Tag Archives: datasharing

care.data – Riding the Change Curve

I’ve been inspired by many people this week.

Shakespeare who is long dead. Another, less famous, we celebrated at her funeral after only a few weeks of living with diagnosed endocrine cancer. She would have turned 76 this week.

The change curve

How do we deal with change?

Anyone familiar with the theory of grief, or more happily (as I am from my previous professional life) the similar theory for managing change, knows the stages along the curve we need to go through, to reach a new status quo after a process of adjustment.

After the initial shock and denial, there may be anger, frustration and fear before any acceptance or new optimism is possible.

Individuals follow the curve at their own pace. Some may not go through each stage. Others may simply be too upset, disagree early, give up with or repel the change, and never reach a comfortable position or commitment to a new status quo.

Whether it is grief or a business change, the natural initial response is emotional, and starts with loss. Loss of a person, of position, of something we cannot control. It can take a great deal of support, time and good communication to go through the journey.

(And yes, there’s a comms lesson for care.data in here.)

Before we begin on a change we need to understand the point from where we are starting. And crucially, to understand that Change is about people, not technology or business process.

The change curve starts with shock

From many people’s perspective, the concept of care.data, has been a shock.

For those working on the project, or at NHS England, that is probably hard to understand. ‘Why on earth all the fuss?’, they may ask. It’s easier to understand, if you realise the majority of the public had no idea at all, our health data was used for anything other than our direct care and some planning. Much less may have been winging its way on the cloud across the Atlantic. It feels like data theft.

It’s easy for those in a technology project to see ‘coded’ health records simply as data.

‘Coded’ is however like saying we speak the ‘French language’. Computers ‘only speak’ code, so telling the public it is coded is either trying naively to make it sound safer than as if ‘plain language’ was sent from the GP system to the central system, or it is misleading.

In the same way, if you say ‘opt out’ the system records  ‘9Nu4’ on your record. In addition, there will be a label to go with it, so if GPs run a report to find everyone who has opted out, they can. It’s not hard to understand that MOTDOB is mother’s date of birth. There is a full public dictionary of these codes.

NHS England and the project team, should also not forget that this is not just ‘data’.

To us, this is our irrevocable health and social imprint. Signposts to who we are, have been and perhaps, will be.

It’s personal and private. And as yet, we may have only shared those facts with our GP. Only our GP and not yet our partners, or parents. And then we find out global Health Intelligence companies might have our sexuality or pregnancy history, conditions we may not have told anyone but the GP. Data intermediaries may have complete picture of prescribed medicines, drawing on information from 100,000 suppliers, and on insights from billions of annual healthcare transactions. “mountains of data from pharmacies, insurance claims, medical records, partners and other sources, 17 petabytes of data spread across 5,000 databases.” We want data used by the right people for the right reasons, and know where it goes and why.

HSCIC is giving it away almost for free.

To them it may be only data. To us it’s intimate.

But for the three of us in this marriage, it’s information which has been used and shared with these third parties, and as far as we can see, only one of us really benefits from the deal. Identifiable or not, is only part of the story. It’s our biography we did not give you permission to read or tell.

The initial shock, fears, anxiety and general disgust that our personal details are sold (sorry) given away on a cost recovery basis charging to cover processing and delivering the service, should therefore be more understandable if you realise it was a complete surprise.

(The surprise may or may not be quite as great as the exploding whale posted via Wired at the end of this post. Go on, you know you want to.)

Change is the only constant. How can we progress?

The Change Curve based on the Kübler-Ross Grief model

 

So, what happens now? How can the public move forward, to get to a position of trust and acceptance, that this is what is already happening with our hospital data (HES), and planned to happen with the majority of our GP stored data in future (whether we like the idea or not)?

In order to move us along the curve, NHS England have a large task ahead. In fact, a series of tasks ahead, which are not going to happen overnight. How are change and communications working together?

As there’s no detailed ‘care.data progress’ public communications easy to see on the top level of NHS websites I can only see other info as it comes out through online search alerts. And since it’s my, my children’s and all of us as citizens, whose data that is being discussed here, I think we should be interested and want to find out and question the ongoing status. The GP FAQs have gone or are hard to find, and the patient FAQs are still inaccurate IMO. This page should be top level leading, not six unsearchable clicks down.

From the latest update in the care.data advisory group meeting notes, with much more concrete progress to see, it is good to see that communications features often, and note ‘a comprehensive engagement plan is already underway.’

