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.
GP Data for Planning and Research (GPDPR)
Our work to bring patient voices to the implementation plans for GPDPRLatest updateWe are continuing to push the critical need for transparency about the GPDPR programme and oversight groups....
Last updated 03 March 2022
Our work to date on the GPDPRWhat 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 background to the GPDPROn 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 GPDPRAs 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 beyondOn 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 didYour 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 DigitalJuly 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:
A summary of the questions and answers. What are the Terms of Reference (ToR) for the panel and when was the panel established?
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?)
Does NHS Digital see the use MY data representative on the panel as a patient representative or organisational representative (or both)?
May we see the previous minutes/notes from panel meetings, and where are they published/will they be published?
What are the arrangements for expenses/honoraria for patient/public members of the panel?
*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.
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 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:
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:
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:
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
For reference: NHS Digital website links, https://digital.nhs.uk/news-and-events/latest-news/improved-collection-of-gp-data-launched
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