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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GP Data for Planning and Research (GPDPR)

Our work to bring patient voices to the implementation plans for GPDPR

Latest update

We are continuing to push the critical need for transparency about the GPDPR programme and oversight groups....
  • We were offered a place by NHS Digital on their GP Data Patient and Public Engagement and Communications Advisory Panel and joined the panel on 28 October 2021
  • Our key focus in joining is to push the critical need for publication of groups and meetings, for greater transparency.  Since July 2021 there has been no further publication about the work
  • Our latest action is to write to the CEO of NHS Digital to highlight our continued and growing concerns about the lack of transparency, with key points including:
    • Highlighting our Members’ continued and growing concerns about the lack of transparency for the development and planning work for the General Practice Data for Planning and Research (GPDPR) programme and to seek a publicly-declared date of publication
    • The lengthy delays and apparent secrecy around the next steps for GPDPR are doing nothing to allay public suspicion about the project and the motives behind it, and indeed may well contribute to enhancing it
    • We find ourselves in a difficult position of being part of a panel of which the public is unaware and about which nothing is published.

Last updated 01 December 2021

 


Our work to date on the GPDPR

The background to the GPDPR

Our position on the GPDPR

How we engaged our Members 

What we asked NHS Digital to do, and what they did

How we are following up with NHS Digital

Summary of actions we asked for, and what's been done

The latest position

 


 

The background to the GPDPR 

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) was to collect data from all GP Practices in England into NHS Digital from 1 July 2021.  It 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 made the following statement:

“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.”

Following feedback on its initial schedule, NHS Digital announced that "to provide more time to speak with patients, doctors, health charities and others, the collection of GP data for Planning and Research in England has been deferred from 1 July to 1 September 2021."

 

use MY data's position on the GPDPR

As a patient-led movement, use MY data supports what GPDPR is trying to achieve. We want to see our data used to improve patient care and outcomes. However, there needs to be much greater communication to patients and the public so that they understand more about benefits, risks and controls, so that they can make an informed choice and opt-out if they wish.  We must ensure that anybody wanting to use our data should focus on explaining these anticipated benefits 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.

To make clear our position on the GPDPR, we drafted a Press Release and a Position Statement, adding these to our website. 

 

How we engaged with our Members and beyond

On 16 June 2021 we hosted an emergency webinar to bring a range of key stakeholders together to discuss the GPDPR.  This included patients, relatives and carers, to seek views from webinar delegates and take these to NHS Digital. 

In this webinar, we explored the circumstances around the proposed GP Data for Planning and Research (GPDPR).  In particular, we wanted to give patients, relatives and carers the opportunity to communicate directly with those in charge of the programme, and with a wider panel with different perspectives.  We wanted a dialogue about the GDPDR, to ensure there is a balanced debate about anticipated benefits versus potential risks.  The webinar was devised by patients to bring a patient voice to the discussions.

We heard about the development of the GPDPR, its aims and ambitions.  We then explored with delegates what needs to be done to make the GPDPR a success, in the interests of patients.

You can watch the webinar recording here.  We also asked delegates for any specific advice for NHS Digital on how to ensure that the GPDPR is a success, which we supplied to NHS Digital.

The webinar identified a set of key actions which formed the basis of our letter to NHS Digital, which went sent to them on 1 Jiuly 2021.

 

 

What we asked NHS Digital to do, and what they did

Your voices were heard - changes were made...!

On 1 July 2021, we wrote to NHS Digital suggesting a series of actions which we said should be undertaken to address concerns and to move the GPDPR programme forward. 

On 19 July 2021 , NHS Digital announced that the GPDPR has been paused.  We received notification by email from NHS Digital, which includes a letter from Jo Churchill, Health Minister for Primary Care and Health Promotion.  You can find the letter here.  The letter outlines four criteria that must be met, before the GPDPR can go ahead.  We have also written to Jo to support this decision.

This was very positive news and showed that the power of the patient voice can be harnessed through positive engagement to bring change. 

 

How we are following up with NHS Digital 

July 2021

On 21 July 2021 we wrote to NHS Digital to thank them for their response and to support their decision and to offer to host a use MY data webinar on the GPDPR in September 2021.  We also highlighted areas where some of our actions still needed to be addressed, shown below. 

