Tag Archives: trust

care.data: delayed or not delayed? The train wreck that is always on time

If you cancel a train does it still show up in the delayed trains statistics?

care.data plans are not delayed (just don’t ask Healthwatch)

Somerset CCG’s announcement [1] of the delay in their care.data plans came as no surprise, except perhaps to NHS England who effectively denied it, reportedly saying work continues. [2] Both public statements may be true but it would have been good professional practice to publicly recognise that a top down delay affects others who are working hard on the ground to contribute to the effective rollout of the project. Causing confusion and delay is hard to work with. Change and technology projects run on timelines. Deadlines mean that different teams can each do their part and the whole gets done. Or not.

Healthwatch [3] has cancelled their planned public meetings.  Given that one of the reasons stated in the care.data CCG selection process was support from local patient groups including Healthwatch, this appears poor public relations. It almost wouldn’t matter, but in addition to the practicalities, the organisation and leadership are trying to prove it is trustworthy. [4]


HW_cancels


Somerset’s statement is straightforward and says it is applies to all pathfinders: 

“Following a speech by Jeremy Hunt, the Secretary of State for Health this week (3-9-15), in which he outlined his vision for the future use of technology across NHS, NHS England has asked the four care.data pathfinder pilots areas in England (Leeds, Blackburn and Derwent, West Hampshire and Somerset) to temporarily pause their activities.” [Sept 4, Somerset statement]


somerset


From when I first read of the GPES IAG concerns [5] I have seen the care.data programme hurtle from one crisis to another. But this is now a train wreck. A very quiet train wreck. No one has cried out much.[6] And yet I think the project,  professionals, and the public should be shouting from the top of the carriages that this programme needs help if it is ever to reach its destination.

care.data plans are not late against its business plan (there is none)

Where’s the business case? Why can’t it define deadlines that it can achieve?  In February 2015, I suggested the mentality that allows these unaccountable monster programmes to grow unchecked must die out.

I can’t even buy an Oyster card if I don’t know if there is money in my pocket. How can a programme which has already spent multi millions of pounds keep driving on without a budget? There is no transparency of what financial and non-financial benefits are to be expected to justify the cost. There is no accountable public measure of success checking it stays on track.

While it may be more comfortable for the organisation to deny problems, I do not believe it serves the public interest to hide information. This is supported by the very reason for being of the MPA process and its ‘challenge to Whitehall secrecy‘ [7] who rated the care.data rollout red [8] in last years audit. This requires scrutiny to find solutions.

care.data plans do not need to use lessons learned (do they?)

I hope at least there are lessons learned here in the pathfinder on what not to do before the communications rollout to 60m people.  In the words of Richard Feynman, “For successful technology, reality must take precedence over public relations.”

NHS England is using the public interest test to withhold information: “the particular public interest in preserving confidential communications between NHS England and its sponsoring department [the DH].”  I do not believe this serves the public interest if it is used to hide issues and critical external opinion. The argument made is that there is “stronger public interest in maintaining the exemption where it allows the effective development of policy and operational matters on an ongoing basis.”  The Public Accounts Committee in 2013 called for early transparency and intervention which prevents the ongoing waste of “billions of pounds of taxpayers’ money” in their report into the NPfIT. [9] It showed that a lack of transparency and oversight contributed to public harm, not benefit, in that project, under the watch of the Department of Health. The report said:

“Parliament needs to be kept informed not only of what additional costs are being incurred, but also of exactly what has been delivered so far for the billions of pounds spent on the National Programme. The benefits flowing from the National Programme to date are extremely disappointing. The Department estimates £3.7 billion of benefits to March 2012, just half of the costs incurred. This saga [NPfIT] is one of the worst and most expensive contracting fiascos in the history of the public sector.”

And the Public Accounts Committee made a recommendation in 2013:

“If the Department is to deliver a paperless NHS, it needs to draw on the lessons from the National Programme and develop a clear plan, including estimates of costs and benefits and a realistic timetable.” [PAC 2013][9]

Can we see any lessons drawn on today in care.data? Or any in Jeremy Hunt’s speech or his refusal to comment on costs for the paperless NHS plans reported by HSJ journal at NHSExpo15?

While history repeats itself and “estimates of costs and benefits and a realistic timetable” continue to be absent in the care.data programme, the only reason given by Somerset for delay is to fix the specific issue of opt out:

“The National Data Guardian for health and care, Dame Fiona Caldicott, will… provide advice on the wording for a new model of consents and opt-outs to be used by the care.data programme that is so vital for the future of the NHS. The work will be completed by January [2016]…”

Perhaps delay will buy NHS England some time to get itself on track and not only respect public choice on consent, but also deliver a data usage report to shore up trust, and tell us what benefits the programme will deliver that cannot already be delivered today (through existing means, like the CPRD for research [10]).

Perhaps.

care.data plans will only deliver benefits (if you don’t measure costs)

I’ve been told “the realisation of the benefits, which serve the public interest, is dependent on the care.data programme going ahead.” We should be able to see this programme’s costs AND benefits. It is we collectively after all who are paying for it, and for whom we are told the benefits are to be delivered. DH should release the business plan and all cost/benefit/savings  plans. This is a reasonable thing to ask. What is there to hide?

The risk has been repeatedly documented in 2014-15 board meetings that “the project continues without an approved business case”.

The public and medical profession are directly affected by the lack of money given by the Department of Health as the reason for the reductions in service in health and social care. What are we missing out on to deliver what benefit that we do not already get elsewhere today?

On the pilot work continuing, the statement from NHS England reads: “The public interest is best served by a proper debate about the nature of a person’s right to opt out of data sharing and we will now have clarity on the wording for the next steps in the programme,” 

I’d like to see that ‘proper debate’ at public events. The NIB leadership avoids answering hard questions even if asked in advance, as requested. Questions such as mine go unanswered::

“How does NHS England plan to future proof trust and deliver a process of communications for the planned future changes in scope, users or uses?”

We’re expected to jump on for the benefits, but not ask about the cost.

care.data plans have no future costs (just as long as they’re unknown)

care.data isn’t only an IT infrastructure enhancement and the world’s first population wide database of 60m primary care records. It’s a massive change platform through which the NHS England Commissioning Board will use individual level business intelligence to reshape the health service. A massive change programme  that commodifies patient confidentiality as a kick-starter for economic growth.  This is often packaged together with improvements for patients, requirements for patient safety, often meaning explanations talk about use of records in direct care conflated with secondary uses.

“Without interoperable digital data, high quality effective local services cannot be delivered; nor can we achieve a transformation in patient access to new online services and ‘apps’; nor will the NHS maximise its opportunity to be a world centre in medical science and research.” [NHS England, September 1 2015] 

So who will this transformation benefit? Who and what are all its drivers? Change is expensive. It costs time and effort and needs investment.

Blackburn and Darwen’s Healthwatch appear to have received £10K for care.data engagement as stated in their annual report. Somerset’s less clear. We can only assume that Hampshire, expecting a go live ‘later in 2015’ has also had costs. Were any of their patient facing materials already printed for distribution, their ‘allocated-under-austerity’ budgets spent?

care.data is not a single destination but a long journey with a roadmap of plans for incremental new datasets and expansion of new users.

