In Government, as in opposition, Liberal Democrats have been staunch defenders of people’s right to privacy, campaigning against state intrusion into people’s private lives. Our 2010 manifesto included commitments to scrap Identity Cards, block Home Office plans to snoop into people’s email and internet records, and remove innocent people from police DNA databases. In Government, we have delivered: ID cards were stopped, the “snoopers’ charter” revived by Tories at the Home Office was killed off by Nick Clegg, and millions of people’s DNA records have been deleted from Police databases.
People have a fundamental right to expect personal information to be protected, and their privacy respected, and as Liberal Democrats we must be vigilant against any threat to that privacy.
The 2012 Health and Social Care Act established a new organisation, the Health and Social Care Information Centre (HSCIC). The HSCIC will operate a national database of health and care records, ensuring that different organisations involved in providing health care and support for an individual have reliable 24/7 access to the information they need to provide good care.
Only a few months, one of my constituents was admitted to hospital in an emergency over the weekend and because the nurses could not access his GP medical records they administered a drug to which they had an allergy. Mistakes like this can prove fatal. In the modern world it is totally unacceptable that this sort of thing can happen, and the role that the HSCIC can play in eliminating such events is obvious. This HSCIC will have a transformative effect in facilitating better, more joined-up care.
However, the HSCIC will also serve another function – one that, in my view, has the potential to make just as much difference to the quality of medical treatment, care and support that people receive. The data held by the HSCIC will perhaps represent the single most valuable research medical resource in the world. It could have a transformative effect on the pace of research.
Every hour £1.5m is spent on diabetes in the NHS – 80% of which arises from management and treatment of avoidable diabetes-related complications. Using information held by the HSCIC to research the effectiveness of different approaches to managing diabetes could dramatically cut this, and transform people’s lives. The same applies to cancer treatment, heart disease, and countless other conditions. As someone who cares passionately about delivering better health and care services, I am incredibly excited about what can be done using the data available.
However, it became clear in recent weeks that the public did not have confidence that implementation of the Care.Data programme would protect their data from inappropriate use. The programme has now been paused for six months to allow protections to be tightened, making sure that in every respect it meets the high standards that Liberal Democrats should demand.
When the Care Bill returns to Parliament on Monday for its Third Reading, I am therefore pleased that it will incorporate new amendments strengthening transparency and accountability and clarifying that data will not be made available for purely commercial purposes.
We’ve already made the commitment that, if a person objects, then no identifiable data about them will be used as part of this scheme. We are now putting that commitment on a legal footing – to give the absolute assurance that where someone has lodged a concern with their GP practice, then no data about them will flow to the Health and Social Care Information Centre.
Separately, we are strengthening the precautions to bind the HSCIC to comply with the Information Commissioner’s strict code of practice, with rigorous safeguards to make sure that people can’t be identified using “jigsaw re-identification” techniques. And, finally, there will be a new independent assessment of the ethical basis of each request for information for research.
The changes we are making in legislation are only the first part of this process. Over the coming months, NHS England will be considering what steps they can take to ensure people are aware of the their rights under the Care.Data programme, and are given every opportunity to opt out if they wish to do so. I will be monitoring this closely, and will report back. As a Liberal Democrat, I want us to live in a fairer society where people receive the best possible health care across the country, but also where their right to privacy is respected by their government. I will be working hard to ensure that we achieve this.
* Norman Lamb is MP for North Norfolk and was Liberal Democrat Minister of State at the Department of Health until May 2015. He now chairs the Science and Technology Select Committee
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4 Comments
With regard to your constituent’s emergency treatment and “lack” of information (fourth paragraph), the NHS Summary Care Record [SCR] system should have appropriately solved that problem.
The SCR is designed to share precisely those details between health professionals. Your constituent’s problem may have been because he/she had opted out of the system when offered the opportunity, or there was a possible failure at the at the hospital (system down or untrained staff maybe?), or is registered with a GP practice which is not yet fully on board. It might be worth looking into the reasons.
Care.data is a very different, separate system, which is not about direct health carers having access to relevant medical records at all. It is a far more contentious scheme which will disclose private and personal information to unidentified third parties.