That plan will be interesting to see mapped out as time goes on, but I do wonder whether it is the right time to be looking at engagement, when so much for the care.data programme remains to be clarified or is undecided?

Questions remain how less raw data can be given away, further legislation, the ‘one strike and out’  how to deal with data breaches, views on enabling small and medium enterprises (SMEs) data access, GP staff opt out understanding, public op out understanding, clarifying the narrative of risks and safeguards. Some steps to be reviewed not until ‘over the summer’. And that’s only a summary of a summary, I am sure only a glimpse of the foam on the top of the wave of what is being done under the surface.

An engagement plan can’t have gaps. Communications is not one-way, that’s PR. So we can only hope there is a real engagement underway of listening which will result in action, but not in ‘transmit mode’. Engagement needs to be concrete to work from day one. We don’t need a sticky plaster and pat on the head, we need fixes and facts to back them up.

Communications and Change

Why can comms not start now and be added to as we go along, you may ask? Whilst it can, and indeed most communications plans need some flexibility, a good Communications Plan needs to ride leashed tightly to the Change Management Plan.  And given that different individuals are each somewhere different on the change curve, at any given point in time, you need to be able to address questions that any of them may have, simultaneously, regardless of whether they have just heard the news, or are almost finished their change journey. For GPs, their staff, other medical professionals, citizens and patients.

Riding the wave of the change curve, some are nearly back on the beach, when others haven’t yet entered the water. Some have got out and will not be persuaded back. Others may.

Therefore until many of the open issues are resolved, until governance and legislation is clear, unless it is focused on listening and resulting action, most communications can only be wasted PR rhetoric. Perhaps there are great plans. But Houston, we don’t have a communications problem. Honestly. As far as I can see.

There is no communications issue, there are issues which need communication.

Why? Because folks who opted out already will not be sold on the benefits. They will only be convinced by a clear picture of known and well governed, legislated, mitigated risks AND benefits. Then they can weigh up a decision. (Assuming indeed, the Secretary of State is a man of his word and maintains the patients’ right to object, which is not a legislative right.)

“The law is a statutory enactment which requires the disclosure of the data, which means the data becomes exempt from the main parts of the DPA.” (ICO)

For the population not reached yet, however, there is a requirement to at least give fair processing, even if you can debate the fineries, all common sense says make the same mistake twice, and you’re sunk.

The trickiest part in the communications, is to address different segments of the population who are at different points in the curve, at the same time. Some of whom are hard to reach.

I am sure there are many people working behind the scenes to bring about this managed change. Let’s not forget, this programme was intended first to launch a year ago. Professionals are working on this, it’s not new. But Dear God, please don’t launch more communications along the same lines as before. September saw GP materials go out with no training and no measure of how well practices had understood the materials. A misleading poster and misdelivered leaflet for patients created more confusion. Which all went out before proper governance, legislation and technical solutions were in place to make it all work well. The advisory group minutes and Mr.Kelsey’s letter indicate there is much work to be done in these areas still. Yet engagement activities are planned May-July.

To look at basics, I think these three things for starters, need resolved before you can talk about risk mediation:

1. a) Purposes of what data is taken and b) who accesses data:  the care.data addendum which sought wider purposes and third party access by think-tanks and information intermediaries is still to resurface, after being returned by the GPES IAG in February for amendment. Which means final data users remain somewhat undefined. And we’re still pending the complete audit of past and current data recipients through the audit overseen by Sir Nick Partridge. [NB: since done in June < see post]

2. Amber is not Green – data protection: Why is potentially identifiable data and what really quite clearly, will be identifiable when so many companies sole purpose is to take a wide range of data sources and mash them together,  given no data protection in law and no clear choice over its use in HES release?

It may for release from HSCIC be treated more carefully than green data only in so far as it is not publicly published on a website,and goes to committee review, but it may be provided to a wide range of commercial companies who then create information from it which they release.

The raw data’s nature can be sensitive to us and it’s certainly personal, so that we would expect it to be kept confidential, and yet it is  shared and may be combined with recipient’s other data sets are at individual patient level?  It feels like a great big whale in the room – it’s not green, we can’t protect it, but if we close our eyes it might go away.

It’s not conducive to trust, when it feels like a con. Just call me Ishmael.

3. Individual data control – opt out and rights: Point 2 leads to a huge potential iceberg ahead which still needs resolved. The UK and upcoming new EU protection laws and their, the ICO and the HSCIC definition of anonymous and pseudonymous data. We must understand how they are to apply and are not only legal, but feel just and fair to us as citizens. It should be looking ahead to meet the coming law now, shaping not avoiding best practices.

