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Patient questions on care.data – an open letter

Dear NHS England Patients & Information Directorate,

We’ve been very patient patients in the care.data pause. Please can we have some answers now?

I would like to call for greater transparency and openness about the promises made to the public, project processes & policies and your care.data communication plans.

In 2013, in the Health Service Journal Mr. Kelsey wrote:

“When patients are ignored, they are most at risk; that was the central conclusion of the report by Robert Francis into Stafford hospital.

Don Berwick, in his safety review, said the NHS should be “engaging, empowering and hearing patients and their carers all the time.

“That has been my mission since I started as National Director for Patients and Information: to support health and care services transform transparency and participation.“

HSJ, 10th December 2013

It is time to walk-the-talk for care.data under this banner of transparency, participation and open government.

Response to the Listening exercises

The care.data listening phase, introduced by the pause announced on February 18th, has captured a mass of questions, the majority of which still remain unaddressed.

At one of these sessions, [the 1-hr session on June 17th Open House, linking ca. 100 people at each of the locations in Basingstoke, Leicester, London, and York] participants were promised that our feedback would be shared with us later in the summer, and posted online. After the NHS AGM on Sept 18th I was told it would happen ‘soon’. It is still not in the public domain.

At every meeting all the unanswered questions, on post-it notes, in table-group minutes or scribbled flipcharts, were gathered ‘to be answered at a later date’. When will that be?

To date, there has been no published information which addresses the unanswered event questions.

Transparency of Process, Policies and Approach

The care.data Programme Board has held meetings to plan the rollout process, policies and approach. The minutes and materials from which have not been published. I find this astonishing when one considers that the minutes of the care.data advisory group, NIB (new), CAG, GPES advisory or even NHS England Board itself are in the public domain. I believe the care.data Programme Board meeting materials should be too.

It was acknowledged through the Partridge Review of past use of our hospital records that this HES data is not anonymous. The extent of its sale to commercial third-parties and use by police and the Home Office was revealed. This is our medical data we gave to hospitals and in our wider medical use for our care. Why are we the last to hear it’s being accessed by all sorts of people who are not at all involved in our clinical care?

Even for commissioning purposes it is unclear how these datasharing reasons are justified when the Caldicott Review said extracting identifiable data for risk stratification or commissioning could not be assumed under some sort of ‘consent deal’?

“The Review Panel found that commissioners do not need dispensation from confidentiality, human rights and data protection law…” [The Information Governance review, ch7]

The 251 approval just got extended *again* – until 30th April 2015. If you can’t legally extract data without repeat approvals from on high, then maybe it’s time to question why?

The DoH, NHS England Patients and Information Directorate, HSCIC, and indeed many data recipients, all appear to have normalised an approach that for many is still a shock. The state centralised and passed on our medical records to others without our knowledge or permission. For years. With financial exchange. 

Amazingly, it continues to be released in this way today, still without our consent or fair processing or publicised way to opt out.

“To earn the public’s trust in future we must be able to show that our controls are meticulous, fool-proof and solid as a rock.”  said Sir Nick Partridge in his summary review.

Now you ask us to trust in care.data that the GP data, a degree more personal, will be used properly.

Yet you ask us to do this without significant changes in legislation to safeguard tightly defined purposes who can access it and why, how we control what future changes may be made without our knowledge and without a legally guaranteed opt out.

There is no information about what social care dataset is to be included in future, so how can we know what care.data scope even is yet?

Transparency cannot be a convenient watch word which applies with caveats. Quid pro quo, you want our data under an assumed consent process, then guarantee a genuinely informed public.

You can’t tell patients one approach now, then plan to change what will be said after the pilot is complete, knowingly planning a wider scope to include musculoskeletal or social care data and more.  Or knowing you plan to broaden users of data [like research and health intelligence currently under discussion at IAG ] but only communicate a smaller version in the pilot. That is like cheating on a diet. You can’t say and do one thing in public, then have your cake and eat it later when no one is looking. It still counts.

In these processes, policies and approach, I don’t feel my trust can be won back with lack of openness and transparency. I don’t yet see a system which is, ‘meticulous, fool-proof or solid as a rock’.

‘Pathfinder’ pilots

Most recently you have announced that four areas of CCGs will pilot the ‘pathfinder’ stage in the rollout of phase one. But where and when remains a  mystery. Pathfinder communications methods may vary from place to place and trial what works and what fails. One commendable method will be a written letter.

However even given that individual notice intent, we cannot ignore that many remaining questions will be hard to address in a leaflet or letter. They certainly won’t fit into an SMS text.

Why pilot communications at all which will leave the same open questions unanswered you already know, but have not answered?

For example, let’s get a few of the missing processes clarified up front:

  • How will you communicate with Gillick competent children, whose records may contain information about which their parents are not aware?
  • How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
  • What of  the vulnerable at risk of domestic abuse and coercion?
  • When things change in scope or use, how will we be given the choice to change our opt out decision?

I ask you not to ignore the processes which remain open. They need addressed BEFORE the pilot, unless you want people to opt out on the basis of their uncertainty and confusion.

What you do now, will set the model expectations for future communications. Patient online. Personalised medicine. If NHS health and social care is to become all about the individual, will you address all individuals equally or is reaching some less important than others?

It seems there is time and effort in talking to other professionals about big data, but not to us, whose data it is. Dear Patients & Information Directorate, you need to be talking to us, before to others about how to use us.

In March, this twelve point plan made some sensible suggestions.

Many of them remain unaddressed. You could start there. But in addition it must be clear before getting into communications tools, what is it that the pathfinders are actually piloting?

You can’t pilot communications without clearly defined contents to talk about.

Questions of substance need answers, the ten below to start with.

What determines that patients understand the programme and are genuinely informed, and how will it be measured?

Is it assumed that pilots will proceed to extraction? Or will the fair processing efforts be evaluated first and the effort vs cost be taken into account whether it is worth proceeding at all?

Given the cost involved, and legal data protection requirements, surely the latter? But the pathfinder action plan conflates the two.

Citizen engagement

Let’s see this as an opportunity to get care.data right, for us, the patients. After all, you and the rest of the NHS England Board were keen to tell us at the NHS AGM on September 18th, how valuable citizen engagement is, and to affirm that the NHS belongs to us all.

How valued is our engagement in reality, if it is ignored? How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective? How might this negatively affect future programmes and our willingness to get involved in clinical research if we don’t trust this basic programme today?

This is too important to get wrong. It confuses people and causes concern. It put trust and confidence in jeopardy. Not just for now, but for other future projects. care.data risks polluting across data borders, even to beyond health:

“The care.data story is a warning for us all. It is far better if the industry can be early on writing standards and protocols to protect privacy now rather than later on down the track,” he said. [David Willets, on 5G]

So please, don’t keep the feedback and this information to internal departments.

We are told it is vital to the future of our NHS. It’s our personal information.  And both belong to us.

During one Health Select Committee hearing, Mr. Kelsey claimed: “If 90 per cent opt out [of care.data], we won’t have an NHS.”

