Tag Archives: project management

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, change management, communications

If at first you don’t succeed – try, try again. But think about changes first.

On June 24th 2014, it is the 700th anniversary of the Battle of Bannockburn, at which the Scots defeated the English, and their ruling King, Edward the second.

The legend of Robert the Bruce ahead of the battle, hiding out in a cave on the run after six defeats,  is renowned the world over. The Scot saw a spider building a web. Time and time again the spider would fall and then climb slowly back up to try again. After many attempts, the spider managed to begin to weave a web on the cave wall and achieved its aim. Robert the Bruce, so the story goes,  was inspired by the spider not to give up and went on to defeat the English at Bannockburn. The motto of the story is usually:

“If at first you don’t succeed – try, try again.”

Whilst perseverance is an admirable trait, stubborness may not be. Trying the exact same thing which failed previously, in precisely the same way, may be said to be either determined or foolish. Trying again, but incorporating learnings from the past failure with flexibility to incorporate learning-by-doing, seems an altogether smarter choice.  Modifications for improvement and changes in action and their execution based on lessons learned have a higher chance of success*.

“Bannockburn is arguably the most famous battle to be fought and won by the Scots in Scotland, but it is widely acknowledged to be more than that— it continues to conjure up ideas of freedom, independence, patriotism, heroism, perseverance, and triumph against overwhelming odds.” [Bannockburn Heritage Centre]

In projects, overwhelming odds against achieving success can be built-in from the beginning, through lack of foresight to plan how to measure it. If you don’t know how you will measure success, it is hard to know when it has been achieved and at what cost. To measure success, you first need to know tightly what are your defined project scope and purposes. This helps set the goals of what you want to achieve technically, its  human understanding and crucially, expectations of how and when success will be measured.

Steve Jobs is sometimes quoted:

“You can’t just ask customers what they want and then try to give that to them. By the time you get it built, they’ll want something new.”

Trying again isn’t always about trying the same model, rolling out the original communications plan louder, or slower, or just again, but about embracing changes and adding in flexibility for future change.  Change is not a single event, but a process, and any attempted project launch needs to be prepared to learn from the past but also to plan for the future, as that process occurs. The scope of the project however, must stay tightly controlled, or risks losing control of budget and achieving the project aims.

By being visionary about what will be needed in future and aiming to be ahead of the design specifications there is room left for learning-by-doing in the ‘how’ you want to achieve the project, but it can’t allow deviance to become an entirely different ‘what’ of project scope.

To try and meet a future goal, basing it only on present specifications and expectations, means it will be outdated and fail when you reach the future implementation date. By launch date, the design and functionality are already outdated and not fit for purpose.

To compensate for that, measurable bite-sized chunks of projects, can be a way of frequent checking in to see if you are still on track with the overall aims of what you want to achieve, whilst retaining the flexibility to adapt to the human aspects of progress, and how you will achieve it.

Measures of success therefore need to be taken frequently to stay on track, ensuring alignment with your defined project scope and purposes. ‘Checking in’ to see if you are still on the correct course. This helps set the goals of what you want to achieve technically, in human terms and on a timeline, which crucially sets expectations of how and when success will be seen to have been achieved.

Some of the success at Bannockburn was recorded at the time in poetry. More recently, the themes have been preserved in music.

If the Flower Of Scotland tribute to Robert the Bruce, the Scots’ ‘almost National Anthem’ at least in terms of sporting events, is not your thing, you might prefer Aaliyah’s rendition of the theme, Try Again. Though her wardrobe choices are slightly more surprising than the Corries.

The theme is the same. To think again, before trying again, is wise.

“Those days are past now
And in the past they must remain
But we can still rise now
And be the nation again
That stood against him
Proud Edward’s Army
And sent him homeward,
Tae think again.”

Flower of Scotland, the Corries, 1967

*****

For more recent celebrations see: http://www.visitscotland.com/

Photo credit: Dilip Barman via photo.net ‘ thistle near Bonar Bridge north of Inverness, Scotland.

*My lessons learned from experience of change management in  global projects rolling out SAP, 2001-2006.

#caredata, communications, leadership, Tech, transparency

Appendix F. For successful technology, reality must take precedence over public relations.

