Category Archives: change

#caredata, care.data, change

Building Public Trust [5]: Future solutions for health data sharing in care.data

This wraps up my series of thoughts on ‘Building Public Trust’ since the NIB Bristol meeting on July 24th.

It has looked at how to stop chasing public trust and instead the need to become organisations that can be trustworthy [part 1]. What behaviours make an organisation trustworthy [part 2]. Why fixing the Type 2 opt out is a vital first step [part 3], and why being blinded by ‘the benefits’ is not the answer [part 4], but giving balanced and fair explanations of programme purposes, commissioning and research, is beneficial to communicate.

So I want to wrap up by suggesting how communications can be improved in content and delivery. Some ideas will challenge the current approach.

Here in part five: Future solutions, I suggest why aiming to “Build Public Trust” through a new communications approach may work better for the public than the past. I’ll propose communications on care.data:

  • Review content:  what would ethical, accurate content look like
  • Strengthen relationships for delivery: don’t attempt to rebuild trust where there is now none, but strengthen the channels that are already viewed by the public to be trustworthy
  • Rethink why you communicate and the plan for when: All communications need delivered through a conversation with real listening and action based upon it. Equal priority must be given to both a communications plan for today and for the future. It must set out a mechanism for future change communications now,  before the pathfinders begin
  • Since writing this, the Leeds area CCGs have released their ‘data sharing’ comms leaflet. I have reviewed this in detail and give my opinions as a case study.

NIB workstream 4, underpins the NHS digital future,  and aims to build and sustain public trust, delivering plans for consent based information sharing and assurance of safeguards. It focuses on 4 areas: governance and oversight, project risks, consent and genomics:

“The work will begin in 2015 and is expected to include deliberative groups to discuss complex issues and engagement events, as well as use of existing organisations and ways to listen. There will also be a need to listen to professional audiences.”  [NIB work stream 4] [ref 1]

Today’s starting point in trust, trust that enables two-way communication, could hardly be worse, with professionals and public audiences. Communications are packaged in mistrust:

“Relations between the doctors’ union and Health Secretary Jeremy Hunt hit a new low following his announcement in July that he was prepared to impose seven-day working on hospital doctors in England.” [BBC news, Aug 15, 2015]

There appears to be divided opinion between politicians and civil servants.

Right now, the Department of Health seems to be sabotaging its own plans for success at every turn.

What reason can there be for denying debate in the public domain of the very plans it says are the life blood of the savings central to the NHS future?

Has the Department learned nothing from the loss of public and professional trust in 2014?

And as regards the public in engagement work, Hetan Shah, executive director of the Royal Statistical Society said in 2014, “Our research shows a “data trust deficit”. In this data rich world, companies and government have to earn citizens’ trust in how they manage and use data – and those that get it wrong will pay the price.’ [RSS Data Trust Deficit, lessons for policymakers, 2014] [2]

Where do the NIB work stream discussions want to reach by 2020?

“The emergence of genomics requires a conversation about what kind of consent is appropriate by 2020. The work stream will investigate a strand of work to be led by an ethicist.” [NIB work stream 4]

Why is genomics here in workstream 4, when datasharing for genomics is with active consent from volunteers? Why will a strand of work be led by an ethicist for this, and not other work strands? Is there a gap in how their consent is managed today or in how consent is to be handled for genomics for the future? It seems to me there is a gap in what is planned and what the public is being told here. It is high time for an overdue public debate on what future today’s population-wide data sharing programme is building. Good communication must ensure there are no surprises.

The words I underlined from the work stream 4 paper, highlight the importance of communication; to listen and to have a conversation. Despite all the engagement work of 2014 I feel that is still to happen. As one participant summed up later, “They seem hell bent on going ahead. I know they listened, but what did they hear?” [3]

care.data pathfinder practices are apparently ready to roll out communications materials: “Extraction is likely to take place between September and November depending on how fair processing testing communications was conducted” [Blackburn and Darwen HW]

So what will patient facing materials look like in content? How will they be rolled out?

Are pathfinder communications more robust than 2014 materials?

I hope the creatives will also think carefully, what is the intent of communications to be delivered.  Is it to fully and ethically inform patients about their choice whether to accept or opt out from changes in their data access, management, use and oversight? Or is the programme guidance to minimise the opt out numbers?

The participants are not signing up to a one time, single use marketing campaign, but to a lifetime of data use by third parties. Third parties who remain in role and purposes, loosely defined.

It is important when balancing this decision not to forget that data  that is available and not used wisely could fail to mitigate risk; for example in identifying pharmaceutical harms.

At the same time to collect all data for all purposes under that ‘patient safety and quality’ umbrella theme is simplistic, and lends itself in some ways, to lazy communications.

Patients must also feel free and able to make an informed decision without coercion, that includes not making opting out feel guilty.

The wording used in the past was weighted towards the organisation’s preference.  The very concept of “data sharing” is weighted positively towards the organisation. Even though in reality the default is for data to be taken by the organisation, not donated by the citizen. In other areas of life, this is recognised as an unwilling position for the citizen to be in.

At the moment I feel that the scope of purposes both today and future are not clearly defined enough in communications or plans for me personally to be able to trust them. Withholding information about how digital plans will fit into the broader NHS landscape and what data sharing will mean beyond 2020 appears rightly or wrongly,  suspicious. Department of Health, what are you thinking?

What the organisation says it will do, it must do and be seen to do, to be demonstrably trustworthy.

This workstream carries two important strands of governance and oversight which now need to be seen to happen. Implementing the statutory footing of the National Data Guardian, which has been talked about since October 2014 and ‘at the earliest opportunity’ seems to have been rather long in coming, and ‘a whole system’ that respects patient choice. What will this look like and how will it take into account the granular level of choices asked for at care.data listening events through 2014?

“By April 2016 NIB will publish, in partnership with civil society and patient leaders, a roadmap for moving to a whole-system, consent-based approach, which respects citizens’ preferences and objections about how their personal and confidential data is used, with the goal of implementing that approach by December 2020.”

‘By December 2020’ is still some time away, yet the pathfinders for care.data rolls on now regardless. The proof that will demonstrate what was said about data use actually is what happens to data, that what is communicated is trustworthy, is part of a system that can communicate this by recording and sharing consent decisions, “and can provide information on the use to which an individual’s data has been put. Over the longer term, digital solutions will be developed that automate as far as possible these processes.”

Until then what will underpin trust to show that what is communicated is done, in the short term?

Future proofing Communications must start now

Since 2013 the NHS England care.data approach appeared to want a quick data grab without long term future-proofed plans. Like the hook-up app approach to dating.

To enable the NIB 2020 plans and beyond, to safeguard research in the public interest, all communications must shape a trusted long term relationship.

To ensure public trust, communications content and delivery can only come after changes. Which is again why focusing only on communicate the benefits without discussing balance of risk does not work.  That’s what 2014 patient facing communications tried.

In 2014 there were challenges on communications that were asked but not answered, on reaching those who are digitally excluded, on reaching those for whom reading text was a challenge, and deciding who the target audience will be, considering people with delegated authority young and old, as well as those who go in and out of GP care throughout their lives, such as some military. Has that changed?

In February 2014 Health Select Committee member Sarah Wollaston, now Chair, said: “There are very serious underlying problems here that need to be addressed.”

If you change nothing, you can expect nothing to change in public and professional feeling about the programme. Communications cannot in 2015 simply revamp the layout and pacakging. There must be a change in content and in the support given in its delivery. Change means that you need to stop doing some things and start doing others.

In summary for future communications to support trust, I suggest:

1. STOP: delivering content that is biased towards what the organsation wants to achieve often with a focus on fair processing requirement, under a coercive veil of patient safety and research

START: communicating with an entirely ethical based approach reconsidering all patient data held at HSCIC and whether omission of  ‘commercial use’, balanced risks as identified in the privacy impact assessment and stating ‘your name is not included’ is right.  

2. STOP: Consider all the releases of health data held by HSCIC again and decide for each type if they are going to deliver public confidence that your organisations are trustworthy. 

START: communicate publicly which commercial companies, re-users and back office would no longer be legally eligible to receive data and why. Demonstrate organisations who received data in the past that will not in future.  

3. STOP: the Department of Health and NHS England must stop undermining trust in its own leadership, through public communications that voice opposition to medical professional bodies. Doctors are trusted much more than politicians.

START: strengthen the public-GP relationship that is already well trusted. Strengthen the GP position that will in turn support the organisational-trust-chain that you need to sustain public support. 

4. STOP: stop delaying the legislative changes needed on Data Guardian and penalties for data misuse 

START: implement them and clearly explain them in Parliament and press

5. STOP: don’t rush through short term short-cuts  to get ‘some’ data but ignore the listening from the public that asked for choice.

START: design a thorough granular consent model fit for the 21stC and beyond and explain to the public what it will offer, the buy in for bona fide research will be much greater (be prepared to define ‘research’!

6. STOP: saying that future practices have been changed and that security and uses are now more trustworthy than in the past. Don’t rush to extract data until you can prove you are trustworthy.

START: Demonstrate in future who receives data to individuals through a data use report. Who future users are in practice can only be shown through a demonstrable tool to see your word can be relied upon in practice. This will I am convinced, lower the opt out rate.

 Point 6 is apparently work-in-progress. [p58]
NIB2015

7. STOP: rolling out the current communications approach without any public position on what changes will mean they are notified before a new purpose and user in future of our data

START: design a thorough change communications model fit for the 21stC and beyond and tell the public in THIS round of communications what changes of user or purposes will trigger a notification to enable them to opt out in future BEFORE a future change i.e. in a fictional future – if the government decided that the population wide database should be further commercialised ‘for the purposes of health’, linked to the NHSBT blood donor registry and sold to genomic research companies, how would I as a donor be told, BEFORE the event?

There are still unknowns in content and future scope that mean communications are difficult. If you don’t know what you’re saying how to say it is hard. But what is certain is that there are future changes in the programme planned, and how to communicate these these with the public and professionals must be designed for now, so that what we are signed up for today, stays what we signed up for.

Delivering messages about data sharing and the broader NHS, the DH/NHS England should consider carefully their relationships and behaviours, all communication becomes relevant to trust.

Solutions cannot only be thought of in terms tools, not of what can be imposed on people, but of what can be achieved with people.

That’s people from the public and professionals and the programme working with the same understanding of the plans together, in a trusted long term relationship.

For more detail including my case study comments on the Leeds area CCGs comms leaflet, continue reading below.

Thanks for sharing in discussions of ideas in my five part post on Building public trust – a New Approach. Comments welcome.

Continue reading Building Public Trust [5]: Future solutions for health data sharing in care.data →

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

Building Public Trust in care.data sharing [1]: Seven step summary to a new approach

Here’s my opinion after taking part in the NIB #health2020 Bristol event 24/7/2015 and presentation of plans at the June King’s Fund hosted event. Data sharing includes plans for extraction and uses of primary care data by third parties, charging ahead under the care.data banner.

Wearing my hat from a previous role in change management and communications, I share my thoughts in the hope the current approach can adapt and benefit from outside perspectives.

The aim of “Rebuilding and sustaining Public trust” [1] needs refocused to treat the cause, not only the symptoms of the damage done in 2014.  Here’s why:

A Seven Step Top Line Summary

1. Abstract ‘public trust’ is not vital to the future of data sharing. Being demonstrably worthy of public trust is.

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

3. A timed target to ‘get the public’s data’, is not what is needed. Having a stable, long term future-proofed and governable model is.