The BMA ARM voted in June for an opt in model.

ICO has ruled that an opt in model by default at practice level with due procedures for patient notification will satisfy both legal requirements and protect GPs in their role as custodians of confidentiality and data controllers. Patient Concern has called for GPs to follow that local choice opt in model.

I want to understand why he feels what the risk is, to the NHS and examine its evidence base. It’s our NHS and if it is going to fail without care.data and the Board let it come to this, then we must ask why. And we can together do something to fix it. There was a list of pre-conditions he stated at those meetings would be needed before any launch, which the public is yet to see met. Answering this question should be part of that.

It can’t afford to fail, but how do we measure at what cost?

I was one of many, including much more importantly the GPES Advisory Group, who flagged the shortcomings of the patient leaflet in October 2013, which failed to be a worthwhile communications process in January. I flagged it with comms teams, my MP, the DoH.

[Sept 2013 GPES Advisory] “The Group also had major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”.

No one listened. No action was taken. It went ahead as planned. It cost public money, and more importantly, public trust.

In the words of Lord Darzi,

“With more adroit handling, this is a row that might have been avoided.”

Now there is still a chance to listen and to act. This programme can’t afford to pilot another mistake. I’m sure you know this, but it would appear that with the CCG announcement, the intent is to proceed to pilot soon.  Ready or not.

If the programme is so vital to the NHS future, then let’s stop and get it right. If it’s not going to get the participation levels needed, then is it worth the cost? What are the risks and benefits of pressing ahead or at what point do we call a halt? Would it be wise to focus first on improving the quality and correct procedures around the data you already have – before increasing the volume of data you think you need? Where is the added intelligence, in adding just more information?

Is there any due diligence, a cost benefit analysis for care.data?

Suggestions

Scrap the ‘soon’ timetable. But tell us how long you need.

The complete raw feedback from all these care.data events should be made public, to ensure all the questions and concerns are debated and answers found BEFORE any pilot.

The care.data programme board minutes papers and all the planning and due diligence should be published and open to scrutiny, as any other project spending public funds should be.

A public plan of how the pathfinders fit into the big picture and timeline of future changes and content would remove the lingering uncertainty of the public and GPs: what is going on and when will I be affected?

The NHS 5 year forward view was quite clear; our purse strings have been pulled tight. The NHS belongs to all of us. And so we should say, care.data  can’t proceed at any and at all costs. It needs to be ‘meticulous, fool-proof and solid as a rock’.

We’ve been patient patients. We should now expect the respect and response, that deserves.

Thank you for your consideration.

Yours sincerely.

 

Addendum: Sample of ten significant questions still outstanding

1. Scope: What is care.data? Scope content is shifting. and requests for scope purposes are changing already, from commissioning only to now include research and health intelligence. How will we patients know what we sign up to today, stays the purposes to which data may be used tomorrow?

2. Scope changes fair processing: We cannot sign up to one thing today, and find it has become something else entirely tomorrow without our knowledge. How will we be notified of any changes in what is to be extracted or change in how what has been extracted is to be used in future – a change notification plan?

3. Purposes clarity: Who will use which parts of our medical data for what? a: Clinical care vs secondary uses:

Given the widespread confusion – demonstrated on radio and in press after the pathfinders’ announcement – between care.data  which is for ‘secondary use’ only, i.e. purposes other than the direct care of the patient – and the Summary Care Record (SCR) for direct care in medical settings, how will uses be made very clear to patients and how it will affect our existing consent settings?

3. Purposes definition: Who will use which parts of our medical data for what?  b) Commercial use  It is claimed the Care Act will rule out “solely commercial”purposes, but how when what remains is a broad definition open to interpretation? Will “the promotion of health” still permit uses such as marketing? Will HSCIC give its own interpretation, it is after all, the fact it operates within the law which prescribes what it should promote and permit.

3. Purposes exclusion: Who will use which parts of our medical data for what?  c) Commercial re-use by third parties: When will the new contracts and agreements be in place? Drafts on the HSCIC website still appear to permit commercial re-use and make no mention of changes or revoking licenses for intermediaries.

4a. Opt out: It is said that patients who opt out will have this choice respected by the Health and Social Care Information Centre (i.e. no data will be extracted from their GP record) according to the Secretary of State for Health  [col 147] – but when will the opt out – currently no more than a spoken promise – be put on a statutory basis? There seem to be no plans whatsoever for this.

Further wider consents: how patients will know what they have opted into or out from is currently almost impossible. We have the Summary Care Record, Proactive care in some local areas, different clinical GP systems, the Electronic Prescription Service and soon to be Patient Online, all using different opt in methods of asking and maintaining data and consent, means patients are unsurprisingly confused.

4b. Opt out: At what point do you determine that levels of participation are worth the investment and of value? If parts of the population are not represented, how will it be taken into account and remain valuable to have some data? What will be statistically significant?

5. Legislation around security: The Care Act 2014 is supposed to bring in new legislation for our data protection. But there are no changes to date as far as I can see – what happened to the much discussed in Parliament, one strike and out. Is any change still planned? If so, how has this been finalised and with what wording, will it be open to Parliamentary scrutiny?  The Government claim to have added legal protection is meaningless until the new Care Act Regulations are put in front of Parliament and agreed.

6. What of the Governance changes discussed?

There was some additional governance and oversight promised, but to date no public communication of changes to the data management groups through the HRA CAG or DAAG and no sight of the patient involvement promised.

The Data Guardian role remains without the legal weight that the importance of its position should command. It has been said this will be granted ‘at the earliest opportunity.’ Many seem to have come and gone.

7. Data security: The planned secure data facility (‘safe setting’) at HSCIC to hold linked GP and hospital data is not yet built for expanded volume of data and users expected according to Ciaran Devane at the 6th September event. When will it be ready for the scale of care.data?

Systems and processes on this scale need security designed, that scales up to match in size with the data and its use.

Will you proceed with a pilot which uses a different facility and procedures from the future plan? Or worse still, with extracting data into a setting you know is less secure than it should be?

8. Future content sharing: Where will NHS patients’ individual-level data go in the longer term? The current documentation says ‘in wave 1’ or phase one, which would indicate a future change is left open, and indicated identifiable ‘red’ data is to be shared in future?  “care.data will provide the longer term visions as well as […] the replacement for SUS.”

9.  Current communications:

    • How will GPs and patients in ‘pathfinder’ practices be contacted?
    • Will every patient be written to directly with a consent form?
    • What will patients who opted out earlier this year be told if things have changed since then?
    • How will NHS England contact those who have retired or moved abroad recently or temporarily, still with active GP records?
    • How will foreign pupils’ parents be informed abroad and rights respected?
    • How does opt out work for sealed envelopes?
    • All the minorities with language needs or accessibility needs – how will you cater for foreign language, dialect or disability?
    • The homeless, the nomadic,  children-in-care
    • How can we separate these uses clearly from clinical care in the public’s mind to achieve a genuinely informed opinion?
    • How will genuine mistakes in records be deleted – wrong data on wrong record, especially if we only get Patient Online access second and then spot mistakes?
    • How long will data be retained for so that it is relevant and not excessive – Data Protection principle 3?
    • How will the communications cater for both GP records and HES plus other data collection and sharing?
    • If the plan is to have opt out effective for all secondary uses, communications must cater for new babies to give parents an informed choice from Day One. How and when will this begin?

