Dr Ben Goldacre to lead government review into health data
- 9 February 2021
A review, led by Dr Ben Goldacre and launched by the government, will look into how health data for research and analysis can be used efficiently and safely.
It will complement the forthcoming Data Strategy for Health and Social Care which will set the direction for the use of data in a post-pandemic healthcare system.
The data strategy was recommended by health secretary Matt Hancock in his November 2020 “bureaucracy-busting mission” and formed part of leaked plans to overhaul the NHS to improve data access and interoperability.
Dr Goldacre, who has previously spoken at Digital Health Rewired in 2019, has been asked to report his findings in April 2021.
The director of the DataLab at the Nuffield Department of Primary Care Health Sciences, which is part of the University of Oxford, said: “The UK has a phenomenal resource in its raw data, and its people. Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all.
“There is a wealth of expertise around the country, much of it untapped. I’m excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data.”
Questions asked as part of the review will include:
- How do we facilitate access to NHS data by researchers, commissioners, and innovators, while preserving patient privacy?
- What types of technical platforms, trusted research environments, and data flows are the most efficient, and safe, for which common analytic tasks?
- How do we overcome the technical and cultural barriers to achieving this goal, and how can they be rapidly overcome?
- Where (with appropriate sensitivity) have current approaches been successful, and where have they struggled?
Health secretary, Matt Hancock, added: “The pandemic has demonstrated just how important health data is. Ensuring that researchers have secure, transparent and ethical access to health data has the potential to transform health and care and save lives.
“Ben has a wealth of experience in working with health data and I am delighted he has accepted my invitation to undertake this review. I am looking forward to working with Ben and seeing his recommendations over the coming months.”
If you would like to get in touch about the review or share your experience of using health data for research, please contact goldacrereview@dhsc.gov.uk.
We are the hosts of Digital Health Rewired 2021, the must-attend virtual festival celebrating the best of digital health and care, taking place across 15-19 March 2021. Get a flavour of Rewired 2021 from the video below. You can book your place here
9 Comments
i am in complete agreement with Greg’s comments, above. The more they get away with through duplicity, secrecy, deception, and self awarded immunity from data protection law, the more emboldened they become. It has long been clear that the only way to protect oneself from the NHS is to avoid it. Simple, if you can afford private healthcare (at least until they start grabbing private health data as well). Not so simple if you do not have the necessary very considerable financial means.
Greg’s reference to the “healthcare industry” is also apt. The Government are determined to turn the NHS into a giant automated data generating machine, serving their industrial strategy. Patients count for nothing, except as fuel for the machine. Engage with the NHS at your peril!
I think a lot of fuss is made about consent. I am not aware of any population health studies out there where the results are published with patients’ names, e-mail addresses, National Insurance numbers, or any other identifiers.
Do we want patient trust or not? Its not about publishing names, it is about respecting people’s autonomy and wishes. If you do things without people’s knowledge and consent, they aren’t going to trust us. Ergo they won’t seek help, and when they do, they won’t part with more information than they want
Duplicity, secrecy, and deception do not sound like “Research” to me. Patients as “Fuel for a giant data machine” does not sound like anything to do with efforts to figure out ways to detect and treat disease e.g., toxicology. or determine the extent to which some people e.g. women might have a predisposition to develop certain conditions. Is it really true that all the researchers out there are really agents for “The government”?
But this isn’t about “population health data” which is aggregate data, & not traceable to individuals – if small numbers are suppressed.
This is about linked data which – if rich enough (& pointless if not) – will be identifiable.
If you accept that any rich database *will* allow re-identification of individuals, and that if an individual patient agrees to share personal health data he/she will *not* be able to restrict access to the entire record, it becomes a matter of trust.
Unfortunately, talk of the financial value of NHS health data & how to market it doesn’t inspire confidence.. nor does the government’s past record.
If I am not stating the obvious, there is a distinction between research and driving a steamroller over patients’ right to confiidentiality, and to processing of personal data that is lawful, fair and transparent, in order to give researchers unrestricted access to patient level data without the need for consent. The latter is certainly government policy. Insofar as researchers take advantage of this bounty, in disregard of the rights of the data subjects, yes, they are agents of the Government. Ethical researchers seek the consent of the data subjects. I am not objecting to research, I am objecting to unethical, and unlawful, information governance practices in the name of research, or indeed pupulation health management.
Its easy. Consent. Consent. Consent. If they had gone down the road of consent ten years ago, we wouldn’t still be needing to have reviews now. But the healthcare industry just cannot accept that patients should be in charge of their own data.
Of course, research should never be conducted in secret. Participation does not take away anything from the patients. In fact, they are contributing to the greater good of the community.
We must not confuse population research with Clinical Trials. That does not mean that there is no need to explain in detail why the data is being collected and what the researchers are hoping to find out. I think there should be a robust vetting process.
Rather than “Do you consent to data that for example, identifies your gender, age, health condition, etc. and the chances of survival or serious complications that may be associated with these (or more characteristics), we ask, ” Do you agree or disagree that such findings will be of benefit to you and to the wider population. I think most people would say “Yes”.
You need to ask people the question. Just because most people would say ‘yes’, doesn’t give us the right to go ahead and use the data without asking. Its basic good manners, as well as ethics and data protection etc.
There are people who will seek to prevent their data being used, whether by not seeking medical help in the first place, or giving false demographic data to prevent data linkage. Trust in the medical professions isn’t as high as the medical professions believe
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