The programme should already know and be able to communicate the process behind informing the public of future changes to ensure future use will meet public expectations in advance of any change taking place. And we should know who is going to pay for that project lifetime process, and ongoing change management. I keep asking what that process will be and how it will be managed:

June 17 2015, NIB meeting at the King’s Fund Digital Conference on Health & Social Care:

june17

September 2 2015, NIB Meeting at NHS Expo 15:

NIBQ_Sept

It goes unanswered time and time again despite all the plans and roadmaps and plans for change.

These projects are too costly to fail. They are too costly to justify only having transparency applied after the event, when forced to do so.

care.data plans are never late (just as long as there is no artificial deadline)

So back to my original question. If you cancel a train does it still show up in the delayed trains statistics? I suppose if the care.data programme claims there is no artificial deadline, it can never be late. If you stop setting measurable deadlines to deliver against, the programme can never be delayed. If there is no budget set, it can never be over it. The programme will only deliver benefits, if you never measure costs.

The programme can claim it is in the public interest for as long as we are prepared to pay with an open public purse and wait for it to be on track.  Wait until data are ready to be extracted, which the notice said:

…” is thought to remain a long way off.” 

All I can say to that, is I sure hope so. Right now, it’s not fit for purpose. There must be decisions on content and process arrived at first. But we also deserve to know what we are expecting of the long journey ahead.

On time, under budget, and in the public interest?

As long as NHS England is the body both applying and measuring the criteria, it fulfils them all.

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[1] Somerset CCG announces delay to care.data plans https://www.somersetlmc.co.uk/caredatapaused

[2] NHS England reply to Somerset announcement reported in Government Computing http://healthcare.governmentcomputing.com/news/ccg-caredata-pilot-work-continues-4668290

[3] Healthwatch bulletin: care.data meetings cancelled http://us7.campaign-archive1.com/?u=16b067dc44422096602892350&id=5dbdfc924c

[4] Building public trust: after the NIB public engagement in Bristol http://jenpersson.com/public-trust-datasharing-nib-caredata-change/

[5] GPES IAG http://www.hscic.gov.uk/media/12911/GPES-IAG-Minutes-12-September-2013/pdf/GPES_IAG_Minutes_12.09.13.pdf

[6] The Register – Right, opt out everybody! hated care.data programme paused again http://www.theregister.co.uk/2015/09/08/hated_caredata_paused_again_opt_out/

[7] Pulse Today care.data MPA rating http://www.pulsetoday.co.uk/your-practice/practice-topics/it/caredata-looks-unachievable-says-whitehall-watchdog/20010381.article#.VfMXYlbtiyM

[8] Major Projects Authority https://engage.cabinetoffice.gov.uk/major-projects-authority/

[9] The PAC 2013 ttp://www.parliament.uk/business/committees/committees-a-z/commons-select/public-accounts-committee/news/npfit-report/

[10] Clinical Practice Research Datalink (CPRD)

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image source: http://glaconservatives.co.uk/news/london-commuters-owed-56million-in-unclaimed-refunds-by-rail-operators/

 

Building Public Trust [2]: a detailed approach to understanding Public Trust in data sharing

Enabling public trust in data sharing is not about ‘communicating benefits’. For those interested in nitty gritty, some practical suggestions for progress in Building Public Trust in data sharing follows on from my summary after the NIB Bristol event 24/7/15.

Trust is an important if invisible currency used in the two-way transactions between an organisation and people.

So far, there have been many interactions and listening events but much of what professionals and the public called for, remains undone and public trust in the programme remains unchanged since 2014.

If you accept that it is not public trust that needs built, but the tangible trusthworthiness of an organisation, then you should also ask  what needs done by the organisation to make that demonstrable change?

What’s today’s position on Public Trust of data storage and use

Trust in the data sharing process is layered and dependent on a number of factors. Mostly [based on polls and public event feedback from 2014] “who will access my data and what will they use it for?”

I’m going to look more closely below at planned purposes: research and commissioning.

It’s also important to remember that trust is not homogeneous. Trust  is nuanced even within the single relationship between one individual and another. Trust, like consent, is stratified – you may trust the Post Office to deliver a letter or postcard, but sign up to recorded delivery for something valuable.

So for example when it comes to secondary uses data sharing, I might trust HSCIC with storing and using my health records for anonymous statistics, for analysis of immunisation and illness patterns for example. But as long as they continue to share with the Home Office, police or other loosely defined third parties [5], do I want them to have fully  identifiable data at all?

Those bodies have their own public trust issues at an all time low.

Mixing the legitimate users of health data with these Back Office punitive  uses will invite some people’s opt out who would otherwise not. Some of the very groups who need the most health and social care understanding, research and care, will be the very groups who opt out if there is a possibility of police and Home Office access by the back door. Telling traveller communities what benefits care.data will bring them is wasted effort when they see NHS health data is a police accessible register. I know. I’ve talked to some about it.

That position on data storage and use should be reconsidered if NHS England is serious that this is about health and for the benefit of individuals and communities’ well being.

What has HSCIC changed to demonstrate that  it is trustworthy?

A new physical secure setting is being built that will enable researchers to view research data but not take raw data away.

That is something they can control, and have changed, and it demonstrates they take the public seriously and we reciprocate.

That is great – demonstrable change by the organisation, inviting change in the public.

That’s practical, so what can be done on policy by NHS England/DH?

What else should be done to demonstrate policy is trustworthy?

Act on what the public and professionals asked for in 2014. [8]

Right now it feels as though in public communications that the only kind of relationship that is wanted on the part of the leadership is a one night stand.

It’s all about what the programme wants. Minimise the objections, get the data, and sneak out. Even when its leaders talk about some sort of ongoing consent model, the focus is still about ‘how to enable sharing data.’

This focus is the wrong one. If you want to encourage people to share they need to know why, what’s in it for them, and why do you want it? What collecting the data is about is still important to explain and specifically, each time the scope changes if you are doing it fairly.

Remember. Data-sharing is not vital to future-proof the NHS. Using knowledge wisely is. 

What is the policy for the future of primary care research?

The CPRD already enables primary care GP data to be linked with secondary data for research. In fact it already links more items from GP held data than current are.data plans to extract. So what benefit will care.data offer to research that is not already available today?

Simply having ever more data, stored in more places will not make us wiser. Before it’s collected repeatedly, it is right to question why.

What do we have collected already? How is it used? Where are the gaps in what we want to achieve through the knowledge we could gain. It’s NOT simply about filling in what gaps exist in what data we could gather. Understand the purposes and what will be gained to see if it’s worth the efforts. Prioritise. Collect it all, is not a solution.

I had thought that the types of data to be collected in care.data were clear, and how it differs from direct care was clear. But the Bristol NIB meeting demonstrated a wide range of understanding in NHS and CCG staff, Local Authority staff, IT staff, IG professionals, data providers and other third parties.  Data for secondary purposes are not to be conflated with direct care.

But that’s not what care.data sharing is about. So where to start with public trust, asked the NIB Bristol #health2020 meeting?

Do you ignore the starting point or tailor your approach to it?