No wonder you wanted first no opt out, then an assumed consent via opt out junk mail leaflet. This is hard stuff to do well. Harder still, how will you measure effectiveness of what you may have missed?

10. Pathfinder fixes: Since NHS England doesn’t know what will be effective communications tools, what principles will be followed to correct any failures in communications for any particular trial run and how will that be measured?

How will patients be asked if they heard about it and how will any survey, or follow up ensure the right segmentation does not miss measuring the hard to reach groups – precisely those who may have been missed?  i.e. If you only inform 10% of the population, then ask that same 10% if they heard of care.data, you would expect a close to 100% yes. That’s not reflective that the whole population was well informed about the programme.

If it is shown to have been ineffective, at what point do you say Fair Processing failed and you cannot legally proceed to extraction?

> This list doesn’t yet touch on the hundreds of questions generated from public events, on post-its and minutes. But it would be a start.

*******

References for remaining questions:

17th June Open House: Q&A

17th June Open House: Unanswered public Questions

Twelve point plan [March 2014] positive suggestions by Jeremy Taylor, National Voices

6th September care.data meeting in London

image quote: Winnie The Pooh, A.A. Milne

#caredata, care.data, communications, confidentiality, NHS, NHSEngland, privacy, transparency, trust, women

care.data – the cut-outs: questions from minority voices

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]

My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

After taking part in the care.data advisory group public workshop 10.30-1pm on Saturday Sept 6th in London, I took advantage of a recent, generous gift; membership of the Tate. I went to ‘Matisse – the cut outs’ art exhibition.  Whilst looking around it was hard to switch off the questions from the morning, and it struck me that we still have so many voices not heard in the discussion of benefits, risk and background to the care.data programme. So many ‘cut out’ of any decision making.

Most impressive of the morning, had been the depth and granularity of questions which were asked.  I have heard varying aspects of questions at public events, and the subject can differ a little based on the variety of organisations involved. However, increasingly, there are not new questions, rather I hear deeper versions of the questions which have already been asked, over the last eighteen months. Questions which have been asked intensely in the last 6 months pause, since February 2014 [2] and which remain unanswered. Those from the care.data advisory committee and hosting the event, said the same thing based on a previous care.data advisory event also.

What stood out, were a number of minority group voices.

A representative for the group Friends, Families and Travellers (FFT) raised a number of excellent questions, including that of communications and ‘home’ GP practices for the Traveller community. How will they be informed about care.data and know where their ‘home’ practice is and how to contact them? Whose responsibility will that be?

I spoke with a small group a few weeks ago simply about NHS use in general. One said they feared being tracked down through a government system [which was used for anything other than clinical care]. They register with new names if they need to access A&E. That tells you already how much they trust ‘the system’. For the most part, he said, they would avoid NHS care unless they were really desperately in need and beyond the capability of their own traveller community ‘nurse’. The exception was childbirth when this group said they would encourage expectant mums to go into hospital for delivery. They must continue to do so when they need to and must feel safe to do so. Whether in general they may use primary care or not, many travellers are registered at GPs, and unless their names have been inadvertently cleansed recently, they should be contacted before any data extraction as much as anyone else.

Our NHS is constitutionally there for all. That includes groups who may be cut off from mainstream inclusion in society, through their actions, inaction or others’ prejudice. Is the reality in this national programm actively inclusive? Does it demonstrate an exemplary model in practice of what we hear said the NHS aims to promote?

Transgender and other issues

The question was posed on twitter to the event, whether trans issues would be addressed by care.data. The person suggested, that the data to be extracted would “out us as probably being trans people.” As a result,  she said “I’d want to see all trans ppl excluded from care.data.”

Someone who addressed ‘her complex gender identity’ through her art, was another artist I respect, Fiore de Henriquez. She was ‘shy of publicity.’ One of her former studios is filled with work based on two faces or symbiotic heads, aside from practice pieces for her more famous commissioned work.For her biography she insisted that nothing be concealed. “Put in everything you can find out about me, darling. I am proud to be hermaphrodite, I think I am very lucky, actually.” However, in her lifetime she acknowledged the need for a private retreat and was shy until old age, despite her flamboyant appearance and behaviour. You can see why the tweet suggested excluding any transgender data or people.

‘Transgender issues’ is an upcoming topic to be addressed at the NHS Citizen even on 18th September as well. How are we making sure these groups and the ‘other’ conditions, are not forgotten by care.data and other initiatives? Minorities included by design will be better catered for, and likely to participate if they are not simply tacked on as an afterthought, in tick-box participation

However, another aspect of risk is to be considered – missing minorities 

Any groups who opt themselves out completely, may find that they and their issues are under represented in decision making about them by commissioners and budget planning for example.  If authorities or researchers choose to base decisions only on care.data these discrepancies will need taken into account.

Ciarán Devane highlighted this two-sided coin of discrimination for some people. There are conditions which are excluded from care.data scope. For example HIV. It is included in HARS reporting, but not in care.data. Will the conditions which are excluded from data, be discriminated against somehow? Why are they included in one place, not in another, or where data is duplicated in different collections, where is it necessary, where is the benefit? How can you make sure the system is safe and transparent for minorities’ data to be included,  and not find their trust undermined by taking part in a system, in which they may have fears about being identified?

Missing voices

These are just two examples of groups from whom there had been little involvement or at least public questions asked, until now. The traveller and transgender community. But there are many, notably BME, and many many others not represented at any public meetings I have been at. If they have been well represented elsewhere, any raw feedback, with issues addressed, is yet to be shared publicly.

Missing voices – youth

A further voice from which we hear little at meetings, because these meetings have been attended as far as I have seen so far, mainly by older people, is the voice of our youth.

They are left out of the care.data discussion in my opinion, but should be directly involved. It is after all, for them that we need to think most how consent should work, as once in, our data is never deleted.

Whilst consent is in law overridden by the Health and Social Care Act, it is still the age old and accepted ethical best practice. If care.data is to be used in research in future, it must design best practices now, fit for their future purposes.

How will our under-18s future lives be affected by choices others make now on their behalf?

Both for them as the future society and as individuals. Decisions which will affect research, public health planning and delivering the NHS service provision as well as decisions which will affect the risk of individual discrimination or harm, or simply that others have knowledge about their health and lifestyle which they did not choose to share themselves.

Some people assume that due to social networks, young people don’t care about privacy. This is just not true. In fact, studies show that younger people are more conscious of the potential harm to their reputation, than we may want to give them credit for.

This Royal Academy of Engineering report, [3]” Privacy and Prejudice – Young People’s views on the Development of Electronic Patient Records” produced in conjunction with Wellcome from 2010, examines in some depth, youth opinions of 14-18 year olds.  It tackles questions on medical data use: consent, control and commercialism. The hairy questions are asked about teen access to records, so when does Gillick become applied in practice and who decides?

