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.
Citizens' access to their own health data
**Latest update**; 8 March 2023 - the Citizen Access Senior Responsible Officer (SRO) Steering Group has been "stood down"
What our Members called for
in our Call to Action "My Access to My Health Records", use MY data Members called for the need for patients to be able to access their own health records. Whilst some people already have some access to their own GP record, this is not consistently implemented by Practices.
How we brought Member views to the programme to open up access for you to your GP record in England
In England there is a commitment to make access to your own GP record a default position, and use MY data was asked to join a steering group within NHS England (NHSE) – Citizen Access Senior Responsible Officer (SRO) Steering Group. The purpose of the group is to provide advice on the relaunch of the NHS App, which will give (most) patients in England access to their future GP health records.
Two of our Advisory Group Members have been representing use MY data at meetings (we are allowed to send one representative per meeting).
The Steering Group is a closed one and meeting content or any outcome is not made public. Prior to our involvement and after discussions with our Advisory Group, the Secretariat advised NHSE that, as a minimum, use MY data would need to declare our involvement with the Steering Group for transparency, first to our Membership and then on our website. We obtained agreement that our representatives on the Steering Group could provide meeting feedback to the Advisory Group, in confidence.
Our representatives on the Steering Group have continued to push for wider transparency, including requesting that use MY data be allowed to share information about the meeting content with all of its Membership. Following discussions about this with NHSE, there was agreement that the meeting content could be shared with our Membership. However NHSE stipulated that, as part of this, use MY data needed to give assurance of confidentiality in sharing the information. Regrettably, it is not possible to give this assurance, as the weekly update is often forwarded on outside of our Membership.
Another area in which our representatives have pushed for wider transparency relates to the Steering Group’s Terms of Reference (ToR). The ToR were not available prior to meetings beginning. Having received them subsequently and had the opportunity to review, our representatives and the Secretariat met with NHSE to discuss possible amendments to the ToR to reflect that:
NHSE accepted the proposed amendments (on 18 October) and the ToR was updated to reflect this.
We also requested that the name of Steering Group was changed, to reflect that it has the role of an advisory group, or sounding board only, rather than a steering group which is normally empowered to make decisions. We are awaiting a decision on this.
Our representatives have given their advice at each meeting, across many items. This input has been heard and discussed at all meetings - acknowledging that this does not mean decisions were made or changed because of this advice.
Our representatives on the Steering Group are Dave Chuter, Advisory Group Vice Chair and David Snelson, Advisory Group Member. David has recently taken over from John Marsh, Advisory Group member, who represented use MY data on the Steering Group up to 03 October.
Shortly before the planned launch on 01 November concerns were expressed by the British Medical Association (BMA), about the roll out. On the 01 November NHS England responded to these concerns with an update on the NHS Digital website.
Importantly, the update reiterates that “the instructions for GP IT suppliers from NHS Digital, on behalf of the Department of Health and Social Care, to implement the new functionality changes are legally binding”.
The update then gives some leeway for Practices to pause the implementation to “use this time to engage with their local commissioners should they need additional support and agree plans to prepare before their systems are automatically enabled from 30 November 2022”.
In December 2022 we wrote an article for the British Medical Journal to highlight the need to push forward with implementation. This was published in the British Medical Journal in December 2022 as a rapid response to a BMJ Opinion editorial.
February 2023 update
As part of our work to push for transparency about the NHS England’s (NHSE) Citizen Access Senior Responsible Officer (SRO) Steering Group, on which use MY data has a place, use MY data’s representatives/the Secretariat sought permission to share the Terms of Reference with our Membership and then publish them.
Following the delay to the launch of the access and due to a gap in Steering Group activity, the Secretariat contacted NHSE on 09 February to seek clarity on the following:
On 16 February NHSE responded to advise:
This news is disappointing, particularly as it was not discussed with the Steering Group members and use MY data was not proactively informed.
On the topic of patients accessing their own GP record, the British Journal of General Practice has published Putting principles into practice: A qualitative exploration of the views and experiences of primary care staff regarding patients having online access to their electronic health record, with one of the authors Dr Brian McMillan, Centre for Primary Care and Health Services Research, University of Manchester and use MY data Associate Member.
The authors “examine the views and experiences of primary care staff regarding patients having online access to their primary care health record, and how this service could be supported and improved”.
“Most staff agreed with the principle of patient access to online health records but had mixed feelings regarding the potential benefits and drawbacks of applying this in practice…
This underlines the need for additional staff training and support to expand capability and capacity to adapt practice and enhance patient engagement with, and understanding of, their health records.”
The paper was published on 09 February and is available here.
Page last updated: 8 March 2023