Category Archives: NHS

#caredata, care.data, change management, consent, datasharing, engagement, HSCIC, NHS, NHS England, privacy, trust

care.data listening events and consultation: The same notes again?

If lots of things get said in a programme of events, and nothing is left around to read about it, did they happen?

The care.data programme 2014-15 listening exercise and action plan has become impossible to find online. That’s OK, you might think, the programme has been scrapped. Not quite.

You can give your views online until September 7th on the new consultation, “New data security standards and opt-out models for health and social care”  and/or attend the new listening events, September 26th in London, October 3rd in Southampton and October 10th in Leeds.

The Ministerial statement on July 6, announced that NHS England had taken the decision to close the care.data programme after the review of data security and consent by Dame Fiona Caldicott, the National Data Guardian for Health and Care.

But the same questions are being asked again around consent and use of your medical data, from primary and secondary care. What a very long questionnaire asks is in effect,  do you want to keep your medical history private? You can answer only Q 15 if you want.

Ambiguity again surrounds what constitutes “de-identified” patient information.

What is clear is that public voice seems to have been deleted or lost from the care.data programme along with the feedback and brand.

People spoke up in 2014, and acted. The opt out that 1 in 45 people chose between January and March 2014 was put into effect by the HSCIC in April 2016. Now it seems, that might be revoked.

We’ve been here before.  There is no way that primary care data can be extracted without consent without it causing further disruption and damage to public trust and public interest research.  The future plans for linkage between all primary care data and secondary data and genomics for secondary uses, is untenable without consent.

Upcoming events cost time and money and will almost certainly go over the same ground that hours and hours were spent on in 2014. However if they do achieve a meaningful response rate, then I hope the results will not be lost and will be combined with those already captured under the ‘care.data listening events’ responses.  Will they have any impact on what consent model there may be in future?

So what we gonna do? I don’t know, whatcha wanna do? Let’s do something.

Let’s have accredited access and security fixed. While there may now be a higher transparency and process around release, there are still problems about who gets data and what they do with it.

Let’s have clear future scope and control. There is still no plan to give the public rights to control or delete data if we change our minds who can have it or for what purposes. And that is very uncertain. After all, they might decide to privatise or outsource the whole thing as was planned for the CSUs. 

Let’s have answers to everything already asked but unknown. The questions in the previous Caldicott review have still to be answered.

We have the possibility to  see health data used wisely, safely, and with public trust. But we seem stuck with the same notes again. And the public seem to be the last to be invited to participate and views once gathered, seem to be disregarded. I hope to be proved wrong.

Might, perhaps, the consultation deliver the nuanced consent model discussed at public listening exercises that many asked for?

Will the care.data listening events feedback summary be found, and will its 2014 conclusions and the enacted opt out be ignored? Will the new listening event view make more difference than in 2014?

Is public engagement, engagement, if nobody hears what was said?

deregulation, NHS, politics, words

Blue Sky Thinking – Civil Aviation Authority plans to cut medical services – public consultation appears to be tick-box

Updated March 2016: the world class services at the centre have been closed. Class 1 and 3 medical certificates are no longer provided via the aeromedical centre at Gatwick.

The most recent CAA update of January 2016 confirmed that the plans would go ahead despite almost universal objection to many principles and the way it would be done. Unsurprisingly, there were only 15 responses to the 3rd consultation.

CAP 1338 was the third of three documents published by the Civil Aviation Authority in 2014-15, which had only 15 responses. The first two were CAP 1214 (www.caa.co.uk/cap1214)
and CAP 1276 (www.caa.co.uk/cap1276) which includes the 40 original responses to consultation, including major airlines, BALPA, the Honourable Company of Air Pilots (guild founded in 1929), aeromedical doctors and other professionals. All of which objected.

*****

Blog published October 28, 2015:

If government divests the state of our expertise along with our infrastructure, how will we ensure services continue to deliver universal public good?

The NHS is struggling to monitor the safety and efficacy of its services outsourced to private providers, according to a report published in the Independent in April. Now consider an outsourced medical service where the safety and efficacy is reduced, for our commercial airline pilots. #Whatcouldpossiblygowrong?

If you looked very hard at the Civil Aviation Authority’s website over the last year you would be forgiven for missing the links to the consultation to outsource or divest from its medical services. [1]  This is the service organisation of 30 or so staff who ensure in a part state owned set up, that newly qualifying pilots for commercial airlines and air traffic controllers are fit for the job. And not only British pilots, but others come from outside the country, so great is its reputation. It is the last state-owned of 4 such centres, and based at Gatwick.

Pilots have unique needs and unique fitness-to-fly checks to pass, as documented by Aida Edemariam in last weekend’s Guardian: “The medicals especially, Bor says, mean facing “the risk of losing one’s job… as often as every six months”.”

The initial consultation, now a year ago, suggested outsourcing the service to the private sector. Today it seems the prefered path is complete divestment from the delivery of its services. The second part of the seemingly tick-box exercise closed today. [5]

Tick-box, because the plans are going ahead despite almost every response to the consultation voicing concerns or serious questions, including from major airlines. Balpa at the time hadn’t been able to adequately respond in the original Oct-Dec 2014 timeframe. Many other suggestions and ideas were raised, but from the CAA consultation response to criticisms it seemed blue-sky thinking, creative alternative solutions differing from the CAA plans, was not welcomed.

It seems that in a bid to become lean, akin to having less to pay for on the balance sheet, the government is selling off not only concrete assets but losing British state-led skills in services at which we excel. It is asking commercial companies to fill the gap and many question if there is sufficient expertise in the commercial market to deliver.

There are five key concerns here. The first, is that without the state to hold accountable for the service, airlines and pilots must foot the bill they can no longer control, in a near monopoly market. Elsewhere in health, spending on outsourcing these services has  reportedly rocketed.

The second, is quality control. How will quality of delivery be maintained for services which operate entirely for the benefit of the public good, but are now be required to turn a profit?

And the third is continuity of service. How will the universality of these services be maintained, offered fairly and to whom?

The fourth is whether the UK should sacrifice its unique leadership position of respected medical expertise in European and global flight safety?

And finally and most importantly, pilots, airlines, and healthcare professionals questioned in the last quarter of 2014 whether safety may be put at risk if the cost cutting move at the Civil Aviation Authority goes ahead.

This cut to regulatory oversight is part of the bonfire of red tape.

Responding to plans outlined by the Civil Aviation Authority in a public consultation [1] last autumn, professionals overwhelmingly suggested service improvements could be made without outsourcing what one airline called “the priceless nerve centre of expertise in the CAA”.

Based at the CAA’s Gatwick headquarters, the aeromedical centre offers the initial medical examinations required for commercial airline pilot and air traffic controllers and periodic checks thereafter. It also undertakes assessments of the fitness of pilots to return to flying after illness.

“All pilots who hold a commercial licence undergo an annual Class 1 medical assessment with an Aeromedical Examiner, increasing to every six months from the age of 60, or 40 if they are undertaking single pilot operations. [source: whatdotheyknow.com ]
The CAA expects to reduce overall costs by outsourcing all of its aeromedical non-mandatory functions, outlined in consultation plans that were discussed with potential providers at meetings in mid April. [2] But unions suggested the CAA is putting commercial pressures before the public interest and denounced the plans.

Steve Jary, Prospect national officer for aviation, said:

“The CAA executive board needs to listen and put safety, not commercial interests at the heart of its decision making.”

In its follow up consultation response in early 2015, the CAA said it does not believe in putting a price on public safety and it realised that cost and value are sensitive issues.

The national value of excellent medical services to pilots in any business model on paper however, may be impossible to put a price on in practice. It was especially sensitive earlier this year as the plans for change coincided with the climate of raised passenger awareness following the Germanwings flight 9525 on March 24.

Long before this, in response to the October 2014 consultation, the Honourable Company of  Air Pilots, a professional guild, wrote:

“As long as human pilots are part of the aviation safety chain, it is essential that their fitness to operate is monitored and supported by an expert community without fear of or bias from commercial pressures.”

Lacking in detailed financial analysis it is hard to see from the consultation how alternative solutions measure up against private provision. Specifically there was no estimate in the document of the cost of the CAA meeting its statutory obligations. [3]

One of the three airlines that responded in consultation, suggested the CAA could be seen to be outsourcing the commercially viable part of the service:

“The Aeromedical centre only seems to account for £500k out of the £3 million …and could potentially be seen as the most profitable element.”