4. Tech solutions do not create trust. Enable the positive human response to what the org wants from people, enabling their confident ‘yes to data-sharing.’ [It might be supported by technology-based tools.]

5. Communications that tell the public ‘we know best, trust us’ fail.  While professional bodies [BMA [2], GPES advisory group, APPG report calling for a public benefits plan, ICO, and expert advice such as Caldicott] are ignored or remain to be acted upon, it remains challenging for the public to see how the programme’s needs, motives and methods are trustworthy. “The [Caldicott 2] Review Panel found that commissioners do not need dispensation from confidentiality, human rights & data protection law.” [3] Something’s gotta give. What will it be?

6. care.data consistency. Relationships must be reliable and have integrity.
“Trust us – see the benefits” [But we won’t share the business cost/benefit plan.]
“Trust us – we’re transparent” [But there is nothing published in 2015 at all from the programme board minutes] [4]
“Trust us – we’ll only use your data wisely, with the patient in control” [Ignore that we didn’t before [5] and that we still share your data for secondary uses even if you opted out [6] and no, we can’t tell you when it will be fixed…]

7. Voices do not exist in a vacuum. Being trustworthy on care.data  does not stand alone but is part of the NHS ‘big picture’.
Department of Health to GPs: “Trust us about data sharing.’  [And ignore that we haven’t respected many of  your judgement or opinions.]
NHS England to GPs: “Trust us about data sharing.’  [And ignore our lack of general GP support: MPIG withdrawal, misrepresentation in CQC reports] NHS England and Department of Health to professionals and public: “The NHS is safe in our hands.’ Everyone: “We see no evidence that plans for cost savings, 7 day working, closures and the 5YFV integration will bring the promised benefits. Let us ‘see the holes’, so that we can trust you based on evidence.”

See the differences?

Target the cause not Symptom:

The focus in the first half, the language used by NHS England/NIB/ DH, sets out their expectations of the public. “You must trust us and how you give us your data.”

The focus should instead to be on the second half, a shift to the organisation, the NHS England/NIB/ DH, and set out expectations from the public point-of-view. ” Enable the public to trust the organisation. Enable individual citizens to trust what is said by individual leaders. This will enable citizens to be consensual sharers in the activity your organisation imposes – the demand for care.data through a statutory gateway, obliging GPs to disclose patient data.

The fact that trust is broken, and specifically to data-sharing that there is the deficit [A] between how much the public trusts the organisation and how the organisation handles data, is not the fault of the public, or “1.4 M NHS staff”, or the media, or patient groups’ pressure. It’s based on proven experience.

It’s based on how organisations have handled data in the past. [5] Specifically on the decisions made by DH, and the Information Centre and leaders in between. Those who chose to sell patient data without asking the public.

The fact that trust is broken is based on how leadership individuals in those organisations have responded to that. Often taking no responsibility for loss.

No matter how often we hear “commissioners will get a better joined up picture of care needs and benefit you”, it does not compensate for past failings.

Only demonstrable actions to show why it will not happen in future can start that healing process.

Target the timing to the solution, not a shipping deadline

“Building trust to enable data sharing” aims at quick fixes, when what is needed is a healing process and ongoing relationship maintenance.

Timing has to be tailored to what needs done, not an ‘artificial deadline’. Despite that being said it doesn’t seem to match reality.

Addressing the Symptoms and not the Cause, will not find a Cure

What needs done?

Lack of public trust, the data trust deficit [A] are symptoms in the public to be understood. But it is the causes in the organisations that must be treated.

So far many NHS England staff I have met in relation to care.data, appear to have a “them and us” mentality. It’s almost tangibly wrapped up in the language used at these meetings or in defensive derision of public concerns: “Tin foil hat wearers”, “Luddites” [7] and my personal favourite, ‘Consent fetishists.’ [8] It’s counter productive and seems borne from either a lack of understanding, or frustration.

The NIB/DH/NHS England/ P&I Directorate must accept they cannot force any consensual change in an emotion-based belief based on past experiences, held by the public.

Those people each have different starting points of knowledge and beliefs.  As one attendee said, “There is no single patient replicated 60 million times.”

The NIB/DH/NHS England/ P&I Directorate can only change what they themselves can control. They have to model and be seen to model change that is trustworthy.

How can an organisation demonstrate it is trustworthy?

This means shifting the focus of the responsibility for change from public and professionals, to leadership organisation.

There is a start in this work stream, but there is little new that is concrete.

The National Data Guardian (NDG) role has been going to be put on a legal footing “at the earliest opportunity” since November 2014. [9] Nine months.

Updated information governance guidance is on the way.

Then there’s two really strong new items that would underpin public trust, to be planned in a ‘roadmap’: the first a system that can record and share consent decisions and the second, to provide information on the use to which an individual’s data has been put.

How and when those two keystones to public trust will be actually offered appear unknown. They will  encourage public trust by enabling choice and control of our data. So I would ask, if we’re not there yet on the roadmap, how can consent options be explained to the public in care.data communications, if there is as yet no mechanism to record and effect them? More on that later.

Secondly, when will a usage report be available? That will be the proof to demonstrate that what was offered, was honoured. It is one of the few tools the organisation(s) can offer to demonstrate they are trustworthy: you said, we did. So again, why jeopardise public trust by rolling out data extractions into the existing, less trustworthy environment?

How well this is done will determine whether it can realise its hoped for benefits. How the driving leadership influences that outcome, will be about the organisational approach to opt out, communicating care.data content decisions, the way and the channels in which they are communicated, accepting what has not worked to date and planning long-term approaches to communicating change before you start the pathfinders. [Detailed steps on this follows.]

Considering the programme’s importance we have been told, it’s vital to get right. [10]

i believe changing the approach from explaining benefits and focus on public trust, to demonstrating why the public should trust demonstrable changes made, will make all the difference.

So before rolling out next data sharing steps think hard what the possible benefits and risks will be, versus waiting for a better environment to do it in.

Conclusion: Trust is not about the public. Public trust is about the organisation being trustworthy. Over to you, orgs.

####

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

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

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

Part three: Know where you’re starting from. What behaviours influence trust. Fixing what has already been communicated is vital before new communications get rolled out. Vital to content of your communications and vital for public trust and credibility.

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

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

####

Background References:

I’m passionate about people using technology to make their jobs and lives better, simpler, and about living well. So much so, that this became over 5000 words. To solve that, I’ve assumed a baseline knowledge and I will follow up with separate posts on why a new approach is needed to understanding “Public Trust”, to “Communicating the benefits” and “Being trustworthy and other future solutions”.

If this is all new, welcome, and I suggest you look over some of the past 18 months posts that include  public voice captured from eight care.data  events in 2014. care.data is about data sharing for secondary purposes not direct care.

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

[2] BMA LMC Vote 2014 http://bma.org.uk/news-views-analysis/news/2014/june/patients-medical-data-sacrosanct-declares–bma

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

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

[5] HSCIC Data release register

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

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

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

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

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

Polls of public feeling:

[A] Royal Statistical Society Data Trust Deficit http://www.statslife.org.uk/news/1672-new-rss-research-finds-data-trust-deficit-with-lessons-for-policymakers

(B] Dialogue on data – work carried out through the ADRN

 

 

#caredata, care.data, change, trust

care.data : the economic value of data versus the public interest?

 This is a repost of my opinion piece published in StatsLife in June 2015.

The majority of the public supports the concept of using data for public benefit.[1] But the measurable damage done in 2014 to the public’s trust in data sharing [2] and reasons for it, are an ongoing threat to its achievement.

Rebuilding trust and the public legitimacy of government data gathering could be a task for Sisyphus, given the media atmosphere clouded by the smoke and mirrors of state surveillance. As Mark Taylor, chair of the NHS’s Confidentiality Advisory Group wrote when he considered the tribulations of care.data [3] ‘…we need a much better developed understanding of ‘the public interest’ than is currently offered by law.’

So what can we do to improve this as pilot sites move forward and for other research? Can we consistently quantify the value of the public good and account for intangible concerns and risks alongside demonstrable benefits? Do we have a common understanding of how the public feels what is in its own best interests?

And how are shifting public and professional expectations to be reflected in the continued approach to accessing citizens’ data, with the social legitimacy upon which research depends?

Listening and lessons learned

Presented as an interval to engage the public and professionals, the 18 month long pause in care.data involved a number of ‘listening’ events. I attended several of these to hear what people were saying about the use of personal health data. The three biggest areas of concern raised frequently [4] were:

  • Commercial companies’ use and re-use of data
  • Lack of transparency and control over who was accessing data for what secondary purposes, and
  • Potential resulting harms: from data inaccuracy, loss of trust and confidentiality, and fear of discrimination.

It’s not the use of data per se that the majority of the public raises objection to. Indeed many people would object if health data were not used for research in the public interest. Objections were more about the approach to this in the past and in the future.

There is a common understanding of what bona fide research is, how it serves the public interest, and polls confirm a widespread acceptance of ‘reasonable’ research use of data. The HSCIC audit under Sir Nick Partridge [5] acknowledged that some past users or raw data sharing had not always met public expectations of what was ‘reasonable’. The new secure facility should provide a safe setting for managing this better, but open questions remain on governance and transparency.

As one question from a listening event succinctly put it [6]:

‘Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.’

Using the information gleaned from data was often seen as exploitation when used in segmenting the insurance markets, consumer market research or individual targeting. There is also concern, even outright hostility, to raw health data being directly sold, re-used or exchanged as a commodity – regardless whether this is packaged as ‘for profit’ or ‘covering administrative costs’.

Add to that, the inability to consent to, control or find out who uses individual level data and for what purpose, or to delete mistakes, and there is a widespread sense of disempowerment and loss of trust.

Quantifying the public perception of care.data’s value

While the pause was to explain the benefits of the care.data extraction, it actually seemed clear at meetings that people already understood the potential benefits. There is clear public benefit to be gained for example, from using data as a knowledge base, often by linking with other data to broaden scientific and social insights, generating public good.

What people were asking, was what new knowledge would be gained that isn’t gathered from non-identifiable data already? Perhaps more tangible, yet less discussed at care.data events, is the economic benefits for commissioning use by using data as business intelligence to inform decisions in financial planning and cost cutting.

There might be measurable economic public good from data, from outside interests who will make a profit by using data to create analytic tools. Some may even sell information back into the NHS as business insights.

Care.data is also to be an ‘accelerator’ for other projects [7]. But it is hard to find publicly available evidence to a) support the economic arguments for using primary care data in any future projects, and b) be able to compare them with the broader current and future needs of the NHS.

A useful analysis could find that potential personal benefits and the public good overlap, if the care.data business case were to be made available by NHS England in the public domain. In a time when the NHS budget is rarely out of the media it seems a no-brainer that this should be made open.

Feedback consistently shows that making money from data raises more concern over its uses. Who all future users might be remains open as the Care Act 2014 clause is broadly defined. Jamie Reed MP said in the debate [8]: ‘the new clause provides for entirely elastic definitions that, in practice, will have a limitless application.’

