care.data – 2. A mother’s journey in Oz: communication & choice

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. My response, part two. Communications & Choice.

1939 – The Wizard of Oz – MGM

Honesty, clarity and real communication, not PR, is fundamental to a renewal of trust across these areas.

The announcement via HSJ today comes, that the HSCIC Chair had concerns over the impact of the care.data leaflet drop, and asked the Department of Health to intervene. One wonders then, who made the decision to go ahead? 

On care.data communications, the Times commentator said HSCIC has probably thought, “Stick out a leaflet, bish, bash, bosh.” The result seems to be more ding, dong. The balloon upped and left before anyone was ready to go  and ICO, GPs, representatives from the BMA and others, including the campaign group, had well founded, and serious concerns.

I spoke with HSCIC communications and managers directly last October, as well as my MP and the Department of Health, to flag how misleading I felt it was for patients to say ‘your name is not extracted’ when it is held at HSCIC already but most of us did not know that. Many of the same leaflet concerns were, much more significantly than by little ol’ me, raised by both GPES advisory group in September and ICO before the launch. So now, despite the £1-2M state funded doormat drop leaflet & cartoon, it’s all up in the air.

(Whilst I know for HSCIC with its own budget of £220M and control of a £1BN annual spend, it may be peanuts, but what a waste of money. At a conservative estimate of £1M for the leaflet drop, at least 50 nurses could have been employed for a year on that. That makes me cross.) We still have no explanation of why so many did not get delivered, what they did when they heard they had not been nor any plans to clarify that. It was our money spent. We deserve to know.

I received a reply to my October letter, from the Secretary of State to assure me that ‘patient identifiable data was not and will not be shared with third parties’. I think with subsequent information coming out about releases, that is at best, may I say, questionable? It has been shown that patient data at individual level has been shared, and we know with researchers for sure. They are not my clinicians, they are not the only third party who may have access. It’s clearly documented by CAG and releases by DAAG from 2013 have just been released in detail for the first time today.

Through the campaign groups’ and ICO intervention that demanded a national communications programme and the subsequent ICO FOI release about the leaflet review and its shortcomings, we go a significant step forwards towards transparency why the leaflet failed to work for patients. It shows that all the issues we found after the event; junk mail vs letter, hard to reach groups, unclear language, missing opt out form, lack of internal communication and the Information Commissioner’s concerns were clearly known but ignored in advance. Why it happened, who made the decision to go ahead anyway and what follow up will be, remains to be seen. With all the past experience and tools at the disposal of NHS England it is stretching my credulity to believe it was simply poorly executed. Let’s not forget, the original plan was to not tell us at all.

We need to stop hearing we need a fix to communications. I’m trying to understand why, with everything at their disposal, they could want or have allowed to let such a thing happen? It was no surprise the leaflet drop was a disaster. HSCIC communications, leaders and now it seems the Department of Health knew clearly. So why go ahead?

The point of the communication should have been to give us fair processing and the leaflet said, ‘you have a choice.’ I have a duty to my children to safeguard their own health, its provision in a safe State health service and to safeguard their autonomy for future. As it stands, it seems an impossibility to choose all three.

Whilst the leaflet nominally gives us a choice, I struggle to see what value it is. It is some, but limited. The only choice we have truly, is before the extraction happens. A GP in Hampshire devised this flow chart to try to help his patients understand it. Anyone can object now and opt in later. But once opted in, there is no get out clause.

If I don’t opt my children out now, they are in for life whether they later want to exercise their Right to be be Forgotton, or not. If I change my mind later and want to opt out (after a media scandal huge breach, for example. Or perhaps my child grows to become a public figure, or contracts a rare condition and we worry about discrimination), it is impossible. Records will just be re-labelled as pseudonymous. Really?

So, if I share their data for secondary purposes by doing nothing, by allowing their data sharing with even health purposed non-NHS intermediaries who sign up to care.data, it feels like I may as well flog it on ebay myself. But although I want to share it, under good governance only for their care and its commissioning, that is impossible.

Surely we should be able to have their health records used only for their care and its direct management, in all forms? Pseudonymous is not anonymous. But we’ve been given a very limited choice. We can only restrict fully ‘identifiable’ data flows according to the leaflet.
The data that HSCIC already holds, is simply given a new label, the HES ID instead of my NHS number, and linked depending on the bespoke request design, I don’t know what else modified, and then exchanged for cash with buyers from commercial health analysts to medical researchers to intermediaries. Amendment to the Care Bill changes nothing, because as long as ‘health purposes’ are served, the customers are deemed acceptable.