By contracting out to a commercial provider, and introducing the need to make a profit, some respondents are concerned it would further increase costs to industry or individuals, and the CAA acknowledged this. Fees could potentially rise in what will be effectively a monopoly market, as in April there were only three other approved providers for this service, across all of the UK. Two are already operated by the same public private partnership and although part owned by government, are essentially commercially run.

Free from Treasury control, the Civil Aviation Authority is self-funding but sits under the wing of the Department of Transport, accountable to the Secretary of State for Transport. [4] But Government support was questioned by a pilot in the consultation, who wrote:

“If the CAA and the Department for Transport cannot resolve this without destroying the CAA medical service then we might as well pack it all in.”

Pressure has reportedly come from EASA, the European Aviation Safety Agency to follow regulatory best practices and separate the duties of the authority from the delivery of services.

However a group representing 15 CAA (UK) approved medical examiners, with a mean of 22 years experience, suggested this regulatory issue could be resolved in other ways, and said:

“Outsourcing any part of the medical department would remove essential functions, weakening the ability to respond to or promote future regulatory changes.

“Fragmentation will introduce inefficiency as work which should be integrated will be on at least two sites – never helpful.”

The medical service provided by the CAA is recognised as a market leader across Europe. It influences European and worldwide aeromedical policy and as one airline wrote in the consultation, has “rebuffed some of the more non evidence based demands of the European Aviation Safety Agency.”

Maintaining that globally respected expertise, say the CAA plans, is a third reason for redesigning a medical department fit for the future but many respondents believe that outsourcing will achieve the opposite.

The Honourable Company of  Air Pilots suggested the plans would have:

“an adverse impact on flight safety and diminish unacceptably the UK’s aviation medicine competency, research capability and global reputation for excellence and leadership.”

Headcount of currently over 30 full time equivalent staff could be reduced to eight if outsourcing plans go ahead and the service operates at its minimum regulatory duties.

Last year’s preparations for the outsourcing included an event in May open to providers through the NHS Partner’s Network of the NHS Confederation at which one was an NHS provider, but all others were private sector contracting organisations.

The Public and Commercial Services Union believes there is no provider which could fill the gap if the CAA stops providing its services in the current form. They said:

“We are requesting that this consultation be halted and consultation commences with the recognised trade unions on options within this paper to retain all existing services in-house.”

In April, the CAA said: “We are continuing to explore options for the future provision of medical services. Safety remains our number one priority and we will ensure that any changes that are made will be designed to enhance the UK’s excellent safety record. All medical requirements relating to pilots are set at international level and regulated nationally and will remain in force and unchanged regardless of any decisions relating to the provision of medical services in the future.”

Mr Haines,  explained at the April Board Meeting that “there would be a further discussion at the Board on the outcome of the CAA’s medical review consultation.” What that was is yet to be published. Transparency has not been the board’s strongest point in 2015.

Consultations are about allowing the public a chance to participate in democratic processes in order to play their part in determining the outcome. This consultation appears to have changed little of the plans.

There should be public debate around what we need our service institutions for, what value we place on a universal public good where cost and benefit cannot be personalised, and where change requires meaningful public consultation.  These changes are too important to be reserved for niche interested parties or for them to be a tick box exercise in which the planned outcome goes ahead regardless of the majority feedback. Public consultation in its present form, appears to offer little in the way of checks and balances in today’s democracy. Some are described as farcical.

Changes made in the public interest should be transparent, accountable, and robust to stand up to meaningful challenge.

As the Treasury seems set on its course, I wonder if they are using blue sky thinking to divest from our wealth of knowledge, staff and skills wisely, or plucking justification for ideology out of thin air?

###

References:

[1] Responses to consultation on the future structure of the CAA’s Medical Department: http://www.caa.co.uk/docs/33/CAP%201276%20Future%20structure%20of%20CAA%20Medical%20Department.pdf

[2] The prior information notice: http://ted.europa.eu/udl?uri=TED:NOTICE:99734-2015:TEXT:EN:HTML  (not yet a full tender notice)

[3] Financial detail limited: https://www.caa.co.uk/default.aspx?catid=1350&pagetype=90&pageid=16369

[4] CAA independent but accountable to Department of Transport http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2014-09-10/209031

[5] Autumn 2015 consultation part two

#caredata, care.data, HSCIC, NHS, NHS England

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.

*******

[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 https://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)

***

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

 

#caredata, care.data, change, empowerment, engagement, NHS, NHS England, surveillance, transparency

Digital revolution by design: building for change and people (1)

Andy Williams said* that he wants not evolution, but a revolution in digital health.

It strikes me that few revolutions have been led top down.

We expect revolution from grass roots dissent, after a growing consensus in the population that the status quo is no longer acceptable.

As the public discourse over the last 18 months about the NHS use of patient data has proven, we lack a consensual agreement between state, organisations and the public how the data in our digital lives should be collected, used and shared.

The 1789 Declaration of the Rights of Man and Citizen as part of the French Revolution set out a charter for citizens, an ethical and fair framework of law in which they trusted their rights would be respected by fellow men.

That is something we need in this digital revolution.

We are told hand by government that it is necessary to share all our individual level data in health from all sorts of sources.

And that bulk data collection is vital in the public interest to find surveillance knowledge that government agencies want.

At the same time other government departments plan to restrict citizens’ freedom of access to knowledge that could be used to hold the same government  and civil servants to account.

On the consumer side, there is public concern about the way we are followed around on the web by companies including global platforms like Google and Facebook, that track our digital footprint to deliver advertising.

There is growing objection to the ways in which companies scoop up data to build profiles of individuals and groups and personalising how they get treated. Recent objection was to marketing misuse by charities.

There is little broad understanding yet of the power of insight that organisations can now have to track and profile due to the power of algorithms and processing capability.

Technology progress that has left legislation behind.

But whenever you talk to people about data there are two common threads.

The first, is that although the public is not happy with the status quo of how paternalistic organisations or consumer companies ‘we can’t live without’ manage our data, there is a feeling of powerlessness that it can’t change.

The second, is frustration with organisations that show little regard for public opinion.

What happens when these feelings both reach tipping point?

If Marie Antoinette were involved in today’s debate about the digital revolution I suspect she may be the one saying: “let them eat cookies.”

And we all know how that ended.

If there is to be a digital revolution in the NHS where will it start?

There were marvelous projects going on at grassroots discussed over the two days: bringing the elderly online and connected and in housing and deprivation. Young patients with rare diseases are designing apps and materials to help consultants improve communications with patients.

The NIB meeting didn’t have real public interaction and or any discussion of those projects ‘in the room’ in the 10 minutes offered. Considering the wealth of hands-on digital health and care experience in the audience it was a missed opportunity for the NIB to hear common issues and listen to suggestions for co-designed solutions.

While white middle class men (for the most part) tell people of their grand plans from the top down, the revolutionaries of all kinds are quietly getting on with action on the ground.

If a digital revolution is core to the NHS future, then we need to ask to understand the intended change and outcome much more simply and precisely.

We should all understand why the NHS England leadership wants to drive change, and be given proper opportunity to question it, if we are to collaborate in its achievement.

It’s about the people, stoopid

Passive participation will not be enough from the general public if the revolution is to be as dramatic as it is painted.

Consensual co-design of plans and co-writing policy are proven ways to increase commitment to change.

Evidence suggests citizen involvement in planning is more likely to deliver success. Change done with, not to.

When constructive solutions have been offered what impact has engagement if no change is made to any  plans?

If that’s engagement, you’re doing it wrong.

Struggling with getting themselves together on the current design for now, it may be hard to invite public feedback on the future.

But it’s only made hard if what the public wants is ignored.  If those issues were resolved in the way the public asked for at listening events it could be quite simple to solve.

The NIB leadership clearly felt nervous to have debate, giving only 10 minutes of three hours for public involvement, yet that is what it needs. Questions and criticism are not something to be scared of, but opportunities to make things better.

The NHS top-down digital plans need public debate and dissected by the clinical professions to see if it fits the current and future model of healthcare, because if not involved in the change, the ride will be awfully bumpy to get there.

For data about us, to be used without us, is certainly an outdated model incompatible with a digital future.

The public needs to fight for citizen rights in a new social charter that demands change along lines we want, change that doesn’t just talk of co-design but that actually means it.

If unhappy about today’s data use, then the general public has to stop being content to be passive cash cows as we are data mined.

If we want data used only for public benefit research and not market segmentation, then we need to speak up. To the Information Commissioner’s Office if the organisation itself will not help.