Unexpected uses and users of public data has created many of its historical problems. But has the potential future cost of ‘limitless’ applications been considered in the long term public interest? And what of the confidentiality costs [9]? The NHS’s own Privacy Impact Assessment on care.data says [10]:

‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.‘

Who has quantified the cost of that loss of confidence and have public and professional opinions been accounted for in any cost/benefit calculations? All these tangible and intangible factors should be measured in calculating its value in the public interest and ask, ‘what does the public want?’ It is after all, our data and our NHS.

Understanding shifting public expectations

‘The importance of building and maintaining trust and confidence among all stakeholder groups concerned – including researchers, institutions, ethical review boards and research participants – as a basis for effective data sharing cannot be overstated.’ – David Carr, policy adviser at the Wellcome Trust [11]

To rebuild trust in data sharing, individuals need the imbalance of power corrected, so they can control ‘their data’. The public was mostly unaware health records were being used for secondary purposes by third parties, before care.data. In February 2014, the secretary of state stepped in to confirm an opt-out will be offered, as promised by the prime minister in his 2010 ‘every patient a willing research patient’ speech.

So leaving aside the arguments for and against opt-in versus opt-out (and that for now it is not technically possible to apply the 700,000 opt-outs already made) the trouble is, it’s all or nothing. By not offering any differentiation between purposes, the public may feel forced to opt-out of secondary data sharing, denying all access to all their data even if they want to permit some uses and not others.

Defining and differentiating secondary uses and types of ‘research purposes’ could be key to rebuilding trust. The HSCIC can disseminate information ‘for the purposes of the provision of health care or adult social care, or the promotion of health’. This does not exclude commercial use. Cutting away commercial purposes which appear exploitative from purposes in the public interest could benefit the government, commerce and science if, as a result, more people would be willing to share their data.

This choice is what the public has asked for at care.data events, other research events [12] and in polls, but to date has yet to see any move towards. I feel strongly that the government cannot continue to ignore public opinion and assume its subjects are creators of data, willing to be exploited, without expecting further backlash. Should a citizen’s privacy become a commodity to put a price tag on if it is a basic human right?

One way to protect that right is to require an active opt-in to sharing. With ongoing renegotiation of public rights and data privacy at EU level, consent is no longer just a question best left ignored in the pandora’s box of ethics, as it has been for the last 25 years in hospital data secondary use. [13]

The public has a growing awareness, differing expectations, and different degrees of trust around data use by different users. Policy makers ignoring these expectations, risk continuing to build on a shaky foundation and jeopardise the future data sharing infrastructure. Profiting at the expense of public feeling and ethical good practice is an unsustainable status quo.

Investing in the public interest for future growth

The care.data pause has revealed differences between the thinking of government, the drivers of policy, the research community, ethics panels and the citizens of the country. This is not only about what value we place on our own data, but how we value it as a public good.

Projects that ignore the public voice, that ‘listen’ but do not act, risk their own success and by implication that of others. And with it they risk the public good they should create. A state which allows profit for private companies to harm the perception of good research practice sacrifices the long term public interest for short term gain. I go back to the words of Mark Taylor [3]:

‘The commitment must be an ongoing one to continue to consult with people, to continue to work to optimally protect both privacy and the public interest in the uses of health data. We need to use data but we need to use it in ways that people have reason to accept. Use ‘in the public interest’ must respect individual privacy. 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.’ 

The economic value of data, personal rights and the public interest are not opposed to one another, but have synergies and a co-dependency. The public voice from care.data listening could positively help shape a developing consensual model of data sharing if the broader lessons learned are built upon in an ongoing public dialogue. As Mark Taylor also said, ‘we need to do this better.’

*******

[1] according to various polls and opinions gathered from my own discussions and attendance at care.data events in 2014 [ refs: 2, 4. 6. 12]

[2] The data trust deficit, work by the Royal Statistical Society in 2014

[3] M Taylor, “Information Governance as a Force for Good? Lessons to be Learnt from Care.data”, (2014) 11:1 SCRIPTed 1 http://script-ed.org/?p=1377

[4] Communications and Change – blogpost https://jenpersson.com/care-data-communications-change/

[5] HSCIC audit under Sir Nick Partridge https://www.gov.uk/government/publications/review-of-data-releases-made-by-the-nhs-information-centre

[6] Listening events, NHS Open Day blogpost https://jenpersson.com/care-data-communications-core-concepts-part-two/

[7] Accelerator for projects mentioned include the 100K Genomics programme https://www.youtube.com/watch?v=s8HCbXsC4z8

[8] Hansard http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140311/debtext/140311-0002.htm

[9] Confidentiality Costs; StatsLife http://www.statslife.org.uk/opinion/1723-confidentiality-costs

[10] care.data privacy impact assessment Jan 2014 [newer version has not been publicly released] http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf

[11] Wellcome Trust http://blog.wellcome.ac.uk/2015/04/08/sharing-research-data-to-improve-public-health/

[12]  Dialogue on Data – Exploring the public’s views on using linked administrative data for research purposes: https://www.ipsos-mori.com/researchpublications/publications/1652/Dialogue-on-Data.aspx

[13] HSCIC Lessons Learned http://www.hscic.gov.uk/article/4780/HSCIC-learns-lessons-of-the-past-with-immediate-programme-for-change

The views expressed in this article originally published in the Opinion section of StatsLife are solely mine, the original author. These views and opinions do not necessarily represent those of The Royal Statistical Society.

#caredata, care.data, change, empowerment, engagement, health, NHS England, privacy, trust

Driving digital health, revolution by design

This follows on from: 1. Digital revolution by design: building for change and people.

***

Talking about the future of digital health in the NHS, Andy Williams went on to ask, what makes the Internet work?

In my head I answered him, freedom.

Freedom from geographical boundaries. Freedom of speech to share ideas and knowledge in real time with people around the world.  The freedom to fair and equal use. Cooperation, creativity, generosity…

Where these freedoms do not exist or are regulated the Internet may not work well for its citizens and its potential is restricted, as well as its risks.

But the answer he gave, was standards.

And of course he was right.  Agreed standards are needed when sharing a global system so that users, their content and how it works behind the screen cooperate and function as intended.

I came away wondering what the digital future embodied in the NHS NIB plans will look like, who has their say in its content and design and who will control  it?

What freedoms and what standards will be agreed upon for the NHS ‘digital future’ to function and to what purpose?

Citizens help shape the digital future as we help define the framework of how our data are to be collected and used, through what public feeling suggests is acceptable and people actually use.

What are some of the expectations the public have and what potential barriers exist to block achieving its benefits?

It’s all too easy when discussing the digital future of the NHS to see it as a destination. Perhaps we could shift the conversation focus to people, and consider what tools digital will offer the public on their life journey, and how those tools will be driven and guided.

Expectations

One key public expectation will be of trust, if something digital is offered under the NHS brand, it must be of the rigorous standard we expect.

Is every app a safe, useful tool or fun experiment and how will users [especially for mental health apps where the outcomes may be less tangibly measured than say, blood glucose] know the difference?

A second expectation must be around universal equality of access.

A third expectation must be that people know once the app is downloaded or enrolment done, what they have signed up to.

Will the NHS England / NIB digital plans underway create or enable these barriers and expectations?

What barriers exist to the NHS digital vision and why?

Is safety regulation a barrier to innovation?

The ability to broadly share innovation at speed is one of the greatest strengths of digital development, but can also risk spreading harm quickly. Risk management needs to be upfront.

We  assume that digital designs will put at their heart the core principles in the spirit of the NHS.  But if apps are not available on prescription and are essentially a commercial product with no proven benefit, does that exploit the NHS brand trust?

Regulation of quality and safety must be paramount, or they risk doing harm as any other treatment could to the person and regulation must further consider reputational risk to the NHS and the app providers.

Regulation shouldn’t be seen as a barrier, but as an enabler to protect and benefit both user and producer, and indirectly the NHS and state.

Once safety regulation is achieved, I hope that spreading benefits will not be undermined by creating artificial boundaries that restrict access to the tools by affordability, in a postcode lottery,  or in language.

But are barriers being built by design in the NHS digital future?

Cost: commercial digital exploitation or digital exclusion?

There appear to be barriers being built by design into the current NHS apps digital framework. The first being cost.

For the poorest even in the UK today in maternity care, exclusion is already measurable in those who can and cannot afford the data allowance it costs on a smart phone for e-red book access, attendees were told by its founder at #kfdigital15.

Is digital participation and its resultant knowledge or benefit to become a privilege reserved for those who can afford it? No longer free at the point of service?

I find it disappointing that for all the talk of digital equality, apps are for sale on the NHS England website and many state they may not be available in your area – a two-tier NHS by design. If it’s an NHS app, surely it should be available on prescription and/or be free at the point of use and for all like any other treatment? Or is yet another example of  NHS postcode lottery care?

There are tonnes of health apps on the market which may not have much proven health benefit, but they may sell well anyway.

I hope that decision makers shaping these frameworks and social contracts in health today are also looking beyond the worried well, who may be the wealthiest and can afford apps leaving the needs of those who can’t afford to pay for them behind.

At home, it is some of the least wealthy who need the most intervention and from whom there may be little profit to be made There is little in 2020 plans I can see that focuses on the most vulnerable, those in prison and IRCs, and those with disabilities.

Regulation in addition to striving for quality and safety by design, can ensure there is no commercial exploitation of purchasers.  However it is a  question of principle that will decide for or against exclusion for users based on affordability.

Geography: crossing language, culture and country barriers

And what about our place in the wider community, the world wide web, as Andy Williams talked about: what makes the Internet work?

I’d like to think that governance and any “kite marking” of digital tools such as apps, will consider this and look beyond our bubble.

What we create and post online will be on the world wide web.  That has great potential benefits and has risks.

I feel that in the navel gazing focus on our Treasury deficit, the ‘European question’ and refusing refugees, the UK government’s own insularity is a barrier to our wider economic and social growth.

At the King’s Fund event and at the NIB meeting the UK NHS leadership did not discuss one of the greatest strengths of online.

Online can cross geographical boundaries.

How are NHS England approved apps going to account for geography and language and cross country regulation?

What geographical and cultural barriers to access are being built by design just through lack of thought into the new digital framework?

Barriers that will restrict access and benefits both in certain communities within the UK, and to the UK.

One of the three questions asked at the end of the NIB session, was how the UK Sikh community can be better digitally catered for.

In other parts of the world both traditional and digital access to knowledge are denied to those who cannot afford it.

school

This photo reportedly from Indonesia, is great [via Banksy on Twitter, and apologies I cannot credit the photographer] two boys on the way to school, pass their peers on their way to work.

I wonder if one of these boys has the capability to find the cure for cancer?
What if he is one of the five, not one of the two?

Will we enable the digital infrastructure we build today to help global citizens access knowledge and benefits, or restrict access?

Will we enable broad digital inclusion by design?

And what of  data sharing restrictions: Barrier or Enabler?

Organisations that talk only of legal, ethical or consent ‘barriers’ to datasharing don’t understand human behaviour well enough.

One of the greatest risks to achieving the potential benefits from data is the damage done to it by organisations that are paternalistic and controlling. They exploit a relationship rather than nurturing it.

The data trust deficit from the Royal Statistical Society has lessons for policymakers. Including finding that: “Health records being sold to private healthcare companies to make money for government prompted the greatest opposition (84%).”

