Are we far from the maddening Cloud

"We call it data leakage",  said John, who I had met for the first time this evening over dinner at a recently opened, trendy restaurant in Clapham, London.

John was a senior IT person working for a global bank, and heavily involved in keeping its customers fortunes, and secrets, secure.

We had started to discuss my ambition to start a Cloud record system for patients and how it might go badly wrong!

"You see its not so much the quality of encryption, but the fact that in big commerce world, cloud companies outsource, merge, take over and are taken over so you have no idea who might own and handle the servers and your data in the future, and therefore who might be employed to oversee them.

In essence, once a company or institution stores your vital data 'in the cloud', you may lose control and there may be less accountability since you may have no idea who might be looking after it.

Data leakage is a fact of life- "we all have it", he whispered, as our lady companions conversations drifted onto shoes and summer outfits.  "It might be unintentional- for example a database coordinator might inadvertently copy some files onto an open access directory and expose them."

This got me thinking.   Perhaps 5% of the 1000s patients polled in a recent patient survey who had expressed a deep distrust in my proposal to offer them a cloud record might be right after all.

But in the medical world we, or more correctly, our patients and their medical purchasers really suffer from the lack of data sharing. It leads to countless delays and accidents at high cost every day, so the idea of a central cloud record does sound attractive.  If messages and data were encrypted as they were up and downloaded, and also encrypted once stored on the system, what could you go wrong?

As the wine flowed and the food orders were placed, John was convincing in his arguments against using Cloud technology for medical records. The human element means security could be compromised as one company sells on to another and outsources elements to contain costs, "it will never be secure" he concluded.

But John is an IT man, dealing with global banking; perhaps the medical world's needs are different?   Most of the patients I surveyed recently didn't really care about who saw their health records, but agreed about the potentially disastrous consequences awaiting them should their record not be available when being assessed by their Physician.  The same group of people would probably be more concerned about 'data leakage' phenomenon if we were talking about their money and potential theft, but in most cases, we are not.

Cardiologists often DO things to their patients that carries risk of harm, for example an angioplasty.   We are therefore very accustomed to having to explain and justify, ultimately to a court of law (or if it goes badly wrong, a Coroner) why a small risk must be taken by a patient contemplating an invasive intervention or investigation. The risk versus benefit has to be explained and risks accepted in order to proceed and ultimately for the patient to benefit.  In most cases, because of the trust involved, our patients accept the risks without too much prevarication.  This after all is the basis of 'informed consent'. 

So why is dealing with their data loss any different?  This line of argument leads to only one set of conclusions:

  1. Any cloud based, patient-accessible record will have small risks of data loss, and thus if a patient has major concerns about other people getting hold of their health record, and can perceive no advantage to them personally, they should not agree to it.  For this group, the only secure enough system to use is the current one- where their health records are locked within each of their healthcare institutions be it their GP Surgery, specialist clinic or innumerable hospital departments.  
  2. For patients who care less about who might see their health record, particularly those with a chronic medical condition under care of multiple healthcare organisations, a shared cloud health record is to be highly recommended, since it provides the only way in which their various medical teams can look after them properly.
  3. For those 'in between' or with less complex medical needs, a simple electronic mail system such as HealthMail which encrypts each message may be a good compromise, since once they have the data the patient move it off their cloud drive onto their own personal hard drive or USB stick, and thus be in charge of any sharing of their health information. It is easy to see how one coujld move between the last two options - ie start simple and then perhaps move your 'personal collection' onto cloud later in life when it is needed, or alternatively 'downgrade' from cloud store to a personal collection in times of good health.

As my very own wine induced cloud disappated, following a bit more 'clear blue sky' thinking, I have come to the inevitable decision that the by and large trusted medical profession should be the ones to create, promote and offer our patients a flexible system offering all three interchangeable options, along with a straightforward consent process so that each individual patient can decide for themselves whether to opt in, or out, of a cloud record system such as QRx in order to faciliate their care by medical professionals, who desperately need better information to deliver best medical care.

The HasteNings Research project launches in May 2013, and should be a good testing ground for such a system, since it is offering sophisticated arrhthmia screening to over 65 yr olds across Guildford and Waverley. Because it is charity funded and thus operating within a strict budget, our aim is to 'go paperless', and thus use electronic records to maximise efficient communications between GPs, the hospital team and our patients.

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I am a Cardiologist working in Surrey


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