Richard Feynman
Richard Feynman via brainpickings.org bit.ly/1q1qWLt

June 6th 1986. Six months after the disaster, the Report to the Presidential Commission was released about The Space Shuttle Challenger.

Just over twenty eight years ago, I, like fellow children and citizens around the world, had watched the recorded images from January 28th 1986. We were horrified to see one of the greatest technological wonders of the world break up shortly after launch and crash into the sea minutes later. The lives of Challenger’s seven crew were lost, amongst them the first ‘ordinary citizen’ and member of the teacher in space project, mother of two, Christa McAuliffe.

As part of the follow up audit and report, Richard Feynman’s personal statement was included as Appendix F. Personal observations on reliability of the Shuttle. You can read his full statement. Below are just his conclusions and valuable lessons learned.

“If a reasonable launch schedule is to be maintained, engineering often cannot be done fast enough to keep up with the expectations of originally conservative certification criteria designed to guarantee a very safe vehicle. In these situations, subtly, and often with apparently logical arguments, the criteria are altered so that flights may still be certified in time.

They therefore fly in a relatively unsafe condition, with a chance of failure of the order of a percent (it is difficult to be more accurate).

Official management, on the other hand, claims to believe the probability of failure is a thousand times less. One reason for this may be an attempt to assure the government of NASA perfection and success in order to ensure the supply of funds. The other may be that they sincerely believed it to be true, demonstrating an almost incredible lack of communication between themselves and their working engineers.

In any event this has had very unfortunate consequences, the most serious of which is to encourage ordinary citizens to fly in such a dangerous machine, as if it had attained the safety of an ordinary airliner.

The astronauts, like test pilots, should know their risks, and we honor them for their courage. Who can doubt that McAuliffe was equally a person of great courage, who was closer to an awareness of the true risk than NASA management would have us believe?

Let us make recommendations to ensure that NASA officials deal in a world of reality in understanding technological weaknesses and imperfections well enough to be actively trying to eliminate them. They must live in reality in comparing the costs and utility of the Shuttle to other methods of entering space. And they must be realistic in making contracts, in estimating costs, and the difficulty of the projects.

Only realistic flight schedules should be proposed, schedules that have a reasonable chance of being met.

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.”

Richard Feynman, 1918 -1988

“The Challenger accident has frequently been used as a case study in the study of subjects such as engineering safety, the ethics of whistle-blowing, communications, group decision-making, and the dangers of groupthink. It is part of the required readings for engineers seeking a professional license in Canada and other countries.” [Wikipedia]

Feynman’s Appendix F: Personal Observations on Reliability of the Shuttle is well worth a read in full.

From a business management point of view, Lessons Learned are integral to all projects and there is no reason why they cannot apply across industries. But they are frequently forgotten or ignored, in a project’s desire to look only ahead and achieve future deliverables on time.

Lessons learned can make a hugely important contribution to positive change and shaping outcomes. Assessing what worked well and how it can be repeated, just as important as learning from what went wrong or what was missing.

Public relations efforts which ignore learning from the past, and which fail to acknowledge real issues and gloss over reality doom a project to failure through false expectation. Whether due to naivety, arrogance, or under leadership pressure, it can put a whole project in jeopardy and threaten its successful completion.  Both internal and external stakeholder management are put at unnecessary risk .

In the words of Richard Feynman, “For successful technology, reality must take precedence over public relations.”

#caredata, care.data, change, change management, choice, comm consent, communications, trust

care.data – Riding the Change Curve

I’ve been inspired by many people this week.

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

The change curve

How do we deal with change?

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

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

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

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

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

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

The change curve starts with shock

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

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

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

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

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

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

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

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

HSCIC is giving it away almost for free.

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

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

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

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

Change is the only constant. How can we progress?

The Change Curve based on the Kübler-Ross Grief model

 

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

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

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

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

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

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

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

Communications and Change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Change and Trust

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

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

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

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

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

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

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

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

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

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

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

To say that, underestimates the task ahead.

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

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

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

Legislation to build a solid Future foundation

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

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

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

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

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

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

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

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

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

No one said, change is easy

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

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

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

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

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

 

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

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

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

This can be avoided.

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

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

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

In Summary

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

These steps simply, start with:

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

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

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

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

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

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

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

It makes us engage.

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