My regular Tory vote has been abandoned, probably permanently, because of the unprincipled mess surrounding the current implementation of care.data and what has been exposed.
Like many other now floating voters, I will look with interest at the party line being offered by all of the major parties, but am yet to be convinced by any so far. At the moment I rather wish that our ballot papers had an additional line, “None of the above”, against which I could place my cross, because I still have a strong belief in democracy. Sad to say, writing it on would invalidate my vote.
I’ll be following, with interest, the work that you and your party are pursuing in strengthening the safeguards. There is an awful lot of trust and reassurance which needs to be repaired/rebuilt. I just hope it can be achieved. Until then, I shall remain opted out and feel grateful that we still have the ECHR as a fall back against a government which cannot always be trusted.
Please do your best to restore my confidence.
Well I still haven’t had the leaflet on this which should have gone through every door weeks ago. Despite Norman Lamb’s defence of this latest database I will not be allowing my records , containing very personal conversations with my GP, to be included in it. Norman Lamb gives the game away himself when he doesn’t offer any defence or explanation as to why this is an ‘opt out’ scheme rather than an ‘opt in’ one. Not very Liberal I would say which is why we have always supported the notion that trade unionists should have to opt in to union political funds rather than opt out.
Very pleased by amendments for statutory opt-out and safeguards for how Care.Data is used, Norman.
Over the next few years we’ll undoubtedly see further integration of health data between GP’s and hospital – you describe how HSCIC will move towards a national database of records.
As a doctor I support this – but to preserve patient trust, I’d suggest two principles are clearly outlined for all future changes:
1. If certain patients want to opt-out of future GP records/identifiable coding being uploaded to central databases, they can. The majority won’t care, but there are patients for who it really matters – for reasons personal to them.
2. When significant changes are proposed to how GP data is kept, patients will be informed of their opt-out right (by addressed post, as happened with Summary Care Records.)
This is particularly important when it comes to GP data. Nearly everyone has an NHS GP they see, and they are the gatekeepers to much of the rest of the health service (and some social services). Their data contains all the referrals and medication a patient is on, as well as a wealth of social information.
With some patients, it takes time to build up trust before they disclose sensitive issues to their doctor e.g. abuse or mental health. (I know Care.Data filters STI/abortion data but for obvious reasons of parity in audit/research, we can’t filter out mental health data – and thankfully there’s now a statutory opt-out. But with future integration, ‘free text’ information from records may be shared. Data Protection Act offers processing opt-out for cases of ‘extreme distress’ – but having to prove such distress to a non-clinical authority entails an unnecessary breach of patient privacy.).
My concern is that in future, if there’s ever a well-publicised medical data breach one day (similar to HMRC’s Child Benefit discs), there could be a profound and irreversible negative impact on how open patients are with their doctors. A central database must make an irresistible target. You can’t avoid breaches at any level – but you can empower patients to know they can opt-out of the risk if they wish.
Once a patient tells a doctor something they (rightly or wrongly) feel is sensitive for them, that information can never be removed from the record – it’s irreversible. This is why doctors promise confidentiality to patients (barring disclosure for public safety/legal disclosures. These are caveats I tell my patients about *before* they disclose to me something really sensitive). This is why it is important to establish that patients will have an opt-out for future significant changes to who handles their GP data – otherwise we’d be changing the rules after they’ve told us something really sensitive.
It’s very good to see this opt-out in law for Care.Data. It’s equally important we promise a similar principle now for future integration of private medical data. Once trust is lost, it’s hard to regain.
*******Only a few months, one of my constituents was admitted to hospital in an emergency over the weekend and because the nurses could not access his GP medical records they administered a drug to which they had an allergy. Mistakes like this can prove fatal. In the modern world it is totally unacceptable that this sort of thing can happen, and the role that the HSCIC can play in eliminating such events is obvious. This new database will have a transformative effect in facilitating better, more joined-up care.*****
You do know that the care.data project is nothing AT ALL to do with clinical care of patients? The example you quote is entirely irrelevant to the care.data project
I know that and I’m not an MP and Liberal Democrat Minister of State at the Department of Health.
Might I suggest that the next time you try to engage with the public over a matter of public policy, for which,you as a minister in the relevant department bear some responsibility, that you get your self properly briefed