What rights does the individual have? How will GPs resolve their conflict of protecting patient confidentiality and complying with the new law requiring them to release it? Some GPs don’t think it’s a good idea.

There will be some citizens who want no data stored centrally at all and even want their HES back out. What will they say to someone who point blank does not want any of their medical record outside their practitioners’ control?

So, are we about to see a repeat of the same communications catastrophe – launching engagement, before we know what exactly what it is we’re talking about? Surely not. But looking at the calendar…

As an outsider, I just wonder how can effective engagement begin, when questions may be asked which cannot be answered?

Workshops to separate truth from myth, risk going down as well as Ahab in Melville’s story, if you have people who are upset, and you have nothing to offer them but unsupported ‘reassurance’. I’d like to see a webpage or presentation of those myths, because I don’t feel I’ve seen many myself. If anything, issues have been debunked by careful wording rather than straight talking.

Change and Trust

Change can’t be done to us without huge resistance. Change has to happen with us, if we are to trust and adopt it. If collectively we get stuck in anger and fear, we’ll not get to acceptance. And it actually has the potential, suggested Ben Goldacre, if not already done, to leave a negative wake on wider research & society.

There has to be trust in the change, that it is for widely acknowledged ‘right’ reasons.

There has to be trust that the terms of the change are defined and stable. Words such as currently, and initially, have little place in the definition of future agreements.

There has to be trust that what we will lose, is in proportion and outweighed by what we’ll gain from the new.

When we read global stories of how healthcare data is misused, and we can’t see who has access to our own data on any real-time rolling basis, it leaves open the fear that data can be given inappropriately, without check and balance, for months. The recently released register is one good thing to come from the debacle so far, and the further audits are ongoing, expected towards mid-May, but any future register is only going to be publicly accurate 4 times a year. It’s better than nothing, but surely not hard to update in real time.

Until the history is entirely transparent, it is a challenge to see how concerns about past use and lack of past governance, and the lack of trust those errors created will be possible to fix. The sensitivity of our raw data is likely only to increase as scope is broadened in future, and the scale of the requests is expected to increase as the era of Health Intelligence takes off and becomes ever more profitable for those third parties. 

Trust will need to increase if anything proportionately, as this scale and sensitivity increases. So any communications of future releases and their governance needs to be sustained. It’s not an afterthought of ‘what we’ve done’. It’s the key to being allowed to carry on doing it.

Change Managers need to understand an individual’s own story, values and what makes them tick, to have an expectation of what the change impact (possibly negative) will be for individuals or groups and what’s in it for them (the positive) and any wider impacts, for example considering the Public Interest. And all leaders, need to have available from the start, the information which will answer the questions for people in each of these groups, at every stage of the curve.

Decisions in the public interest, may be subjective. Jeremy Hunt has said that we,

will “get through” the heated public debate this scheme has caused regarding patient privacy and the potential for the data to be re-identified.”

I’d like to hope we get more than ‘through it.’

To say that, underestimates the task ahead.

It’s not a tunnel or a final destination, but a process.

And the longer the data is shared over our lifetimes, the more likely it will be re-identified with all the other passive and other Big Data which is shared in our future. So there’s no patch, pop up and coast to the beach. I can only think this is a one time chance, and the leadership comments seem to underestimate it.

It must be done correctly now, to set up a framework which will be robust enough for the future size and complexity of the future Big Data vision.

Legislation to build a solid Future foundation

There are still many unknowns it reads from the meetings, from opt out, to wide ranging governance issues, to securing watertight legislation.  The scale and sensitivity of the data and how it has been handled in the past, shows how the current model is not fit for purpose.

This week there is still crucial legislation being considered which will help to fundamentally cement or fail public trust.

Trust not only in how our data will be governed, but in common sense in our governing bodies. The legislation addresses:

  • Retaining control and management of confidential information
  • Putting the independent Information Governance Oversight panel on a statutory footing
  • Independent oversight over certain directions  and the accreditation scheme
etaining control and management of confidential information – See more at: http://www.allysonpollock.com/?p=1820#sthash.No8G7kcT.dpuf
retaining control and management of confidential information – See more at: http://www.allysonpollock.com/?p=1820#sthash.No8G7kcT.dpuf

I’m no legal beagle, but it appears to make excellent sense and the detailed wording (via Prof. Alison Pollock’s page)  is very straightforward.