Data are not an abstract to be exploited, but personal information. Unless otherwise informed, people expect that information offered for one purpose, will not be used for another. Commercial misuse is the greatest threat to public trust.

Organisations that believe behavioural barriers to data sharing are an obstacle,  have forgotten that trust is not something to be overcome, but to be won and continuously reviewed and protected.

The known barrier without a solution is the lack of engagement that is fostered where there is a lack of respect for the citizen behind the data. A consensual data charter could help to enable a way forward.

Where is the wisdom we have lost in knowledge?

Once an app is [prescribed[, used, data exchanged with the NHS health provider and/or app designer, how will users know that what they agreed to in an in-store app, does not change over time?

How will ethical guidance be built into the purposes of any digital offerings we see approved and promoted in the NHS digital future?

When the recent social media experiment by Facebook only mentioned the use of data for research after the experiment, it caused outcry.

It crossed the line between what people felt acceptable and intrusive, analysing the change in behaviour that Facebook’s intervention caused.

That this manipulation is not only possible but could go unseen, are both a risk and cause for concern in a digital world.

Large digital platforms, even small apps have the power to drive not only consumer, but potentially social and political decision making.

“Where is the knowledge we have lost in information?” asks the words of T S Elliott in Choruses, from the Rock. “However you disguise it, this thing does not change: The perpetual struggle of Good and Evil.”

Knowledge can be applied to make a change to current behaviour, and offer or restrict choices through algorithmic selection. It can be used for good or for evil.

‘Don’t be evil’ Google’s adoptive mantra is not just some silly slogan.

Knowledge is power. How that power is shared or withheld from citizens matters not only today’s projects, but for the whole future digital is helping create. Online and offline. At home and abroad.

What freedoms and what standards will be agreed upon for it to function and to what purpose? What barriers can we avoid?

When designing for the future I’d like to see discussion consider not only the patient need, and potential benefits, but also the potential risk for exploitation and behavioural change the digital solution may offer. Plus, ethical solutions to be found for equality of access.

Regulation and principles can be designed to enable success and benefits, not viewed as barriers to be overcome

There must be an ethical compass built into the steering of the digital roadmap that the NHS is so set on, towards its digital future.

An ethical compass guiding app consumer regulation,  to enable fairness of access and to know when apps are downloaded or digital programmes begun, that users know to what they are signed up.

Fundamental to this the NIB speakers all recognised at #kfdigital15 is the ethical and trustworthy extraction, storage and use of data.

There is opportunity to consider when designing the NHS digital future [as the NIB develops its roadmaps for NHS England]:

i making principled decisions on barriers
ii. pro-actively designing ethics and change into ongoing projects, and,
iii. ensuring engagement is genuine collaboration and co-production.

The barriers do not need got around, but solutions built by design.

***

Part 1. Digital revolution by design: building for change and people
Part 3. Digital revolution by design: building infrastructures

NIB roadmaps: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384650/NIB_Report.pdf

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

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

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

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

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

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

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

That is something we need in this digital revolution.

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

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

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

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

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

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

Technology progress that has left legislation behind.

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

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

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

What happens when these feelings both reach tipping point?

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

And we all know how that ended.

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

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

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

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

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

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

It’s about the people, stoopid

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Digital revolution by design: building for change and people

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

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

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

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

That includes in medicine.

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

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

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

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

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

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

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

****

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

****

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

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

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

#caredata, care.data, change, change management, confidentiality, empowerment, engagement, NHSEngland, scope, scope creep, SCR, transparency

care.data – “anticipating things to come” means confidence by design

“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.”

Part one here>> Minority voices

This is Part two >> the need for confidentiality and anticipating the future.”

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

Matisse – The cut outs

Matisse when he could no longer paint, took to cutting shapes from coloured paper and pinning them to the walls of his home. To start with, he found the process deeply unsatisfying. He felt it wasn’t right. Initially, he was often unsure what he would make from a sheet. He pinned cutouts to his walls. But tacking things on as an afterthought, rearranging them superficially was never as successful as getting it right from the start. As he became more proficient, he would cut a form out in one piece, from start to finish. He could visualise the finished piece before he started. His later work is very impressive, much more so in real life than on  screen or poster. His cut outs took on life and movement, fronds would hang in the air, multiple pieces which matched up were grouped into large scale collections of pieces on his walls. They became no longer just 2D shapes but 3D and complete pictures. They would tell a joined-up story, just as our flat 2D pieces of individual data will tell others the story of our colourful 3D lives once they are matched and grouped together in longitudinal patient tracking from cradle to grave.

Data Confidentiality is not a luxury

From the care.data advisory meeting on September 6th, I picked out the minority voices I think we need to address better.

In addition to the minority groups, there are also cases in which privacy, for both children and adults, is more important to an individual than many of us consider in the usual discussion. For those at risk in domestic violence the ability to keep private information confidential is vital. In the cases when this fails the consequences can be terrible. My local news  told this week of just such a woman and child whose privacy were compromised.

“It is understood that the girl’s mother had moved away to escape domestic violence and that her ex-partner had discovered her new address.” (Guardian, Sept 12th)

This story has saddened me greatly.  This could have been one of my children or their classmates.

These are known issues when considering data protection, and for example are addressed in the RCGP Online Roadmap (see Box 9, p20).

“Mitigation against coercion may not have a clear solution. Domestic violence and cyberstalking by the abuser are particularly prevalent issues.”

Systems and processes can design in good privacy, or poor privacy, but the human role is a key part of the process, as human error can be the weakest link in the security chain.

Yet as regards care.data, I’ve yet to hear much mention of preventative steps in place, except an opt out. We don’t know how many people at local commissioning levels will access how much of our data and how often. This may go to show why I still have so many questions how the opt out will work in practice, [5] and why it matters. It’s not a luxury, it can be vital to an individual. How much of a difference in safety, is achieved using identifiable vs pseudonymised data, compared with real individual risk or fear?


“The British Crime Survey (BCS) findings of stalking prevalence (highest estimate: 22% lifetime, 7% in the past year) give a 5.5% lifetime risk of interference with online medical records by a partner, and a 1.75% annual risk.”
This Online Access is for direct care use. There is a greater visible benefit for the individual to access their own data than in care.data, for secondary uses. But I’m starting to wonder, if in fact care.data is just one great big pot of data and the uses will be finalised later?Is this why scope is so hard to pin down?


The slides of who will use care.data included ‘the patient’ at this 6th September meeting. How, and why? I want to have the following  explained to me, because I think it’s fundamental to opt out. This is detailed, I warn you now, but I think really important:

How does the system use the Opt out?

If you imagine different users looking at the same item of data in any one record, let’s say prescribing history, then it’s the security role and how the opt out codes work which will determine who gets to see what.



I assume here, there are not multiple copies of “my medications” in my record.  The whole point of giant databases is real-time, synched data, so “my medications” will not be stored in one place in the Summary Care Record (SCR) and copied again in ‘care.data’ and a third time in my ‘Electronic Prescription Service (EPS). There will be one place in which “my medications” is recorded.


The label under which a user can see that data for me, is their security role, but to me largely irrelevant. Except for opt out.


I have questions: If I opt out of the SCR programme at my GP, but opt in at my pharmacy to the EPS, what have I opted in to? Who has permission to view “my medications”  in my core record now? Have I created in effect an SCR, without realising it?


[I realise these are detailed questions, but ones we need to ask if we are to understand and inform our decision, especially if we have responsibility for the care of others.]


If I want to permit the use of my record for direct care (SCR) but not secondary uses (care.data) how do the two opt outs work together,  and what about my other hospital information?


Do we understand what we have and have not given permission for and to whom?
If there’s only one record, but multiple layers of user access who get to see it,  how will those be built, and where is the overlap?
We should ask these questions on behalf of others, because these under represented groups and minorities cannot if they are not in the room.

Sometimes we all need privacy. What is it worth?

Individuals and minorities in our community may feel strongly about maintaining privacy, for reasons of discrimination, or of being ‘found out’ through a system which can trace them. For reasons of fear. Others can’t always see the reasons for it, but that doesn’t take away from the value it has for the person who wants it or their need for that human right to be respected. How much is it worth?

It seems the more we value keeping data private, the more the cash value it has for others. In 2013, the FT created a nifty calculator and in an interview with Dave Morgan, reckoned our individual data is worth less than $1. General details such as age, gender and location are in the many decimal place range of fractions of a cent. The more interesting your life events, the more you can add to your data’s total value. Take pregnancy as an example.  Or if you add genomic data it  goes up in market value again.

Whilst this data may on a spreadsheet be no more than a dollar amount, in real life it may have immeasurably greater value to us on which you cannot put a price tag. It may be part of our life we do not wish others to see into. We may have personal or medical data, or recorded experiences we simply do not want to share with anyone but our GP. We might want a layered option like this suggestion by medConfidential to allow some uses but not others. [6]

In this debate it is rare that we mention the PDS (Personal Demographic Service), which holds the name and core contact details of every person with and NHS number past and present, almost 80 million. This is what can compromise privacy, when the patient can be looked up by any A&E, everyone with Summary Care Record access on N3 with technical ability to do so. It is a weak link. The security system relies on human validations, effectively in audit ‘does this seem OK to have looked up?’  These things happen and can go unchecked for a long period without being traced.

Systems and processes on this scale need security designed, that scales up to match in size.

Can data be included but not cut out privacy?

Will the richness of GP record / care.data datasharing afford these individuals the level of privacy they want? If properly anonymised, it would go some way to permitting groups to feel they could stay opted in, and the data quality and completeness would be better. But the way it is now, they may feel the risks created by removing their privacy are too great. The care.data breadth and data quality will suffer as a consequence.

The requirement of care.data to share identifiable information we may not want to, and that it is an assumed right of others to do so, with an assumed exploitation for the benefit of UK plc, especially if an opt-out system proceeds, feels to many, an invasion of the individual’s privacy and right to confidentiality. It can have real personal consequences for the individual.

The right to be open, honest and trusting without fear of repercussion matters. It matters to a traveller or to someone fleeing domestic violence with fears of being traced. It matters to someone of transgender, and others who want to live without stigma. It matters to our young people.

The BMA recognised this with their vote for an opt-in system earlier this year. 

Quality & Confidence by Design

My favourite exhibition piece at Tate Britain is still Barbara Hepworth’s [3] Pelagos from 1946. It is artistically well reviewed but even if you know little of art, it is simply a beautiful thing to see. (You’re not allowed to touch, even though it really should be, and it makes you want to.) Carved from a single piece of wood, designed with movement, shape, colour and shadow. It contains a section of strings, a symbol of interconnectivity. (Barbara Hepworth: Pelagos[4]). Seen as a precious and valuable collection, the Hepworth room has its own guard and solid walls. As much as I would have liked to take pictures, photography was not permitted and natural light was too low. Visitors must respect that.

So too, I see the system design needs of good tech. Set in and produced in a changing landscape. Designed with the view in mind of how it will look completed, and fully designed before the build began, but with flexibility built in. Planned interconnectivity. Precise and professional. Accurate. And the ability to see the whole from the start. Once finished, it is kept securely, with physical as well as system-designed security features.

