Patients have huge value as data
Patient confidentiality has always been a fundamental cornerstone of medicine. However, despite efforts to prevent sharing, getting access to your data (patient records) is proving to be too much of a temptation - and so the government is now seeking more ways in which it can get at your medical information. The "UK health data landscape review", has been recently commissioned by Prof Chris Whitty (remember him?).
Is public access to your medical records an official data breach?
Your health data includes data from the NHS including the following:
- patient health records,
- medicine prescribing,
- results from blood or tissue samples
- genetic analysis
- X-ray and MRI images
However, the data being officially sought also includes information relevant to our health from non-NHS organisations, including social care, disability, policies and educational achievements.
Every day, large amounts of health-related data are generated by the NHS and other organisations, providing information on health conditions, maternity and early childhood, causes of death, quality of life and more.
The implications of this review are potentially in directly conflict with patient confidentiality, and providing access to your records gives away a huge amount of tangible value. According to Cyber Policy, "medical information is worth between 10 and 40 times more than your credit card number on the black market".
As previously reported 2 years ago by TotalHealth:
"Unless patients complete and send an opt-out form to their GP practice by the 23rd June 2021 (NB was extended to 1st Sep 2021), they are granting the NHS permission to share their confidential medical records with third parties. The NHS is effectively releasing the responsibility of keeping medical records confidential for patient and surgery use only. Unless we as individual patients proactively opt-out, our data will be made available to other parties. Patient groups are stating that insufficient information around this decision or sufficient notice is being provided by the NHS."
The NHS Digital state that if you do not want your personally identifiable information to be shared outside your practice you have to register to opt-out.
So, where are we now in June 2023?
Trusted Research Environments?
Despite all the concerns about data security and data breaches the commissioners of the review are emphasising that there are various ways in which health data is protected when used for health care planning or research to ensure it is "accessed in safe and secure ways". Personally identifying information can be removed to make records anonymous, strict legal contracts are put in place and robust data security standards are implemented. Data is now often made available only in Trusted Research Environments, highly secure computing environments that provide remote access in a controlled way to approved researchers. Data about individuals is not allowed to leave such environments.
The UK governments' ability to use your health records has been commissioned by the Chief Medical Officer for England and UK Government’s Chief Medical Adviser, Professor Sir Chris Whitty, NHS England’s National Director of Transformation, Dr Timothy Ferris, and the UK’s National Statistician Professor Sir Ian Diamond.
The review, entitled 'Uniting Health Data in the UK', will be led by Professor Cathie Sudlow OBE, Chief Scientist at Health Data Research UK (HDR UK), the national institute for health data science. HDR UK works with the NHS and partners across universities, charities, industry and regulators in bringing the UK’s health data together to make discoveries that improve people’s lives.
Professor Cathie Sudlow said: “This is an exciting time to be involved in health data, but we are still a long way from maximising its potential for benefiting patient care and the public’s health. This review provides an opportunity to chart the course for a new era in health data, mapping existing strengths and identifying ways that our approaches could be improved.”
The review will map and assess the flows of health-relevant data across the four nations of the UK, offering an opportunity for policy makers to evaluate how data can be better managed to improve the public’s health, while maintaining privacy and public trust.
Population-level health data has the potential to transform research and public health, and the UK is in a unique position thanks to the NHS and its cradle-to-grave records for a population of over 65 million people.
This was shown during the COVID-19 pandemic, where rapid, secure and efficient linkage of data from places such as hospitals, general practices and testing laboratories supported policy makers.
The commissioners say, "Understanding how to maintain these positive changes and ensure that there is no reversal in the use of data to improve healthcare is at the core of the review, which is expected to be completed towards the end of 2023". However, commenting on these types of move, the Financial Times have previously warned,
"England’s NHS is preparing to scrape the medical histories of 55m patients, including sensitive information on mental and sexual health, criminal records and abuse, into a database it will share with third parties".
We are told that, "The review will be informed by wide consultation and guided by a panel of leading experts from organisations including NHS England, the Office for National Statistics, the UK Health Security Agency, the Department for Health and Social Care, relevant national organisations in Scotland, Wales and Northern Ireland, and others".
Professor Sir Ian Diamond said, “This is a great time to take stock of where we are, evaluate how our health data systems are set up, and work towards better integration that allows research to continue at pace. All of this has to be done with public interest, trust and transparency at its heart.”
Cathie Sudlow has led large-scale, open-science initiatives for more than 15 years, using population-level data to allow for a better understanding of health and disease. As Director of the British Heart Foundation (BHF) Data Science Centre, she collaborated with the NHS to help establish the first Trusted Research Environment to hold and enable access for research to linked health data for the whole population of England.
Flogging to the highest bidder?
Now is certainly the time to take further stock, but as ever with the value of this data, there is the inevitable question over the real independence of the review from vested interest.
As part of the review process, Professor Sudlow is inviting individuals and organisations to submit their views on current issues in health data including current infrastructure, hurdles and possible solutions using an online form.
People can also get in touch by emailing SudlowReview@HDRUK.ac.uk