NHS England is preparing to gather the medical histories of over 55 million patients into a database it will share with third parties – a move that could jeopardise already fragile doctor-patient relationships.
Data sharing is a fundamental part of scientific progress. As we have seen with the coronavirus pandemic, sharing data has been critical to rapidly understand the impact of the virus on human health and to develop a vaccine that is effective for our entire population. While data sharing has improved in recent years, several challenges remain. These include standardisation across collection and storage approaches as well as privacy concerns.
Several studies in recent years have shown that most of the public are not willing to share their medical data with commercial industries. In fact, a study published last year found that a quarter of UK participants were not willing to share their health data with their doctors, and almost two-thirds of people in the USA also would not. The high levels of mistrust have emphasised the need for secure regulatory standards and transparency over the uses and sharing of medical data.
Despite numerous studies and researchers calling for transparency, NHS Digital (runs the NHS’s IT systems) has confirmed plans to pool together medical records from every GP-registered patient in England into a single lake. This information will then be available to academic and commercial third parties for research and planning purposes. As an NHS England patient myself, I was completely unaware of this plan. In fact, I have only become aware of it because of my job.
The data from any living patient registered at a GP practice in England and any patient who died after 1st July 2021 will have their data shared from 1st July 2021. NHS Digital will not collect patients’ names or addresses. They will ensure that they pseudonymise all other identifiable information.
NHS Digital will collect the following:
- Data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health.
- Data on sex, ethnicity and sexual orientation
- Data regarding staff who have treated patients
NHS will not collect the following:
- Names and address (except postcode)
- Written notes e.g., detail conversations with doctors and nurses
- Images, letters and documents
- Coded data that is not needed due to its age
- Coded data that GPs are not permitted to share by law e.g., information about gender reassignment
Patient data is critical to help us understand whether the healthcare system is working as a whole for all patients. On the NHS Digital website, they note that this data will help support the planning of services, the development of healthcare policies, public health monitoring and interventions as well as support many different areas of research. These include:
- Researching the long-term impact of coronavirus
- Analysing healthcare inequalities
- Researching and developing treatments for serious illnesses.
Patients have until June 23rd to opt out by filling in a form and sending it to their GP before their historical records will become a permanent and irreversible part of the new database.
The doctor-patient relationship is fragile, but critical to ensure effective healthcare for all. This move by NHS Digital is dangerous. As a scientist, I know the importance of data sharing to aid research and ensure that all populations are represented. But this move is unsettling. Most of the public in their day-to-day lives will not come across this article and therefore cannot truly consent. What’s worse is when people do eventually find out, they will realise the sharing is permanent and irreversible. NHS Digital have failed to adequately communicate with patients and healthcare staff – a few webpages and tweets is not enough! I truly hope that this decision will not make people fear going to the GP and ruin years of work building trust.
Image credit: By adamloewen – canva