All these are attributes which care.data failed to present from its conception but appear to be in progress of development through the Health and Social Care Information Centre. Plans are in progress [6] following the Partridge Review, and were released on September 3rd, with forward looking dates. For example, a first wave of audits is scheduled for completion 1/09 for four organisations. HSCIC will ‘pursue a technical solution to allow data access, w/out need to release data out to external orgs. Due 30/11.’ These steps are playing catch up, with what should have been good governance practices and procedures in the past. It need not be this way for GP care.data if we know that design is right, from the start.

As I raised on Saturday, at the Sept 6th workshop advisory committee, and others will no doubt have done before me, this designing from the start matters.  Design for change of scope, and incorporating that into the communications process for the future is vital for the pathfinders. One thing will be certain for pathfinder practices, there will be future changes.

This wave of care.data is only one step along a broad and long data sharing path

To be the best of its kind, care.data must create confidence by design, build-in the solutions to all these questions which have been and continue to be asked. We should be able to see today the plans for what care.data is intended to be when finished, and design the best practices into the structure from the start. Scope is still a large part of that open question. Scope content, future plans, and how the future project will manage its change processes.

As with Matisse, we must ask the designers, planners and comms/intelligence and PR teams, please think ahead  ”anticipating things to come”. Then we can be confident that we’ve  something fit for the time we’re in, and all of our kids’ futures. Whether they’ll be travellers, trans, have disabilities, be in care or not.  For our majority and all our minorities. We need to build a system that serves all of the society we want to see. Not only the ‘easy-to-reach’ parts.

”Anticipating things to come” can mean anticipating problems early, so that costly mistakes can be avoided.

Anticipating the future

One must keep looking to design not for the ‘now’ but for tomorrow. Management of future change, scope and communication is vital to get right.

This is as much a change process as a technical implementation project. In fact, it is perhaps more about the transformation, as it is called at NHS England, than the technology.The NHS landscape is changing – who will deliver our healthcare. And the how is changing too, as telecare and ever more apps are rolled out. Nothing is constant, but change. How do we ensure everyone involved in top-down IT projects understands how the system supports, but does not drive change? Change is about process and people. The system is a tool to enable people. The system is not the goal.

We need to work today to be ahead of the next step for the future. We must ensure that processes and technology, the way we do things and the tools that enable what we do, are designing the very best practices into the whole, from the very beginning. From the ground up. Taking into account fair processing of Data Protection Law, EU law – the upcoming changes in EU data protection law –  and best practice. Don’t rush to bend a future law in current design or take a short cut in security for the sake of speed. Those best practices need not cut out the good ethics of consent and confidentiality. They can co-exist with world class research and data management. They just need included by design, not tacked on, and superficially rearranged afterwards.

So here’s my set of challenge scenarios for NHS England to answer.

1. The integration of health and social care marches on at a pace, and the systems and its users are to follow suit. How is NHS England ensuring the building of a system and processes  which are ‘anticipating by design’ these new models of data management for this type of care delivery, not staying stuck on the model of top-down mass surveillance database, planned for the last decade?

2. How will NHS England audit that a system check does not replace qualified staff decisions, with algorithms and flags for example, on a social care record? Risk averse, I fear that the system will encourage staff to be less likely to make a decision that goes against the system recommendation, ‘for child removal’, for example. Even though their judgement based on human experience, may suggest a different outcome. What are the system-built-in assumed outcomes – if you view the new social care promotional videos at least it’s pretty consistent. The most depressing stereo typed scenarios I’ve seen anywhere I think. How will this increase in data and sharing, work?

“What makes more data by volume, equal more intelligence by default?”

Just like GP call centre OOH today, sends too many people calling the 111 service to A&E now, I wonder if a highly systemised social care system risks sending too many children from A&E into social care? Children who should not be there but who meet the criteria set by insensitive algorithms or the converse risk that don’t, and get missed by over reliance on a system, missing what an experienced professional can spot.

3. How will the users of the system use their system data, and how has it been tested and likely outcomes measured against current data? i.e. will more or fewer children taken into care be seen as a measure of success? How will any system sharing be audited in governance and with what oversight in future?

Children’s social care is not a system that is doing well as it is today, by many accounts, you only need glance at the news most days, but integration will change how is it delivers service for the needs of our young people. It is an example we can apply in many other cases.

What plan is in place to manage these changes of process and system use? Where is public transparency?

care.data has to build in consent, security and transparency from the start, because it’s a long journey ahead, as data is to be added incrementally over time. As our NHS and social care organisational models are changing, how are we ensuring confidentiality and quality built-in-by-design to our new health and social care data sharing processes?

What is set up now, must be set up fit for the future.

Tacking things on afterwards, means lowering your chance of success.

Matisse knew, “”Anticipating things to come” can mean being positively in step with the future by the time it was needed. By anticipating problems early, costly mistakes can be avoided.”

*****

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

*****

[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

 

change, choice, politics, words

O my Luve’s like a red, red rose #indyref

“O my Luve’s like a red, red rose, that’s newly sprung in June:       O my Luve’s like the melodie, That’s sweetly play’d in tune.

As fair art thou, my bonnie lass, so deep in luve am I;                 And I will luve thee still, my dear, Till a’ the seas gang dry. […]”

Robert Burns, 1759-1796 [aged 37]

You can listen to the full poem sung by Suzy Bogguss

Friends and I hold a Burns Supper every year. What began as a one off, was repeated in a different home, with the same dozen guests a year later. So a tradition was born to celebrate the life and works of  Scotland’s most famous export.

“His national pride, fierce egalitarianism, and quick wit have become synonymous with the Scottish character itself.”      Robert Burns Birthplace Museum, Dumfries

Burns was famous for his belief in equality, and his poem “Is There for Honest Poverty“, commonly known as “A Man’s a Man for A’ That” of 1795 declared a stance in society, seen today as the rise of a liberalism, which is declared the world over today still. It is often used by the Freemasons as Burns was at the time of his death. It is the fierce pride in humanity of man that infuses Burns’ work and which has transcended time. His love poetry, and rural recordings, being ‘ahead of his time’ made him memorable. But I feel it was his awareness and discussion of identity and social-economic politics which still inspires and what makes his work contemporary.

The Burns Night Declaration

Perhaps it is some of that inspiration that Westminster hoped to capture by naming the latest political deal, granting Scotland more rights which Mr. Brown pledged this week, “The Burns Night Declaration.”

Scots have been promised “modern home rule within the United Kingdom” on a breakneck timetable on Monday if they rejected independence next week.”

From a personal perspective

I think there is a real chance of a yes vote. If Scotland were to vote for independence next week, I will celebrate the freedom, with a divided allegiance. The Scottish ‘heart’ in me will stir with a rallying cry and remember my ancestors who died on the fields of Bannockburn. My English ‘head’ will be disappointed, as I worry for the country downsizing to the size of Denmark will be a shock, and not fully thought out change, without a leader who can bring the whole country together.  I foresee a future in which the Celts are ruled still rather than greater independence for Scotland, with more dominant powers from Brussels instead of London as they seek strength and support as they once did with France in the Auld Alliance, rallying against English oppression. Should there be a yes vote, I will be dispirited, whilst clinging to optimism of change.

I have concerns about the economy, research investment, about its potential effect on the NHS and education provision, arguably better for the people than in England today. But in the end, my concerns don’t count, it is for the Scots in Scotland to decide.

As a Scot living in England, I have no vote. For my part, that is quite alright. For another Scot I know who fully intends moving back ‘up North’ and going ‘home’ in some years time, she is devastated at the thought of Scotland going solo, and that she has no say. Her sister still in Scotland, who can vote, was among those who received a letter in which she felt that it hinted that her employer, the Job Centre, may be put in jeopardy from a yes vote. [She may be right if DWP would need to be significantly ‘disentangled’ according to this report.] She’s considering voting yes anyway. Why?

Because at local level she thinks their jobs are in jeopardy of potential outsourcing regardless of the vote.

Because she’s lived through years of ‘better together’ and has seen only a decline in standards of living and no one has seemed to really seek to change that. She may not realise, Scotland is not alone in this, but with little elected power in Westminster, they may see independence as their only hope of change.

Because she feels democratically disempowered. No matter who she votes for today, it still results in not getting who they want in charge of government, and no way to oust them if a few areas of England vote that person in. The overall budget control for Scottish spending comes from Westminster. And lastly, in terms of governance, whilst necessary, adding experience and a system of ‘check and balance’ on legislation, the unelected House of Lords sits only in London and can appear accountable to no one, never mind the Scots.

How may politics be affected by the outcome?

I hear many people have had enough of imposed rule as they see it and disconnected leaders. One may think through devolution, more powers for Holyrood would have satisfied the desire for autonomy, but in fact people are fed up with the rhetoric  of the political rule from both Westminster and Edinburgh.

Many dislike the leadership choices on offer [latest FullFact poll stats here Sept 11th]. Women in particular appear to consider this important in their decision. Should the yes vote win, it will not necessarily be a win for Mr. Salmond, but a win for independence.

Key is, what will that independence really look like? It will be interesting to see. Would it be what Mr. Salmond expects? What scenarios have been thought out [1], debated, and what may have been missed?

The red rose of Labour has become faded in Scotland.  This has and  will continue to have an impact on future General Elections. I believe however, it must be encouraged to continue to grow, come back and actively thrive in Scotland regardless of this vote outcome. All mainstream parties would do well consider this, above party politics. There is a risk that the disenchantment with mainstream politics will give rise to more extreme factions. A sense of identity is a good thing, but at its extreme can be twisted into a damaging minority view of nationalism which is based on one group view over another, the real-world diversity of a nation excluded. Should mainstream parties leave a vacuum in the garden of Scottish politics, others will be quick to fill it, and it is often ugly weeds which take root fastest.

How has the People’s involvement in politics been affected?

Perhaps the best thing about this campaign has been an awakening. An awakening of people’s role in the democratic process, exemplified by the planned march on voting day in one area of Glasgow.  Where low turnout is typical organisers aim to stir people and carry them with them, to the polls, [which may or may not be legal electoral practice]. There has been an unprecedented number of electoral registrations.  But also an awakening of the big parties that your action and inaction matters. It has been forgotten in recent apathy. This awakening will not be restricted to Scotland, and politicians across Europe should learn from these experiences quickly, as calls for independence in other places are bound to come.

The Scots are inspirational to many.  Whilst fiction, the spirited speech of William Wallace in Braveheart calls to the basic instinct in us all, for freedom. We Scots have a strong sense of history as part of our identity. Entwined in that is the relationship between the wealthy landed Scots and the English nobility, and the complex succession of the throne and in-fighting of Scots lairds.  Who sided with whom, when and how trust was won and lost became glorified legend in Rob Roy and Braveheart, but it’s not all based on fiction, but historical fact.

What has been perhaps unfairly represented by some media headlines and survey statistics, is the image of how “the English” feel about “the Scots” and how the two countries would be after a yes vote. One survey showed well over 66% in favour of the Union, but the survey chose to represent a subjective statement on currency as its headline, for example. Poll upon poll state conflicting measures as ‘fact’. It is hard to separate fact from feeling in an emotive debate.