“As Nicole Wong, who was one of President Obama’s top technology advisors, recently wrote, “[t]here is no future in which less data is collected and used.”

“The challenge lies in taking full advantage of the benefits that the Internet of Things promises while appropriately protecting consumers’ privacy, and ensuring that consumers are treated fairly.” Julie Brill, FTC, May 4 2015, Berlin

In the rush to embrace the ‘Internet of Things’ it can feel as though the reason for creating them has been forgotten. If the Internet serves things, it serves consumerism. AI must tread an enlightened path here. If the things are designed to serve people, then we would hope they offer methods of enhancing our life experience.

In the dream of turning a “tsunami of data” into a “tsunami of actionable business intelligence,” it seems all too often the person providing the data is forgotten.

While the Patient and Information Directorate, NHS England or NIB speakers may say these projects are complex and hard to communicate the benefits, I’d say if you can’t communicate the benefits, its not the fault of the audience.

People shouldn’t have to either a) spend immeasurable hours of their personal time, understanding how these projects work that want their personal data, or b) put up with being ignorant.

We should be able to fully question why it is needed and get a transparent and complete explanation. We should have fully accountable business plans and scrutiny of tangible and intangible benefits in public, before projects launch based on public buy-in which may misplaced. We should expect  plans to be accessible to everyone and make documents straightforward enough to be so.

Even after listening to a number of these meetings and board meetings, I am  not sure many would be able to put succinctly: what is the NHS digital forward view really? How is it to be funded?

On the one hand new plans are to bring salvation, while the other stops funding what works already today.

Although the volume of activity planned is vast, what it boils down to, is what is visionary and achievable, and not just a vision.

Digital revolution by design: building for change and people

We have opportunity to build well now, avoiding barriers-by-design, pro-actively designing ethics and change into projects, and to ensure it is collaborative.

Change projects must map out their planned effects on people before implementing technology. For the NHS that’s staff and public.

The digital revolution must ensure the fair and ethical use of the big data that will flow for direct care and secondary uses if it is to succeed.

It must also look beyond its own bubble of development as they shape their plans in the ever changing infrastructures in which data, digital, AI and ethics will become important to discuss together.

That includes in medicine.

Design for the ethics of the future, and enable change mechanisms in today’s projects that will cope with shifting public acceptance, because that shift has already begun.

Projects whose ethics and infrastructures of governance were designed years ago, have been overtaken in the digital revolution.

Projects with an old style understanding of engagement are not fit-for-the-future. As Simon Denegri wrote, we could have 5 years to get a new social charter and engagement revolutionised.

Tim Berners-Lee when he called for a Magna Carta on the Internet asked for help to achieve the web he wants:

“do me a favour. Fight for it for me.”

The charter as part of the French Revolution set out a clear, understandable, ethical and fair framework of law in which they trusted their rights would be respected by fellow citizens.

We need one for data in this digital age. The NHS could be a good place to start.

****

It’s exciting hearing about the great things happening at grassroots. And incredibly frustrating to then see barriers to them being built top down. More on that shortly, on the barriers of cost, culture and geography.

****

* at the NIB meeting held on the final afternoon of the Digital Conference on Health & Social Care at the King’s Fund, June 16-17.

NEXT>>
2. Driving Digital Health: revolution by design
3. Digital revolution by design: building infrastructure

Refs:
Apps for sale on the NHS website
Whose smart city? Resident involvement
Data Protection and the Internet of Things, Julie Brill FTC
A Magna Carta for the web

#caredata, care.data, change management, consent, NHS, NHS England

Reputational risk. Is NHS England playing a game of public confidence?

“By when will NHS England commit to respect the 700,000 objections  [1] to secondary data sharing already logged* but not enacted?” [gathered from objections to secondary uses in the care.data rollout, Feb 2014*]

Until then, can organisations continue to use health data held by HSCIC for secondary purposes, ethically and legally, or are they placing themselves at reputational risk?

If HSCIC continues to share, what harm may it do to public confidence in data sharing in the NHS?

I should have asked this explicitly of the National Information Board (NIB) June 17th board meeting [2], that rode in for the last 3 hours of the two day Digital Health and Care Congress at the King’s Fund.

But I chose to mention it only in passing, since I assumed it is already being worked on and a public communication will follow very soon. I had lots of other constructive things I wanted to hear in the time planned for ‘public discussion’.

Since then it’s been niggling at me that I should have asked more directly, as it dawned on me watching the meeting recording and more importantly when reading the NIB papers [3], it’s not otherwise mentioned. And there was no group discussion anyway.

Mark Davies. Director at UK Department of Health talked in fairly jargon-free language about transparency. [01:00] I could have asked him when we will see more of it in practice?

Importantly, he said on building and sustaining public trust, “if we do not secure public trust in the way that we collect store and use their personal confidential data, then pretty much everything we do today will not be a success.”

So why does the talk of securing trust seem at odds with the reality?

Evidence of Public Voice on Opt Out

Is the lack of action based on uncertainty over what to do?

Mark Davies also said “we have only a sense” and we don’t have “a really solid evidence base” of what the public want. He said, “people feel slightly uncomfortable about data being used for commercial gain.” Which he felt was “awkward” as commercial companies included pharma working for public good.

If he has not done so already, though I am sure he will have, he could read the NHS England own care.data listening feedback. People were strongly against commercial exploitation of data. Many were livid about its use. [see other care.data events] Not ‘slightly uncomfortable.’  And they were able to make a clear distinction between uses by commercial companies they felt in the public interest, such as bona fide pharma research and the differences with consumer market research, even if by the same company.  Risk stratification and commissioning does not need, and should not have according to the Caldicott Review [8], fully identifiable individual level data sharing.

Uses are actually not so hard to differentiate. In fact, it’s exactly what people want. To have the choice to have their data used only for direct care  or to choose to permit sharing between different users, permitting say, bona fide research.  Or at minimum, possible to exclude commercially exploitative uses and reuse. To enable this would enable more data sharing with confidence.

I’d also suggest there is a significant evidence base gathered in the data trust deficit work from the Royal Statistical Society, a poll on privacy for the Joseph Rowntree Foundation, and work done for the ADRN/ESRC. I’m sure he and the NIB are aware of these projects, and Mark Davies said himself more is currently being done with the Nuffield Trust.

Work with almost 3,000 young for the Royal Academy of Engineering people confirmed what those interested in privacy know, but is the opposite of what is often said about young people and privacy – they care and want control:

youngpeople_privacy

NHS England has itself further said it has held ‘over 180’ listening events in 2014 and feedback was consistent with public letters to papers, radio phone-ins and news reports in spring 2014.

Don’t give raw data out, exclude access to commercial companies not working in the public interest, exclude non-bona fide research use and re-use licenses, define the future purposes, improve legal protection including the opt out and provide transparency to trust.

How much more evidence does anyone need to have of public understanding and feeling, or is it simply that NHS England and the DH don’t like the answers given? Listening does not equal heard.

Here’s some of NHS England’s own slides – [4] points included a common demand from the public to give the opt out legal status:

legal

 

Opt out needs legal status

Paul Bate talked about missing pieces of understanding on secondary uses, for [56:00] [3] “Commissioners, researchers, all the different regulators.” He gave an update, which assumed secondary use of data as the norm.

But he missed out any mention of the perceived cost of loss of confidentiality, and loss of confidence since the failure to respect the 9nu4 objections made in the 2014 aborted care.data rollout. That’s not even mentioning that so many did not even recall getting a leaflet, so those 700,00K came from the most informed.

When the public sees their opt out is not respected they lose trust in the whole system of data sharing. Whether for direct care, for use by an NHS organisation, or by any one of the many organisations vying to manage their digital health interaction and interventions. If someone has been told data will not be shared with third parties and it is, why would they trust any other governance will be honoured?

By looking back on the leadership pre- care.data flawed thinking ‘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’ and its resulting disastrous attempt to rollout without communication and then a second at fair processing, lessons learned should inform future projects. That includes care.data mark 2. This < is simply daft.

“You can object and your data will not be extracted and you can make no contribution to society,“ Mr. Kelsey answered a critic on twitter in 2014 and revealed that his thinking really hasn’t changed very much, even if he has been forced to make concessions. I should have said at #kfdigital15, ignoring what the public wants is not your call to make.

What legal changes will be made that back up the verbal guarantees given since February? If none are forthcoming, then were the statements made to Parliament untrue? 