September 2021

We received a reply letter from NHS Digital on 21 September 2021 (letter dated 16 September), responding to our original letter of 1 July 2021.  The Secretariat has written back to NHS Digital seeking answers to questions raised in our later letter of 21 July letter, which included a request for details of oversight groups for the GPDPR and patient/public involvement in these.  NHS Digital has indicated a willingness to run a patient-focused webinar with us and we have offered a slot for February next year.

October 2021

On 07 October we received a reply via email from NHS Digital.

“Apologies for the delayed response to your letter on 21st July, but having reviewed that letter and our response to the 1st July letter, we trust that the vast majority of points made have already been addressed apart from the points you rightly call out regarding oversight groups. 

We are in the process of formalising these groups and confirming the formal terms of reference with the intention that they are fully up and running during the next two weeks. There will be two formal groups established to focus on the profession, and patient/public, viewpoints towards the implementation of GP Data for Planning and Research. These groups will be closely aligned and the expectation is they will review the same content each fortnight, however the separation is to ensure that both group’s voices are heard clearly. To ensure transparency, the terms of reference for each group as well as appropriate meeting input/output will be captured and published for full public visibility. Again the publication location is being confirmed and will be included in the terms of reference as they are finalised.

We would like to invite you to attend the patient/public engagement panel to continue to provide your valued input and challenge. The current time for this forum will be Thursdays between 9:30-11am. The next session is currently on Thursday 21st October [since changed to 28 October] and will be fortnightly thereafter. Please could you confirm who would be best to attend this forum, and we will arrange for the invite to be shared as well as a pre-meeting to discuss the planned group dynamics and how we can work together using this forum and in 1-1 sessions going forward.

We would also like to take you up on the offer to use the Webinar slot in February, and we will work with you to confirm the right content and focus for that session over the next few months.”

On 07 October, NHS Digital invited use MY data to “attend the patient/public engagement panel to continue to provide your valued input and challenge”. On 18 October, we met with NHS Digital to discuss the invitation and the panel. Please find below a summary of the discussion and our proposed next steps.

Meeting to discuss the GP Data Patient and Public Engagement and Communications Advisory Panel.

Attending for use MY data:

  • David Snelson, Advisory Group Member
  • Chris Carrigan, Expert Data Adviser
  • Emily Connearn, Events & Website Manager
  • Alison Stone, Coordinator.

A summary of the questions and answers.

What are the Terms of Reference (ToR) for the panel and when was the panel established?

  • NHS Digital sent the ToR for review (the ToR is marked as “not for distribution”).
  • The panel has developed from the GP Data for Planning and Research Editorial Review Panel, which was established in July.

Who are the current (and proposed) members of the panel, and by what route did they (will they) arrive? (i.e. if appointed, by whom and for how long - which may or may not clear from the ToR?)

  • Members are listed within the ToR, with the exception of patient members. This is at the request of the patient members, who asked for their names to be redacted.
  • Members arrived at the Editorial Review Panel by way of invitation, in the crisis stage of the initial reaction to the GPDPR.
  • The panel is a mix of patients and people who work in data. It was described as independent.
  • On the panel at present are Natalie Banner and Nicola Perrin, however they are both leaving the panel. As the current and previous Leads of Understanding Patient Data, they have a wealth of knowledge and a long perspective.
  • One patient is leaving, due to a change in work circumstances, so there is vacancy.
  • There is also a Check and Challenge Panel*, which runs alongside this one.

Does NHS Digital see the use MY data representative on the panel as a patient representative or organisational representative (or both)?

  • NHS Digital attendees were unsure about this, partly because they didn’t fully understand the set-up of use MY data and partly because they see our Members as more informed about data than the ‘average’ patient representative.
  • We explained the set-up of use MY data and that it is the Members. NHS Digital has left it to use MY data, to decide if a Member or Secretariat representative would be best on the panel.

May we see the previous minutes/notes from panel meetings, and where are they published/will they be published?

