Dr Peter Short, Clinical Lead, GP Data at NHS Digital, describes planning & research when it comes to the future with GP data
The coronavirus pandemic has taught us many things across the NHS over the past year, with just one of these being the crucial contribution that patient data use has made, to plan and research life-changing treatments and interventions.
The pandemic saw NHS Digital launch the GP data for pandemic planning and research data extraction, at the request of the profession, to reduce the burden on overloaded GP practices for data requests.
Patient data from general practice, made available by NHS Digital, has been used to support vital research on the cause, effects, treatments and outcomes for patients linked to COVID-19. It was used to create and maintain the shielded patient list to protect those most vulnerable in our society, as well as being available to researchers through NHS DigiTrials to find effective treatments for coronavirus including the Oxford University RECOVERY trials.
Using data responsibly
Looking ahead, it is clearer than ever that the NHS needs to responsibly use the data we collect as we care for patients, to support the effective functioning of the system, ensure safe and sustainable care and evidence the best use of public funds.
Over the past few years, NHS Digital has been working with patients, GP representatives, researchers, and NHS organisations to improve the way in which data is collected from GP practices.
GP Data for Planning and Research (GPDPR) is the replacement for the existing 10-year-old system, providing a new channel for trustworthy, capable and standardised but consistently controlled collection of data for planning and research.
There is a fundamental need for a trustworthy system – from the point of data collection to the final use. Trust that the system will do the right things, be transparent about what happens, and respect and apply the preferences available to patients as data subjects.
This replacement collection is based on evidence of current and planned uses for data through NHS Digital and other routes today. It will use established NHS Digital governance processes to control and administer applications for the data and ‘raise the bar’ on transparency and consistency of information provision about how data is used, and protections are applied.
This is the tricky balance between the responsibility to protect privacy and to benefit health and care widely from controlled use – but is a core and trusted purpose of NHS Digital.
So, GPDPR went live as a direction from the Department of Health and Social Care on 12th May. Data will be collected after 1st July when GP practices accept the mandatory Data Provision Notice on their systems and have provided updated privacy notices for patients.
A challenge for the future
The challenge for the healthcare system, NHS Digital and customers for data, is to work to improve transparency on the benefits and explain how the health and care system uses the data for the urgent priorities, such as the illness, disease and treatments delayed with the COVID-19 pandemic. We will rightly be held to account by the GP profession, patients and their representatives to deliver on the commitments to maintain privacy and be trustworthy and open.
The 2021 ‘Putting Good into Practice’ report includes an up-to-date reminder from patients that ‘Whole Life’ transparency on data use is vital, to equitably distribute benefit, to take care with sensitive data through appropriate safeguards, but also to be ambitious to deliver benefit for the NHS and individual patients.
The implementation of GPDPR is the start of a new and consistent channel for use of data collected in General Practice, but it is only the start of a journey. It has the potential to transform the health and care planning and research capability in a way that improves protections for data subjects. It will take time to transition existing collections and retire legacy collections. It will be the subject of necessary and high- profile scrutiny from the public, professions and data customers alike, as it becomes established and progressively evolves.
The trustworthy and careful use of our personal and confidential data MUST primarily benefit us as users of the NHS, our families and future generations. Data saves lives – when used with care and respect.
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