A movement of patients, carers and relatives

Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes


Our Calls to Action and 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. 

Our Call to Action:
My Access to My Health Records

use MY data calls on the NHS to take actions to ensure that:

a) The NHS should provide better information for GP Practices and patients about the rights of patients to see our own record and how we can overcome any problems in that access,
b) The NHS should extend this right so that patients can access our hospital data too.

My access to my health records is available here

Our related work around the Citizens Access to GP records in England is available here

Position Statement:

How does the Goldacre Review map 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 and mapped its findings to the views of our Members; patients, relatives and carers.  

Read more in our summary, which is available here
Position Statement:

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, including how they use data to deliver benefits for patients:
Say what you do, do what you say and how you will do it.

Read more in our position statement, which is available here
Position Statement:

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. 

Read why this is so important here
Position Statement:

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. Using this data improves health care and treatment, advances medical research and ultimately saves lives and improves outcomes

Read why we think communicating benefits is so important here
Position Statement:

Recognising the use of patient data - The Patient Data Citation

It is important to communicate the message that patient data underpins research, care and epidemic/pandemic

One way to help achieve this is to include our Patient Data Citation on all publications and stories that would not have been possible without access to patient data:

This work uses data provided by patients and collected by the NHS as part of their care and support.

Read more here
What do we mean by Transparency?

We have developed a set of principles about transparency of use of patient data

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.

Read our Transparency Principles here
Position Statement:

Supporting the use of synthetic data to make research more secure, as a key component of Trusted Research
Environments (TREs)

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

Read our position here
Our Call to Action:

A call to action to increase the usage of donated tissue samples for research

A use MY data report which followed our May 2018 workshop, “Your data, your control”, explored how patients, who want to make sure that their consented samples and data are used for medical research, can ensure that this happens.

Read our call to action here

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