“people should be able to opt out from having their anonymised data used for the purposes of scientific research.” [Hunt, 2014]

We are yet to see this legal change and to date, the only publicly stated choice is only for identifiable data, not all data for secondary purposes including anonymous, as offered by the Minister in February 2014, and David Cameron in 2010.

If Mark Davies is being honest about how important he feels trust is to data sharing, implementing the objection should be a) prioritised and b) given legal footing.optout_ppt

 

Risks and benefits : need for a new social contract on Data

Simon Denegri recently wrote [5] he believes there are “probably five years to sort out a new social contract on data in the UK.”

I’d suggest less, if high profile data based projects or breaches irreparably damage public trust first, whether in the NHS or consumer world. The public will choose to share increasingly less.

But the public cannot afford to lose the social benefits that those projects may bring to the people who need them.

Big projects, such as care.data, cannot afford for everyone’s sake to continue to repeatedly set off and crash.

Smaller projects, those planned and in progress by each organisation and attendee at the King’s Fund event, cannot afford for those national mistakes to damage the trust the public may otherwise hold in the projects at local level.

I heard care.data mentioned five different times over the two-day event  in different projects as having harmed the project through trust or delays. We even heard examples of companies in Scotland going bust due to rollouts with slowed data access and austerity.

Individuals cannot afford for their reputation to be harmed through association, or by using data in ways the public finds unreasonable and get splashed across the front page of the Telegraph.

Clarity is needed for everyone using data well whether for direct care with implied consent, or secondary uses without it, and it is in the public interest to safeguard access to that data.

A new social contract on data would be good all round.

Reputational Risk

The June 6th story of the 700,000 unrespected opt outs has been and gone. But the issue has not.

Can organisations continue to use that data ethically and legally knowing it is explicitly without consent?

“When will those objections be implemented?” should be a question that organisations across the country are asking – if reputational risk is a factor in any datasharing decision making – in addition to the fundamental ethical principle: can we continue to use the data from an individual from whom we know consent was not freely given and was actively withheld?

What of projects that use HES or hospital secondary care sites’ submitted data and rely on the HSCIC POM mechanisms? How do those audits or other projects take HES secondary objections into account?

Sir Nick Partridge said in the April 2014 HSCIC HES/SUS audit there should be ‘no surprises’ in future.

That future is now. What has NHS England done since to improve?

“Consumer confidence appears to be fragile and there are concerns that future changes in how data may be collected and used (such as more passive collection via the Internet of Things) could test how far consumers are willing to continue to provide data.” [CMA Consumer report] [6]

The problem exists across both state and consumer data sharing. It is not a matter of if, but when, these surprises are revealed to the public with unpredictable degrees of surprise and revulsion, resulting in more objection to sharing for any purposes at all.

The solutions exist: meaningful transparency, excluding commercial purposes which appear exploitative, consensual choices, and no surprises. Shape communications processes by building-in future change to today’s programmes to future proof trust.

Future-proofing does not mean making a purpose and use of data so vague as to be all encompassing – exactly what the public has said at care.data listening events they do not want and will not find sufficient to trust nor I would argue, would it meet legally adequate fair processing – it must build and budget for mechanisms into every plan today, to inform patients of the future changes to use or users of data already gathered, and offer them a new choice to object or consent. And they should have a way to know who used what.

The GP who asked the first of the only three questions that were possible in 10 minutes Q&A from the room, had taken away the same as I had: the year 2020 is far too late as a public engagement goal. There must be much stronger emphasis on it now. And it is actually very simple. Do what the public has already asked for.

The overriding lesson must be, the person behind the data must come first. If they object to data being used, that must be respected.

It starts with fixing the opt outs. That must happen. And now.

Public confidence is not a game [7]. Reputational risk is not something organisations should be forced to gamble with to continue their use of data and potential benefits of data sharing.

If NHS England, the NIB or Department of Health know how and when it will be fixed they should say so. If they don’t, they better have a darn good reason why and tell us that too.

‘No surprises’, said Nick Partridge.

The question decision makers must address for data management is, do they continue to be part of the problem or offer part of the solution?

******

References:

[1]The Telegraph, June 6th 2015 http://www.telegraph.co.uk/news/health/news/11655777/Nearly-1million-patients-could-be-having-confidential-data-shared-against-their-wishes.html

[2]  June 17th NIB meeting http://www.dh-national-information-board.public-i.tv/core/portal/webcast_interactive/180408

[3] NIB papers / workstream documentation https://www.gov.uk/government/publications/plans-to-improve-digital-services-for-the-health-and-care-sector

[4] care.data listening feedback http://www.england.nhs.uk/wp-content/uploads/2015/01/care-data-presentation.pdf

[5] Simon Denegri’s blog http://simondenegri.com/2015/06/18/is-public-involvement-in-uk-health-research-a-danger-to-itself/

[6] CMA findings on commercial use of consumer data https://www.gov.uk/government/news/cma-publishes-findings-on-the-commercial-use-of-consumer-data

[7] Data trust deficit New research finds data trust deficit with lessons for policymakers: http://www.statslife.org.uk/news/1672-new-rss-research-finds-data-trust-deficit-with-lessons-for-policymakers

[8] Caldicott review: information governance in the health and care system

#caredata, care.data, change management, comm consent, commercial, communications, confidentiality, engagement, NHS, NHS England, transparency

Are care.data pilots heading for a breech delivery?

Call the midwife [if you can find one free, the underpaid overworked miracle workers that they are], the care.data ‘pathfinder’ pilots are on their way! [This is under a five minute read, so there should be time to get the hot water on – and make a cup of tea.]

I’d like to be able to say I’m looking forward to a happy new arrival, but I worry care.data is set for a breech birth. Is there still time to have it turned around? I’d like to say yes, but it might need help.

The pause appears to be over as the NHS England board delegated the final approval of directions to their Chair, Sir Malcolm Grant and Chief Executive, Simon Stevens, on Thursday May 28.

Directions from NHS England which will enable the HSCIC to proceed with their pathfinder pilots’ next stage of delivery.

“this is a programme in which we have invested a great deal, of time and thought in its development.” [Sir Malcolm Grant, May 28, 2015, NHS England Board meeting]

And yet. After years of work and planning, and a 16 month pause, as long as it takes for the gestation of a walrus, it appears the directions had flaws. Technical fixes are also needed before the plan could proceed to extract GP care.data and merge it with our hospital data at HSCIC.

And there’s lots of unknowns what this will deliver.**

Groundhog Day?

The public and MPs were surprised in 2014. They may be even more surprised if 2015 sees a repeat of the same again.

We have yet to hear case studies of who received data in the past and would now be no longer eligible. Commercial data intermediaries? Can still get data, the NHS Open Day was told. And they do, as the HSCIC DARS meeting minutes in 2015 confirm.

By the time the pilots launch, the objection must actually work, communications must include an opt out form and must clearly give the programme a name.

I hope that those lessons have been learned, but I fear they have not been. There is still lack of transparency. NHS England’s communications materials and May-Oct 2014 and any 2015 programme board minutes have not been published.

We have been here before.

Back to September 2013: the GPES Advisory Committee, the ICO and Dame Fiona Caldicott, as well as campaigners and individuals could see the issues in the patient leaflet and asked for fixes.The programme went ahead anyway in February 2014 and although foreseen, failed to deliver. [For some, quite literally.]

These voices aren’t critical for fun, they call for fixes to get it right.

I would suggest that all of the issues raised since April 2014, were broadly known in February 2014 before the pause began. From the public listening exercise,  the high level summary captures some issues raised by patients, but doesn’t address their range or depth.

Some of the difficult and unwanted  issues, are still there, still the same and still being ignored, at least in the public domain. [4]

A Healthy New Arrival?

How is the approach better now and what happens next to proceed?

“It seems a shame,” the Walrus said, “To play them such a trick, After we’ve brought them out so far, And made them trot so quick!” [Lewis Carroll]

When asked by a board member: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach? it wasn’t very clear. [full detail end of post]

First they must pass the tests asked of them by Dame Fiona [her criteria and 27 questions from before Christmas.] At least that was what the verbal background given at the board meeting explained.

If the pilots should be a dip in the water of how national rollouts will proceed, then they need to test not just for today, but at least for the known future of changing content scope and expanding users – who will pay for the communication materials’ costs each time?

If policy keeps pressing forward, will it not make these complications worse under pressure? There may be external pressure ahead as potential changes to EU data protection are expected this year as well, for which the pilot must be prepared and design in advance for the expectations of best practice.