“The NHS is at a crossroads and needs to change and improve as it moves forward. That was the message from NHS England’s Chief Executive Simon Stevens as a Five Year Forward View for the NHS was launched.”  [1] [NHS England, Oct 2014]

As the public is told over and over again that change is vital to the health of a sustainable NHS, a parallel public debate rages, whether the policy-making organisations behind the NHS – the commissioning body NHS England, the Department of Health and Cabinet Office – are serious about the survival of universal health and care provision, and about supporting its clinicians.

It is against this backdrop, and under the premise that obtaining patient data for centralised secondary uses is do or die for the NHS, that the NIB #health2020 has set out [2] work stream 4: “Build and sustain public trust: Deliver roadmap to consent based information sharing and assurance of safeguards”

“Without the care.data programme, the health service will not have a future, said Tim Kelsey, national director for patients and information, NHS England.” [3]

 

Polls say [A] nearly all institutions suffer from a ‘trust in data deficit’. Trust in them to use data appropriately, is lower than trust in the organisation generally.

Public trust in what the Prime Minister says on health is low.

Trust in the Secretary of State for Health is possibly at an all time low, with: “a bitter divide, a growing rift between the Secretary of State for Health and the medical profession.” [New Statesman, July 2015]

This matters. care.data needs the support of professionals and public.

ADRN research showed multiple contributing factors: “Participants were also worried about personal data being leaked, lost, shared or sold by government departments to third parties, particularly commercial companies. Low trust in government more generally seemed to be driving these views.” [Dialogue on data]

It was interesting to see all the same issues as reflected by the public in care.data listening events, asked from the opposite perspective from data users.

But it was frustrating to sit ay the Bristol NIB #health2020 event and discuss questions around the same issues on data sharing already discussed at care.data events through the last 18 months.

Nothing substantial has changed other then HSCIC’s physical security for data storage.

It is frustrating knowing that these change and communications issues will keep coming back again and again if not addressed.

Personally, I’m starting to lose trust there is any real intention for change, if senior leadership is unwilling to address this properly and change themselves.

To see a change in Public Trust do what the public asked to see change: On Choice

At every care.data meeting I attended in 2014, people asked for choice.

They asked for boundaries between the purposes of data uses, real choice.

Willingness for their information to be used by academic researchers in the public interest does not equate to being willing for it to be used by a pharmaceutical company for their own market research and profit.

The public understand these separations well. To say they do not, underestimates people and does not reflect public feeling. Anyone attending 2014 care.data events, has heard many people discuss this. They want a granular consent model.

This would offer a red line between how data are used for what purposes.

Of the data-sharing organisations today some are trusted and others are not. Offering a granular consent approach would offer a choice of a red line between who gets access to data.

This choice of selective use, would encourage fewer people to opt out from all purposes, allowing more data to be available for research for example.

To see a change in Public Trust do what the public asked to see: Explain your purposes more robustly

Primarily this data is to be used and kept indefinitely for commissioning purposes. Research wasn’t included as purposes for care.data gathering  in the planned specifications for well over a year. [After research outcry]

Yet specific to commissioning, the Caldicott recommendations [3] were very clear; commissioning purposes were insufficient and illegal grounds for sharing fully identifiable data which was opposed by NHS England’s Commissioning Board:

“The NHS Commissioning Board suggested that the use of personal confidential data for commissioning purposes would be legitimate because it would form part of a ‘consent deal’ between the NHS and service users. The Review Panel does not support such a proposition. There is no evidence that the public is more likely to trust commissioners to handle personal confidential data than other groups of professionals who have learned how to work within the existing law.”

NHS England seems unwilling to change this position, despite the professionals bodies and the public’s opposition to sharing fully identifiable data for commissioning purposes [care.data listening events 2014]. Is it any wonder that they keep hitting the same barrier? More people don’t want that to happen than you do. Something’s gotta give.

Ref the GPES Customer Requirements specification from March 2013 v2.1 which states on page 11: “…for commissioning purposes, it is important to understand activity undertaken (or not undertaken) in all care settings. The “delta load” approach (by which only new events are uploaded) requires such data to be retained, to enable subsequent linkage.”

The public has asked for red lines to differentiate between the purposes of data uses. NHS England and the Department of Health policy seems unwilling to do so.  Why?

To see a change in Public Trust do what the public asked to see: Red lines on policy of commercial use – and its impact on opt out

The public has asked for red lines outlawing commercial exploitation of their data. Though it was said it was changed, in practice it is hard to see. Department of Health policy seems unwilling to be clear, because the Care Act 2012 purposes remained loose.  Why?

As second best, the public has asked for choice not to have their data used at all for secondary purposes and were offered an opt out.

NHS England leaflet and the Department of Health, Secretary of State publicly promised this but has been unable to implement it and to date has made no public announcement on when it will be respected.  Why?

Trust does not exist in a vacuum.  What you say and what you actually do, matter. Policy and practice are co-dependent. Public trust depends on your organisations being trustworthy.

Creating public trust is not the government, the DH or NIB’s task ahead. They must instead focus on improving their own competency, honesty and reliability and through those, they will demonstrate that they can be trusted.

That the secondary purposes opt out has not been respected does not demonstrate those qualities.

“Trust is not about the public. Public trust is about the organisation being trustworthy.”

How will they do that?

Let the DH/NHS England and organisations in policy and practice address what they themselves will stop and start doing to bring about change in their own actions and behaviours.

Communications change request: Start by addressing the current position NOT what the change will bring. You must move people along the curve , not dump them with a fait accomplice and wonder why the reaction is so dire.

changecurve

Vital for this is the current opt out; what was promised and what was done.

The secondary uses opt out must be implemented with urgency.

To see a change in Public Trust you need to take action. the Programme needs to do what the public asked to see change: on granular consent, on commercial use and defined purposes.

And to gather suggested actions, start asking the right questions.

Not ‘how do we rebuild public trust?’ but “how can we demonstrate that we are trustworthy to the public?”

1. How can a [data-sharing] org demonstrate it is trustworthy?
2. Identify: why people feel confident their trust is well placed?
3. Why do clinical professionals feel confident in any org?
4. What would harm the organisational-trust-chain in future?
5. How will the org-trust-chain be positively maintained in future?
6. What opportunities will be missed if that does not happen?
(identify value)

Yes the concepts are close,  but how it is worded defines what is done.

These apparent small differences make all the difference in how people provide you ideas, how you harness them into real change and improvement.

Only then can you start understanding why “communicating the benefits” has not worked and how it should affect future communications  materials.

From this you will find it much easier to target actual tasks, and short and long term do-able solutions than an open discussion will deliver. Doing should  include thinking/attitudes as well as actions.

This will lead to communications messages that are concrete not wooly. More about that in the next posts.

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To follow, for those interested in nitty gritty, some practical suggestions for progress in Building Public Trust in data sharing:

Part one: A seven step top line summary – What I’d like to see change addressing public trust in health data sharing for secondary purposes.

This is Part two: a New Approach is needed to understanding Public Trust For those interested in a detailed approach on Trust. What Practical and Policy steps influence trust. On Reserach and Commissioning. Trust is not homogeneous. Trust  is nuanced even within the single relationship between one individual and another. It doesn’t exist in a vacuum.