A Troubled Relationship

If you are not Scottish, you may or may not be familiar with the Scot’s spirit of the everyday, not celebrities nor stereotypes. If you have time, listen to this speech, a Burns night reply from the lassies. It gives the ladies a chance to ‘get their neb in’. (4.28) It’s meant to be tongue in cheek and irreverent, and not to take the subject too seriously, and this hits the spot. But mainly because it hints at something of what matters to Scots  in a speech about Burns.  In particular it’s worth considering this one snippet. With humour she tells us what matters above politics and above class, is relationships and communication. It is the relationship and communication that has broken down between Westminster and the people in Scotland which may be the Union’s  downfall. The Scottish People feeling neglected, had stopped talking to Westminster a long time ago, and Westminster didn’t notice.

Robert Burns understood People

Burns was a poet, a man of love and passion. A man of the heart. A man popular with women, a philanderer, yet perhaps one of the first feminists? Not a warrior, not a career politician, he was a man for the people. He recognised women’s rights above and amongst politics, and spoke up on our behalf:

“While Europe’s eye is fix’d on mighty things,
The fate of empires and the fall of kings;
While quacks of State must each produce his plan,
And even children lisp the Rights of Man;
Amid this mighty fuss just let me mention,
The Rights of Woman merit some attention.”

Visiting politicians would do well to appeal to the rights of women as Burns did. I believe that it is not a romantic notion of freedom, which will lead to a majority of the yes vote. It is another practical aspect of life exemplified in Burns’s poetry which matters to people today, and how we live. It can affect all, but disproportionally affects women, it is poverty:

Visiting Scotland I have seen an increase in poverty and hardship in recent years, and experienced the Scots’ spirit which has refused to give in and tries to resiliently ride above it. Scotland has found life economically tough in the last twenty years. Bit by bit, it has seen its shipbuilding, steel making and coal mining weaned away with few jobs to replace those hard industries. Farming and fishing on small scale has become harder to compete worldwide. Scots believe in society and living well together. They’ve seen the right to a pursuit of happiness undermined at every turn, in the ideology focused on the economic wealth development of the individual. Westminster may have woken up too late to the effects that has had over years of neglect and apparent blinkered ignorance “down South”.
Politicians could learn from Burns

These last minute efforts of visiting politicians may or may not be planned in the campaign.  But as Burns said,

“The best laid schemes o’ mice an’ men gang aft agley.”

The politicians may visit all they like, for a day or a week, better late than never. It will not make or break the majority of voters, voting with their head based on practical matters, but it may influence the ‘don’t noes’ the ‘vote for freedom’ who vote only with the heart at the last minute, and influence enough to swing the outcome. The majority of people will decide based not on last ditch efforts and promises, but on how they want to live, and what kind of society they want to see. Will speeches and promises made in a week, override experiences of many years? Or will they swing an influential minority?

The question is how convinced will voters be of the need for a complete break from the United Kingdom and true independence with its associated risk, versus the offering in the Burns Night Declaration? How much will heart rule the head or vice versa?

Whichever way the vote may go, how will mainstream political parties react and cultivate the long term relationship between Scotland and England? There will be a period between the vote and enactment. How will uncertainty be handled in that interim? How will the yes and no factions keep talking to one another, and grow as one nation, whether in a united, devolved or separate states?

O my Luve’s like a red, red rose

Scotland whichever path you choose to take, I will follow your decision closely.  Whatever happens next week, some will be broken hearted. I hope I won’t be among them. And I hope that for those who are disappointed with the outcome, we will all be kind, encouraging and not seek to blame, as we go about restoring our trust, our relationships and grow together in a positive, new direction. Society cannot afford a political vacuum which will provide space for the weeds of extremism to grow between us.

Wherever we are born, it is not unexpected to continue to have positive feelings for that country, as our birthplace. I may have left over thirty years ago, but my heart is still in the Highlands. I still love Scotland and hope she still loves us enough to stay together.

But I’ll understand if not.

“But to see her was to love her,
Love but her, and love forever.
Had we never lou’d sae kindly,
Had we never lou’d sae blindly,
Never met – or never parted –
We had ne’er been broken hearted”

Robert Burns, 1759-1796

***

[1] Governing after the Referendum – by the Institute for Government  http://www.instituteforgovernment.org.uk/sites/default/files/publications/Scenarios%20paper%20-%20final%20APJR.pdf 

 

art, change, politics, privacy, sport, surveillance, Tech

Non-human authors wanted. Drones, robots, and our relationship with technology.

“My relationship with the drone is like playing a video game: I feel out a composition and the drone will agree or challenge me. Eventually, though, the drone will develop a creative mind of its own.”  [KATSU, in interview with Mandi Keighran and N magazine, summer 2014].

KATSU, the New York City based artist/vandal/hacker depending on your point of view, raises the question in that interview for Norwegian Airlines’ magazine, of the relationship of “technology to graffiti,” or more broadly, of technology to art as a whole.

This, combined with another seemingly unrelated recent story, the David Salter macaque photo, made me wonder about drones, robots, and the role of the (non-)human author – our relationship with technology in art and beyond.

Ownership and Responsibility – Human or non-Human?

I wondered in both stories, how it may affect ownership and copyright. Rights, which led me to consider the boundaries of responsibility.

I should preface this by saying I know little about copyright and less about drones. But I’m thinking my lay thoughts, out loud.

In the first instance, if drones are used for creating something as in this story, is it as simple as ‘he who owns the drone owns or is responsible for the art it creates’? I wonder, because I don’t know, and while it may be clear today, I wonder if it is changing?

As regards the second story, when the monkey-selfie went around the world focus was sharper on copyright law, than it was in the majority of the photos the macaque had taken.  “Can a monkey own a picture?” asked many, including Metro at the time.

”Wikimedia, the non-profit organisation behind Wikipedia, has refused a photographer’s repeated requests to stop distributing his most famous shot for free – because a monkey pressed the shutter button and should own the copyright,” said the Telegraph.

But whilst most on social media and the press I read, focused on the outcome for this individual photographer, I wondered, what is the impact for the future of photography?

I’ve come to the conclusion, in this particular case I think it is more important we consider it less about the monkey having taken the photo, and more important that it was decided that a human, did not.

This decision was not (yet) decided by a UK court,  but was reached in Wikimedia’s own report.

Since then, the LA Times reported on August 21st, that:

“the public draft of the Compendium of U.S. Copyright Office Practices, Third Edition —was released this week[1], and, after final review, is to take effect in mid-December [2] — says the office will register only works that were created by human beings.”

This is the first major revision in over twenty years and is an internal manual, so it does not have the force of law.  But it’s still significant.

Copyright suitability is dependent on that the work “was created by a human being,” and only protects “…the fruits of intellectual labor” which are “founded in the creative powers of the mind.” Animal ownership is expressly excluded. (Section 306 – The Human Authorship Requirement). Pantomimes performed by a machine or robot are similarly, expressly non-copyrightable. (p.527) and continues:

“Similarly the Office will not register works produced by a machine or mere mechanical process that operates randomly, or automatically without any creative input or intervention from a human author.” (p 55)

The Telegraph article {August 6th} by Matthew Sparkes, said:

‘In its report Wikimedia said that it “does not agree” that the photographer owns the copyright, but also that US law means that “non-human authors” do not have the right to automatic copyright of any photographs that they take.

“To claim copyright, the photographer would have had to make substantial contributions to the final image, and even then, they’d only have copyright for those alterations, not the underlying image. This means that there was no one on whom to bestow copyright, so the image falls into the public domain,” it said.’

One would think common sense would mean that without the work by British photographer David Slater, there would have been no photograph. That his travel, equipment preparations and interaction with the animals was ‘substantial contribution’.

I wonder, could this become a significant argument in the future of copyright and access to material in the public domain?  Because the argument came down NOT to whether a monkey can own copyright, but whether there was any human in which copyright was vested.

copyright

 

Photography is changing. Increasingly technology is being used to take pictures. If photographic copyright depends on human ownership, I wonder if the way is opened for claims to creative images produced by drone or other forms of AI? I don’t know, and copyright law, is best left to experts but I’d like to ask the questions I have. I’ve read UK and US legislation, around ownership, and around use of computers, but it could appear to an ordinary lay eye, that technology is evolving faster than the laws to govern it. Users and uses growing in hobby and commercial markets perhaps even more so.

In UK legislation:

“In this Part “author”, in relation to a work, means the person who creates it.”

“In the case of a literary, dramatic, musical or artistic work which is computer-generated, the author shall be taken to be the person by whom the arrangements necessary for the creation of the work are undertaken.” [Copyright, Designs and Patents Act 1988, Section 9]

It is easy to see how the macaque can slip through in UK law here, as it is not computer generated. And in the US non-human is clearly defined and excluded. But my question is  how do you define computer-generated? At what point does copyright depend on autonomy or on arrangements by human-intervention?

Remember, in the US, the Office will not register works produced by a machine or mere mechanical process that operates randomly, or automatically without any creative input or intervention from a human author.” (p 55)

“Katsu pilots the drone remotely, but every movement is translated through the machine’s need to keep itself aloft and it adapts his directions.”

Where do you draw the line?

Why does it matter today at all?

It matters because copyright law is a gatekeeper and gateway. It makes it commercially viable for creators to produce and make work available to others. It defines responsibilities. One question I ask, is that if it’s no longer worth it, will we be worse off for not having the work they may have otherwise produced?

The market for work produced by or via drone,  is just becoming to hint at becoming mainstream.

The use of drones in photography, for example in hard to reach situations in useful functions like flood mapping will be of great service. Other uses in sports such as alpine skiing, canoeing, or extreme sports is only likely to increase by amateur, professional and commercial users. Stick a go-pro on the drone and it can get footage from places without the need for an accompanying person.

What questions might it raise for artists & creators today?

Specifically on art and copyright:  will this ruling affect what types of images are worth taking? Will it make some work non-commercially viable, or their value determined by the channels of distribution rather than creator? Will this Wikimedia ruling affect the balance of power between creator and  commercial channel providers, in terms of ownership and distribution? I believe it rather serves to highlight where the balance is already.

Have we lessons learned from the music and book industry that apply here? (Clue: they both start with vowels and control distribution.)

Will the decision now go to a UK court and become a clarified legal position?

David Slater reportedly faces an estimated £10,000 legal bill to take the matter to court, said the Telegraph. At very best, this situation  is disrespectful to him and leaves a bitter aftermath, in the question of the power between artist and distributor.

At worst, we could be on the cusp of being left behind in a brave new world of ownership and control of art and knowledge. A world in which actions may be taken through our technology, the product of which no human is deemed to have ownership.

So how does that affect responsibility?

If it has been legally defined, that there is no human copyright ownership for the product of the action by something non-human, where do you draw the line for human responsibility? Am I not responsible for the actions of anything non-human I own? If an animal I own, creates a road traffic accident, am I responsible for its actions? If so, then why not for artwork it creates? If there are differences, why are there differences, and where does the line of responsibility get defined and by whom?

Where are the boundaries of responsibility if we start to distinguish in law between ownership of the result of a task a human set up, but did not carry out? David Slater enabled everything for the photograph to be taken, but did not press the shutter.

I ask: “is the boundary of responsibility undermined by weakening the boundaries of ownership and definition of autonomy of action?”

I believe copyright, ownership, responsibility and non-human authorship is about more than this man vs macaque debate. Will we leave it at that and learn no more from this? If so, then the real monkey is definitely not the one in the picture.

What about considering wider impacts?