The summary is a collection of their central questions and its discussion towards the end, which are just as valid for care.data today, as well as for considering in the Patient Online discussion for direct care access. I hope you’ll take time to read it, it’s worth it.

And what about the Children?

Some of our most vulnerable, will have their data and records held at the HSCIC. There are plans for expansion rapidly into social care data management, aligned with the transformation of health and social services. Where’s the discussion of this? Does HSCIC even have the legal capacity to handle children’s social care data?

How will at-risk groups be safer using this system in which their identities are less protected? How will the information gathered be used intelligently in practice to make a difference and bring benefit? What safeguards are in place?

“Future releases of new functionality are planned over the next 12 months, including the introduction of the Child Protection – Information Sharing application which will help to improve the protection of children who have previously been identified as vulnerable by social services.” (ref: HSCIC Spine transition)

“Domestic violence can affect anyone, but women,
transgender people and people from BME groups are at higher risk than the general population.”
(Ref: Islington’s JSNA Executive Summary – 9 – August 2014)

 

We must ask these questions about data sharing and its protection on behalf of others, because these under represented groups and minorities cannot themselves, if they are not in the room.

Where’s the Benefit?

We should also be asking the question raised at the event, about the benefits compared with the data already shared today. “Where’s the benefit?”, asked another blogger some time ago, raising his concerns for those with disabilities. We should be asking this about new dating sharing vs the many existing research databases and registries we already have, with years of history. Ciarán Devane wisely asked this on the 6th, succinctly asking what attendees had expressed.

“It will be interesting to know if they can demonstrate benefits. Not just: ‘Can we technically do this?’ but: ‘If we see primary care data next to HES data, can we see something we didn’t see before’?”

An attendee at the Healthwatch run care.data event in Oxford last week, asked the same thing. NHS England and IT providers would, one would think, be falling over themselves to demonstrate the cost/benefit, to show why this care.data programme is well managed compared with past failures. There is form on having expensive top down programmes go awry at huge public expense and time and effort. On NpfIT “the NAO also noted that “…it was not demonstrated that the financial value of the benefits exceeds the cost of the Programme.”

Where is the benefits case for care.data, to weigh against the risks? I have yet to see a publicly available business case.

The public donation

Like my museum membership, the donation of our data will be a gift. It deserves to be treated with the respect that each individual should deserve if you were to meet them face-to-face in the park.

As I enjoyed early evening sun  leaving the exhibition, the grassy area outside was packed with people. There were families, friends, children, and adults on their own. A woman rested heavily pregnant, her bump against her partner. Children chased wasps and stamped on empty cans. One man came and sold me a copy of the Big Issue, I glimpsed a hearing aid tucked into a young woman’s beehive hair, one amputee, a child with Down Syndrome giggling with a sister. Those glimpses of people gave me images I could label without a second glance. Disabled. Deaf. Downs. There were potentially conditions I could not see in others. Cancer. Crohn’s. Chlamydia. Some were drinking wine, some smoking. A small group possibly high. I know nothing about any of those individuals. I knew no names, no addresses. Yet I could see some familial relationships. Some connections were obvious. It struck me, that they represented part of a care.data population, whom buyers and researchers  may perceive as only data. I hope that we remember them as people. People from whom this programme wants to extract knowledge of their lifestyles and lives, and who have rights to express if, and how they want to share that knowledge. How will that process work?

Pathfinders – the rollout challenges that remain?

At the advisory group led meeting it was confirmed that pathfinders, would be chosen shortly.

[CCGs were subsequently announced here,  see related links, end of page for detail, note added Oct 7th]

But  the care.data programme is “still delivering without a business case”.  Despite this, “between two and four clinical commissioning groups will be selected, “in the coming weeks” to begin the pathfinder stage of the care.data programme, ” reports NIB meeting[8]

It reports what was discussed at the meeting.

“The pathfinders will test different communication strategies before moving forward with the data extraction part of the project.”

I for one would be extremely  disappointed if pathfinders go ahead in the ‘as is’ mode.  It’s not communications which is the underlying issue still. It’s not communications that most people ask about. It’s questions of substance, to which, there appear to be still insufficient information to give sound answers.

Answers would acknowledge the trust in confidentiality owed to the individual men, women, and children whose data this is. The people represented by those in the park. Or by the fifty who gave up their time on a sunny Saturday to come and ask their questions. Many without pay or travel expenses just giving up their time. Bringing their questions in search of some answers.

The pathfinder communications cannot be meaningfully trialled to meet the needs of today and the future design, when the substance of key parts of the message is uncertain. Like scope.

The care.data advisory group and the Health and Social Care Information Centre , based on the open discussion at the workshop both appear to be working, “anticipating things to come…” and to be doing their best to put processes and change in place today, which will be “in step with the future.”

To what extent that is given the right tools, time and support to be successful with all of the public, including our minorities, I don’t know. It will depend largely now on the answers to all the open questions, which need to come from the Patients and Information Directorate at the Commissioning Board, NHS England.

After all, as Mr.Kelsey himself says,

“The NHS should be engaging, empowering and hearing patients and their carers throughout the whole system all the time. The goal is not for patients to be the passive recipients of increased engagement, but rather to achieve a pervasive culture that welcomes authentic patient participation.”

What could be less empowering than to dismiss patient rights?

The challenge is: how will the Directorate at NHS England ensure to meet all these technical, governance and security needs, and yet put the most important factors first in the design; confidentiality and the voice of the empowered patient: the voice of Consent?

*****

This post captured my thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.” This was about the people side of things. Part two, focuses on the system part of that.

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Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

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[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] https://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1

 

*****

More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

choice, commercial, empowerment, trust

What our grandparents called it.

I regularly talk with friends about food. Often over food. I like food. I like cooking. And as a result tend to use as unprocessed-as-possible ingredients, and start most things from scratch.

I have friends who can’t cook, or won’t cook, and I have friends who like the paleo direction, as I do. There is no right answer. But I do think that whatever we use to prepare our meals, we need to be aware of how it is packaged and marketed, in making our choices.

Some labels have more meaning than others. Fairtrade. Farm fresh. Or Red Tractor. Labels which look and sound good aren’t always exactly what they say on the tin, or what we think they mean. Or they mean different things in different countries. Like ‘Bio’ often conflated with organic.

Why do we need these packaging terms at all? Are they all genuine, of substance and meaningful for consumers, or are they marketing ploys?

I think often, on closer inspection, we may find these marketing labels are used to segment the market and make those who can, pay more for ‘better quality’ and ‘choice’ . It does not necessarily mean there is much  substantive difference behind the label.

Consumers should in theory drive the market by buying what we want. But do we know what we want or are we led by marketing?

Are we nudged in the direction of the product the vendors want to sell us though clever marketing?

The total 2013 UK advertising spend reached a new high of nearly £14bn, topping pre-financial crash levels for the first time in six years. Companies must think that is money, worth spending.