Pushing out the pathfinder directions, before knowing the answers to these practical things and patient questions open for over 16 months, is surely backwards. A breech birth, with predictable complications.

If in Sir Malcolm Grant’s words:

“we would only do this  if we believed it was absolutely critical in the interests of patients.” [Malcom Grant, May 28, 2015, NHS England Board meeting]

then I’d like to see the critical interest of patients put first. Address the full range of patient questions from the ‘listening pause’.

In the rush to just fix the best of a bad job, we’ve not even asked are we even doing the right thing? Is the system designed to best support doctor patient needs especially with the integration “blurring the lines” that Simon Stevens seems set on.

If  focus is on the success of the programme and not the patient, consider this: there’s a real risk too many opt out due to these unknowns. And lack of real choice on how their data gets used. It could be done better to reduce that risk.

What’s the percentage of opt out that the programme deems a success to make it worthwhile?

In March 2014, at a London event, a GP told me all her patients who were opting out were the newspaper reading informed, white, middle class. She was worried that the data that would be included, would be misleading and unrepresentative of her practice in CCG decision making.

medConfidential has written a current status for pathfinder areas that make great sense to focus first on fixing care.data’s big post-election question the opt out that hasn’t been put into effect. Of course in February 2014 we had to choose between two opt outs -so how will that work for pathfinders?

In the public interest we need collectively to see this done well. Another mis-delivery will be fatal. “No artificial timelines?”

Right now, my expectations are that the result won’t be as cute as a baby walrus.

******

Notes from the NHS England Board Meeting, May 28, 2015:

TK said:  “These directions [1] relate only to the pathfinder programme and specify for the HSCIC what data we want to be extracted in the event that Dame Fiona, this board and the Secretary of State have given their approval for the extraction to proceed.

“We will be testing in this process a public opt out, a citizen’s right to opt out, which means that, and to be absolutely clear if someone does exercise their right to opt out, no clinical data will be extracted from their general practice,  just to make that point absolutely clearly.

“We have limited access to the data, should it be extracted at the end of the pathfinder phase, in the pathfinder context to just four organisations: NHS England, Public Health England, the HSCIC and CQC.”

“Those four organisations will only be able to access it for analytic purposes in a safe, a secure environment developed by the Information Centre [HSCIC], so there will be no third party hosting of the data that flows from the extraction.

“In the event that Dame Fiona, this board, the Secretary of State, the board of the Information Centre, are persuaded that there is merit in the data analysis that proceeds from the extraction, and that we’ve achieved an appropriate standard of what’s called fair processing, essentially have explained to people their rights, it may well be that we proceed to a programme of national rollout, in that case this board will have to agree a separate set of directions.”

“This is not signing off anything other than a process to test communications, and for a conditional approval on extracting data subject to the conditions I’ve just described.”

CD said: “This is new territory, precedent, this is something we have to get right, not only for the pathfinders but generically as well.”

“One of the consequences of having a pathfinder approach, is as Tim was describing, is that directions will change in the future. So if we are going to have a truly fair process , one of the things we have to get right, is that for the pathfinders, people understand that the set of data that is extracted and who can use it in the pathfinders, will both be a subset of, the data that is extracted and who can use it in the future. If we are going to be true to this fair process, we have to make sure in the pathfinders that we do that.

“For example, at the advisory group last week, is that in the communication going forward we have to make sure that we flag the fact there will be further directions, and they will be changed, that we are overt in saying, subject to what Fiona Caldicott decides, that process itself will be transparent.”

Questions from Board members:
Q: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach?
What are the top three objectives we seek to achieve?

TK: So, Dame Fiona has set a series of standards she expects the pathfinders to demonstrate, in supporting GPs to be able to discharge this rather complex communication responsibility, that they have under the law  in any case.

“On another level how we can demonstrate that people have adequately understood their right to opt out [..]

“and how do we make sure that populations who are relatively hard to reach, although listed with GPs, are also made aware of their opportunity to opt out.

Perhaps it may help if I forward this to the board, It is in the public domain. But I will forward the letter to the board.”

“So that lays out quite a number of specific tangible objectives that we then have to evaluate in light of the pathfinder experience. “

Chair: “this is a programme in which we have invested a great deal, of time and thought in its development, we would only do this  if we believed it was absolutely critical in the interests of patients, it was something that would give us the information the intelligence that we need to more finely attune our commissioning practice, but also to get real time intelligence about how patients lives are lived, how treatments work and how we can better provide for their care.

“I don’t think this is any longer a matter of huge controversy, but how do we sensitively attune ourselves to patient confidentiality.”

“I propose that […] you will approve in principle the directions before you and also delegate to the Chief Executive and to myself to do final approval on behalf of the board, once we have taken into account the comments from medConfidential and any other issues, but the substance will remain unchanged.”

******

[4] request for the release of June 2014 Open House feedback still to be published in the hope that the range and depth of public questions can be addressed.

care.data comms letter

******
“The time has come,” the walrus said, “to talk of many things.”
[From ‘The Walrus* and the Carpenter’ in Through the Looking-Glass by Lewis Carroll]

*A walrus has a gestation period of about 16 months.
The same amount of time which the pause in the care.data programme has taken to give birth to the pathfinder sites.

references:
[1] NHS England Directions to HSCIC: May 28 2015 – http://www.england.nhs.uk/wp-content/uploads/2015/05/item6-board-280515.pdf
[2] Notes from care.data advisory group meeting on 27th February 2015
[3] Patient questions: https://jenpersson.com/pathfinder/
[4] Letter from NHS England in response to request from September, and November 2014 to request that public questions be released and addressed

15 Jan 2024: Image section in header replaced at the request of likely image tracing scammers who don’t own the rights and since it and this blog is non-commercial would fall under fair use anyway. However not worth the hassle. All other artwork on this site is mine.

#caredata, care.data, change management, leadership, mental health, NHS, NHS England

Thoughts on Digital Participation and Health Literacy: Opportunities for engaging citizens in the NHS [#NHSWDP 1]

“..smartphones […] the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

That’s what Simon Stevens said at a meeting on “digital participation and health literacy: opportunities for engaging citizens” in the National Health Service this week, at the King’s Fund in London.

It seemed a passing comment, but its enormity from the Chief Executive of the commissioning body for the NHS, made me catch my breath.

Other than inspiration from the brilliance of Helen Milner, Chief Executive of the Tinder Foundation – the only speaker who touched on the importance of language around digital participation – what did I take away from the meeting?

The full text of Simon Steven’s speech is below at the end of this post, but he didn’t elaborate further on this comment.

Where to start?

The first thing I took away to think about, was the impact of the statement. 

“the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

So I thought about that more in a separate post, part two.

The second, was on consent.

This tied into the statement by Tim Kelsey, Director of Patients and Information at NHS England. It seems that the era when consent will be king is fast approaching, and I thought about this more in part three.

The third key learning I had of the day, which almost everyone I met voiced to me was, that the “best bit of these events is the learnings outside the sessions, from each other. From other people you meet.”

That included Roger who we met via video. And GP Dr Ollie Hart. All the tweeps I’ve now met in real life, and as Roz said, didn’t disappoint. People with experience and expertise in their fields. All motivated to make things better and make things work, around digital, for people.

Really important when thinking about ‘digital’ it doesn’t necessarily mean remote or reduce the people-time involved.

Change happens through people. Not necessarily seen as ‘clients’ or ‘consumers’ or even ‘customers’. How human interaction is supported by or may be replaced by digital contact fascinates me.

My fourth learning? was about how to think about data collection and use in a personalised digital world.

Something which will be useful in my new lay role on the ADRN approvals panel (which I’m delighted to take on and pretty excited about).

Data collection is undergoing a slow but long term sea change, in content, access, expectations, security & use.

Where, for who, and from whom data is collected varies enormously. It’s going to vary even more in future if some will have free access to apps, to wifi, and others be digitally excluded.

For now, the overall effect is perhaps only ripples on the surface (like interruptions to long-term research projects due to HSCIC data stops after care.data outcry) but research direction, and currents of thought may shift fundamentally if how we collect data changes radically for even small pockets of society, or the ‘worried well’.

My fifth learning, was less a learning and more the triggering of lots of questions on wearables about which I want to learn more.

#digitalinclusion is clearly less about a narrow focus on apps than applied skills and online access.

But I came away wondering how apps will affect research and the NHS in the UK, and much more.