I hope it is clear that patient choice and public interest complement one another in these proposals. Just as Dr. Mark Taylor, Chair of CAG, outlined in an excellent essay,

“the current law of data protection, with its opposed concepts of ‘privacy’ and ‘public interest’, does not do enough to recognise the dependencies or promote the synergies between these concepts.”

If the Lords support Life Sciences’ interests, as many in the chamber do, they will need to support the proposals in order to ensure the public remain opted in to care.data.

Without these governance amendments, many more will opt out I am certain from talking to people on the street, and the value of the population-wide database will be undermined. So, the theory on paper next week, will have a crucial role in the practical outcome of the care.data implementation and its lifetime value.

No one said, change is easy

Importantly, in any theory one does well to remember the practical reality. Each response is unique to an individual. No one model will fit all. Each person commences the journey of a changing situation, from a different starting point. We each begin the process from a different level of baseline knowledge. We each have our own ways of dealing with loss, and experience different levels of anger or fear. There are early and late adopters.

Some things are difficult, but have to be gone through. For me, Tuesday was a day of looking back at wonderful memories.

We also sometimes need to accept what cannot be changed. When the time comes, I support the idea that we can live with a disease and dignity, not just the label that we are ‘dying’.

My final inspiration of the week, Kate Granger articulated this, so much better than I could, last week:

“I cannot imagine a human society free from cancer, no matter how much money we invest. As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.”

 

care.data requires courage from all the parties involved, because everyone is going through a certain process of change and compromise. Even those who planned the now delayed launch, need to recognise a need for change and why we’ve got to put a solid, not rushed foundation in now, and be in it for the long haul to get it right.

With lasting legislative powers, we public can better entrust our faith and data to the system, not just today, but into the future. With a proper independent Governance and oversight process we can hand you our trust for safekeeping with our records in good faith. We can only trust these proposed changes make not just waves, but make real progress.

If nothing really substantial changes in the pause, and we don’t see increased measures to create trust, all that will happen is a build up of frustration and pressure of all the people who can’t move forward from the initial anger and confusion. They will opt out. And there’s a risk public opinion will burst under pressure. No one will want to support health record sharing for any purposes, even bona fide good research, and there will be an explosion of opt outs. Projects will be abandoned, like a dead, washed up whale. (Which you really don’t want to happen. Really. It’s not pretty viewing, don’t say I didn’t warn you. But it’s kind of fascinating too and all the number crunching too.)

This can be avoided.

But plus ça change, plus c’est la même chose. Two months into the pause, are we seeing changes taking effect, or more of the same talk?

I look forward to better information on how and where our data has gone in the past. I think only after that will it be possible to get the history aired and resolved for improved future procedures once we have the complete audit picture, including that under Sir Nicholas Partridge, due towards the end of this month.

The further governance and independent oversight issues will be best resolved in legislation, which would help them be free of political change and create a framework worthy of the big data vision for the future.

In Summary

I hope the Change Management is as carefully thought out as communications and engagement is based on substantive steps before it.

These steps simply, start with:

1. a) Tighten and define clearly the purposes of what data is taken and b) who accesses data. Now and for future change.

2. Amber is not Green – data protection: Tighten what is potentially identifiable data and what really quite clearly, will be identifiable when so many companies sole purpose is to take a wide range of data sources and mash them together.

3. Individual data control – opt out, and legal rights. Will opt out get a statutory footing rather than Mr.Hunt’s word? Will we design now, for change in the UK and upcoming new EU protection laws?

Tighten the processes, define more of the facts, so you know what you’re communicating.  Let people ask questions, and let us have sufficient time to go through the curve.

A rushed rollout, will create more people who block the change, opt out, and never return.

I realise much of this post addresses how I feel, and the feelings I have picked up from care.data events, from others discussing it on the street and school playground. Emotions have a role to play in this discussion, but better facts will go a long way to making objective informed decisions. And crucially, our decision making must be allowed to be objective and free from emotional coercion.

I’m cautiously optimistic and look forward to seeing public materials to get the GP profession and public on board and riding the care.data change curve each at their own pace. There is clearly a tonne of work to be done. It’s not going to be glassy, by any stretch of the imagination, but perhaps we need a few rough times to remind us what matters most to us, and why.

It makes us engage.

The question is, in the coming weeks and months, is NHS England prepared for genuine change and engagement with the public, not just PR?

care.data – the 4th circle

commedia“Will it become a productive process putting patients’ choice and empowerment first, or is it all talk, hurling stones at one another, going round in circles and building nothing?”