How free is our choice?

I would like to think we collectively focus on the core value of what we want as a consumer not just for ourselves but for society. Decent, affordable, production aware, nutrition for all.

However reality is that those who can afford choice, worry whether it is organic or bio, chemical free or free range. Those who cannot afford it, are left with the ‘value’ ranges. It’s never marketed as ‘the cheapest option.’

When I was a teen in school, “Home economics,” classes were compulsory but the content changed to become focused on things we were ‘all’ ‘capable of’ – homemade pizza for example.  Now we ask ourselves why are so many of our generation and their kids obese? We seek solutions for weight management. Could we not go back to basics, and fix the root cause – teach all of our kids to cook, and I mean, simple, real, food? Teach us all to understand food labels. Accompanied by a living wage for all, we could both eat more simply and I believe it would make savings in health benefits.

We need our children educated not to fall for marketing without understanding it.

Uninformed, we cannot make informed choice.

Our food and our health and inexorably linked.

When it comes to healthcare, we keep hearing labels, and ‘choice’, and it’s wrapped in plenty of packaging. Patient empowerment. Personalised medicine. Patient centred care. I do wonder if we don’t over-complicate simple things.

Can care be anything else *but* patient centred?

Let me ask the question – could we consider just going back to plain language. Without having to put it through ‘Plain English’ first? Patients need care. From other people. Professionals in whom we trust. Drop the patient-centric, patient-led language.

Let’s just have, as our grandparents used to call it, [1] ‘care’.

Don’t misunderstand me. I am passionate about patient and citizen participation. It’s why I have spent all my free time of the last ten months understanding care.data and the recent NHS market changes. But it’s the way it is packaged to us, I would like more people to explore and to question whether we really need all the outside layers, or whether it detracts from the most important questions.

Is all the talk around patient-centric really a move towards passing responsibility for payment?

Most people are responsible in their own healthcare as far as they can be. When we can help ourselves, we mainly do. Most people actually are not that good at asking for help, even when they need it. We like to be self-reliant. We know we could eat better, drink less, exercise more.  We know we need to manage our treatments and lifestyle. We do, and honestly, if we don’t always do it, it’s not going to help us by repackaging the responsibility, which we know we already have. The majority of people are as responsible as they feel able to be.

Many are pushed to their limits in society of how much more responsibility they can take on. They struggle to feed and care for their families, and don’t ask for help until they really have no other option. We may not want or be able to take on extra responsibility. When we are vulnerable, we trust others to help us.

Choice in those circumstances, is a luxury that’s not high on the priority list.  Choice becomes a catchphrase, not a reality. It’s not just that for everyone, but that’s the point. Choice becomes open to some, and closed to others. Some can choose organic, others are left with the ‘value range.’

It’s not perhaps PC to stand up and ask this of everyone with the best of ‘patient-centred’ intentions.  I love and commend the intentions here.[2]

I love the spirit that patient leaders intend to ‘enable’ patient empowerment, but what does that really mean?

To me, it infers the belief we patients have no power and therefore no responsibility, right now. It infers we need some seismic shift in current care. I disagree. Care in which I have been involved has always been about a co-operaton between the professional and patient needs, and respectful. It’s what our professionals *do*. It’s  already a partnership of trust and we trust professional opinion to take much of the responsibility for our care, in our best interest.

Yes we can get labelled as a bed or a surname. Yes, there is always room for improvement. Some have had awful individual experiences. It is perhaps a luxury of relativley good health that my family has experinced simple and good care, and perhaps it is for those who have more complex conditions that the system must focus improvement.

But are we not in danger of getting so focused away from care and on the patient-power as marketing jargon that we forget that the patients are simply, people, in need of professionals, who care?

We lose focus on asking how is the delivery of that care being supported by those responsible for it, from the top down?

Are we so focused on the solution, and this drive for change, that we are not asking, what is the root cause behind this need?

When we hear farm fresh and bio, we tend to conflate them with healthy, and better for us. If a package says tomatoes, vs bio tomatoes, which do you go for? But just the word ‘bio’ may be a meaningless marketing term. It’s a promotional tool, to make us want it. It is not the same as regulated words which mean not chemically treated, for example.

And so it is with health.

In all this ‘talk’ of patient power, is the real deal deliberately obfuscated?

Being told we should have choice,  is to make us want something, demand something, create a demand in patients that in fact, we may not want at all, but start to believe we do.

Is there really a patient desire across so many of us for choosing our own hospitals or do we not just want to go somewhere near, which our families can visit to get good care? Reducing monetary inefficiences is becoming conflated [3] with overall improvement – seeing care only as a supply chain product.

Is there really a need for the drive for ever more comparison data between consultants and between GPs which we are told supports ‘choice’?

Is a market being created, for which there is little public desire?

In a market driven by payment-by-results, fewer patients can mean fewer pounds. GP Boundaries are due to be abolished in October 2014.  More GPs are going to be forced to close if nothing changes in funding. Or they amalgamate or are taken over by corporate private management, like this practice. [3b] ‘Choice’ may exacerbate these changes. And it was foreseeable, as Sir Kinglsey Manning predicted in 2006 in the Inevitable Decline of the GP Partnership. 

Are we being manipulated into wanting what others want us to want? Is the patient-centric conversation keeping us distracted from the overriding factor in current policy – the drive from top-down to cut costs? The choice made by Government to create a gap between need and what is being provided from the public purse strings?

Between the 2012 Nuffield Report [4] and today’s £30bn, there must be reliable numbers somewhere. As a lay patient, it’s hard to know what is reliable and how to get an informed understanding.

It will be even harder to make a patient choice, if there’s no money available to offer any services to choose from.

If we can’t afford to be self-payers, privately insured, what then? This is the real impact patient choice will have. Some will have choice, and many will have none. Some will have care, and many will have none.

We will have facilities closed, which cannot offer care. And facilities open, where patients cannot afford to go.

Twenty years on, Yes Minister still makes me laugh. It’s possibly even less PC now, than it was then. But are some of the storylines still relevant? Perhaps more than ever.

“Get rid of 300 of your people, and get some doctors, and nurses, and get some patients.” | Yes, Minister – the Compassionate Society

We hear now increasingly of the secondary care closures, and the looming primary care crisis in GP recruitment and we ask, what shall we do?

We need to stand up and demand fixes for the root causes and not pussy foot around with words and the PC solution to an artificial need, which avoids the basic issues. Shortage of cash and staffing.

Patients must better understand the changes in this market creation for it to work – but not all change is equally good

University fees still make studying medicine expensive, even if part supported. GPs are not always, contrary to some media-hype, the best paid in medicine. It is interesting to look at a study in the unit costs of health and social care [5]. When students draw towards the end of their expensive studies it is unsurprising many look for the best paid jobs and specialisms may appeal.  I recently spoke with one mid-year student about her future and she was looking at brain surgery or psychology. The reason? She thought GPs in the future of the NHS was ‘too unpredictable’.

