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.

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Position Statement and letter to NHS Digital from use MY data

GP Data for Planning and Research (GPDPR)

As a patient-led movement, use MY data supports this proposal. We want to see our data used to improve patient care and outcomes. However, anybody wanting to use our data should focus on explaining the anticipated benefits of doing it, in ways that are understandable and accessible for the public and for patients.

The NHS relies on effective planning and innovative research to develop and deliver its services, and to improve treatments and health results. We urge our NHS to highlight more often how and why this depends on our data, in particular using real-world examples showing how using our health data delivers benefits for all of us


Press release


Download the Statement
Press Release from use MY data Position Statement from use MY data

Letter to NHS Digital
 

Letter to NHS Digital calling for action

(Letter sent to NHS Digital 1st July; chased for response 6th July)

 

Background

On 12 May 2021 NHS Digital, the national organisation which designs, develops and operates the national IT and data services for the NHS in England, announced the introduction of a new service, “which will more efficiently collect primary care data and make it available for better planning of healthcare services and for use in medical research.”

This new service, called General Practice Data for Planning & Research (GPDPR) will begin to collect data from all GP Practices in England into NHS Digital from 1st July 2021.  This extends the use of data beyond the pandemic response, where data was used for purposes such as identifying people who should have priority for vaccinations because of underlying health conditions.

NHS Digital has made the following statement:

“NHS Digitalhasbeenlegallydirectedby the Secretary of State for Health and Social Caretoestablish a new strategicsystem to collect and provide access tonear-real-timedata from GP Practicesfor planning and research purposes.”

“NHS Digital is committed to complete transparency with patients and the public about the collection and use of health data.We will continue to publish detailed information about our data policies, protocols and systems and we will continue to publish details of all data we share via our data release register.”

The following text which describes some anticipated benefits has been extracted from the NHS Digital website:

“As we emerge from the pandemic, but into an era of enormous demand for NHS services, data will continue to be a critical asset in planning services and facilitating research into conditions such as long COVID. Therefore, NHS Digital has been legally directed by the Secretary of State for Health and Social Care to establish a new strategic system to collect and provide access to near-real-time data from GP Practices for planning and research purposes.”  

“The new system will improve efficiency in data collection from GP practices, and significantly increase the speed and efficiency of providing appropriate access to that data, reducing the burden on GPs. Patients can have greater confidence that their data is being used in ways which preserve their confidentiality, as a result of the rigorous, standardised and unified approach to data management and access.” 

The Chief Executive of NHS Digital, Sarah Wilkinson, said:

“General Practice data is particularly rich and valuable because many illnesses are treated predominantly in primary care. We want to ensure that this data is made available for use in planning NHS services and in clinical research, but it is critical that we do this in such a way that patient confidentiality and trust is prioritised and never compromised.”  

NHS Digital website links,

https://digital.nhs.uk/news-and-events/latest-news/improved-collection-of-gp-data-launched

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public 

 

This Position Statement from use MY data describes the areas which we consider to be essential elements of the NHS Digital commitment to transparency.Press release

1. The benefits of uses for research and planning need to be highlighted

As a movement, use MY data wants to see the benefits of using data to improve patient care and outcomes.  There needs to be a much greater focus on explaining the anticipated benefits of the data usage, in ways which are understandable and accessible.  The NHS relies on both effective planning and innovative research to develop and deliver its services, and improve treatments, health results and the service for patients.  This needs to be highlighted much more.

We strongly encourage the use of real-world examples of positive uses, both for planning and research, describing how this has benefitted patients.

 

2. Our principles of transparency should be adopted

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 and obvious for others to see what actions are performed and how. In a nutshell – Say what you do, do what you say.

Our guiding principles for transparency should apply to the GPDPR programme:

Accessible - there needs to be easy access to information about GPDPR which is available through a variety of routes, including online and hard copy through (for instance) GP Practices

Understandable - communications need to use language that the public will understand

Relevant - the information provided must address audience concerns directly and should be updated as new concerns are raised and addressed

Useable - information needs to be in a form that meets the audience needs

Assessable - information must provide sufficient detail, including how to find out more

 

3. A robust communications plan should be undertaken

Clear communications are essential if public trust is to be gained.  This should include being clear about what data is extracted, what data isn’t extracted, the intended uses of this data and the anticipated benefits of this usage.

The plan needs to demonstrate how patients and the public are being made aware of this, including proactive communications which focus on purpose, safeguards, where to find more, and what options people have.  It is not sufficient just to place this on a website and expect people to know that it exists.

There needs to be clarity about what choices patients will have after the collection has started, and what happens to historic data which has already been collected, if the patient chooses to opt-out at a later date.

 

4. Governance, safeguards and reporting

There must be defined management of access to the GPDPR data to ensure that only approved users are able to access the data and it is used to benefit the public.

The approval process, and the role of patients in this process, should be clear and published, as should the results of any application, whether successful or not.

Additionally, the GPDPR data should only be used for approved purposes so that, for instance, it is never used for marketing or insurance purposes and also the NHS or Government must share fairly in any revenues generated.

 

Published: 26 May 2021

 

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