care.data – 1. A mother’s journey in Oz: transparency.

1939 The wizard of Oz MGM

David Aaronovitch’s Times’ article on March 27th stated data privacy fears have made health-data sharing “toxic” and that campaigners are nothing but a ‘man with a megaphone’, like the Wizard of Oz.

Mr. Aaronovitch chose the perfect fairy tale, but like Dorothy, it landed the wrong way round.

It is long overdue that the curtain of secrecy, behind which the mechanics of the Health and Social Care Information Centre has operated, was finally pulled away. Our medical records shared and sold for over 25 years? We had no idea, yet now find out with whom and how it has been used only though the campaigners. 

The group the article described as ‘not speaking for most of us’, MedConfidential, has in fact spoken with support from leading figures across a wide range of professional organisations, including before the Health Select Committee alongside the Chair of the BMA GP Committee on Feb 25th.  They have spoken about patient choice and fair processing, technical security issues and good governance to get the care.data scheme right, and secure a good future foundation on which to build safe & trusted patient data practices.

I should think ‘not most of us’, but in fact all of us, want to get these things right. These things need to be right, in order for the informed public to support the system. Not just come autumn, but for life. Otherwise they risk revolt and more than just this system, will lose support.

Yet six weeks into the six month delay, we see no publicly communicated changes.

The toxic ‘smoke and mirrors’ lack of transparency to date must change, this scheme is too important to hide away and get wrong. This sort of attitude is precisely why it has repeatedly cost the country billions in failed IT programmes over 10 years whether at the MOD, BBC or Department of Health. The NPfIT via the now named HSCIC, continue making the same mistakes at arms-length from the DH and whilst refusing to apologise, projects carry on regardless, wasting money, time, public and professional trust.

Kingsley Manning, Chair of HSCIC said last week, “One of our key measures of success might have been that we were safely below the radar of public attention.” He may as well have said, “Pay no attention to the man behind the curtain!”

He stated an “innocent lack of transparency” has fuelled suspicion that arrangements for organisations’ use of data were “unfairly tipped in favour of profit making”. Perhaps it’s rather the HSCIC 2013-15 Roadmap which gives us fact, not suspicion. By 2015 HSCIC  would ‘agree a plan for addressing the barriers to entry into the market for new commercial ventures’ using our data provided by the HSCIC and:

“Help stimulate the market through dynamic relationships with commercial organisations,
especially those who expect to use its data and outputs to design new information-based services.”

Working with care.data is promised as a sweetener to commercial business, to ‘innovators of all kinds’  including Google for unproven State economic development and gain. Why should any commercial monkeys, even under the wings of ‘healthcare purposes’, carry off a piece of our most intimate personal data without asking our permission, when we go for healthcare at our most vulnerable and trusting?

Thank goodness for the privacy campaigners, the Freedom of Information requestors, the experts and professionals who altruistically take the time and trouble to champion the patient and public interest. Otherwise, we would not have been informed at all of plans.

The rights of fair processing and Data Protection appear to be trampled upon in the rush to implement the increased sharing of pseudonymous data, which is not anonymous yet not protected.

MedConfidential offers a simple method to enable the opt outof identifiable data flows which NHS England did not do. A right to objection was offered by the Secretary of State for Health and would be upheld as, ‘a constitutional rather than legal right.’ The Commissioning Board NHS England’s unclear leaflet wording and no form compared with the SCR opt out makes the intent of the process hard to understand.

We need honesty, clarity and communication, not PR. Transparency is fundamental to a renewal of trust across these areas.

Don’t tell us one thing and say another to business and government. Talk to us without spin. Give us clarity of purpose, choice, good independent governance, defined scope and an ongoing communications plan. Let me understand why you need fully identifiable data and how it will be used by whom and how you will protect pseudonymous, re-identifiable records. Don’t appear to use technicalities to get what you want. Not only must our data protection be legal, but be seen to be legally appropriate. Listen to the informed critics. Ensure ethics champion commercial decision making. Address the risks as well as the benefits and tell us your forward plans. Then perhaps, you will have paved the pathway to properly use our world class data in the world class NHS, for the public good.

Oh, and please get rid of the monkeys.

care.data – Intro. A mother’s journey in Oz.

Mother’s Day seemed as good a day as any, to reflect how I safeguard my children in future, in a cloud-based digital world and currently, on care.data. Ever since I first read last summer about the initiative to be implemented by the Health and Social Care Centre, I have followed as in depth, as much as time has permitted. I began the journey, as an NHS patient who believed my health records were used by my GP at my GP practice. In 2010 I had opted out of the Summary Care Record. I usually read forms to the end and tick the boxes or not, to keep my data confidential.

Along the way, I have been surprised to learn our hospital records were used for anything other than our care and its delivery. I’ve been shocked to see how it has been widely distributed to third parties, in various formats. I’ve come to understand how our health data entered at a whole range of different entry points (Prescription Service, Choose and Book, Mental health and more), end up stored in linkable silos under the umbrella of one organisation. And I’ve learned that the more I know, the more patients like me, should know. So, feeling that this is missing in the current online debate, I’ve decided to share my point-of-view and learnings, from a patient’s point-of-view.

David Aaronovitch’s Times’ opinion article on March 27th stated data privacy fears have made health-data sharing “toxic” and that campaigners are nothing but a ‘man with a megaphone’, like the Wizard of Oz. Whilst he is correct that there is a vocal minority, I believe it is simply because the majority are not able to take the time or had the interest to get to grips with the subject in depth. I have, albeit as an ordinary lay person on the outside.

There has been little opportunity for discussion of our ordinary patient opinion. Yet it is all of our records, ordinary patients, parents and children, which are being handled as a commodity beyond our direct care, without past knowledge or consent. I think a lot about it, and have broken this into parts. Part one: Transparency, Part two: Communications and Choice. Part three looks at the simplest concrete risks the Times article believed, “have made for public disquiet, but when you examine them they behave like candyfloss”.

I’ve followed it for almost eight months now. Its highs and lows still need a brain, heart and courage. By standing up, I risk being labelled ‘selfish’, a consent fetishist, or scaremongering. I don’t believe it is any of those to seek facts, education and engagement.

So here’s my #caredata story so far.

Thinking to some purpose