In broader context, I believe the public should be asking questions to stay ahead of the game in terms of all legal rulings, and consider carefully the idea of non-human creation and ownership. We should  ensure that both State and commercial uses of drone are not set in place, from which we need to play catch up later. We should be driving the thinking to help shape the society we want to see, and shape the expectations of commercial and State use of drone technology.

What of the drones we cannot see, never hear and yet seem to be supported by our Governments? State surveillance piggybacks commercial infrastructures and tools in other fields, such as communications and social media. We should stay ahead of how drones are increasingly used commercially (as in Amazon pilot news) and we should demand much greater transparency of the existing drone use in our name, in security, surveillance and weaponry. [ added 29 Aug 2014 > also see BT case in CW investigation].

Who controls government decisions and the ethics of drone or robot use? In all of these questions, it comes down to – who’s in a position of power? With power, comes responsibility.

The ethics in use in war zones and in other military action, seen and unseen, is also something we should be asking to understand. To date, much of the public dismisses drone use as something which happens somewhere else and nothing to do with us.

But these decisions do affect what is done in the name of our country and that does indirectly, reflect on us, as its citizens.  These decisions will shape the future commercial uses which will affect us as direct consumers, or as indirect recipients of their impacts on wider society.

There’s lots to think about, as drones develop into tools of art and applications in daily life. I know little of the legal aspects, what has been done already or is being considered today, or what will be in future. I just know, I have lots of questions as an everyday parent, considering what kind of society I hope my children, our future adult citizens, will inherit.  Where do I ask to find out?

My questions are not so much about the technology or law of it, at all. They come down to its ethics, fairness & how this will shape the future.  As a mother, that is the responsibility I bear for my children.

Will we see drones soon in ordinary life or in an everyday future?

In this Wired article, Karl VanHemert states part of Katsu’s aim with the drone is simply to raise questions about the transformative effect the machines might have on art. He plans for it to be Open Source soon. Some argue that tagging is not art, but vandalism. You can see it in action via Motherboard’s video on YouTube here. Suggesting property marking will become a blight on society, you can ask what purpose does it serve? Others suggest drones could be used precisely to paint over graffiti and be of practical uses.

In Scotland it is a well known joke,  that once the painters have finished repainting from one side of the Forth Road Bridge to the other, it’s time for them to start again. Perhaps, those days are over?

Will we see them soon in everyday occupations, and will it make a difference to the average citizen? In commercial service, the mundane estate agent [no offence to those who are, you may be 007 or M in your spare time I know] is reported to be one of the commercial market sectors looking at applications of the photographic potential. It could replace cameras on long poles.

“Unmanned drones can be used for a range of tasks including surveying repairs and capturing particularly good views from unusual angles. ” [Skip Walker, stroudnewsandjournal.co.uk]

These uses are regulated in the UK and must have permission from the CAA.

So far though, I wonder if anyone I’ve met flying a hobby drone with camera over our heads (veering wildly between tent pitches, and enthralling us all, watching it watching us) has requested permission as in point 2?

Regulation will no doubt become widely argued for and against in the public security and privacy debate, rightly or wrongly. With associated risks and benefits, they have the potential to be of public service, entertainment and have uses which we have not yet seen.  How far off is the jedi training remote game? How far off is the security training remote, which is not a game? How is it to be governed?

I have a niggling feeling that as long as State use of drones is less than fully transparent, the Government will not be in a rush to open the debate on the private and commercial uses.

Where does that leave my questions for my kids’ future?

Where is the future boundary in their use and who will set it?

The ethics of this ‘thinking’ technology in these everyday places must be considered today, because tomorrow you may walk into a retirement home and find a robot playing chess with your relative. How would you feel about the same robot, running their bath?

Have you met Bob – the G4S robot in Birmingham – yet?

“While ‘Bob’ carries out his duties, he will also be gathering information about his surroundings and learning about how the environment changes over time”

“A similar robot, called ‘Werner’, will be deployed in a care home environment in Austria.”

How about robots in the home, which can read and ‘learn’ from your emotions?

I think this seemingly silly monkey-selfie case, though clearly anything but for the livelihood of David Slater, should raise a whole raft of questions, that ordinary folk like me should be asking of our experts and politicians.  Perhaps I am wrong, and the non-human author as animal and non-human author as machine are clearly distinct and laid out already in legislation. But as the Compendium of U.S. Copyright Office Practices [open for comment see footnote 2] decision shows, at minimum the macaque-selfie shoot, is not yet done in its repercussions. It goes beyond authorship.

Who decides what is creative input and intervention vs automatic or autonomous action? Where do you draw the line at non-human? Does Bob – the G4S robot in Birmingham – count?

We may be far off yet, from AI that is legally considered ‘making its own decisions’, but when we get to the point where the owner of the equipment used has no influence, no intervention, of what, when or where an image is shot, will we be at the point where there is, no human author? Will we be at the point where there is no owner responsible for the action?

Especially, if in the words of Katsu,

“Eventually…the drone will develop a creative mind of its own.”

What may that mean for the responsibilities of drones & robots as security patrols, or as care workers? Is the boundary of responsibility undermined by weakening the boundaries of copyright, of ownership and autonomy of action?

If so, photographs being shot, without a legally responsible owner, is the least of my worries.

****

[1] Significant files ref: http://infojustice.org/archives/33164  Compendium of US Copyright Office practices – 3rd edition > full version: http://copyright.gov/comp3/docs/compendium-full.pdf

[2] Members of the public may provide feedback on the Compendium at any time before or after the Third Edition goes into effect. See www.copyright.gov/comp3/ for more information.

 

 

#caredata, care.data, change, HSCIC, travel, women, words

Thinking to some Purpose – a new era, a new look

Regular readers here or on twitter, may notice the new-look.

I’m moving away from The Amateur Book Blogger banner, and will be posting simply as me, as I go on.  The start of the summer holidays seemed as good a day as any, to saunter out into the sunshine on my own.  [I may even see if it’s worth updating my resultant twitter handle @TheABB]. The reason? This week, the View From Here Magazine announced it will be closing on November 1st, 2014. After seven  years on the writing team, it is not only the end of an era, but perhaps the start of a something new.

I started on the comms side, announcing writing events and industry news, and later moved into interviews. It’s been an amazing experience. Editor Mike French was a great remote-mentor. We’ve met only once, at the launch of his latest novel, Convergence, in The Dandelion Trilogy.  Mike both enabled and encouraged me to interview some great writers, editors, scouts and publishers, every quarter. I learned something new each time, from every contribution, and had great fun. All of which I enjoyed, but some stand out in the memory more than others, and every one was unique.

I travelled to The London Book Fair in 2010, the year the Icelandic volcanic ash prevented many traveling from abroad by plane.  The resulting bonus, many people’s meeting schedules became unexpectedly less full. I got squeezed in to film a serendipitous  interview with Jamie Byng at Canongate and  spoke with Helen Garnons-Williams, which led to producing a three part interview with her, the then newly head-hunted Editorial Director for Fiction at Bloomsbury UK.

Thank you to all whom I have interviewed since 2006, but also to readers and fellow unpublished writers who supported me, the team, and made the community at The View From Here what it is. With eclectic tastes, I learned much on writing, but also enjoyed the art of the creative collective.

The most recent interview I did for them, was here, with Isabel Allende. In her wide ranging career, it was hard to know what to ask and how to narrow it down, but one thing stays with me, in all she said, on the role of a writer:

“Writers have no obligation to comply with the official story or the official version, their only obligation is with their own consciousness.  Honesty above all.”

The other part of my writing recently has been more akin to her engagement in politics and civil society. I’ve been on twitter really only for the last nine months, throughout the difficult pregnancy of care.data, pronounced care [dot] data. If you missed it, that’s the government proposed scheme to suck up our GP medical records, merge them with data already held at the central Health and Information Centre from our hospital care, and then use the new, richer record for commissioning purposes and potentially more, as yet undefined.  Since our hospital and other health sourced-data is already sold to private companies and will continue to be so in future, but without having asked for informed consent, I’ve been a very skeptical critic and lay voice for positive changes for these wide secondary uses. [In case you’ve landed here for the first time,  I’ve a background in tech database implementations, communications and change, and I took it upon myself to fully understand and follow the subject, a year ago when I came across the topic online, by accident.]

It looks now, as though some improvements on past failings will  happen, but much remains undefined in detail, and as we all know, that’s where the devil likes to sup. I look forward to seeing some of the recently discussed changes and definitions in the Care Act, for example, becoming concrete.

So, that’s the reason for the insignificant changes on my part, and should I explain the image? I’ve chosen my favourite coffee mug for my header photo, with my favourite scarf. I use both often. The latter, reminds me a little of Bridget Riley’s op art. As a retro fan that appeals to me. The former, depicts the cover of Susan Stebbing’s most popular work Thinking to some purpose (1939) which was described on the cover of the first Pelican Books edition as being:

“A manual of first-aid to clear thinking, showing how to detect illogicalities in other people’s mental processes and how to avoid them in our own”

The work arose out of a synopsis she wrote for a series of radio broadcasts intended for the BBC. Published on the eve of the Second World War, Stebbing wrote:

“There is an urgent need to-day for the citizens of a democracy to think well. It is not enough to have freedom of the Press and parliamentary institutions. Our difficulties are due partly to our own stupidity, partly to the exploitation of that stupidity, and partly to our own prejudices and personal desires.”

Her words seem very timely.

To borrow from Wikipedia here: “This metaphor seems to me to be appropriate, because potted thinking is easily accepted, is concentrated in form, and has lost the vitamins essential to mental nourishment. You will notice that I have continued  the metaphor by using the word ‘vitamins.’ Do not accept the metaphor too hastily: it must be expanded.”

I wrote about use of language and the need for common sense in its use around our health, as well as food marketing, in a previous post. But on the book, Professor Stebbing [British philosopher 1885- 1943] went on to say:

“Potted meat is sometimes a convenient form of food; it may be tasty, it contains some nourishment. But its nutritive value is not equivalent to that of the fresh meat from which it was potted. Also, it must have originally been made from fresh meat, and must not be allowed to grow stale. Similarly a potted belief is convenient; it can be stated briefly, sometimes also in a snappy manner likely to attract attention. A potted belief should be the outcome of a belief that is not potted. It should not be held on to when circumstances have changed and new factors have come to light. We should not allow our habits of thought to close our minds, nor rely upon catch-words to save ourselves from the labour of thinking. Vitamins are essential for the natural growth of our bodies; the critical questioning at times of our potted beliefs is necessary for the development of our capacity to think to some purpose.”

So here’s to that, my ‘critical questioning’ may have shifted from one arena into another, but I hope I continue ‘thinking to some purpose’.

change, choice, family, health, pupils

The Universal Free school meal Programme applied. Free, but what will it really cost?

I have children who are entitled, come September, to the universal free school meal programme. Department of Education advice came out last week. See here >>universal infant free school meals.

I wonder whether this will bring back a national treasure to benefit those who need it most, or is it just a Pandora’s box of problems?

I must admit to feeling ignorant. How much evidence is there, that FSM for all, benefits those who need it more than a means tested system? There is certainly evidence of need, but how do we best address that need?

All the average parent can know well, is how the new system will affect our own child’s experience of school meals.

NetMums did a survey of lots of us. There are simple practical things which policy ignores, such as 4 year-olds starting school usually start on packed lunch only for a half term to get to grips with the basics of school, without having to manage trays and getting help to cut up food. The length of time they need for a hot meal is longer than packed lunch.