Part three: Know where you’re starting from. What behaviours influence trust and how can we begin to see them demonstrated. Mr.Kelsey discusses  consent and opt out. Fixing what has already been communicated is vital before new communications get rolled out. Vital to tailor the content of public communications, for public trust and credibility the programme must be clear what is missing and what needs filled in. #Health2020 Bristol NIB meeting.

Part four: “Communicate the Benefits” won’t work – How Communications influence trust. For those interested in more in-depth reasons, I outline in part two why the communications approach is not working, why the focus on ‘benefits’ is wrong, and fixes.

Part five: Future solutions – why a new approach may work better for future trust – not to attempt to rebuild trust where there is now none, but strengthen what is already trusted and fix today’s flawed behaviours; honesty and reliability, that  are vital to future proofing public trust.

 

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References:

[1] NHS England October 2014 http://www.england.nhs.uk/2014/10/23/nhs-leaders-vision/

[2] Workstream 4: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/442829/Work_Stream_4.pdf

[3] Caldicott Review 2: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

[4] Missing Programme Board documents: 2015 and June-October 2014

[5] HSCIC Data release register

[6] Telegraph article on Type 2 opt out http://www.telegraph.co.uk/news/health/news/11655777/Nearly-1million-patients-could-be-having-confidential-data-shared-against-their-wishes.html

[7] Why Wanting a Better Care.Data is not Luddite: http://davidg-flatout.blogspot.co.uk/2014/04/why-wanting-better-caredata-is-not.html

[8] Talking to the public about using their data is crucial- David Walker, StatsLife http://www.statslife.org.uk/opinion/1316-talking-to-the-public-about-using-their-data-is-crucial

[9] Dame Fiona Caldicott appointed in new role as National Data Guardian

[10] Without care.data health service has no future says director http://www.computerweekly.com/news/2240216402/Without-Caredata-we-wont-have-a-health-service-for-much-longer-says-NHS

[11] Coin Street, care.data advisory meeting, September 6th 2014: https://storify.com/ruth_beattie/care-data-advisory-group-open-meeting-6th-septembe

[12] Public questions unanswered: http://jenpersson.com/pathfinder/

Digital revolution by design: infrastructures and the fruits of knowledge

Since the beginning of time and the story of the Garden of Eden, man has found a way to share knowledge and its power.

Modern digital tools have become the everyday way to access knowledge for many across the world, giving quick access to information and sharing power more fairly.

In this third part of my thoughts on digital revolution by design, triggered by the #kfdigi15 event on June 16-17, I’ve been considering some of the constructs we have built; those we accept and those that could be changed, given the chance, to build a better digital future.

Not only the physical constructions, the often networked infrastructures, but intangible infrastructures of principles and power, co-dependencies around a physical system; the legal and ethical infrastructures of ownership, governance and accountability.

Our personal data flow in systems behind the screens, at the end of our fingertips. Controlled in frameworks designed by providers and manufacturers, government and commercial agencies.

Increasingly in digital discussions we hear that the data subject, the citizen, will control their own data.

But if it is on the terms and conditions set by others, how much control is real and how much is the talk of a consenting citizen only a fig leaf behind which any real control is still held by the developer or organisation providing the service?

When data are used, turned into knowledge as business intelligence that adds value to aid informed decision making. By human or machine.

How much knowledge is too much knowledge for the Internet of Things to build about its users? As Chris Matyszczyk wrote:

“We have all agreed to this. We click on ‘I agree’ with no thought of consequences, only of our convenience.”

Is not knowing what we have agreed to our fault, or the responsibility of the provider who’d rather we didn’t know?

Citizens’ rights are undermined in unethical interactions if we are exploited by easy one-click access and exchange our wealth of data at unseen cost. Can it be regulated to promote, not stifle innovation?

How can we get those rights back and how will ‘doing the right thing’ help shape and control the digital future we all want?

The infrastructures we live inside

As Andrew Chitty says in this HSJ article: “People live more mobile and transient lives and, as a result, expect more flexible, integrated, informed health services.

To manage that, do we need to know how systems work, how sharing works, and trust the functionality of what we are not being told and don’t see behind the screens?

At the personal level, whether we sign up for the social network, use a platform for free email, or connect our home and ourselves in the Internet of things, we each exchange our personal data with varying degrees of willingness. There there is often no alternative if we want to use the tool.

As more social and consensual ‘let the user decide’ models are being introduced, we hear it’s all about the user in control, but reality is that users still have to know what they sign up for.

In new models of platform identity sign on, and tools that track and mine our personal data to the nth degree that we share with the system, both the paternalistic models of the past and the new models of personal control and social sharing are merging.

Take a Fitbit as an example. It requires a named account and data sharing with the central app provider. You can choose whether or not to enable ‘social sharing’ with nominated friends whom you want to share your boasts or failures with. You can opt out of only that part.

I fear we are seeing the creation of a Leviathan sized monster that will be impossible to control and just as scary as today’s paternalistic data mis-management. Some data held by the provider and invisibly shared with third parties beyond our control, some we share with friends, and some stored only on our device.

While data are shared with third parties without our active knowledge, the same issue threatens to derail consumer products, as well as commercial ventures at national scale, and with them the public interest. Loss of trust in what is done behind the settings.

Society has somehow seen privacy lost as the default setting. It has become something to have to demand and defend.

“If there is one persistent concern about personal technology that nearly everybody expresses, it is privacy. In eleven of the twelve countries surveyed, with India the only exception, respondents say that technology’s effect on privacy was mostly negative.” [Microsoft survey 2015, of  12,002 internet users]

There’s one part of that I disagree with. It’s not the effect of technology itself, but the designer or developers’ decision making that affects privacy. People have a choice how to design and regulate how privacy is affected, not technology.

Citizens have vastly differing knowledge bases of how data are used and how to best interact with technology. But if they are told they own it, then all the decision making framework should be theirs too.

By giving consumers the impression of control, the shock is going to be all the greater if a breach should ever reveal where fitness wearable users slept and with whom, at what address, and were active for how long. Could a divorce case demand it?

Fitbit users have already found their data used by police and in the courtroom – probably not what they expected when they signed up to a better health tool.  Others may see benefits that could harm others by default who are excluded from accessing the tool.

Some at org level still seem to find this hard to understand but it is simple:
No trust = no data = no knowledge for commercial, public or personal use and it will restrict the very innovation you want to drive.

Google gmail users have to make 10+ clicks to restrict all ads and information sharing based on their privacy and ad account settings. The default is ad tailoring and data mining. Many don’t even know it is possible to change the settings and it’s not intuitive how to.

Firms need to consider their own reputational risk if users feel these policies are not explicit and are exploitation. Those caught ‘cheating’ users can get a very public slap on the wrist.

Let the data subjects rule, but on whose terms and conditions?

The question every citizen signing up to digital agreements should ask, is what are the small print  and how will I know if they change? Fair processing should offer data protection, but isn’t effective.

If you don’t have access to information, you make decisions based on a lack of information or misinformation. Decisions which may not be in your own best interest or that of others. Others can exploit that.

