care.data – what am I worried will happen?

I was invited today on twitter to say what I was worried will happen as a result of the care.data programme. I’ve written about this previously, and some of my concerns are laid out in those posts. But here’s a little list:

  • I am worried that even the most robust and secure data security measures can fail, or be overridden. Patients’ identifiable data could be compromised.
  • I am worried that there is a limit to how much users of the data could be restrained from making secondary, not-beneficial-to-patients, usage of data to which they are given access (Geraint Lewis, NHS Chief Data officer, was asked how, for instance, insurance companies would be prevented from doing this – he pointed to the Information Commissioner’s powers to impose Monetary Penalty Notices to a maximum of £500,000 for suitably serious contraventions of the Data Protection Act 1998. But a penalty for misuse of data will only be a net penalty if it outstrips profit from the usage.)
  • I am worried that some people will avoid seeking medical treatment, particularly for sensitive or serious ailments, if they in turn worry about who might have access to their data.
  • I am, in more general terms, worried about the lack of transparency that has surrounded the programme, and the lack of clear information. I am worried that, if the risks are so low and the benefits so high, why were initial attempts made to sneak this under the public’s radar?
  • I am worried that the amassing of and use of personal data in itself carries risks.
  • I am worried that I am wrong about all this, and that I am attacking a programme which will potentially deliver personal and societal benefits.

But, ultimately, I am not sure it is for me to say specifically what I am worried will happen. I don’t know specifically what will happen with a lot of things I worry about.

Surely it is for the proponents of care.data to say why I should be reassured. And I’m not.

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4 Comments

Filed under care.data, Confidentiality, Data Protection, data sharing, Information Commissioner

4 responses to “care.data – what am I worried will happen?

  1. I’m worried about Insurance companies piecing together my personal data to work out my ailments and what a risk I am to them… and bumping up my premium once we have no option but to get private health insurance after this evil coalition completes the privatisation of the health service.

  2. Nick

    Thanks for writing this, Jon. It’s thoughtful, and helpful. I share some of your concerns, especially about the poor quality of information circulated in support of the care.data programme. It’s as though the people responsible for the project just assume everyone will see what a great idea it is, and be enthusiastic about it, without needing to be convinced. But that’s actually fairly typical for IT projects, so I suppose we shouldn’t be surprised. And I think that goes some way to explaining the whole ‘under the radar’ thing – I think they probably just thought it was so obviously a good thing, that there wasn’t any need to make a big fuss about it.

    Data security isn’t perfect – there are many incidents of identity theft, online fraud and so on, and yet there aren’t many campaigns advocating that we opt-out of the global banking system. Well, apart from bitcoin, I suppose, but that’s a whole other kettle of fish.

    The risks have to be managed, and weighed up against the potential benefits. The problem I have at the moment is that the potential benefits are being ignored, and the risks are being magnified through a whole tranche of lenses focussed on the NSA, fear of the database state and so on, generating a lot of heat but precious little light.

    Insurance companies already have access to our health data – in order to apply for any kind of insurance we have to give permission for them to approach our doctors. We often don’t see the details of their questions, or our doctors’ responses. So the existence of care.data might, conceivably, make this process easier for the insurance companies, but it wouldn’t be new. Also it would require them to first obtain your data through a misleading release request, get that request approved, and then maliciously re-purpose the data. So much easier for them to just use the fact you’ve consented to have them contact your GP anyway.

    The risk of people not seeking treatment is a significant one – but it’s made worse, not better, by a mass campaign of hostility to care.data and indeed databases in general. The idea that people’s healthcare data is “being made public” is the thing most likely to frighten people away from getting treatment, and that’s such an oversimplification of what’s going on.

  3. I worry about too much probably. But I feel there is real cause here. More answers would be good. After all, consent is not supposed to be valid if not informed. Here is what I am worried will happen as a result:

    1) Labelling my children with conditions which they may outgrow or are not 100% certain diagnoses and would be detrimental to be on their record later. I am also concerned that we do not know what the blanket ‘consent means, and I want to know how consent is managed when it is not explicit. MRC does not reassure me here:

    2) My concern is my data with HSCIC in general. I had no idea until read about care.data info last summer. (I dislike strongly that we cannot opt out 100% and data cannot be deleted – bad practice for genuine errors – there should be an acknowledgement and audit process to allow historical deletion of things which matter.) Lack of transparency, honesty, lack of genuine effort to be more than open with the broader public, very selective use of wording ‘name will not be included’ in patient communications, when it’s in PDS – cannot be designed to be anything except misleading to reassure as they know more people would not like that, but name is in HSCIC anyway. Data is shared with third parties and exchanged for money – but even the Health Secretary has told me it is not – ISCG head Dr. Foster with his appt more than debated in Parliament in 2007 for being in their words “too cosy” and not put out to tender; and now this week the just appointed CQC advisor is the other co-Founder Dr.Foster. Senior Conservative just appointed to lead Monitor. BUPA helped design the governance document when Chair (BUPA) was the senior Caldicott Guardian yet they find it odd we would not like the idea that commercial health insurers be involved with NHS records – I think they have become so removed from the rest of society, they don’t realise the majority of people genuinely don’t realise how much of the NHS is sold or run by commercial companies and is no longer “national” but would be political suicide to say so – it is hard to see the public good will ever come above commercial interest, when commercial and vested Conservative interests lead the governance – even if all the people full of integrity, the process seems flawed – and obviously commercial is the accepted norm – we should expect more than this.

    3) When Pharmacies are deregulated (Nov 20th Parliamentary debate) and New Medicine Service outsources more LES to Boots, Lloyds, “Private health companies such as Bupa and Alliance told the general practice magazine Pulse that they were interested in taking on contracts, which must now be opened up to the market under NHS competition rules.” http://www.independent.co.uk/life-style/health-and-families/health-news/health-commissioning-groups-preparing-to-put-certain-medical-services-out-to-tender-9037834.html – this is enabled by the HSCIC open data sharing allowing these commercial services data access.

    a) Which will result in cherry picked LES extra services provided by private high street providers, and fewer GPs offering them all. Which is fine as long as all NHS funded, but inevitably will become partial or full funded, so that results in two tier service. Or hospitals or GPs offer federations of services will mean further to travel and longer wait lists for NHS funded care. The Chair of HSCIC Board Sir Kingsley Manning, then at Tribal Newchurch wrote a fascinating insight into his vision in 2006, “The Inevitable Decline of the General Practitioner”. It’s worth a read.
    b) That pharmacies as a result of that data, may call me to see if my daughter wants to attend the latest asthma tool clinic – how do I know if it would genuinely benefit her – or its a commercial call – and I can’t validate the advice.

    4) Future data ownership: The HSCIC roadmap suggests ownership of all services may not stay with HSCIC, so who owns controls it any my data and governance in future is unclear. Existing example, Dental data processing is now outsourced in part to to Sri Lanka or India, and patients give blanket consent for that with one signature, alongside the IN BOLD statement that I agree to pay statutory charges for my NHS dental care treatment. It also permits various third parties access to the data, NHS BSA, PCTs (now CCGs?), Dept of Work and Pensions, HM Revenue and Customs and Local Authorities. I believe patients should understand what data is shared with those third parties, how often, in what detail and for what purpose(s). These blanket consents are poor.

    5) Consent: Blanket and assumed consent in a flawed process and anyone with half an understanding of what we are signed up to must realize that.

    I would like more clarity what ‘consent’ for research means – David Cameron said in 2011, they would change the NHS Constitution so that the default would be that “everyone would be a willing research patient” or could opt out – but there is no absolute opt out of data at HSCIC, so I cannot know that my data is absolutely never used in research. The 10K genomics project received a £10.5 million funding award from the Wellcome Trust (Peter campaign) in March 2010 and sequencing started in late 2010. Must be very invested in that 4 years later. It includes cohorts of twins and datasets from 1958 and cohorts from all over the world. How do we know that explicit consent is sought and will continue to be so, when data cohorts are so large and from such diverse origins. I want to be certain that consent for research is not being used in these projects and never will be in genome mapping without additional explicit consent. Genomics England indicated to me it would be, so are we or aren’t we opted in by assumed consent to this kind of research – I can’t get a straight answer. In other areas, just to get identifiable data, they find workarounds from all recommendations and governance, for consent not met.

    Again and again 251 is used as a catch all workaround – it doesn’t create trust that the law is being properly employed and that integrity is malleable as long as it gets the needed result.

    “Ordinarily, patients give consent for the use of their identifiable data for their direct care as part of their consent for examination and treatment. In the context of risk stratification, however,
    not all individuals will be offered further services as a result of their data being processed for this purpose; and risk stratification is not necessarily a use of their information that people would expect. For both of these reasons, it is not reasonable to imply that patients have consented to the use of their data for risk stratification. Therefore, the tests for legally valid consent would not be met.”