The seniority pay system has been scrapped for new entrants and reduced for those already in, so they can’t look forward to natural salary progression with really good benefits later on either.

Top and tail, the profession has been hacked off, in both senses.

Against a backdrop of regular undermining like the ‘maggotgate’ scandalous misrepresentation in the media, top-down imposed changes have been a heavy burden on GPs who continue to put patients first and care for us.

They’re coping with  a technical support system [6] under constant tinkering with its admin processes which may not offer any local benefit, changes to core work [7], potential outsourcing [8] and job losses, the destabilisation of support, and both increased marketisation [9] and general lack or stalling of funding since 2010. [10]

And that’s only from an outsider patient’s point-of-view. Patients, ask your GPs.

It feels to me very much as if ministers want to pass the buck (pun intended) back to patients – if we’re responsible for the management of our care today, we’ll likely be responsible for the cost of it tomorrow.

The concept of promoting patient choice, of patient-led decision making though fundamentally not flawed, deflects from the responsibility of others in care provision. It suggests that the patient is to be solely responsible. There are of course aspects of care we can and should manage ourselves. But I don’t feel this is the primary driver of the initiative, in annual reports and roadmaps. It is all about budget, lack of budget and reduced budget.

“Choice” has become the marketing watchword to package the market force of competition to patients.

It has driven wedges between services and broken others apart, causing the lack of integration which is the very thing they now purport to be key to success in health and social care.

A decentralised, and broken up market is easier to manage by private providers, choice for patients exists only by having multiple providers, which only works if you first break up the NHS single delivery model.

We are told that we are to be risk-stratified this year in GP practices, taking our patient records and analysing them at the practice, CCG or Health and Social Care Centre approved site. By segmenting groups who will be most at ‘risk’ and therefore need higher levels of care, they will also assess those who cost the most. These segments focus for example on COPD, Diabetes, Stroke, and the over 75s repeat hospital admissions.

I worry that there are many vulnerable, such as mental health patients, whose segmentation will stigmatise and put them at risk in ever smaller funding pools.

The idea of personal budgets is a slippery first step, to segmenting out treatments and patients who may or may not be covered by NHS care.

An individual budget, a personal shopping basket, can more easily be analysed by a health insurer for example, or simply reduced by the State to be able to buy less at the State till, without topping it up with our own private contribution.

Over 40% of social care users in England [12] are managed in this way. Social care where the issues of AQF have come well documented, as private providers seek ever to reduce costs.

We are rapidly losing control of that social care market. US investors are snapping up the profitable parts of the sector, with the long term prospect of the wealthy self-pay areas provided for by US investors [13], and the poorer local authority-paid homes? well, we’ll wait and see.

Many elderly are left with ‘the cheapest option’. They may or may not think that it is good value.

If patients are empowered as the new consumers in the healthcare market, we need to speak up for what we want

Let’s cut out all the PC talk and talk to government about getting university (medicine) fees reduced or cut. Stop any new reforms and let the profesionals get on with their job of caring. Let’s cut down on the promotional packaging, and management consultant-speak in healthcare. Drop the patient-led, patient-centric. There are pages and pages in brochures on patient empowerment but patients, we need a bit more revolt, questioning why these changes are needed and what is the root of change required. As so wonderfully put recently, we need ‘revolting patients.’ (p.19) [11] We need patients putting first, but let’s first focus on the care.

Care. That’s what matters. It’s that simple. Not patient empowerment, centric or led packaging and labels. Not parcels of personalised care budgets, packaged as ‘gifts’ and choice to us.

We want as patients for our care and the support of the system of our care to be at the centre of focus.

We need the state to manage that there is enough money in the pot to provide a duty of care for all, fairly, and provide  enough trained professional staff to do so.

There is a darn big hole predicted of £30bn between planned spend and need. It’s not going to all come from savings from thin air, nor to pay for itself, so patients, who do you think the Government is expecting to pay for it?

Changes have already been made in what is ‘free on the NHS’ i.e. possible to prescribe, such as hearing aids, other areas may be under discussion, for example in kidney dialysis.

Patients, we need not be ’empowered’ to wake up to the marketing ploys. Speak up, or we are complicit in our own downfall.

Is this the best path for care in this country, or is it a policy underpinned by an  ideology which has removed the Secretary of State’s Duty of Care [14], a duty to provide, and replaced it with a duty to promote?

“The Secretary of State must continue the promotion in England of a comprehensive health service.”

Let’s challenge the drivers of marketing speak and the market based health provision. A market inevitably leads to those who can afford it, having the choice. And those who can’t, are left with the ‘value’ range. They may be left with nothing at all when they need it, if the duty of care, has been replaced with nothing but promotion.

NHS patient empowerment is like buying organic. It’s a false choice. In a system designed to have fair access for all, we should not look to segment the patients, seen as consumers, into those who can pay the most for choice, and those who cannot afford to.  Nor should we only see the benefits of personalised budgets.

Let’s ask to talk about the basics. Let’s focus on the care and providing enough funds to do it right. At patient events we need to ask what are the planned costs and where is the budget for them? What is about to be merged with Local Authority budgets for social care? What is ring-fenced and what is not? Where will decision making lie in a merged future?

Where is the Social care and Health Strategy and the benefits plan – have you seen one? I haven’t.

Let patients be patients, and professionals get trained and supported to do their job.

Government, of any colour, must ensure responsibility for the duty of care is not passed along the supply chain. These issues are cross-party and cross parliamentary terms.

The NHS belongs to us all, and should be there, for us all, and not create a three-tiered consumer market in health. Those with choice, those with state care from the ‘value’ range’, and those with neither.

Yes, Minister? [15]

********

[1] Ken Loach made Interviews on the birth of the NHS http://www.thespiritof45.com/Interviews-Archives/Health

[2] Prioritising person-centred care – the evidence http://www.nationalvoices.org.uk/evidence

[3] Wall Street Journal – blog – How Eliminating Inefficiences Can Elevate Hospital Pharmacy As A Strategic Asset http://online.wsj.com/article/PR-CO-20140506-908700.html

[3b]  Privatisation behind an Invisibility Cloak – blog by Dr.David Wrigley http://drdavidwrigley.blogspot.co.uk/2014/06/privatisation-behind-invisibility-cloak.html?m=1

[4] the 2012 Nuffield Report- The funding pressures facing the NHS from 2010/11 to 2021/22

[5] Unit Study in Health and Social Care http://www.pssru.ac.uk/project-pages/unit-costs/2013/index.php