[Next: part two #NHSWDP 2: Smartphones: the single most important health treatment & diagnostic tool at our disposal – on wearables]

[And: part three #NHSWDP 3: Wearables & Consent: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care?]

*****

Full text of the speech given by Simon Stevens, Keynote speaker:

“The reality is we all can see that we’ve got to change […] as part of that we have got to have more integrated services, between primary and specialist services, between physical and mental health services, and between health and social care services.

“And the guiding principle of that integration has got to be care that is personal, and coordinated around individuals, with leadership of communities and patient groups.

“There is no way that can happen without a strong, technological underpinning using the information revolution which is sweeping just about every other part of the economy.

“We are not unusual in this country in having a health sector which has been a little slower, in some respects, than many other parts of national life to take full advantage of that.

“We are not unusual, because that is the experience of health services in every industrialised country.

“We obviously have a huge opportunity, and have a comparative advantage in the way that the NHS is organised, to put that right.

“We know that 8 out of 10 adults are now online, we know that two thirds of people in this country have got smartphones which is going to be the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond.

“But we know we have got 6.4m people who are not.

“And so when you of course then get serious about who are those six and a half million people, many of them are our highest users of services with the greatest needs.

“So this is not an optional extra. This has got to be central about what the redesign of care looks like, with a fundamental power shift actually, in the way in which services are produced and co-produced.

“This agenda goes to the heart of what we’ve got to get right, not just on inequalities but around co-production of services and the welcome steps that have been taken by the organisations involved, I think that the point is obviously we have now got to scale this in a much more fundamental fashion, but when you look at the impact of what has already been achieved, and some of the work that has already been done by the Tinder Foundation, you take some of the examples here, with the Sikh community in  Leicester around diabetes, and parenting in other parts of the country, you can see that this is an agenda which can potentially get real quite quickly and can have quite a big impact.

“The early evaluation anyway indicates that about half of people involved say they are leading healthier lives on the back of it, 48% in healthy eating, a third do more physical activity, 72% say they have saved money or time.

“Given that we are often talking about resource poor, time poor communities, that is hugely impactful as well.

“So my role here today, I think is simply to underline the weight that we place on this, as NHS England nationally, to thank all of you for the engagement that you have been having with us, and to learn from the discussion we are about to have as what you see where you see key priorities and what you need from us.”

[March 18, 2015 at the event “Digital Participation and Health Literacy: Opportunities for engaging citizens” held at the King’s Fund, London]

 

deregulation, health, NHS, NHS England

Clause 88 – the bingo clause of the Deregulation Bill?

Lord Tunnicliffe asked in Parliament on November 20, 2014: “are these  new clauses a licence for regulators to approve regulations that kill people to save money?”

Imagine an unsafe care home where children or the elderly are at risk.

Imagine its staff with fewer professional registration requirements than today.

Imagine the home could legally reject a Care Quality Commission call for changes, citing that to do so would harm the home’s “economic growth”.

Could this ever be reality, if this controversial clause 88(2) of the deregulation bill becomes law? [1]

In bingo, the number 88 is outdatedly and naughtily nicknamed ‘two fat ladies.’

In the media today we often hear about ‘health’ and ‘social care’ issues, and they currently overlap on the future approach to tackling the serious societal implications of obesity.

Headlines more rarely talk about changes to law which could have equally serious implications for the future approach to how we look after our health and care system and its oversight.

However, changes that could affect each of us, are currently in the Lords for review, and my bet is that few beyond their benches and MPs, have had their eyes down on the detail.

The Deregulation Bill – What is the very big bill all about?

It has been on the go for over 18 months, and Richard Grimes addressed some of the concerns in September 2013.[2]

The Deregulation Bill, is a very large bill indeed and is as broad in its content as its title is bland, but it has the potential to be a bombshell in its impact.

Functionally it covers subjects as diverse as busking and the Breeding of Dogs Act. It will make changes to the process the police use to obtain journalistic material [3] and provide a gateway to sell information from birth, death, marriage and civil partnership records.

Some changes in law will specifically affect the NHS: the ‘Road traffic legislation: use of vehicles in emergency response by NHS’, and ‘NHS foundation trusts and NHS trusts: acquisitions and dissolutions’.

Other clauses are area non-specific, such as my ‘bingo clause’, Clause 88(2), that creates a new legal duty for regulators to give regard to promoting economic growth.

The term ‘regulators’ covers a wide range of organisations [4]; you might think of Ofwat responsible for oversight of water and sewage, or the Food Standards Agency, or Human Tissue Authority.

Ken Clarke, joint bill owner with Oliver Letwin MP, wrote in 2013 [5]: “This is the beginning of a fundamental change in the culture of government. We think Reagan would have approved.

“By putting a duty on regulators not to burden business with unnecessary red tape, it will help to ensure that every nook and cranny of Whitehall is relentlessly focussed on growth.”

Will the Deregulation Bill take a gamble with the public interest in our NHS health and  social care provision through the ‘relentless’ duty to promote profit in Clause 88(2)?

Slimming down laws and the administration processes they affect, could of course be a very good thing. Lord Hunt of King’s Heath says of the bill as a whole: “I’ve no problem trying to streamline the regulatory processes, that’s why we broadly support it.”

But what about the detail in practice? Is Letwin and Clarke’s ‘relentless focus on growth’ going to mean compromise in worker safety, or in today’s health and social care market?

Will regulators be less rigorous about requirements and imposing penalties on commercial companies, if a private provider could complain, arguing non-compliance with this clause?

Clause 88(2): a duty to promote economic growth on regulators

Lord Hunt shared his key concern with clause 88(2): “The nub of the issue is ‘will this compromise their main regulatory function?’ I think it’s very ambiguous. He said:

“The health regulators are very unkeen on all of this. It’s pretty clear to me in discussions that they worry about the impact this will have.”

One regulator that could be affected is CQC. A CQC spokesperson said:  “The Government’s response to the report of the Draft Bill Committee’s pre-legislative scrutiny said the duty does not set out how economic growth ranks against existing duties as this is a judgement only a regulator can and should make.

“The quality and safety of services is the primary basis on which we will regulate, and take enforcement action where necessary to protect people who use services. We would not consider a new duty to promote economic growth to override this position.”

How these new regulatory functions will work with their existing duties is unclear.

If they conflict how will it be decided which is considered most important if the law “does not set out how economic growth ranks against existing duties”? Summary guidance [6] on the deregulation bill is that the growth duty does not automatically take precedence over or supplant existing duties held by regulators, but what will that mean in practice?

If the economic growth duty should not make any difference to the key responsibilities of the regulator, why bring in this change at all?

A Department for Business, Innovation & Skills spokesperson said:
“Regulators will be required to be transparent about how they are complying with the growth duty.

“The Government will monitor the implementation of the growth duty through existing reporting mechanisms such as annual reports, published policies and service standards.”

To ring-fence the regulatory functions of health and social care bodies from the effects of Clause 88 (2) Lord Hunt proposed an amendment to 11 of them.[7]

He said: “In earlier discussion with ministers it was made clear they have a preliminary list of 5 regulators that they consider [in health] would fall under the economic growth clause in the bill: The Care Quality Commission (CQC), the Human Fertilisation and Embryology Authority (HFEA), the Human Tissue Authority (HTA), the Medicines and Healthcare Products Regulatory Agency (MHRA) and the Professional Standards Authority.

“I cannot for the life of me, see why the health regulators are in there. I hope that the government will be able to take some, or all of them out.”

But the amendment was not supported on February 11 by the government and instead it only promised further discussion before the next stage of the bill.

What changes will it make and are they in the Public Interest?

A year ago in February 2014 [8], MPs in the House of Commons, Caroline Lucas, Jonathan Edwards, John McDonnell and Jeremy Corbyn MPs proposed the removal of this same clause, requiring the desirability for economic growth, and they had concerns:

…”that this Bill represents a race to the bottom and an obsession with GDP growth at any cost which is not in the public interest.”

If the aim of the deregulation bill is to streamline services and remove red tape it should be very clear what purpose will be served through the changes and what consequences will be unleashed as a result.

However it appears that the government wants to get the bill through in principle and leave the practical detail of such risk analysis to be defined by regulations set out after it is law.

Regulations are not subject to the same parliamentary scrutiny and discussion as primary legislation, and some feel they are harder to veto.

Lord Hunt said: “It’s a very unsatisfactory way of doing it, there’s no guarantees and the government can just produce and list and then change that at any time in the future.

