Healthcare, data privacy and the need to DIY

Stuart Lauchlan Profile picture for user slauchlan February 20, 2014
Summary:
As a patient, it would give me considerable confidence to know that appropriate parts of my medical records are accessible by verified NHS personnel, nationwide before they start selling it to commercial organisations without my knowledge or consent.

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Graham Sadd

The whole question of personal records management by organisations, both public and private, is one that I've discussed on many occasions with Graham Sadd, a UK serial entrepreneur who's been pitching a compelling argument around this issue for a number of years now (and who's put his money where his mouth is in the process). 

With the NHS climbdown fresh in mind, I invited Graham to offer up his views on what remains a thorny and troublesome issue for government organizations all round the world in a climate in which data sharing is a priority item on the to do list. 

 

Speaking at The European Information Security Summit 2014 on Personal Data Privacy, it was timely to read on my way to the event of NHS chiefs abandoning the plan for sharing patient data.

It seems obvious to me that the duty to allow individuals to make an informed decision and agree to such a radical change to the accepted confidential and trusted relationship with their GP was a huge PR blunder.

The NHS track record for adequately protecting patient data and also ‘selling’ personal data for research purposes is, according to the Information Commissioner's Office records of breaches, woefully inadequate.

That said, I do recognise that access to anonymised medical records, linked to demographic and geographic data, would positively contribute to medical research and the appropriate distribution of medical facilities. A worthy ambition, but there are better ways of doing it to the benefit of citizens, research organisations and the NHS.

I then spoke to a contact within the NHS who was frustrated at the managerial barriers to deploying technology to address the duplication of effort, continuing reliance on paper records and spending efficiency that he, on the inside, blamed on short term thinking and resistance to change.

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Yes, even after spending £12 billion, many of our medical records are still on paper, stacked in odd rooms and warehouses because ‘the value of the space saved by converting to electronic won’t provide us with a positive ROI in this financial year’. Doh!

My NHS contact’s complaint was that where there has been technology progress within NHS Trusts they are still based upon data silos, and worse, individual hospitals and even specialist departments within a hospital are unable (unwilling?) to share or access relevant data.

I described what we, at PAOGA, want to provide patients, GPs and hospitals to test whether it made sense to him.

  • First, in accordance with the Cabinet Office ID Assurance initiative, citizens can verify their identity. I suggest that it would be useful for all medical staff to do this as well so that both parties know for certain who they are communicating with – and both have an audit trail.
  • Second, in accordance with the Business, Innovation & Science midata initiative, citizens can download a copy of their NHS records. And let’s make it in a readable form for the patient.
  • Third, the patient could add other health related data from verified third parties such as Dietician, Personal Trainer, Private Dentist etc. which could be aggregated with their NHS data to produce a more holistic health record and, with the patient’s permission, shared back with their GP.

Relevant sections of this holistic health record could, of course, also be shared with medical research organisations (if any fees forthcoming then these would be to the benefit of the data subject who may wish to donate them to a particular charity such as the Alzheimer’s Association), and even insurance companies, employers and other appropriate parties. Critical to this is the ability of the individual to preview the data they are about to share.

Delegation is another critical factor. My wife and I would have liked to record and securely store our children’s medical records such as ‘date of MMR’, allergies etc. along with their educational records such as qualifications passed, notification to school of allergies, permission to attend school trips etc.
 We could then transfer this ‘Personal Cloud’ to them, at the appropriate age, to continue to populate as they go through life.

The payback is that, when we get old, we would be able to delegate our ‘Personal Clouds’ to them to manage our health and finances – a digital Power of Attorney with all the records.

This process would not only support patient confidence but would also substantially reduce costs, time and compliance risks for Health service providers. It is critical that we justify the word Trust in NHS Trusts.

I must say that I have been pushing this in articles for years and, if you take the trouble to look at my blog on the PAOGA website, you will see that my message hasn’t changed for 10 years – BUT nothing has been done.

Perhaps management within the NHS Trusts don’t have the understanding, budgets or time to kick this off. Maybe there are NHS suppliers who have made a fortune out of NHS inefficiency and want it to continue.

Perhaps the Government are looking to one of the big US tech companies to provide this for free to compensate for not paying Corporation Tax. Probably not as they will be busy having been called in by The Speaker to advise on Digital Parliament (Pity we don’t have expertise in the UK to advise on such matters).

Well, who knows? Not me.

I just know that, as a patient, it would give me considerable confidence to know that appropriate parts of my medical records are accessible by verified NHS personnel, nationwide before they start selling it to commercial organisations without my knowledge or consent.

And, as a tax payer, I can’t believe it makes any economic sense to continue to defend the inefficiency of a paper based record system of such importance in 2014.
 A report this year from the Policy Exchange estimated that Ministers could save £ billions by 2020 if they adopt plans to switch from paper to digital. Surely there must be some of that £12 billion left.

This is not about technology - it is about politics, both within NHS Trusts’ management and Government.

Graham Sadd is CEO and founder of PAOGA. 

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