Since The Lords voted to reject proposed amendments last week, to legislation which would have emphasised patient empowerment in the programme and shored up trust, I feel a little in limbo.

As patients of the NHS in recent times, we have been bombarded with the language of patient choice, personalised care and patient empowerment. Putting patients first.

But what power or choice do we patients really have in the use of our health data?

It seems that increasingly media articles, meeting minutes and speeches talk of power and patient empowerment, but it feels like in reality we have less and less.

So too we hear repeated how ‘powerful’ our health data is. How the power of data and its management is used, how the concomitant language is used, misused and shared with others, influences decision making around the subject and our patient rights.

All things are subject to interpretation. Whichever interpretation prevails at a given time is a function of power and not of truth. – Friedrich Nietzsche

As a Germanist at university, interpreting Nietzsche was both a cause for celebration and a cause of much gnashing of teeth. Having also studied Italian, I’m mixing my Dante in there, apologies.

The gnashing of teeth, biblical in origin, was reserved by Dante for the fourth circle of Hell, in his most famous work of his trilogy, the Divine Comedy. The fourth circle was the realm of money. It contained two opposite groups, the avaricious and the squanderers. The bridge builders and the destroyers.

Both the hoarders and the wasters are obsessed with development, either promoting it, or stopping it at all costs. And their punishment is to go round in circles, labouring against each other with heavy rocks, from opposing sides for eternity.

My background is in making technology functional for users to make their work easier. Systems only work which  have a proven benefit for the stakeholders. Introducing new systems is not about technology, but about people. If people don’t want to use your system, you can’t make them. They will find a workaround or data quality will be so poor as to make it worthless. Any project with opposing sides, will have some degree of argument and failure for one or more parties. It’s not what working together, should be about.

When I heard the Lords debate, two things struck me.

The first, whilst different arguments were debated they were really not opposed to one another, but trying to find the best way of achieving the project aims. The vast majority were common sensed and aligned. Wellcome and the AMRC support the legislative shoring up of trust. The biggest difference was that citizens’ trust and empowerment were supported better by the amendments, yet the vote went the other way.

The second thing which struck me, was how the language used can sway what we believe. We only believe what we want to believe, after all.

Labelling data as anonymous or de-identified when what is meant is pseudonymous, and mixing in ‘Open Data’ when ‘shared data’, is meant, is not the same thing at all. And it’s very misleading.

The Lords ‘ping pong’ last week again misrepresented, I feel, the weight that anonymous data sharing should have in the debate.

Earl Howe said;

“I stress this point in particular, as I understand that it has been the subject of some confusion. There is already a strong legal framework protecting the confidential and identifiable data held in people’s health and care records, not just the information held by the HSCIC but more generally. The Data Protection Act, which implements the EU data protection directive into UK law, provides powerful protection of information about living individuals. To summarise what is a lengthy and complex provision, it requires all such data to be anonymised except where there is good reason to the contrary. It remains the case that the Data Protection Act continues to offer strong protection of personal data…”

The fact he wants to make such efforts to ‘stress this point in particular’ does not fill me with faith in the system. In fact, I’ll be honest, I feel that on this point he was factually misleading.

Firstly, in terms of extraction.

The default position is to extract fully identifiable and personal data unless individuals object. PCD will leave the practice for all patients, where there is a legal basis i.e. under the HSCA 2012 or Section 251 approval.

So for Earl Howe to focus on anonymous use, detracts from the fact that it is not anonymous upon extraction at all and may be used and is used with identifiers, far more widely than patients might expect once processed. And will be by default, unless people activley opt out.

Misuse and inappropriate levels of risk exposure are made less transparent by the wording of what type of data it is.

Time and time again, even in the Lords last week, I am frustrated to hear inappropriate use of terminology which perpetuates misunderstanding.

We need to be very clear what  differences there are between data sharing and Open Data. Professor Sir Nigel Shadbolt addressed these differences and the release of Open Data at this conference on March 20th 2014. He importantly makes the distinction that the reusable open-to-use-by-anyone data of Open Data definition, is separate from most uses of personal data, even in the current ‘grab’ going on. [his words]

The Open Data movement is not trying to liberate and put out all our personal data.  He sees personal data, fully and properly anonymised, with consent,  will play a role. But we need to understand different ways of handling the different types of data.