It is not the first time that Mr. Letwin’s proposals have been open ended and could have unforeseen consequences. [9]

Lord Hunt asked: “it’s a very open ended piece of legislation and the thing to ask is will it inhibit these key health regulators in protecting the public?”

Of key concern is whether regulators will be inhibited from taking actions in the public interest because of the potential for legal challenge by private interests.

If this sounds familiar, you may have heard similar language on deregulation in discussion of the behemoth of deregulation playing in parallel internationally: the TTIP, the Transatlantic Trade and Investment Partnership (TTIP). [10]

How the consequences of these national and international deregulation changes are inter-related is impossible to fully understand given the lack of public information available.

Public Consultation and Professional Voice given too little regard The Deregulation Bill and the effects of the duty to promote economic growth will spread across all our regulatory bodies.

Like the obesity discussion, the Bill is complex, it’s cumbersome, and whilst appearing to have good intentions, hard to understand how changes will be applied in practice.

It also appears at times to lack common sense and to ignore experienced professional opinion.

The Equality and Human Rights Commission felt that: “applying this growth duty to the EHRC poses a significant risk to the EHRC’s independence, and therefore to its compliance with the Paris Principles.”

The Government therefore risks the possibility of the EHRC’s accredited “A” status being downgraded and of putting the UK in breach of its obligations under EU equality law.

But Clause 88(2) will be applied to this body which promotes worker rights and fairness.

Social care is to become less regulated by scrapping the need to register staff with Ofsted.

Baroness King of Bow said in the Lords debate on November 18th: “There is a feeling in the [social care] sector and indeed elsewhere that there has been quite simply inadequate debate around these very serious and important issues.”

Lord Reid of Cardowan in the Lords on February 5th said: “There are occasions during a ministerial career where, on study, what seems a relatively small decision becomes an obviously profound and very risky decision […] having listened to this debate, I have the impression that this is one of them.”

The potentially harmful consequences of these changes demand greater public scrutiny.

Will this bill future-proof the regulatory protections of health, environmental, safety, and social care, and prioritise the public interest?

If instead a duty to profit should be put first, one day the words of Lord Tunnicliffe may come back to haunt us: “Are these new clauses a licence for regulators to approve regulations that kill people to save money?” [11]

We may then look back to find why failings happened, look to this bill, and shout, ‘bingo!’

Notes:

The third reading is on 4 March and Lord Hunt has submitted an amendment to take out the The Human Fertilisation and Embryology Authority (HFEA) and Professional Standards Authority (PSA) for Health and Social Care from being covered by the growth clause.

As the Bill is amended and re-written, clause numbers will change. Clause 88(2) was the number of the duty to promote growth clause on February 11 2015 in the House of Lords debate.

A version of this article was first edited, amended and published by Open Democracy on February 25, 2015.

References:

[1] http://www.publications.parliament.uk/pa/bills/lbill/2014-2015/0058/lbill_2014-20150058_en_9.htm#pb16-l1g91

[2] https://www.opendemocracy.net/ournhs/richard-grimes/bonfire-of-citizens-rights

[3] http://www.theguardian.com/media/2014/jan/31/secret-hearings-police-journalists-deregulation-bill

[4] List of regulators: http://discuss.bis.gov.uk/focusonenforcement/list-of-regulators-and-their-remit/

[5] http://www.conservativehome.com/platform/2013/07/ken-clarke-oliver-letwin.html

[6] www.gov.uk/government/uploads/system/uploads/attachment_data/file/274552/14-554-growth-duty-draft-guidance.pdf

[7] http://www.publications.parliament.uk/pa/bills/lbill/2014-2015/0058/amend/ml058-III-Rev.htm

[8] https://www.nuj.org.uk/news/nuj-backs-reasoned-amendment-to-deregulation-bill/

[9] http://www.theguardian.com/politics/2014/dec/30/downing-street-files-oliver-letwin-poll-tax

[10] https://www.opendemocracy.net/ourkingdom/linda-kaucher/eu%27s-giant-and-secretive-deregulation-blitz

[11] http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/141120-gc0001.htm

human rights, mental health, NHS, NHS England

Burning questions on Detention Centre healthcare & welfare

A man deliberately set fire to his mattress and clothes, and was taken to hospital in Surrey on Jan 31st, two weeks ago.

He is one of 426 men held at Brook House, one of the immigration removal centres (IRCs) at Gatwick. After being treated for smoke inhalation he was returned later the same evening, according to a G4S spokesman.

Crawley’s West Sussex Fire & Rescue Service put out the fire, and had ventilated the smoke damaged cell before leaving, all in 30 minutes.

Clearly it did not come to much,  but why did a man feel the need to set fire to the few possessions he has, and what happens next?

The G4S media spokesman said last week in connection with the fire, he was unaware of any standard health assessment or any procedures for the care of men after these incidents.

In 2010, only one year after its opening, the HM Chief Inspector of Prisons report based on an announced visit at Brook House Immigration Removal Centre [3] labelled the Brook House IRC as fundamentally ‘an unsafe place’.

The inspectorate found in 2010 and again in 2013 that the mental health failings were serious. Should it not be realistic to expect standard practices should already have been put in place since, for their improvement?

What will the recent multi-million contract for healthcare at a number of detention centres awarded by NHS England to G4S and separately in prisons mean for standards and continuity of their NHS care, and will improvements be put in place which work?

The multinationals working in our UK justice and home office systems, G4S [which manages Brook House] and Serco, haven’t exactly got track records which are equal to the ethical expectations the public has in their roles.

They also operate in Australia where Ministers have taken a hardline approach in defiance of human rights asylum conventions.

One year ago today, twenty-three-year-old Reza Barati was killed in an Australian immigration detention centre on Manus Island. In August 2014, police have reportedly charged two guards working for former camp operator G4S with his murder. A parliamentary enquiry found the violence was foreseeable.

Another man, Hamid Kehazaei did not get taken from Manus to receive adequate medical treatment quickly enough due to paperwork delays, and died in December, the Guardian reported.

Are there warning signs that the provision in England is heading in the same way and not just for IRCs but for detention and prison across the UK?

Do people needing healthcare get taken offsite quickly enough when needed in England? How have they responded to deaths in detention?

In the UK, the IAP on Deaths in Custody has produced a comprehensive statistical breakdown of all recorded deaths in broad state custody settings between 1 January 2000 and 31 December 2010.

The report included a focus on the deaths of people detained under the Mental Health Act (MHA).

Children have died in detention and men during IRC removals.
[For more detail, see the section below, Questions on the Staffing and use of Force in care]

The care and the responsibility for these IRC-held men, women and children may not be of interest to everyone in the UK.

But as the expansion of private contractors becomes the norm, any family in England who finds someone they love in any non-HMP run English prison might be touched by the values of these providers.

Should we demand that equal ethical standards, transparency of targets and procedures, and the provision of physical and mental health care, be for all, as basic human rights?

Must our state keeps awarding massive contracts to these massive multinationals?

Will we, under the cuts of austerity, see situations deteriorate further in the UK, to the Australian standard?

Will we look back and wish we had acted sooner?

These issues are not new and are well documented

Lord David Ramsbotham GCB CBE, Her Majesty’s Chief Inspector of Prisons – December 1995 – August 2001 wrote the foreword in the 2008 report by the Birnberg Peirce & Partners, Medical Justice and the National Coalition of Anti-Deportation Campaigns  [Outsourcing abuse 2008] in which he identified:

“a most unfortunate attitude, adopted by officials towards issues surrounding asylum and immigration, described by the Commission as ‘a culture of disbelief’.”

It seems this culture of disbelief is allowed to continue.

Yet despite years of evidence, the February 2015 Home Office response by today’s government only accepts in part, some of the issues raised and recommendations in the Tavistock Institute Review [2] of IRC mental health care.

These include indefinite detention and the impacts on mental health, and a proposal of cultural change to speed up processing times.

As this is considered, I wonder will any change aimed at reducing indefinite detention manage to be designed in such a way as to also future-proof thorough and proper processing procedures?

In the meantime, detainees and prisoners are protesting via the few channels they have.  Self harm, starvation and setting things alight.

So what can we, the Public do?

If you think this matters but know little about it, we can get informed, or we can ask that our MPs intervene on our behalf.

We can support those who work or campaign in this area, like AVID [see on social media #Time4aTimeLimit and @DetentionForum

I wonder if those more informed, perhaps your local Red Cross or immigration volunteers, could read and consider responding to the Care Quality Commission (CQC) somewhat ‘informal’ consultation [p14] underway, on the approach to the CQC regulation in England?