What real kind of patient choice is that? Is my hospital data in pseudonymous, potentially re-identifiable form required from all, for all purposes, for all time whether I like it or not? They haven’t given us that choice in the only communication which we were meant to have received (but no one in my area did), the leaflet ‘Better information, means better care‘.

Right now, the only options are to restrict fully identifiable patient confidential data sharing. The leaflet says this means 1) you can restrict a flow between GP and HSCIC of the NHS Number, DOB, Postcode and Ethnicity, and/or 2) flowing out from the HSCIC, for anything other than commissioning to the regional DSCRO (One of 11 Data processing Centres at regional level). The second option also prevents researchers, even with Regulation 5, Section 251 approval, from obtaining red, fully identifiable data.

However, the objection code is not yet operational, so right now, our fully identifiable hospital data may be released without our knowledge or consent. Other data, considered non-personal, diagnoses, GP practice code, other local IDs from our records can still be shared. And according to September meeting minutes, there is no need to respect an objection for pseudonymous data.

To restrict identifiable flow for care.data from the GP record, we need to apply the code 9Nu0 to our record. 9Nu4 restricts the identifiable HES data flow. But NHS number is extracted with anonymous and aggregated data to identify who opts out. Since that must be matched with HES data to find the record we want restricted already at HSCIC, I don’t see how that can  work without landing, matching and being pseudonymised for all of us. I await to be corrected.

We cannot restrict pseudonymous, potentially identifiable data sharing from HES at all. Patients were not told us before HES was extracted, that it would have all these secondary uses, and now they tell us, tough luck? Without fair processing, it’s not even legal. The Health and Social Care Act, the Secretary of State’s direction of Section 251, and waiving the common law of confidentiality all still require us to be informed before the event.

There is no clarity on the options offered in the leaflet or mention of sharing pseudonymous data even if you opt out. That is not choice. The only publicly loud supporters of real choice are campaigners who provided an opt out form, that official channels still have not.

Six weeks into the six month pause, there has been no public communication to give us any clue what is going on to improve the situation, neither by NHS England nor the Secretary of State for Health.  This is not good communication. And knowing that many parents, including friends, have no idea about the initiative I just feel this is wrong.

I’ve written to my MP for the second time. I found in the whirlwind of information and my frustration, that Twitter #caredata and #datasharing offers an informed group of interested individuals. Thank goodness for their support, insights & banter in this tumultuous journey trying to understand what is going on. Until the ‘pause’, HSCIC and NHS England staff would engage and answer questions, too. Now they seem to have gone very quiet.

Like Dorothy, after seeing behind the curtain of how political and state decisions are made and executed, I have been surprised that so much happens ‘about us, without us,’ and will now never be quite as naive. We all deserve the full story, as patients and citizens. According to Jeremy Hunt at frequent presentations, and Tim Kelsey at Strata and other events, we are on the cusp of a brave new world of health data use and its wide ranging impact in our future healthcare provision of personalised medicine. If they expect to use me in that, I want to know how. So right now, there is no way I’m going home, until we know how the story ends.

Now, all this is not very constructive. Not like me at all. But what is past cannot be brushed away without clear answers. That would effectively say, ‘we don’t care we wasted your state money. We don’t care we misled you. We don’t care what you think.’ Get out the broomstick and clear up what went wrong and why. Then we can start fresh and see if together we can find solutions which fit the needs.

We are more than a cohort, and we are not a commodity. We need change.

If we should be Cameron’s ‘willing research patients’, then tell us precisely what that involves. Give me a definition with a limited scope. I support appropriate research use. Aside from the fact that we didn’t know about this either, research approved by CPRD, Thin, QResearch all have a different approach however, from the commercial and apparently limitless dynamic of care.data. It is quite one thing for researchers to access data and contact us for trials. Quite another to find without our knowledge our data may have been exchanged for cash and I want to know it has not been used in research abroad nor with projects with which my ethics may fundamentally disagree.

Data is not just a collection of codes and academic algorithims. It is the detailed knowledge of the inner workings of our mind, bodies and lifestyle which we entrusted to our medical guardians. Of individual people who did not ask nor sign up to become part of Big Data.Treat my children’s data with the respect that it deserves.

No number of animations, leaflets or letters with ‘improved communication’ is going to gloss over the fundamental fixes needed in handling patient data. Show us the flaw and what you have done to fix it. Along the lines of, ‘you said’, ‘we did’. Real communication.

And if you do decide to give us real choice, then make it statutory for life. Choice will only be worth having if we know that what we choose today, does not get transformed into something else tomorrow. It needs more than a magic wand to wave away the issues. Let’s hope the new care.data advisory group, can make it happen.

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