Governmental legal guidance in 2010 did not have the interpretation we have been given today of amber, pseudonymous data. In this file you’ll see it’s personal (red) or it’s not (therefore fully anonymous). But it is clearly noted that anything which is not fully anonymous, i.e. what may identify individuals (what HSCIC labels Amber), should be treated no differently from red data.

“If the data to be shared is fully anonymised, then it will be less likely for problems should arise, though consideration still has to be given to the principles in the Data Protection Act 1998 (DPA). If the data required for statistical purposes contains information which may identify individuals (personal data), then the sharing should be approached in the same way as for any other circumstances, as explained in this guidance.”

I have no idea by whom and for whom it was written, but they state they consulted ICO.

We need to be clear, this is important both for public and parliamentary perception to make informed choices and inform the parliamentary care.data and wider data sharing debate.

In Parliament yesterday, Chi Onwurah MP (14 May 2014 : Column 848) said with regard to the Apprenticeships, Skills, Children and Learning Act 2009 – my bold:

It is therefore deeply troubling that the Government have tabled a last-minute new clause to the Bill to authorise data sharing among the Department for Business, Innovation and Skills, Her Majesty’s Revenue and Customs and persons providing services to them when it comes to apprenticeships. This may be both necessary and useful—the actual data to be shared may be entirely harmless—but it should be done transparently, with the right safeguards and accountability in place, and it should be done as part of a coherent strategy. This is clearly not the case here. The “person providing services” could be anyone, from individual consultants to big multinational companies.

We therefore tabled amendment (a) to ask what information was being shared, with whom, by what process, with what accountability, and how it fitted into the Government’s data sharing strategy. If the Minister can answer all those questions, perhaps the amendment will prove superfluous. If not, why not?

Doesn’t it sound rather familiar? Rushed amendment, lack of transparency, loose terminology of data recipients and purposes. If data is presented in wording which is inaccurate, we can only expect its use to be so too.

We need to ask what is the Government’s data sharing strategy and whom does this legislation serve?

Increasingly it seems to me that the Government is firefighting ad hoc bits of data legislation into existing Bills to enable their initiatives which need our personal data. We are being mined on all fronts. Open Data across the board, HMRC plans, DWP, the NPD, DVLA, care.data and more. And mostly, without our consent and often without our informed knowledge.

How is this empowering patients and citizens by removing our choice or rights of autonomy?

Some data sharing programmes may have been addressed and work well. But it takes more than a bathful of corks, to make a watertight boat. It sounds to an outsider, like overall data sharing design and strategy needs to go back to the drawing board and draw up a decent infrastructure. Patching like this, is a waste of time IMO and we can just sit back, and await the future leaks. I just hope they won’t be nightmare stories in health.

All in all, ‘you have a choice’ sounds rather hollow in all manner of fields right now. It’s been a bad week for patient power from where I write. Our local GP practice caring for 4,000 patients is set to close at the end of the month and the list shared out to three already full alternative practices.

Tim Kelsey as Director for Patients and Information outlined in 2012:

“making data available to the public does drive choice in the same way it would in consumer markets such as financial services or mobile telephones or whatever.”

Freed data was seen to walk hand-in-hand with choice. We were told with patient choice, would come patient empowerment. The NHS was turned into a consumer market in the HSC Act 2012.

It’s therefore ironic that the foundations of care.data fail to put patient choice as its cornerstone. It’s not a consent process which is set out by the HSCA 2012 (250-60’ish). It’s a gateway for extraction with no more than fair processing requirement. That loss of autonomy is not giving patients control nor choice. And the choice that is on offer, is limited. Both in scope and time. The only choice offered in the patient leaflet and communications, is to restrict fully identifiable onward data sharing from GPs or from HSCIC. And to be excluded from care.data is a limited offer – before it is launched. After that, the only choice left is to request the data which has been extracted is made pseudonymous, but it is not possible to remove it.

There can be no arguing with what has happened in the past regarding data releases which may no longer be seen as wise. Despite the fact the Information Centre cannot tell us today, (Q272) who all the end users of data have been in the past, we are offered no new barriers to breaches of trust happening again.

The Health and Social Care Act 2012 brought in fundamental changes in both practice and balance of power between patient and provider, and the State. These are changes in society over which we have little control, for now. Come the next General Election, there may be political change and ideology may be different. It may not be. And inevitably in our current political system, it will swing between different thinkings over time. But our health records given up today, are given up for life. Commercial exploitation is a value set being thrust upon us, which we may or may not not embrace. Both in terms of with whom our data is shared, who is managing it and how.

