- Posted Monday June 7, 2021
Data is all around us, greater in variety and quantity than ever before. We can’t help but generate huge amounts of it, in almost all aspects of our lives. In the health sector, data underpins many of the future plans for the NHS, for both patients and staff. Transparency around the way in which data is collected, for what purpose, and by whom is always of paramount importance, and is especially important for a new scheme to collect data from GP practices.
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. This will replace the previous scheme, the GPES (General Practice Extraction Service), news that will be welcomed by many. A National Audit Office review of GPES done as far back as 2015 found that the system was costly and inefficient, required significant improvement, and ultimately needed replacing.
The benefits of the new system are said to be that data – which will be pseudonymised and encrypted before being sent - can be collected quicker and more easily, meaning a reduced burden on GPs. Although the scheme has broad support from the BMA and the RCGP, both bodies noted that appropriate safeguards were needed to protect the data and ensure only the minimal amounts necessary were collected and used. Concern was also expressed over the 6-week time scale that GPs were given to get ready for the new service. This has led some GPs to urge colleagues to refuse to hand over data from September 1st in a bid to buy more time for scrutiny of the system.
What should my practice do to prepare?
The advice to surgeries is to update their current privacy notices ahead of the launch in September. On May 12th, a data provision notice was sent out by NHS Digital, requiring practices to register their participation in the scheme.
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 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.
The collection and use of data underpins many of the measures in recent NHS planning documents. The NHS Long Term Plan, for example, notes the importance of the “interoperability of data and systems”, and ensuring that the burden of managing these interactions does not fall on clinicians and patients. The 2018 report The Future of Healthcare also set out best practice and standards for the collection and use of data, noting the priorities of “open standards, secure identity, and interoperability.” For Integrated Care Systems, the challenges are arguably greater still; they must use the power of population-wide data to treat patients closer to home, despite their larger geographic spread.
Checklist – actions to consider
- Update the Practice Privacy Notice with a GPDPR reference before 1st September
- Raise awareness of GPDPR and patient choice to opt-out within the Practice team
- Raise awareness of GPDPR with patients - their choice to opt-out and how to do so
The pandemic has taught us that when we think at a population level, rather than an individual patient level, we can spot trends, use predictive analysis, and keep more people safe and well. But the concerns of many that the system will merely repeat the mistakes of earlier systems, such as Care.data back in 2013, will have to be allayed. This will require a clear and realistic roadmap to our digital and data goals, as well as greater collaboration between all stakeholders.
FPM Group’s Thornfields team provides training and resources to help practice managers and GP surgeries. To access our course on Information Governance and Confidentiality in General Practice follow this link. You can also find more information at the NHS Digital website.