This will affect how healthcare is regulated in IRCs. The closing date in March is unconfirmed.  Views are being taken now, in consultation via email: cqcinspectionchangeshj @ cqc.org.uk [1].

Joint working may be a good thing if it brings action to improve the health, care and welfare of the people in these institutions.

What it must not mean, is less frequent, independent, or less comprehensive reports by the HMIP which covers a wider area of inspection than CQC might.

Pregnant women, women who have been trafficked, torture victims: [added March 2: see Channel 4 on #Yarlswood] people are not getting the specialist support or care they should. Their carers and NHS staff are not universally getting specialist training they need.

Public pressure and transparency should support the campaign organisations who are familiar with these issues and demand change through MPs. There are big questions for IRCs whether people should be there at all, pregnant women and children even more so.

But specifically on health and welfare issues I would like to ask:

  • MPs: if they are aware already, of The Tavistock Institute Report [2],  government response, and ask for action, not only in IRCs but across all detention settings (incl. indefinite detention)
  • Ask: ‘is the parity of mental health delayed yet again, for people in prison and anyone in IRCs’? [ref the NHS Guidance to Mental Health Access  and Standards for 2015/16 from 12th February]
  • Ask: ‘What will the NHS England awarded multi-million contract for healthcare at a number of detention centres to G4S and separately in prisons mean for standards and continuity of their NHS care?’
  • Ask: ‘What training does NHS England offer healthcare staff who work with these people and how is it universally applied?’
  • Ask: ‘How is the provision of quality medical care being assessed and well documented changes needed actually acted upon’?
  • Ask: why are reports [as outlined in a letter from John Vine CBE QPM] taking so long to action? “The majority of my reports since January 2014 have been subject to significant delays between submission to the Home Secretary and being laid in parliament”
  • Ask: ‘Why is it deemed NOT in the public interest to ensure that all the providers’ procedures, protocols, the expected standards they operate to, and clear accountability for when they do not,  are transparent and in the public domain?’

The state may have, in places, outsourced the service, but it cannot outsource its responsibilities.

In my research to date, the question that I am left with overwhelmingly is this:

“As a provider of punitive systems, can healthcare and welfare can be delivered “with an equal sense of fairness” through the same outsourced service?”

Are the steps Theresa May refers to in the recently announced Shaw review, an indicator of real change?

The reports and reviews over the last ten years listed above seem to have made no difference to the unknown man, who set fire to his stuff, on the Saturday evening of January 31st 2015 at Brook House.

Parliament is well aware of many failings already. [9] and there are known others which are yet to be made public. [10]

Since 2010 through June 2013 the HMIP reports clearly identify issues but what follow though is made and who is accountable for it?

While there are solutions needed to big philosophical questions that may trouble our conscience, like ‘what kind of country do we want to be to unaccompanied children escaping life threatening situations?’ equally big political questions continue to challenge: ‘How and why do we continue to engage multinationals with unanswered ethical questions on financial and humanitarian practices?’ ‘What hope for refugees and asylum seekers in Greece and what are the wider EU implications, if EU political and economic next steps are unclear?’

For now, for many people who want to take action, it is the small and practical which can be done, in practice. Often small acts which make a difference in the silent and unreported space between desperation and hope, for each person,  each day.  Supporting our NHS staff to ensure they get the specialist situation training they want and continue their invaluable roles in these places. Supporting the visitors’ volunteer groups. You might consider joining them.

Call on our MPs to demand change now, not review after review.

More reviews, reports, consultations and new legislation bills, seem to run in parallel with little, at least little public regard to one another and ignoring the continuity of their calls for change.

They could make a difference with cohesion between the responses and if accountable action were taken.

That needs compunction and oversight of accountable follow up.

Until however long the next review takes to report, and any action is put in place, we might see another fire, for another person; in another prison, or another young offender institution, or another detention centre.

It might be in one near you. It might affect someone you love. It may be a child.

It’s not over dramatic to say: it might be a matter of life or death.

****

If you are interested in more detail, read on below after the continue reading break:

A. What happens to someone at an IRC after a fire like this?
B. Review of Welfare & Mental Health at IRCs incl. detention time
C. Brook House, Gatwick Cluster
D. Who is responsible for the healthcare offered at IRCs? The role of NHS England and the CQC
E. Questions on Staffing and use of Force in care
F. Another Review, another Report? Will there be Change?
Conclusion: Burning questions on Immigration Removal Centre healthcare

References

Continue reading Burning questions on Detention Centre healthcare & welfare →

#caredata, care.data, commercial, communications, engagement, genomics, NHS, NHS England, politics

A review of NHS news in 2014, from ‘the Spirit of the NHS Future’.

Respectful of all the serious, current news and that of the past year, this is a lighthearted look back at some of the stories of 2014. ‘The Spirit of the NHS Future’ looks forwards into 2015 & at what may still be changed.

***

The Spirit of the NHS Future  visits the Powers-at-be
(To the tune of The 12 Days of Christmas)

[click to open music in another window]

On the first day of Christmas
the Spirit said to me:
I’m the ghost of the family GP.

On the second day of Christmas
the Spirit said to me: a
two-tiered system,
in the future I foresee.

On the third day of Christmas
the Spirit said to me:
You told GPs,
merge or hand in keys,
feder-ate or salaried please.

On the fourth day of Christmas
the Spirit said, I hear:
“Save our surgeries”,
MPIG freeze,
partners on their knees,
blame commissioning on local CCGs.

On the fifth day of Christmas
the Spirit said to me:
Five Ye-ar Plan!
Call it Forward View,
digital or screwed.
Let’s have a new review,
keep ‘em happy at PWC.

On the sixth day of Christmas
the Spirit said to me:
Ill patients making,
out-of-Ho-urs-rings!
Callbacks all delayed,
six hours wait,
one one one mistakes.
But must tell them not to visit A&E.

On the seventh day of Christmas
the Spirit said, GPs:
see your service contract,
with the QOF they’re trimming,
what-will-this-bring?
Open Christmas Eve,
New Year’s no reprieve,
please don’t cheat our Steve,
or a breach notice will you see.

On the eighth day of Christmas
the Spirit said to me:
Population’s ageing,
social care is straining,
want is pro-creating,
obe-si-ty’s the thing!
Cash to diagnose,
statins no one knows,
indicator woes,
and Doc Foster staff employed at CQC.

On the ninth day of Christmas
the Spirit said to me:
Cash for transforming,
seven days of working.
Think of emigrating,
ten grand re-registration.
Four-teen hour stints!
DES and LES are fixed.
Called to heal the sick,
still they love the gig,
being skilled, conscientious GPs.

On the tenth day of Christmas
the Spirit said to me:
Many Lords a-leaping,
Owen’s not been sleeping,
private contracts creeping,
Circle’s ever growing.
Care home sales not slowing.
Merge-eve-ry-thing!
New bidding wars,
tenders are on course
top nine billion, more,
still you claim to run it nation-al-ly.

On the eleventh day of Christmas
the Spirit said to me:
Patient groups are griping,
records you’ve been swiping,
listening while sharing,
data firms are buying,
selling it for mining,
opt-out needs defining,
block Gold-acre tweets!
The care dot data* board
minutes we shall hoard,
troubled pilots loom.
Hi-de Partridge’s report behind a tree?

On the twelfth day of Christmas
the Spirit said to me:
disabled are protesting
sanctions, need arresting,
mental health is failing,
genomes we are trading,**
staff all need more paying,
boundaries set for changing,
top-down re-arranging,
All-this-to-come!
New hires, no absurd,
targets rule the world,
regulation first.
What’s the plan to save our service, Jeremy?

– – – – – –

Thanks to the NHS staff, whose hard work, grit and humour, continues to offer the service we know. You keep us and our loved ones healthy and whole whenever possible, and deal with us & our human frailty, when it is not.

Dear GPs & other NHS staff who’ve had a Dickens of a year. Please, don’t let the system get you down.

You are appreciated, & not just at Xmas. Happy New Year everyone.

“It is a fair, even-handed, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.”
– Charles Dickens,   A Christmas Carol, 1843

– – – – –

*New Statesman, Dr Phil Whitaker’s Health Matters column, 20th March 2014, ‘Hunt should be frank about the economic imperative behind the urgency to establish the [care.data] database and should engage in a sensible discussion about what might be compromised by undue haste.’

**Genomics England Kickstarting a Genomics Industry