, researchers and policy makers to engage with patients. We believe in positive engagement and have a clear set of principles that we expect others to follow.
Driving forward
transparency
Our Transparency Principles set the bar for best practice in patient involvement. Transparency should underpin everything and is essential if the trust and support of patients and the public is to be maintained and developed. Transparency means operating in such a way that it is easy for others to see what actions are performed. In a nutshell, say what you do, do what you say. Please see the Case Studies link below for further details.
Stimulating
national debate
We have a clear set of principles that we encourage others to follow. We act as critical friends to organisations that hold patient data. Our independence, insights and expertise are highly valued and respected.
Campaigning
& influencing
Led entirely by patients, we have an impressive record of influencing health data decisions. We do this by campaigning & influencing on a range of issues around using patient data. Our Members regularly contribute to policy documents (e.g. The Sudlow Review). Please see the Consultation Responses link below for further details.
Position Statements
We have developed a range of Position Statements describing use MY data’s position on several areas of patient data usage and policy. These are free to use.
The establishment of the Health Data Research Service
In June 2025 we wrote to a range of key national leaders and stakeholders, on behalf of the Members of use MY data to welcome the announcement of the Health Data Research Service (HDRS).
Our expectations of organisations which use our patient data
To ensure openness and transparency about how patient data is used, and to build trust in the uses of patient data, we expect any organisation that uses patient data to explain their data uses.
Highlighting the benefits of using patient data
The benefits of sharing and using patient data are not always understood or communicated well.
But most treatments and care provided by the NHS are based on data and information from patients.
Supporting the use of synthetic data to make research more secure
Synthetic data is designed to look closely like the real data it represents, but is completely fictitious. We describe how we think synthetic data should be used to make research more secure.
Realising the benefits of a truly National Health Record
use MY data supports a move to ensure all parts of your health and social care record are available and accessible to you and your health professionals across the UK when you need treatment or advice.
How the Goldacre Review maps to the views of use MY data Members
The publication by Prof Ben Goldacre makes recommendations for the safer use of data for research, including the use of Trusted Research Environments.
We have examined the Report...