Known as the General Practice Data for Planning and Research (GPDPR) service, the system launches on September 1st this year, with the aim of collecting data from GP practices to use for planning and research purposes.
What data will be collected?
Data in primary care is of particular value because it encompasses so many conditions, some of which are treated primarily (or entirely) in primary care settings. This data can be used to more accurately predict the demand for future care provision.
The data, which will be pseudonymised and encrypted before being sent, will consist of symptoms, observations, diagnoses, results, allergies, referrals, immunisations, appointments, sexual health and mental health, as well as the patient’s sex, ethnicity, and the staff who have treated them.
The data that will not be collected includes names, addresses, written notes from doctors, images, any information over 10 years old (old medicines or appointment data), or any data that GPs cannot ordinarily share by law – including IVF treatment or gender reassignment data.
What will the data be used for?
A good example of the need for high-quality, insightful data is in tracking the long-term impact of the Coronavirus pandemic. Using patient data we can learn more about the virus and how it affects people. Linked to this is the area of healthcare inequalities, something which the Covid-19 crisis has highlighted repeatedly. Data can be used to study how people of different ethnic backgrounds access healthcare, and how their outcomes may differ compared to other groups. Finally, this sort of data will allow research and development work to confirm the safety and efficacy of things like vaccines, and investigate benefit/risk ratios.
Can patients opt out?
GP surgeries cannot opt out of the scheme, but patients can, in what is known as a Type 1 opt-out. Patients who do not consent to share their data should submit a form to their practice by 23 June (though this may change and be extended, just as the implementation date was changed from July to September). You can still opt out after this date, but any data collected before the opt out will still be held. Patients can still opt out of the scheme by completing an opt out form(available via the link) or applying on line via the same link: https://digital.nhs.uk/services/national-data-opt-out .