I met my own MP last week, thanked him for sharing my concerns with the Department of Health last October, and discussed the current status of the programme. He asked me, was I against sharing our medical records at all costs? To which my answer was no. No with a number of caveats.

We are used to, what most would see in this country, as a benign government. Events around the world, show us that we should not take it for granted. (I imagine at this point a failed Conservative election 2015, Boris with his cornflake model for society, replaces Cameron at some point in the next term, and wins in 2018 with support of a minority UKIP coalition. My personal result from hell. Don’t forget to vote May 22nd!)

If we have no statutory strength, what do patients really have power over in the choice to share our medical records?

So far we have only an objection to identifiable data sharing. No opt out of other data sharing from HES at all has been offered in patient communications. No opt out form and nothing in law. And Mr.Hunt’s word of ‘an objection which will be respected’ but does not yet match with what he promised on February 25th, and opt out of anonymised data used in research. 

…”we said that if we are going to use anonymised data for the benefit of scientific discovery in the NHS, people should have the right to opt out”

That’s not only on identifiable data as the patient leaflet proposed.  However I fear this may once again become subject to interpretation. Mr.Hunt has the power to make his promise a reality. I would greatly respect what he says, if we see his words become action.

In 2009 Mr.Kelsey voiced his opinion on opt out, in article published in his name in Prospect.

no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised..”

So who holds the power to make the decision? Mr.Hunt, Mr.Kelsey or do they mean what they say, they want empowered patients?

Whilst there are individuals who appear obsessed with pushing forward the promotion of health data sharing, at all costs, whether with their own Life Science company background interests, or with a vision of how we will mash it up with supermarket loyalty cards, others may be pushing back, immovably opposed to the whole idea of removal of GP patient confidentiality.

Unlike the fourth circle of Hell, there appears to be a more commonly held middle ground.

However, reality is that the opt out does not work like that yet. So far, we do not have a communicated choice on amber HES.

So even for those who support some data sharing, whilst trust hangs in the balance, people will not support a system which appears to deliberately disempower us. By first starting with opt out, care.data is skewed to removing patient choice from those who are not paying attention to public issues and we’re not sure of the security of the objection on offer anyway. Those who are alert, mainly dislike the idea of our data being traded with third parties who may use the data to create knowledge which they sell on, for profit. When we see stories of who uses it and how, we feel let down.

It feels both an abuse of trust and of power, that having trusted ‘the system’, we have been failed by its gatekeepers and guardians.

It is ironic that in a society in which news and campaigns persistently remind our children that their bodies are their own, that the knowledge of their workings will be taken from them without their knowledge or future ability to withdraw their consent and remove their records. In their lifetime, it might not only be e-data but biomedical.

Within assumed consent and opt out based on an honour system, is the question of power and control.  There is one person making a decision who can choose whether or not to respect our objection.

We have only his word, that we have an objection to share any individual identifying data from our GP practice.

The patient leaflet says, ‘you have a choice.’

In reaching our choice, I also ask if we are each individually empowered to make it of our own free will, or will we be emotionally ‘encouraged’ to see it as the right thing to do?

Perhaps made to feel selfish if we do not. Is this free and informed, and not coercion?

Citizens must be pro-active to opt out. The last letter from May 2nd online from Mr.Kelsey suggested we can work together, to get care.data right. However,  in the same letter our patient choice, comes at a price. Whilst being encouraged to see reasons to stay opted in and give up our data, we are told of a patient who was misdiagnosed and died.

“In future, this can help prevent cases such as Alison, from Hampshire, who went to her GP suspecting she had a brain tumour, but was prescribed painkillers. She was eventually diagnosed in A&E after a seizure and died less than a year later.”

I feel when I read that, it came across very much as, “see what happens if you don’t share your data? You’ll die prematurely” and the second statement on cancer in A&E made us feel guilt that we may not help us identify why someone else who died.  And if fear and guilt are not strong enough sticks, here’s the carrot, by sharing our data we’ll keep it safer somehow, by entrusting it to the State:

“minimise the risk to a person’s privacy being compromised in an age of increasingly sophisticated digital threats.”

(Erm, let me keep it only accessible by my GP practice then, rather than risk sharing it via Google Cloud?)