And realistically and fairly, organisations can’t expect citizens to read pages and pages of Ts&Cs. In addition, we don’t know what we don’t know. Information that is missing can be as vital to understand as that provided. ‘Third parties’ sharing – who exactly does that mean?

The concept of an informed citizenry is crucial to informed decision making but it must be within a framework of reasonable expectation.

How do we grow the fruits of knowledge in a digital future?

Real cash investment is needed now for a well-designed digital future, robust for cybersecurity, supporting enforceable governance and oversight. Collaboration on standards and thorough change plans. I’m sure there is much more, but this is a start.

Figurative investment is needed in educating citizens about the technology that should serve us, not imprison us in constructs we do not understand but cannot live without.

We must avoid the chaos and harm and wasted opportunity of designing massive state-run programmes in which people do not want to participate or cannot participate due to barriers of access to tools. Avoid a Babel of digital blasphemy in which the only wise solution might be to knock it down and start again.

Our legislators and regulators must take up their roles to get data use, and digital contract terms and conditions right for citizens, with simplicity and oversight. In doing so they will enable better protection against risks for commercial and non-profit orgs, while putting data subjects first.

To achieve greatness in a digital future we need: ‘people speaking the same language, then nothing they plan to do will be impossible for them’.

Ethics. It’s more than just a county east of London.

Let’s challenge decision makers to plant the best of what is human at the heart of the technology revolution: doing the right thing.

And from data, we will see the fruits of knowledge flourish.

******

1. Digital revolution by design: building for change and people
2. Digital revolution by design: barriers by design
3
. Digital revolution by design: infrastructures and the fruits of knowledge
4. Digital revolution by design: infrastructures and the world we want

Off the record – a case study in NHS patient data access

Patient online medical records’ access in England was promised by April 2015.

HSCIC_statsJust last month headlines abounded “GPs ensure 97% of patients can access summary record online“. Speeches carried the same statistics.  So what did that actually mean? The HSCIC figures released in May 2015 showed that while around 57 million patients can potentially access something of their care record only 2.5 million or 4.5% of patients had actively signed up for the service.

In that gap lies a gulf of a difference. You cannot access the patient record unless you have signed up for it, so to give the impression that 97% of patients can access a summary record online is untrue.  Only 4.5% can, and have done so. While yes, this states patients must request access, the impression is somewhat misrepresentative.

Here’s my look at what that involved and once signed up, what ‘access your medical records’ actually may mean in practice.

The process to getting access

First I wrote a note to the practice manager about a month ago, and received a phone call a few days later to pop in any time. A week later, I called to check before I would ‘pop in’ and found that the practice manager was not in every day, and it would actually have to be when she was.

I offered to call back and arrange a suitable date and time. Next call, we usefully agreed the potential date I could go in, but I’d have to wait to be sure that the paper records had first been retrieved from the external store (since another practice closed down ours had become more busy than ever and run out of space.) I was asked whether I had already received permission from the practice manager and to confirm that I knew there would be a £10 charge.

So, one letter, four phone calls and ten pounds in hard cash later, I signed a disclosure form this morning to say I was me and I had asked to see my records, and sat in a corner of the lovely practice manager’s office with a small thinly stuffed Lloyd George envelope, and a few photocopied or printed-out A4 pages  (so I didn’t get to actually look at my own on-screen record the GP uses) and a receipt.

What did my paper records look like?

My oldest notes on paper went back as far as 1998 and were for the most part handwritten. Having lived abroad since there was then a ten year gap until my new registration and notes moved onto paper prints of electronic notes.

These included referral for secondary care, correspondence between consultants and my GP and/or to and from me.

The practice manager was very supportive and tolerant of me taking up a corner of her office for half an hour. Clutching a page with my new log-in for the EMIS web for patient records access, I put the papers back, said my thank yous and set off home.

Next step: online

I logged on at home to the patient access system. Having first had it in 2009 when I registered, I hadn’t used the system since as it had very limited functionality, and I had had good health. Now I took the opportunity to try it again.

By asking the GP practice reception, I had been assigned a PIN, given the Practice ID, an Access ID and confirmation of my NHS number all needed entry in Step 1:

emis1

 

Step 2: After these on screen 2, I was asked for my name, DOB, and to create a password.

emis2

 

Step 3: the system generated a long number user ID which I noted down.

Step 4: I looked for the data sharing and privacy policy. Didn’t spot with whom data entered would be shared or for what purposes and any retention or restrictions of purposes. I’d like to see that added.

emis3
Success:

Logged on using my new long user ID and password, I could see an overview page with personal contact details, which were all accurate.  Sections for current meds, allergies, appointments, medical record, personal health record and repeats prescriptions. There was space for overview of height, BMI and basic lifestyle (alcohol and smoking) there too.

emis4c

 

A note from 2010 read: “refused consent to upload national. sharing. electronic record.” Appropriately some may perhaps think, this was recorded in the “problems” section, which was otherwise empty.

Drilling down to view the medication record,  the only data held was the single most recent top line prescription without any history.

emis4b

 

And the only other section to view was allergies, similarly and correctly empty:

emis5

The only error I noted was a line to say I was due an MMR immunization in June 2015. [I will follow up to check whether one of my children should be due for it, rather than me.]

What else was possible?

Order repeat prescription: If your practice offers this service there is a link called Make a request in the Repeat Prescriptions section of the home page after you have signed in. This was possible. Our practice already does it direct with the pharmacy.

Book an appointment: with your own GP from dates in a drop down.

Apple Health app integration: The most interesting part of the online access was this part that suggested it could upload a patient’s Apple health app data, and with active patient consent, that would be shared with the GP.

emis6

 

It claims: “You can consent to the following health data types being shared to Patient Access and added to your Personal Health Record (PHR):”

  • Height
  • Weight
  • BMI
  • Blood Glucose
  • Blood Pressure (Diastolic & Systolic)
  • Distance (walked per day)
  • Forced expired volume
  • Forced Vital capacity
  • Heart Rate
  • Oxygen Saturation
  • Peak Expiratory Flow
  • Respiratory rate
  • Steps (taken per day)

“This new feature is only available to users of IOS8 who are using the Apple Health app and the Patient Access app.”

 

With the important caveat for some: IOS 8.1 has removed the ability to manually enter Blood Glucose data via the Health app. Health will continue to support Blood Glucose measurements added via 3rd party apps such as MySugr and iHealth.

Patient Access will still be able to collect any data entered and we recommend entering Blood Glucose data via one of those free apps until Apple reinstate the capability within Health.

What was not possible:

To update contact details: The practice configures which details you are allowed to change. It may be their policy to restrict access to change some details only in person at the practice.

Viewing my primary care record: other than a current medication there was nothing of my current records in the online record. Things like test results were not in my online record at all, only on paper. Pulse noted sensible concerns about this area in 2013.

Make a correction: clearly the MMR jab note is wrong, but I’ll need to ask for help to remove it.

“Currently the Patient Access app only supports the addition of new information; however, we envisage quickly extending this functionality to delete information via the Patient Access service.” How this will ensure accuracy and avoid self editing I am unsure.

Questions: Who can access this data?

While the system stated that “the information is stored securely in our accredited data centre that deals solely with clinical data. ” there is no indication of where, who manages it and who may access it and why.

