The GPDPR (for those who are not already aware), is a new system that has been set up by NHS Digital for the collection of GP patient data. The purpose of the new system is to replace the General Practice Extraction Service which has been in place for 10 years.
NHS Digital states that the new service will reduce the burden on GP practices, whilst also explaining clearly how data is used. It will also support planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions, and enable research into health-related issues.
Originally, the new system was due to go live on 1 July, but following concerns raised about patient awareness, and difficulties with opting out of the scheme, NHS Digital agreed to delay the start date until 1 September.
The delay was announced on 8 June, but as at the date of writing, it is still not clear how NHS Digital plans to address the concerns raised over the next few months. The NHS Digital webpage was updated on 9 June, and sets out detail about what data is collected, what is shared and how, but is this enough to inform the public of the purposes of the new system?
Whilst the media coverage of the delay will raise awareness, it will not necessarily give individuals the information that they need to make an informed decision about whether to opt out. The BMA and RCGP issued a joint letter to NHS Digital on 27 May suggesting a public information campaign, with national help desks and local champions, but as yet, there is no evidence that this is being considered or planned.
A draft policy paper has been published by the Department of Health and Social Care, but again, whilst it is helpful in terms of future ambition, it does not contain the practical detail of how individuals will be better informed.
Data protection law values transparency highly, because it allows individuals to understand what happens to their information, and gives the ability to take control where appropriate. In order for individuals to make an informed choice about the GPDPR, they need to understand what it is doing and why, and this information needs to come from a trusted source. How NHS Digital approaches the next two months will be key to the success of the project, and the consequences of not being successful could be significant for future medical research.