  • Meeting information – ToR, agenda, high level minutes, meeting papers - will be published, along with an update on the GPDPR programme. There was not a set date for this, but NHS Digital is getting close to publishing.
  • The meetings operate under Chatham House rules, so that attendees can feel free to speak, hence the publication of only high-level minutes.
  • The meetings will be fortnightly.
  • We highlighted that the ongoing lack of transparency and visibility around the GPDPR is damaging. And that it will be difficult to join the panel if the information about the panel is not publicly
    available. NHS Digital said that they hope to publish the information before the Panel meeting on 28 October.
  • Post-meeting NHS Digital said - “We aim to get the new web content published this week and will use that as a platform to build to a position of transparency. As discussed on the call there is a way to go here, but we are keen that we start out from the best possible position, hence the final checks that are taking place”.

What are the arrangements for expenses/honoraria for patient/public members of the panel?

  • Payment for representatives is currently being set up. Payment will be made for meeting time and preparation work outside of meetings. This will probably be on a ‘contractor’ basis.

*Check and Challenge Panel
Information obtained from NHS Digital after the meeting, when asking for membership information for the Check and Challenge Panel.

“The Check & Challenge membership is below and the ToR is out with these members for review ahead of ratification at the first session on the 27th October. The full ToR will be then published on the website and kept updated as required.

  • British Medical Association (BMA)
  • Royal College of General Practitioners (RCGP)
  • Office of the National Data Guardian (NDG)
  • Office for National Statistics (ONS)
  • Information Commissioners Office (ICO)
  • Nuffield Department for Primary Care Health Sciences (PHC)
  • Academy of Medical Royal Colleges (AoMRC)
  • Association of Medical Research Charities (AMRC)
  • National Institute for Health Research (NIHR)

The Patient & Public Panel will be fully aligned with the Check & Challenge group and they will review the same documentation from that point forward albeit with different lenses reflective of the membership and terms for each group. This is reflected in the new ToR issued for the Patient & Public Panel as it re-focusses on this revised purpose.”

Post meeting
The use MY data Advisory Group and Secretariat met on 20 October, and discussed the best way forward. The Advisory Group agreed that use MY data should take up the opportunity to join the group, with our initial focus being on the need for greater transparency. The Advisory Group suggested that the panel place would be best served by a rotating group of two/three Members, which would a) spread the time commitment required and b) ensure different patient perspectives are heard. They would work together as a team and ensure there is handover between them and preparation for the meetings.

We proposed this to NHS Digital. 

On 26 October NHS Digital confirmed that use MY data could have a rotating group of Members on the GP Data Patient and Public Engagement and Communications Advisory Panel.

On 28 October we joined a meeting of the Panel.  Attending for use MY data:

  • Dave Chuter, Vice Chair, Advisory Group
  • Chris Carrigan, Expert Data Adviser.

As noted in our previous update, NHS Digital planned to publish full information about the panel ahead of the 28 October meeting and this did not happen.  At the meeting, Dave and Chris highlighted the critical need for publication in the interests of transparency.  The Secretariat wrote to NHS Digital on 03 November in follow-up, to request the date of publication and again on 09 November, as we had not received a reply.  We also proposed publishing the minutes from the 28 October meeting on use MY data’s website to ensure transparency and asked if NHS Digital would have any objection to that.

NHS Digital has now replied:

  • “To confirm, the publication for information about the panel and GPDPR is going through the approval process”.

In response to the question about publicising the minutes on our website, NHS Digital has requested we do not do this, as it would be without context:

  • “In terms of the minutes, can we ask that you please don’t publish them at this stage? We don’t want to cause confusion by having action notes available before we have the web copy published and we do intend to publish all of the action notes and agendas on that website. We are working to achieve this as soon as possible and as there is nothing time sensitive in the action notes we don’t believe that a short delay affects transparency, in fact publishing alongside relevant contextual information is likely to aid transparency as it gives readers the full picture.”
  • “I agree with the points you raise but would just emphasise that we have prepared content about the panel that includes all the minutes from all meetings since July when the panel first met. The content includes ToR, Literature review, minutes and agenda and so on and are keen that we present the work of the panel as a whole since its inception in July. The panel is hosted/chaired by NHS Digital and we have agreed previously with the panel at earlier meetings that all content will be published together on our website. I think other members of the panel would not expect to see it published elsewhere first as that is not what they have agreed to date. I hope that’s OK – we do all hope to see it published very soon.”