Please. Stop chivvying us into doing what you want. We have a choice. The leaflet, which we may or may not have ever received, told us so on the front cover.  You cannot also tell us what to choose.  Big Brother, you don’t have the right to make up our mind for us. No matter your own experiences, whether it’s a family friend’s care, or the terminal illness of a son, or indeed each of our own family experiences. None of us have the right to decide what is a correct decision for others. Neither should Mr. Hunt be asking GPs to ‘sell’ the programme to patients. It’s an abuse of power to coerce a free choice.

I don’t want to feel emotionally manipulated. Just be straight talking and trust us to make up our mind as we see fit.

Overly aggressive charity collector chuggers asking for cash donations on the street, get short shrift these days. It feels like the programme is still trying the same, with mildly threatening tactics in order to use our data, by research charities among others. The lesson why that’s not right seems not to have been learned. The Wellcome Trust clearly does understand what is needed and backed the Lord Howe’s governance and oversight proposal. (Col 1520).

The letter also gave the impression that poor or missed diagnoses in primary care were responsible for disproportionately finding cancer in A&E, which was disputed on social media Twitter by medics suggesting similar use of statistics had been previously corrected, when NHS England retracted it last autumn. Another lesson not learned. Is it an abuse of statistical data if whilst factual, it is knowingly being misunderstood and creating misinformation.  One could also ask, is this not an abuse of the power of data and anecdote?

Dante was a tad cheeky in the Comedy. He sought to create his own immortality. By retelling the stories of the damned, he created his own power over them. He controls the narrative, selecting whose stories get shared and those which do not. He is selective with the truth. He believes that by interpreting others’ stories he could give them, and himself, an eternal life. He puts himself among the great poets who have gone before him and enjoys their glory.

He is led through Hell, by Virgil, someone he both adulates and trusts.

So too patients need leadership we can trust and respect. We need transparent and accurate truth, if we are to build trust. There is no room for emotional blackmail.

There should be no power struggle in a free decision. Like in the Divine Comedy, there’s lots of rights and wrongs, differing ethics  and moral dilemmas to consider. But judgement should not be made.

Personally I believe it is not right that we parents should determine now what should be our children’s choice, with no correction nor future opt out. Not everyone *is* a willing research patient, and that’s OK. Others may want to be as involved as possible. Only 4% of the population are blood donors, but I’m not going to browbeat anyone into doing it who isn’t.

A stick is still a stick, even if you tell us in your opinion, it’s the right thing to do. You want to empower patients? Prove it. Empower us with statutory opt out and trust us to make our own choice.

Put patients first and show us you mean it.

Will it become a productive process putting patients’ choice and empowerment first, or is it all talk, hurling stones at one another, going round in circles and building nothing?

Does Mr. Hunt, Government and NHS England really want to involve patients about decisions made in the NHS, and in the use of our health data in particular?

What powers-at-be are deciding how our data is managed and governed and who can have it and why?

One of my favourite mottos is found in ‘Inferno’, Dante’s Hell.

“The hottest places in hell are reserved for those who, in a time of moral crisis, maintain their neutrality.”

In Dante’s Commedia, treachery against religion and against government are both reserved for Hell’s final circle.

I hope my public stance is helpful. I fear it has become a bit of a rant.  Apathy is neutral. But this is no time for neutrality.  There are those in power who make decisions, those with power who influence them and the rest of us. We need to speak up.

To protect our patient choice and to ask to exercise our patient power, so oft championed in word by NHS England and Government, feels so far, rather a risky position to take and challenge what is yet an empty promise.   But public opinion should not be ignored when considering what is deemed to be in the  Public Interest.  We need a more interested public to understand what it will mean if our health data is given freely to third parties, perhaps cross borders, in pseudonymous form without data protection controls or any need to respect consent or inform us. Not just today, but for our lifetime and beyond.

We need some good interpretation and good bridge builders.

We need leaders we can trust to lead us through this process and positively out the other side.

..”every single NHS patient should have a right to opt out of having their data used in anonymised scientific research. I think that was the right thing to do. Of course we are having a difficult debate, but its purpose is to carry the public with us so that we can go on to make important scientific discoveries.”

[Jeremy Hunt, 25th February 2014 – col 148]

Power to the People, was timely this week. Is it all talk, or do you trust us to make our own choices? Trust is a two-way process. You want us to trust the system? Give us a statutory opt out. Get the governance and oversight procedures sorted out.  Narrow the commercial purposes for which data can be used.

I think patients can see the benefits of the programme, but it’s going to be hell getting to a workable solution if basic patient empowerment is left off the discussion table. After all, it’s our data.

PS: (The remix of power to the people may be better than the original.) Maybe there’s a second chance for most things.