Lara Shemtob is an Academic Clinical Fellow in General Practice at Imperial College London.

GPDPR stands for General Practice Data for Planning and Research. This describes a new initiative from NHS Digital to collect data held in GP medical records, and replaces the General Practice Extraction Service (GPES) which has performed a similar function over the last 10 years.1

The difference with GPDPR is that the data extracted by NHS digital will be available to third parties for research and planning. NHS digital will pseudonymise the data, which can be converted back to identifiable information in certain circumstances and where there is valid legal reason. Patients can opt out of NHS Digital collecting their data altogether by completing an opt out form and handing this in at their GP practice before 23 June, or opt out of NHS Digital sharing their personally identifiable data by changing their settings on the NHS app or online. Anybody who opts out after data extraction begins on 1 July will be able to stop further data being collected or shared from the point of opt out.

Data extracted by NHS digital will be available to third parties …. [the data] can be converted back to identifiable information in certain circumstances.

This is not unlike the care.data initiative that was scrapped around 2016, having been criticised for lack of patient awareness around the programme and how to opt out of it. The care.data plan in 2013 was for data from GPES to be pseudonymised and shared with third parties where appropriate for research purposes. The project launch included explanatory leaflets being sent to every household in the country. The chair of the then Health and Social Care Information Centre, running the project said ‘the huge benefits offered by the development of care.data are … clear but can only be delivered in the context of public understanding and trust’.2

GPDPR will serve a similar purpose to care.data. This time around, there seems to have been less of an effort to communicate the plans to patients. The majority of the communication has been published online by NHS Digital where it is searchable and accessible, rather than being sent to patients directly. NHS Digital posted an introductory video on YouTube on 12 May which has had under 1000 views at the time of writing. It is difficult to tell how many patients have engaged with the other explanatory content on the NHS Digital website, which some GP practices have linked to via their websites, or via a poster with a QR code in practices. Digital rights and healthcare data privacy campaign groups have been vocal in their concern about GPDPR, whilst NHS Digital has maintained that the programme is appropriate, has been carried out in consultation with a broad range of stakeholders and upholds rigorous privacy and security standards.

Patients can opt out of NHS Digital collecting their data altogether by completing an opt out form.

The COVID-19 pandemic is a public health emergency that provides a legal basis to allow confidential patient information to be used and shared appropriately. GP data has been used effectively to protect the population- for example by identifying clinically extremely vulnerable patients that needed to shield. We have lost many personal freedoms and rights in the public interest over the past 12 months, and getting back to where we were before will take time and depends on navigating safely out of the COVID-19 pandemic. However, public understanding and trust remains as important as ever in how we use our patients’ data and comes back to a question of ethical principles. It’s difficult to reconcile the transition from current increased data sharing in the public interest to the same degree of data sharing beyond the pandemic by default, without a direct effort to inform each and every patient of this change and how they can opt out.

  1. General Practice Data for Planning and Research (GPDPR) [Internet]. NHS Digital. [cited 2021 May 28]. Available from: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
  2. NHS England » NHS England sets out the next steps of public awareness about care.data [Internet]. [cited 2021 May 28]. Available from: https://www.england.nhs.uk/2013/10/care-data/

 

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