[6] Fears for QOF funding as NHS draws up contingency plans to pay GPs from next month http://www.pulsetoday.co.uk/your-practice/practice-topics/qof/fears-for-qof-funding-as-nhs-draws-up-contingency-plans-to-pay-gps-from-next-month/20006085.article
[7] Pulse: Dramatic’ changes to GP contract by next April as Hunt spells out detail of general practice reform, 12 Sept 2013 by http://www.pulsetoday.co.uk/home/gp-contract-2014/15/dramatic-changes-to-gp-contract-by-next-april-as-hunt-spells-out-detail-of-general-practice-reform/20004293.article
[8] Primary care contracting faces cuts and outsourcing, 5 Nov. 2013 by http://www.hsj.co.uk/home/commissioning/primary-care-contracting-faces-cuts-and-possible-outsourcing/5065021.article
[9] NHS shakeup: Private companies see potential to expand their role – Denis Campbell, July 2010 – Firms aim to to gain unprecedented foothold in healthcare system once GPs start spending £80bn of NHS funds – http://www.theguardian.com/society/2010/jul/12/nhs-private-companies-gps-funds
[10] GP Online – Cuts to enhanced services across England will wipe out slim uplifts to GP contract funding agreed for 2011/12, a GP investigation reveals. By Stephen Robinson on the 19 October 2011 www.gponline.com/exclusive-practices-face-28000-service-cuts/article/1099085
[11] Reflections – Have we empowered patients Essay: p.19 Jeremy Taylor, Chief Executive, National Voices
[12] A report by the All Party Parliamentary Groups on Global Health; HIV/AIDs; Population, Development and Reproductive Health; Global Tuberculosis; and Patient and Public Involvement in Health and Social Care – May 2014 – http://www.patientsorganizations.org/attach.pl/1786/2114/APPG%20Global%20Patient%20Empowerment%20Report.pdf
[13]  Social Care – US investors snap up UK care homes, FT, June 10, 2014 – by Gill Plimmer – http://www.ft.com/cms/s/2/6da9f5bc-f08d-11e3-8f3d-00144feabdc0.html#axzz34kzPdWXd

[14] Health and Social Care Act 2012 http://www.legislation.gov.uk/ukpga/2012/7/section/1

[15] Yes Minister – “The Compassionate Society” (se2 ep1)
Created by Antony Jay & Jonathan Lynn. Broadcast February 23, 1981 – http://www.youtube.com/watch?v=x-5zEb1oS9A

 

 

#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?

activism, empowerment, engagement, politics, women

Deeds not Words – Women’s Political and Electoral Engagement

Suffragette
ca 1920 first US election to offer women the right to vote

“A hundred years on, would those suffragist women feel it was worth their collective effort and what it cost them as individuals?”

One hundred years ago today, protestors gathered outside Buckingham Palace under the banner of ‘Votes for Women‘. It was barely a year since the death of Emily Wilding-Davison at the Derby in June, 1913. Possibly the best known of the women who had campaigned in the suffragist movement (1), made famous after she died from her injuries after being trampled by the King’s horse Anmer at Tattenham Corner (2). There is still debate whether it was suicide or accidental.

The National Union of Women’s Suffrage (the NUWSS) had failed through peaceful means to reach their goal despite having the support of men and members’ bills in Parliament. The Sufragette group, the WSPU, were less patient.

Under the slogan ‘Deeds not Words’, the anniversary of Emily Wilding Davison’s death last summer triggered a spate of features. There was an excellent historical account delivered in Parliament, by Dr. Mari Takayanagi (4), which includes how the movement and ‘votes for women’ and first female MPs appeared to have made a difference in Parliament.

“There was a raft of legislation passed throughout the 1920s on issues that affected women’s lives and gender equality – including things like the Sex Disqualification Removal Act which allowed women to practice as lawyers, to enter professions like accountancy and become vets and so on for the first time. There were acts about things like pensions; there were acts allowing women to inherit property; there were acts about things like the age of consent and the sale of alcohol to young people. The list goes on and on.

And none of this kind of thing was passed before the First World War and you’ve got to think it’s because women are part of the electorate now and the male MPs had to sit up and take notice of their views as they hadn’t before.”

However, what has been done since the anniversary to address the importance and relevance of women’s votes today and to encourage electoral engagement before these European and local elections on May 22nd 2014?

A hundred years on, would those suffragist women feel it was worth their collective effort (3) and what it cost them as individuals?

In 2013 my local election saw the Conservative candidate win only 231 votes ahead of UKIP – both candidates attaining over 1000 votes, in a turnout of barely 32%. I spoke to her and others, after that vote, on the subjects of women in politics and the continued importance of women’s rights and activism.

Pat Arculus, is our Conservative County Councillor and an Adult Safeguarding Champion. She said,

“It’s a funny game politics, how can we change it? I’ve just been watching Question Time. They’re arguing about the Health Service. You watch it and think, how is this relevant? Why don’t they just get together and sort it out? I think that may be it, women just want to get things done. You run a family, you have a problem, you sort it out and get on. You don’t spend hours arguing about it. Perhaps that’s what puts women off politics.”

Women today in the UK get to participate in the democratic process thanks at least in part, to the efforts and commitment of those women, not so many generations ago  But do women today see the need for their active participation? According to Mrs. Arculus, her recent experience of electoral engagement is poor.

“There is a complete disaffection. It’s not even apathy. It’s “we don’t like politics”, “it doesn’t make any difference,” and “it doesn’t matter who we vote for.” If our young people hear that, then it’s a self-fulfilling prophecy.

“I was delivering leaflets and teenagers in the garden, I don’t know if they were of voting age, said, “no no take it back, we don’t vote for them.” I was shocked. As a mother it’s not my place to tell them who to vote for. I’d say to young people, read everything, read them all and make your own mind up. If you go into schools and they run mock elections, they are more active than we give them credit for. They seem to lose it, when they get older and don’t see any point.”

But this comment from a year ago, is what we must encourage the major parties pay attention to now, for the 2015 General election:

“In the last election, my majority fell from 2,800 to 220 and that all went to UKIP. So the public are feeling angry, about something.”

Emily Davison, with a first class degree in English as a man, could have walked into many jobs. In her time, with the equivalent as a woman, she was unable to participate in various circles, and found work as a governess and then, as a result of her activism, was sacked.

The issues of equal employment rights, pay and the role of women in childcare and the home are as current today as they were then. We should not take women’s rights to vote here, or in non-UK locations for granted even in countries we may not expect it. Switzerland granted women the vote only in 1971, and it wasn’t until the 90s in some municipalities. And it is easy to forget that full Parliamentary equality in the UK was not achieved until the Peerages Act of 1963.

Women as MPs, mothers, as managers, all as ordinary citizens need to stay as alert as ever to the equality of rights we have come to expect as the norm, to preserve them and to pass on their worth and relevance to our children. Men need to as well, just as importantly.

Rosamund McNeil, Head of Education and Equality at the NUT told me,

“Sometimes it is taken for granted that women today can have public roles, a life outside the home and can speak for themselves. The suffragettes must be celebrated because it reminds us that change and progress is hard won, and that gains for women must be guarded and not reversed. By looking back, it can generate creativity about how to take forward the debate on women’s inequality. I think their stories can inspire young women today to take control of their lives, to make their voices heard and to defy the stereotypes that remain about what women should say, think and do.”

So are the voices of our young women being included and heard in the current election? The suffragist women campaigned with passion for enfranchisement, for the right to vote and to have woman’s voices heard. One may say today,  to become empowered.