In 2014 it was announced that pharmacies would begin to have access to the summary care record.

“A total of 100 pharmacies across Somerset, Northampton, North Derbyshire, Sheffield and West Yorkshire will be able to view a patient’s summary care record (SCR), which contains information such as a patient’s current medications and allergies.”

Yet clearly in the Summary Care Record consent process in 2010 from my record, pharmacists were not mentioned.

Does the patient online access also use the Summary Care Record or not? If so, did I by asking for online access, just create a SCR without asking for one? Or is it a different subset of data? If they are different, which is the definitive record?

Overall:

From stories we read it could appear that there are broad discrepancies between what is possible in one area of the country from another, and between one practice and another.

Clearly to give the impression that 97% of patients can access summary records online is untrue to date if only 4.5% actually can get onto an electronic system, and see any part of their records, on demand today.

How much value is added to patients and practitioners in that 4.5% may vary enormously depending upon what functionality they have chosen to enable at different locations.

For me as a rare user of the practice, there is no obvious benefit right now. I can book appointments during the day by telephone and meds are ordered through the chemist. It contained no other information.

I don’t know what evidence base came from patients to decide that Patient Online should be a priority.

How many really want and need real time, online access to their records? Would patients not far rather the priority in these times of austerity, the cash and time and IT expertise be focused on IT in direct care and visible by their medics? So that when they visit hospital their records would be available to different departments within the hospital?

I know which I would rather have.

What would be good to see?

I’d like to get much clearer distinction between the data purposes we have of what data we share for direct and indirect purposes, and on what legal basis.

Not least because it needs to be understandable within the context of data protection legislation. There is often confusion in discussions of what consent can be implied for direct care and where to draw its limit.

The consultation launched in June 2014 is still to be published since it ended in August 2014, and it too blurred the lines between direct care and secondary purposes.  (https://www.gov.uk/government/consultations/protecting-personal-health-and-care-data).

Secondly, if patients start to generate potentially huge quantities of data in the Apple link and upload it to GP electronic records, we need to get this approach correct from the start. Will that data be onwardly shared by GPs through care.data for example?

But first, let’s start with tighter use of language on communications. Not only for the sake of increased accuracy, but so that as a result expectations are properly set for policy makers, practitioners and patients making future decisions.

There are many impressive visions and great ideas how data are to be used for the benefit of individuals and the public good.

We need an established,  easy to understand, legal and ethical framework about our datasharing in the NHS to build on to turn benefits into an achievable reality.

The Economic Value of Data vs the Public Good? [2] Pay-for-privacy, defining purposes

Differentiation. Telling customers apart and grouping them by similarities is what commercial data managers want.

It enables them to target customers with advertising and sales promotion most effectively. They segment the market into chunks and treat one group differently from another.

They use market research data, our loyalty card data, to get that detailed information about customers, and decide how to target each group for what purposes.

As the EU states debate how research data should be used and how individuals should be both enabled and protected through it, they might consider separating research purposes by type.

While people are happy for the state to use their data without active consent for bona fide research, they are not for commercial consumer research purposes. [ref part 1].

Separating consumer and commercial market research from the definition of research purposes for the public good by the state, could be key to rebuilding people’s trust in government data use.

Having separate purposes would permit separate consent and control procedures to govern them.

But what role will profit make in the state’s definition of ‘in the public interest’ – is it in the public interest if the UK plc makes money from its citizens? and how far along any gauge of public feeling will a government be prepared to go to push making money for the UK plc at our own personal cost?

Pay-for-privacy?

In January this year, the Executive Vice President at Dunnhumby, Nishat Mehta, wrote in this article [7], about how he sees the future of data sharing between consumers and commercial traders:

“Imagine a world where data and services that are currently free had a price tag. You could choose to use Google or Facebook freely if you allowed them to monetize your expressed data through third-party advertisers […]. Alternatively, you could choose to pay a fair price for these services, but use of the data would be forbidden or limited to internal purposes.”

He too, talked about health data. Specifically about its value when accurate expressed and consensual:

“As consumers create and own even more data from health and fitness wearables, connected devices and offline social interactions, market dynamics would set the fair price that would compel customers to share that data. The data is more accurate, and therefore valuable, because it is expressed, rather than inferred, unable to be collected any other way and comes with clear permission from the user for its use.”

What his pay-for-privacy model appears to have forgotten, is that this future consensual sharing is based on the understanding that privacy has a monetary value. And that depends on understanding the status quo.

It is based on the individual realising that there is money made from their personal data by third parties today, and that there is a choice.

The extent of this commercial sharing and re-selling will be a surprise to most loyalty card holders.

“For years, market research firms and retailers have used loyalty cards to offer money back schemes or discounts in return for customer data.”

However despite being signed up for years, I believe most in the public are unaware of the implied deal. It may be in the small print. But everyone knows that few read it, in the rush to sign up to save money.

Most shoppers believe the supermarket is buying our loyalty. We return to spend more cash because of the points. Points mean prizes, petrol coupons, or pounds off.

We don’t realise our personal identity and habits are being invisibly analysed to the nth degree and sold by supermarkets as part of those sweet deals.

But is pay-for-privacy discriminatory? By creating the freedom to choose privacy as a pay-for option, it excludes those who cannot afford it.

Privacy should be seen as a human right, not as a pay-only privilege.

Today we use free services online but our data is used behind the scenes to target sales and ads often with no choice and without our awareness.

Today we can choose to opt in to loyalty schemes and trade our personal data for points and with it we accept marketing emails, and flyers through the door, and unwanted calls in our private time.

The free option is to never sign up at all, but by doing so customers pay a premium by not getting the vouchers and discounts.  Or trading convenience of online shopping.

There is a personal cost in all three cases, albeit in a rather opaque trade off.

 

Does the consumer really benefit in any of these scenarios or does the commercial company get a better deal?

In the sustainable future, only a consensual system based on understanding and trust will work well. That’s assuming by well, we mean organisations wish to prevent PR disasters and practical disruption as resulted for example to NHS data in the last year, through care.data.

For some people the personal cost to the infringement of privacy by commercial firms is great. Others care less. But once informed, there is a choice on offer even today to pay for privacy from commercial business, whether one pays the price by paying a premium for goods if not signed up for loyalty schemes or paying with our privacy.

In future we may see a more direct pay-for-privacy offering along  the lines of Nishat Mehta.

And if so, citizens will be asking ever more about how their data is used in all sorts of places beyond the supermarket.

So how can the state profit from the economic value of our data but not exploit citizens?

‘Every little bit of data’ may help consumer marketing companies.  Gaining it or using it in ways which are unethical and knowingly continue bad practices won’t win back consumers and citizens’ trust.

And whether it is a commercial consumer company or the state, people feel exploited when their information is used to make money without their knowledge and for purposes with which they disagree.

Consumer commercial use and use in bona fide research are separate in the average citizen’s mind and understood in theory.

Achieving differentiation in practice in the definition of research purposes could be key to rebuilding consumers’ trust.

And that would be valid for all their data, not only what data protection labels as ‘personal’. For the average citizen, all data about them is personal.