November 2021

A further panel meeting took place on 11 November. Our Advisory Group Member, Dave Chuter, attended to represent use MY data.  The most recent panel meeting was 25 November and our Advisory Group Member David Snelson attended.

On 30 November 2021 we wrote to the CEO of NHS Digital to highlight our continued and growing concerns about the lack of transparency, noting that we find ourselves in a difficult position of being part of a panel of which the public is unaware and about which nothing is published.  We also expressed our view that the lengthy delays and apparent secrecy around the next steps for GPDPR are doing nothing to allay public suspicion about the project and the motives behind it, and indeed may well contribute to enhancing it.

The next meeting of the panel is 09 November 2021, followed by 06 January 2022.

 

Summary grid of actions we asked for, and whats been done

 

The actions that we asked for

What the Government and NHS Digital have said as a result

NHS Digital to provide clearer information on the types of opt out available, and the effect of the different opt outs

NHS Digital have commited to start uploading data "only when there is an ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded." 

"We want to make the position around opt-out much simpler."

"We are introducing three changes to the opt-out system which mean that patients will be able to change their opt-out status at any time"

NHS Digital should publish the numbers and breakdown of Type-1 opt outs

Information on National Data Opt-out (Type 2) numbers are published by NHS Digital and available here - https://digital.nhs.uk/data-and-information/publications/statistical/national-data-opt-out

As yet, there is no information available about the number of Type-1 opt outs.

NHS Digital should extend the go-live date to allow time for the development and rollout of a formal communications strategy

In a letter to all GPs dated 19 July 2021, Parliamentary Under Secretary of State Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September.  The letter is available here.

It states "I can confirm today that, while we are continuing to work on the infrastructure, and communication for the project, we are not setting a specific start date for the collection of data."

NHS Digital have commited to start uploading data "only when patients have been made more aware of the scheme through a campaign of engagement and communication."

 

NHS Digital should confirm that the access to the GPDPR data will be within a Trusted Research Environment. Any exceptions to this should be clearly highlighted, with the reasons published.

NHS Digital have commited to start uploading data only when a Trusted Research Environment has been developed and implemented in NHS Digital.

"The Government has committed that access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed e.g. written consent for a research study."

NHS Digital to enhance the reporting of access requests to include requests which are refused

"We will also ensure that the NHS Digital Data Protection Impact Assessment (DPIA) reflecting these changes to the programme is published well before data collection commences"

"Once the data is collected, it will only be used for the purposes of improving health and care. Patient data is not for sale and will never be for sale."

We have not yet heard how the access-requests will be reviewed or how the decisions will be reported.

NHS Digital to publish, in a more accessible format, the benefits assessment undertaken when access to data is given to a commercial company We have not yet heard how benefit assessments will be reviewed or reported.

We see the communications plan as a critical piece of work.  NHS Digital should publish details about the plan

NHS Digital have said "We are developing a communications strategy delivered through four phases.

  • Listening - where we listen to stakeholders and gather views on how best to communicate with the profession, patients and the public and give them the opportunity to inform the development of the programme in areas such as opt-outs, trusted research environments and other significant areas
  • Consultation - a series of events where we can explain the programme, listen and capture feedback and co-design the information campaign
  • Demonstration - show how feedback is being used to develop the programme and shape communications to the healthcare system and the public
  • Delivery - of an information campaign to inform the healthcare system and the public about changes to how their GP data is used, that utilises the first three phases to ensure the campaign is accessible, has wide reach and is effective"

Whilst this is a good list of aspirations, we have not yet seen a detailed plan for how these aspirations will be delivered.

We believe it is essential to involve patients and the public in the design of the communications and the overall plan, and in its delivery.  We would like NHS Digital to take steps to include the patient voice as an equal in the development and rollout of the communications campaign

In their reply to our letter, NHS Digital say "we are in a position to begin a more proactive communications campaign and to discuss the contents of the letter externally. We look forward to further discussions with yourself and other colleagues."

"We commit to only begin the data collection once the TRE is in place. Further, we will ensure that the BMA, RCGP and the National Data Guardian have oversight of the proposed arrangements and are satisfied with them before data upload begins."

We have not yet heard how patients and the public will be involved.

 

 

For reference: 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 

 

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