There is a feeling about voting today, that it has lost its power.  Not just for women. As exemplified in Pat Arculus’s story, the feeling that whoever we vote for makes no difference, it’s all the same anyway. Talking to people on the street this week about the European Election on May 22nd, I heard the same things.

Worryingly for me, I’ve found there is an undercurrent of nervous excitement when someone mentions UKIP. In our exchanges in the street, whilst out campaigning to encourage voting participation (of any party) on the European Election, there was a spark in the conversation. People talk openly between each other, of a shake up, of change. Men I spoke with seem quite unconcerned with racism or policy, almost as if acknowledging that there’s a touch of racism and misogyny in all of us, just the ‘real politicians’ are too plastic to let it show. A few men brushed aside hard questions, with a hand flutter of bravado. You get the feeling, there’s almost a hint of ‘at least he’s himself, flaws and all.’

Our respected elder statesmen, have for the most part, left the House of Commons.  We hear staged soundbites and laugh at PR gaffes. But is this to the detriment of politics seeming real? Has spin created an image of politics so worried about what it looks like in the press (5), that to the people it looks like nothing we can connect with or trust? So afraid of making a mistake, that can be exploited by the other side, that the leaders have forgotton who they really are at heart and why we should trust in them?

I feel it is this, which women in England feel disaffected by, why politics seems like a man’s game. But both men and women appear to feel disenfranchised, that mainstream parties are too similar, and anyway, ‘they’re all politicians’. 72% of adults surveyed by Ipsos Mori last June felt in general MPs could not be trusted to tell the truth (10). We don’t trust most politicians, we can’t be bothered with all the game playing and word play behind ceremony and late night debates with party political point scoring. We’ve too much else to do with family, work, volunteering and caring, and everything else women take on and juggle. That’s the impression and sentiments I have been given listening on the street to the middle aged and younger voters.

The risk is, through lack of political involvement we disempower our voice. It is even harder to influence politics from outside. The broader risk is, we also see women falling away from the polling booths as was reflected in some of the women I spoke to this week, who either weren’t aware of the election or did not plan to vote on May 22nd. Political apathy leads to electoral apathy as well.

We also risk passing on that disinterest and lack of knowledge to our children.  As one 17 year old girl told me when I asked how they would feel about voting in the next General Election,

“I don’t know anything about it. I don’t think it matters what you vote for, so I don’t think I would. I thought Tony Blair was Prime Minister till someone told me last week he’d changed.”

Her friend added,

“It’s quite exciting though. Seeing as we would be allowed to (vote) for the first time.”

I’d like to think that spark of excitement, could be spread, and underpinned by some conscious thought, to make a difference in the future. But surrounded by friends or family who are apathetic, without encouragement, it is likely to be put out.

Women who choose not to vote run the risk that we will enable men with the hints of the Farage to become empowered through our inaction.  I’m not saying all men, and all women, revealed this split in  tendencies by any means. Or that support of any party is gender based. But it was a noticeable enough trend in a spread of white, middle class Sussex adults whom I spoke with this week.

As it appears manstream parties which have become ever closer together are not representing the views of many people and are not to be trusted, people are looking at the outer wings of the political spectrum, and looking to people who may be imperfect, but look and sound real.

Overall, people just want a decent life in which people get on, are safe, thrive and look out for one another. Most people, like society to be inclusive. That’s what I picked up in a the majority of opinions. But they don’t appear to believe that common sensed approach is well enough represented in politics. Because party politics skews it.

Just talking to people, it appears a common thread that when it feels that manifestos are meaningless especially in coalition (6), people fail to trust them and the parties who propose them. Unable to be convinced by policies, they are instead attracted to people they believe in. We need people with whom the disenchanted can connect in a sensible way without having to reach out to the extreme margins of politics. We need policies and politicians we can trust. We need genuine, passionate people we can believe in.

We need to see that there is value in our vote and see a need to use it wisely.

As the Rt Hon the Baroness D’Souza reiterated in a presentation (7) last autumn,

“political engagement is not a luxury which can be tacked on to society, once it is sufficiently developed. It is a basic human right which affects our lives and livelihoods.”

You could argue that where people’s priorities are simply subsistence and survival, political empowerment is low on their agenda. Standing up for political and electoral involvement should not be a luxury in the UK, where we might believe developmental barriers do not stand in our way to political engagement. But there are many families and individuals in this country for whom economic security or access to further education are not a given.  Government policies which undermine  either for any parts of society, risk not only harming parity of esteem, but risk undermining the opportunities for full & equal access to involvement in political engagement,  which undermines basic democracy.

The electoral commission, identified (8) that those suffering from social deprivation tend to also be the most politically excluded in society and political disengagement can itself be a form of social exclusion.

A basic lack of trust in our elected representatives, is a sad state of affairs. Combined with a lack of knowledge,  a cynicism about politics is shaping politics in ways which mainstream parties should be taking seriously and acting upon.

According to an Ipsos MORI poll in December 2013, 77% of adults asked agree that they know less about the issues in a European Parliamentary Election than at a General Election. (9)

“Public cynicism with politics is nothing new, but it looks like it has become entrenched.  Disenchantment with politicians is shared across supporters of all parties – but is noticeably higher among UKIP voters, who seem most unhappy with the current political scene.” (Ipsos MORI 10)

It might not be sweet in reality to become actively, politically  involved, like Disney’s Mrs. Banks would have us believe of the suffragettes, but we need to remember their ‘Deeds not Words’ of the past. We need to remember why it is still necessary today. And we need to encourage our friends, family and daughters to remember Emily and all the ordinary women who made a difference, so that we may have the choice to vote as a right, one which they had to fight for.

No matter how disenchanted we feel, we are no longer  disenfranchised unless by choice. Women, get out and vote.  Get electorally involved at least. Remember what others sacrificed for us to be able to do so. Well done  sister suffragette!

If the majority of the population don’t vote, we shouldn’t be surprised if the collective majority opinion, is less represented than it should be. That allows the extreme views, over representation.

We need our collective engagement just as much today, as a hundred years ago.

____

Refs:

1. Votes for Women Open lecture slides by Dr. Mari Takayanagi

2. British Pathe – Emily Davison and the Derby

3. BBC bitesize history of the Suffrage movement

4. Dr. Mari Takayanagi full lecture notes

5. Rebranding ed Miliband – The Guardian April 2nd 2014,  Krishnan Guru-Murthy, Michael White, Lauren Cochrane, Lance Price and David Schneider

6. Defending the Coalition will cost the Lib Dems letter from Social Liberal Forum, August 2013

7. Towards Political engagement for women Rt Hon the Baroness D’Souza presentation Nov 2013, Parliament Week 2013

8. Social exclusion and political engagement Research report by the Electoral Commission – Nov 2005

9. Ipsos MORI December 2013 poll. Ipsos MORI interviewed a representative sample of 1,286 adults aged 18+ across Great Britain.

10. Ipsos MORI 2013 Trust in MPs poll, Ipsos MORI interviewed a representative sample of 1,023 adults aged 18+ across Great Britain. Data are weighted to match the profile of the population.