Separating in practice how consumer businesses are using data about customers to the benefit of company profits, how the benefits are shared on an individual basis in terms of a trade in our privacy, and how bona fide public research benefits us all, would be beneficial to win continued access to our data.

Citizens need and want to be offered paths to see how our data are used in ways which are transparent and easy to access.

Cutting away purposes which appear exploitative from purposes in the public interest could benefit commerce, industry and science.

By reducing the private cost to individuals of the loss of control and privacy of our data, citizens will be more willing to share.

That will create more opportunity for data to be used in the public interest, which will increase the public good; both economic and social which the government hopes to see expand.

And that could mean a happy ending for everyone.

The Economic Value of Data vs the Public Good?  They need not be mutually exclusive. But if one exploits the other, it has the potential to continue be corrosive. The UK plc cannot continue to assume its subjects are willing creators and repositories of information to be used for making money. [ref 1] To do so has lost trust in all uses, not only those in which citizens felt exploited.[6]

The economic value of data used in science and health, whether to individual app creators, big business or the commissioning state in planning and purchasing is clear. Perhaps not quantified or often discussed in the public domain perhaps, but it clearly exists.

Those uses can co-exist with good practices to help people understand what they are signed up to.

By defining ‘research purposes’, by making how data are used transparent, and by giving real choice in practice to consent to differentiated data for secondary uses, both commercial and state will secure their long term access to data.

Privacy, consent and separation of purposes will be wise investments for its growth across commercial and state sectors.

Let’s hope they are part of the coming ‘long-term economic plan’.

****

Related to this:

Part one: The Economic Value of Data vs the Public Good? [1] Concerns and the cost of Consent

Part two: The Economic Value of Data vs the Public Good? [2] Pay-for-privacy and Defining Purposes.

Part three: The Economic Value of Data vs the Public Good? [3] The value of public voice.

****

image via Tesco media

[6] Ipsos MORI research with the Royal Statistical Society into the Trust deficit with lessons for policy makers https://www.ipsos-mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx

[7] AdExchanger Janaury 2015 http://adexchanger.com/data-driven-thinking/the-newest-asset-class-data/

[8] Tesco clubcard data sale http://jenpersson.com/public_data_in_private_hands/  / Computing 14.01.2015 – article by Sooraj Shah: http://www.computing.co.uk/ctg/feature/2390197/what-does-tescos-sale-of-dunnhumby-mean-for-its-data-strategy

[9] Direct Marketing 2013 http://www.dmnews.com/tesco-every-little-bit-of-customer-data-helps/article/317823/

 

On Being Human – moral and material values

The long running rumours of change afoot on human rights political policy were confirmed recently, and have been in the media and on my mind since.

Has human value become not just politically acceptable, but politically valuable?

Paul Bernal in his blog addressed the subject which has been on my mind, ‘Valuing the Human’ and explored the idea, ‘Many people seem to think that there isn’t any value in the human, just in certain kinds of human.’

Indeed, in recent months there appears to be the creation of a virtual commodity, making this concept of human value “not just politically acceptable, but politically valuable.” The concept of the commodity of human value, was starkly highlighted by Lord Freud’s recent comments, on human worth. How much a disabled person should earn was the focus of the remarks, but conflated the price of labour and human value.

European Rights undermined

Given the party policy announcements and the response by others in government or lack of it, it is therefore unsurprising that those familiar with human rights feel they will be undermined in the event that the policy proposals should ever take effect. As the nation gears up into full electioneering mode for May 2015, we have heard much after party speeches, about rights and responsibilities in our dealings with European partners, on what Europe contributes to, or takes away from our sovereignty in terms of UK law. There has been some inevitable back-slapping and generalisation in some quarters that everything ‘Europe’ is bad.

Whether or not our state remains politically within the EU may be up for debate, but our tectonic plates are not for turning. So I find it frustrating when politicians speak of or we hear of in the media, pulling out of Europe’ or similar.

This conflation of language is careless,  but I fear it is also dangerous in a time when the right wing fringe is taking mainstream votes and politicians in by-elections. Both here in the UK and in other European countries this year, far right groups have taken significant votes.

Poor language on what is ‘Europe’ colours our common understanding of what ‘Europe’ means, the nuances of the roles organisational bodies have, for example the differences between the European Court of Human Rights and the European Court of Justice, and their purposes are lost entirely.

The values imposed in the debate are therefore misaligned with the organisations’ duties, and all things ‘European’ and organisations  are tarred with the same ‘interfering’ brush and devalued.

Human Rights were not at their heart created by ‘Europe’ nor are they only some sort of treaty to be opted out from, [whilst many are enshrined in treaties and Acts which were, and are] but their values risk being conflated with the structures which support them.

“A withdrawal from the convention could jeopardise Britain’s membership of the EU, which is separate to the Council of Europe whose members are drawn from across the continent and include Russia and Ukraine. Membership of the Council of Europe is a requirement for EU member states.” [Guardian, October 3rd – in a clearly defined article]

The participation in the infrastructure of ‘Brussels’ however, is convenient to conflate with values; a loss of sovereignty, loss of autonomy, frivoulous legislation. Opting out of a convention should not mean changing our values. However it does seem the party attitude now on show, is seeking to withdraw from the convention. This would mean withdrawing the protections the structure offers. Would it mean withdrawing rights offered to all citizens equally as well?

Ethical values undermined

Although it varies culturally and with few exceptions, I think we do have in England a collective sense of what is fair, and how we wish to treat each others as human beings. Increasingly however, it feels as though through loose or abuse of language in political debate we may be giving ground on our ethics. We are being forced to bring the commodity of human value to the podium, and declare on which side we stand in party politics. In a time of austerity, there is a broad range of ideas how.

Welfare has become branded ‘benefits’. Migrant workers, ‘foreigners’ over here for ‘benefit tourism’. The disabled labeled ‘fit for work’ regardless of medical fact. It appears, increasingly in the UK, some citizens are being measured by their economic material value to contribute or take away from ‘the system’.

I’ve been struck by the contrast coming from 12 years abroad, to find England a place where the emphasis is on living to work, not working to live. If we’re not careful, we see our personal output in work as a measure of our value. Are humans to be measured only in terms of our output, by our productivity, by our ‘doing’ or by our intrinsic value as an individual life? Or simply by our ‘being’? If indeed we go along with the concept, that we are here to serve some sort of productive goal in society on an economic basis, our measurement of value of our ‘doing’, is measured on a material basis.

“We hear political speeches talking about ‘decent, hardworking people’ – which implies that there are some people who are not as valuable.”

I strongly agree with this in Paul’s blog. And as he does, disagree with its value statement.

Minority Rights undermined

There are minorities and segments of society whose voice is being either ignored, or actively quietened. Those on the outer edge of the umbrella ‘society’ offers us, in our collective living, are perhaps least easily afforded its protections. Travelers, those deemed to lack capacity, whether ill, old or young, single parents, or ‘foreign’ workers, to take just some examples.

I was told this week that the UK has achieved a  first. It was said, we are the first ‘first-world’ country under review by the CPRD for human rights abuse of the disabled. Which cannot be confirmed nor denied by the UN but a recent video indicated.

This is appalling in 21st century Britain.