    This is quoted from document produced by Geraint Lewis Chief Data Officer and Karen Thompson, Information Governance Lead, from October 2013: “Information Governance and Risk Stratification: Advice and Options for CCGs and GPs“ (ref: http://www.england.nhs.uk/wp-content/uploads/2013/06/ig-risk-ccg-gp.pdf)

    The 26th April 2013 Caldicott 2 Review, stated that “from a legal perspective, patient data exists in only two forms patients are either identified or anonymous. But in reality, the situation is more complex there is a ‘grey area’ of data that on its own, does not identify individuals, but could potentially do so if it were to be linked to other information.

    The report said: “The duty to share information can be as important as the duty to protect patient confidentiality”. However, the authors found “a lack of consensus on the need for identifiable data to be used for commissioning purposes”.

    The report said: “(NHS England) suggested that the use of personal confidential data for commissioning purposes would be legitimate because it would form part of a ‘consent deal’ between the NHS and service users.

    “The (Govrnance / Caldicott) review panel does not support such a proposition.There is no evidence that the public is more likely to trust commissioners to handle personal confidential data than other groups of professionals who have learned how to work within the existing law.”

    But HSCIC chooses not to. They have gone ahead anyway for a year, with a model which does not work within the law – except their are abusing the ‘temporary and emergency’ nature of Section 251 to permit it.

    5) Zero transparency on funding – some is commercial, such as AstraZeneca – no indicators on their reports when they use commercial funding, such as the Diabetes Audit which informed the latest GP bundled indicators changes – how can we be confident of public best interest if it has outside funding? And Spend. This is OUR taxpayer money in the DH Informatics budget, yet they refuse to be accountable and transparent (recent FOI refused). That is very poor and against the Parliamentary and Public Body Codes of Conduct. It cannot be Top-down IT at any cost, when we have people waiting and dying after 48 minutes for an ambulance. We don’t need a spreadsheet to tell us that’s poor care – we need more ambulances on the roads. What’s the point of control and quality checks which cannot employ more staff which is what Francis and any NHS worker on the ground will tell you is needed. Control does not mean better care. Better care comes from having the resources to do your job properly and that comes from listening and trusting the voices on the ground, who ahem trained and are professional at what they do. Why does Big Government think they know best? Recent cuts to Kent midwives out of hours – ONE on call for the whole of the county! Mini Blood mobiles – 7/18 at least cut last summer – now chaos as they can’t manage the admin. Times 14 Jan, ‘delays, staff shortages and bureaucratic bungles.’

    I feel so strongly about this I have given up all my free time of the last 4 months to learn and understand what the project is about and i don’t like it at all. I am pro-research and pro-electronic records – but with proper informed and educated participants, with proper consent and good governance of public funds and clear future plans. How can I trust my children’s data to commercial to an organisation which will not be straight when we ask reasonable questions? GPs cannot be expected to know these detailed questions when they are expected to look after our health not swat up on a tech project. So they only know what HSCIC has shared with them, which is more than patients but not complete. No ‘train-the-trainer’ materials – no HSCIC follow up to see if materials and consent model works. I spoke to Age Concern and Mind and a children’s charity – central telephone spokespeople all knew nothing of the project, yet HSCIC says sent info to 350,000 charities. Did they measure its effectiveness?

    Twitter and article statements have been deliberately misleading in my opinion – see: HSJ Mr.Lewis article, “ambulance data” – care.data doesn’t collect any info on ambulances. And community care info *is* collected but not in care.data but through the National Child Measurement Programme and other commissioning data sets. So what was he talking about in that article? It *is* about very specific data sets. COPD, Diabetes, Asthma, Chronic conditions and lifestyle choices.

    My trust is shot, and I want nothing to do with it but we’re not allowed out – we can only ask that all data is pseudonomised, so I don’t know what good that does if I don’t want it used. As someone once said, it’s the Hotel California Clause, “you can check out, but you can never leave.” Since I NEVER gave my permission for my or my child’s data to be stored there, I am cross and frustrated and am doing all I can to raise awareness at least. Mothers up and down the country should be demanding more. Clinical care = identifiable data, non-clinical planning = non identifiable. Everything else should be 100% opt out or choice of research yes, no. What has patient choice come to mean, if it means we can choose whatever we want, as long as it’s what they tell us to choose, whether through poor opt out description and ‘you need do nothing’ in the patient flyer or Peter’s coercion campaign – and transparency just means they can be selective with the Truth?

  4. Pingback: The care.data leaflet campaign – legally necessary? | inforightsandwrongs

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