Recently on Radio 4 news I heard of thousands of ESA claimants assigned to work, although their medical records clearly state they are long term unfit.

The group at risk highlighted on October 15th in the Lords, in debate on electoral records’ changes [col 206]  is women in refuges, women who feel at risk. As yet I still see nothing to assure me that measures have been taken to look after this group, here or for care.data.{*}

These are just simplified sample groups others have flagged at risk. I feel these groups’ basic rights are being ignored, because they can be for these minorities. Are they viewed as of less value than the majority of ‘decent, hardworking people’ perhaps, as having less economic worth to the state?

Politicians may say that any change will continue to offer assurances:
“We promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society.”

But I simply don’t see it done fairly for all.

I see society being quite deliberately segmented into different population groups, weak and strong. Some groups need more looking after than others, and I am attentive when I hear of groups portrayed as burdens to society, the rest who are economically ‘productive’.

Indeed we seem to have reached a position in which the default position undermines the rights of the vulnerable, far from offering additional responsibilities to those who should protect them.

This stance features often in the media discussion and in political debate, on health and social care. DWP workfare, JSA, ‘bedroom tax’ to name but a few.


How undermining Rights undermines access

So, as the NHS England five year forward plan was announced recently, I wonder how the plan for the NHS and the visions for the coming 5 year parliamentary terms will soon align?

There is a lot of talking about plans, but more important is what happens as a result not of what we say, but of what we do, or don’t do. Not only for future, but what is already, today.

Politically, socially and economically we do not exist in silos. So too, our human rights which overlap in these areas, should be considered together.

Recent years has seen a steady reduction of rights to access for the most vulnerable in society. Access to a lawyer or judicial review has been made more difficult through charging for it.  The Ministry of Justice is currently pushing for, but losing it seems their quest in the Lords, for changes to the judicial review law.

If you are a working-age council or housing association tenant, the council limits your housing benefit claim if it decides you have ‘spare’ bedrooms. Changes have hit the disabled and their families hardest. These segments of the population are being denied or given reduced access to health, social and legal support.

Ethical Values need Championed

Whilst it appears the state increasingly measures everything in economic value, I believe the public must not lose sight of our ethical values, and continue to challenge and champion their importance.

How we manage our ethics today is shaping our children. What do we want their future to be like? It will also be our old age. Will we by then be measured by our success in achievement, by what we ‘do’, by what we financially achieved in life, by our health, or by who we each are? Or more intrinsically, values judged even, based on our DNA?

Will it ever be decided by dint of our genes, what level of education we can access?

Old age brings its own challenges of care and health, and we are an aging population. Changes today are sometimes packaged as shaping our healthcare fit for the 21st century.

I’d suggest that current changes in medical research and the drivers behind parts of the NHS 5YP vision will shape society well beyond that.

What restrictions do we place on value and how are moral and material values to play out together? Are they compatible or in competition?

Because there is another human right we should remember in healthcare, that of striving to benefit from scientific improvement.

This is an area in which the rights of the vulnerable and the responsibilities to uphold them must be clearer than clear.

In research if Rights are undermined, it may impact Responsibilities for research

I would like to understand how the boundary is set of science and technology and who sets them on what value basis in ethics committees and more. How does it control or support the decision making processes which runs in the background of NHS England which has shaped this coming 5 year policy?

It appears there are many decisions on rare disease, on commissioning,  for example, which despite their terms of reference, see limited or no public minutes, which hinders a transparency of their decision making.

The PSSAG has nothing at all. Yet they advise on strategy and hugely significant parts of the NHS budget.

Already we see fundamental changes of approach which appear to have economic rather than ethical reasons behind them. This in stem-cell banking, is a significant shift for the state away from the absolute belief in the non-commercialisation of human tissue, and yet little public debate has been encouraged.

There is a concerted effort from research bodies, and from those responsible for our phenotype data {*}, to undermine the coming-in-2015, stronger, European data protection and regulation, with attempt to amend EU legislation in line with [less stringent] UK policy. Policy which is questioned by data experts on the use of pseudonymisation for example.

How will striving to benefit from scientific improvement overlap with material values of ‘economic function’ is clear when we hear often that UK Life Sciences are the jewel in the crown of the UK economy? Less spoken of, is how this function overlaps with our moral values.

“We’ve got to change the way we innovate, the way that we collaborate, and the way that we open up the NHS.” [David Cameron, 2011]

An ode to care (dot) data

To be or not to be, that is the question.
O, what men dare do!
Two gentleman of Verona
Measure for measure
and in a Midsummer’s Night’s Dream
And like the baseless fabric of this vision
imagined there would be much ado about nothing.
Mum’s the word!
But this denoted a foregone conclusion.
Open-eyed conspiracy!
Wherefore are these things hid?

Oft expectation fails, and most oft there
Where most it promises.
The plan would be a winter’s tale.
But as you like it
or as not
Damn’d be him that first cries, ‘hold enough’!
These tedious old fools!
The tempest doth make delay.

Will the work done be love’s labour lost?
Will the storm nay be calmed?
Sigh no more, ladies, sigh no more,
Men were deceivers ever.

Would they want that chinks be earned
Gold? Yellow, glittering, precious gold?
No, Gods, I am no idle votarist!
All gold and silver rather turn to dirt!
As ’tis no better reckon’d, but of those
who have want.
“Shylock, we would have moneys,” you say so
the pound of flesh which I demand of him
is dearly bought. ‘Tis mine.

What might be toward, that this sweaty haste
Doth make the night joint-laborer with the day:
Who is’t that can inform me?
Friends, Romans, countrymen, lend me your ears!
Who bare my letter, then, to Romeo?
The letter was not nice but full of charge,
Of dear import, and the neglecting it
May do much danger!

Ignorance is the curse of God;
knowledge is the wing wherewith we fly to heaven.
No legacy is so rich as honesty.

For all this same, I’ll hide me hereabout.
His looks I fear, and his intents I doubt.
And exempt from public haunt,
finds tongues in trees.
You are thought here to the most senseless and fit man for the job.
Alas poor Yorrick
a fellow of infinite jest, of most excellent fancy.
Conscience doth make cowards of us all.

And enterprises of great pitch and moment
With this regard their currents turn awry,
And lose the name of action.
What’s more to do,
Which would be planted newly with the time,
How poor are they that have not patience!
Yet, do thy worst, old Time: despite thy wrong.

Don’t trust the person who has broken faith once?
The quality of mercy is not strain’d
I have spoke thus much
To mitigate the justice of thy plea
If we should fail –
We fail!
But screw your courage to the sticking-place,
And we’ll not fail.
All’s well if all ends well.
Love all, trust a few, do wrong to none.

Now this overdone or come tardy off,
though it make the unskillful laugh,
cannot but make the judicious grieve,
the censure of the which one must in your allowance
o’erweigh a whole theatre of others.

What’s done can’t be undone.
Forget, forgive, conclude, and be agreed: Our doctors say this is no time to bleed.

*****
Words taken in tribute,  from the works of Shakespeare
(23 April 1564 – 23 April 1616). 

All his words, not necessarily in the right order.
Celebrated on the date of the 450th anniversary of his birth, on  Metro considered, what if Shakespeare had Twitter?