But it raises common concerns too which perhaps need more attention, many of which seem to be coming in, in drips of similar feedback: reduced school hall and gym access because the space will need to be used for longer due to increase in number eating hot meals, lack of good kitchen facilities, fears over cooked food quality.

The theory that a nutritious, hot meal at lunch time for all infants, is not what will be delivered in reality. All are valid concerns, over which parents have little control.

How will this change the standards and quality of food compared with today, What considerations have been made for food waste and Is it the wisest way for state money to be best spent to help all who really need it?

Firstly, let’s take to task the nutritional decision making. New standards are now mandatory again, after having been, and then not been – instead left at heads’ discretion. Swings and roundabouts.

There is a blanket ‘low fat’ approach. The trouble is,  this often also means ‘replace all fat with fake stuff for flavour’. It fails to recognise that not all fats are nutritionally equal. Cholesterol is often branded a villain, but is a necessary building block for the body. Whilst parents are lambasted for creating obesity in our children and that we don’t understand enough about food, I don’t know that I agree the Government does either.

Whilst I fully understand the popular and State-driven drive for cutting down obesity levels, cutting out fat across all the food groups may not be the key to achieving it, and improving national health. This ‘low-fat is good’ approach is controversial, and low fat in particular in dessert, replaced with artificial sweeteners, also potentially harmful, is a false choice. I believe that a gentle paleo approach to food, back to basics, is a better choice. Throw out artificial things, and eat almost everything that is natural, in moderation. Not all fats are the same. Children who are growing, need the kind of fat that is in milk. It’s not the same as chips. Sugar, yes, cut it out, but don’t replace with artificial sweeteners. Not everything served on plate should be classed food.

The whole programme of child health in school is based on sweeping generalisations, but they’re not made to apply to all schools equally.  We can be told an awful lot of twaddle of how our kids should eat and exercise by state-sent leaflets in book bags. Add to that, the fact that the BMI comparison is flawed, and its communications to parents method is fundamentally flawed. (Letters saying your perfectly healthy, well proportioned child is obese, or underweight, partly due to its tool as an average cross group measure, in the National Child Measurement Programme (NCMP) anyway. But that’s another, longer story.) It’s no wonder parents are confused, not knowing the best thing to do on these school meals or not.

“On 17 June 2014 the department announced a new set of simplified standards. The new standards are designed to make it easier for school cooks to create imaginative, flexible and nutritious menus. They will be mandatory for all maintained schools, academies that opened prior to 2010 and academies and free schools entering into a funding agreement from June 2014, and will come into force from January 2015.
One significant change in the new standards is that lower fat milk or lactose reduced milk must, from January 2015 be available for drinking at least once a day during school hours. The milk must be offered free of charge to pupils entitled to free school meals, and to all pupils where it forms part of the free school lunch to infants.”

There is conflicting information about milk consumption and asthma for example, so I’d like to see more information around this, on expected benefits overall. The milk given to them to drink often is UHT, skimmed and processed. If you take all the good stuff out of the milk, is it doing the kids who drink it any good? I’d like to know. We should know the general standards and calorie and nutritional content of their meals in both the theoretical guidelines and ask at practical local level on the ground, because one hot meal at lunchtime, a balanced diet does not make.  We need to know what the kids are getting, in order to try and fit it into the bigger picture of their whole intake.

Secondly, we haven’t talked much about waste.

Currently, my children every week, eat both hot lunches and packed lunches from home. I pay the school’s private provider, for regular, hot lunches three days a week, and I provide packed lunch on two. (I can see ahead of time online, what’s on the provider’s menu, and I can plan and coordinate with the rest of what and how we eat, according to our family schedule.)

From September, I will no longer be able to choose to book and pay for those meals myself. And I will no longer be able to choose for some days and not others. It’s all or nothing.

The local provider will also no longer permit parents of  Reception-Year 2 children to book meals and pay for them, so even if I am fortunate enough and wanted to, I can’t opt out of the state system and pay for only those meals my children will actually eat.

The result is, if I want to continue the mix of hot and packed lunch choice I make for them, based on our family life, schedule and the nutritional content of what I want them to eat, I am required to sign them up for all five days, and either they get the imposed routine and eat more hot dinners – or carry on with our current set-up and two days a week the other hot lunches will go to waste.

However having spoken to my local school meal service today, they confirmed that after 4 weeks they plan to have a review of waste, and cut back on food provided. They won’t be paid less.

The net result, the local private provider will receive more money from the State, for my children’s hot lunches, than I pay myself now. And likely as not, there will be food wasted as well, because the providers will need to allow that some children may take it up all days.

I understand that to administer detailed choices would potentially be costly. But already we have moved admin cost back from parent to school. From September, schools will need to administer how many children are taking up the meals, and any changes in numbers week on week. Until now, I could manage it with the provider online.

However, it need not increase the admin cost to schools or state, if I could continue to book for my children, as I do now, selecting their days and meals in advance, there would be a more cost effective use of our State money, without any change in administration. It would be up to the provider to bill as used, not blanket. Surely in these days of electronic charging, not hard, and could be made without manual intervention by the state, except for regular audits, which will need to happen anyway in any well governed accounting system.

Is this the wisest use of helping those in real need?

It feels as though the Government simply doesn’t trust us to feed our children properly. I think most I know do a fairly good job. And before anyone has a go at making it a class or wealth issue, I fundamentally disagree. You get good and bad parenting and cooking skills across the board. No one is perfect. I know families who are well off but their nanny takes them to McDonalds more than one night a week for tea. Families in poverty and moving out of poverty should get support in school meals for children, but I dislike the sweeping TV benefits-hype notion that ‘poor people can’t feed their children properly.’ As if somehow, wealth is an indicator of capability or ‘doing a good job’. I do believe that parents will always try and do the best to feed their children. There are of course the rare and horrific Daniel P. exceptions whose whole care was failed by parents and State alike. They will always exist and we as a society and State need to think how they can be best addressed. But is a rushed and inflexible system of school meals going to really address those exceptions? I don’t think so. That’s not what this is about and we shouldn’t let genuine individual cases, as well as media hype of individual suffering railroad discussions.

How was it done in the past? Some were granted the support of free school meals, so if they were then, and still are now what has driven the need for change? Is this new system, in fact a huge political admission that  welfare support is not enough for the many, many families where both parents work hard and still find each month a stretch to get good food on the table every day of the month? I believe so.

{ Sept 5th 2014 update confirms: 4 in 10 children are classed as living in poverty – but may not meet the welfare benefit criteria according to Nick Clegg, on LBC. That’s a scandalous admission of the whole social system failure. He believes working parents can’t afford to feed their children properly? So fix the overall income levels, welfare, social housing balance. Not FSM. The statement that schools ‘have to manage lunch anyway’, shows a failure to understand what an average primary is like. Not the best political collected response to a flagship policy which he should expect to be quizzed on in ‘Back to School’ week. Hats off to the nine year-old who nailed it.}

I welcome anything that will help families feed their children well. However, school dinners does not necessarily mean good nutrition. I remember friends who got FSM vouchers and chose chips as a main course and chocolate brownie for pud. The work by the Trussel Trust and others, shows what desperate measures are needed to help children who need it most and simply ‘a free school meal’ is not necessarily a ticket to good food, without rigorous application and monitoring of standards, including reviewing in schools what is offered vs what children actually eat from the offering.

Parents know what their children like and will eat. There is a risk some children will simply eat less if they don’t like what’s on offer.

The entitlement is also not applied to all primary children equally, but infants only. So within a family some children are entitled and others are not. Will this reshape family evening meals, where now one has ‘had a hot meal already today’ and others have not? Feedback so far seems to indicate that there are great unknowns, and that the practical application of this policy will not live up to the nice theory.

It feels like we’re being distracted, with a pretty sticking plaster on a gaping social wound.

A personal perspective

I know our family will be happy to save any money we can, having just taken on a mortgage for our first home. But we are very fortunate, and to be honest, I just feel like we’re not entitled to it. I want the funds to go where most needed. I’ll be glad to have extra money at home, but we manage without it and I’ll still send them some days with packed lunch. Yes if  it were only about cash and ‘entitlement’, we could choose to give any savings to school funds or another charity, but I also hate food waste.  I worry that the quality of food standards will fall, for everyone. Why will this time be different compared with standards which were so poor in the past?

Why impose this method on all without rigorous planing and evaluation and a transparent communication of that to parents and schools? My school certainly doesn’t feel that has happened or been communicated, and has had a ‘a couple of emails”.  And they are a great primary school who care about things being done well. At the end of summer term,  ‘it’s a bit of an unknown.’ And as for parents, we got an SMS and asked how many might be interested back in March I think. Nothing since then. If this is such a key initiative and so important for the future well being of our kids, why are parents should be being well informed.

I now have to decide, to keep my kids in hot dinners, take them out, or keep our as-is preferred mix but feel wasteful.

Where do you draw the line between support  and interference in our family life?

You could say don’t look a gift horse in the mouth, but it’s what is going into the mouths of our children that matters most. Jamie Oliver did his darnedest to educate and bring in change, showing school meals needed improvement in quality across the board. What has happened to those quality improvements he championed? Abandoned in free school & political dogma. There is clearly need when so many children are growing up in an unfairly distributed society of have and have-not, but the gap seems to be ever wider. Sheffield in 2012 had a 22% child poverty rate. Where is the analysis for true quality change, rather than change for a point of policy?

Is our children’s health a political football, which is being given as a concession in this Parliament, now rushed through to get checked-off, without being properly checked out first?

I’m not sure I trust the state imposed food standards to do a good job if the funding should be reduced in future, quality will fall again, back to the bad old pre-Jamie days.

Quality must be paramount if we are now expecting to see a larger portion of society, starting out with school meals, fed by State defined standards.

It seems there were pilots and trials but we haven’t heard much about them. There is plenty of history, but where is current discussion? I agree with David Laws, on the closure of school kitchens, but this mother believes current infrastructure and education should be fundamental to this programme, not coming in later as a secondary support measure. I wouldn’t normally choose to link to the Mail, but no other broadsheet seems to have covered it since the Department for Education guidance was issued last week.

Mr. Laws MP said,

“It is going to be one of the landmark social achievements of this coalition government – good for attainment, good for health, great for British food, and good for hard working families. Ignore the critics who want to snipe from the sidelines.”

I don’t want to be a critic from the sidelines, I’d like to be an informed citizen and a parent with choice. [and please, stop using hard working families, it indicates some sort of value judgement, which is borrowed from the coalition partners and not in a good way]

This is a consumer choice and health issue, having an effect on a practical aspect of my parenthood. It’s not a tenet of education substance.

Like these people and their FOIs, I want to ask and understand. I have questions: How will it affect the majority? Will this have a positive effect on the nutrition children get, which may be inadequate today? What guarantees are there that adequate food safety and quality issues are properly and independently governed? Will it be overall less costly and beneficial to children and parents? Will it reduce stigma? Will it increase hot dinners consumed and reduce packed lunch intake? (So much less healthy, we are told.) Is the cost worth the benefit for a minority or even for the many? Will it benefit the health of all our children?

Free, but what will it really cost?

Honestly, I don’t know. But that’s my main concern. It’s being done in such a rush without due transparency and communication, I don’t think anyone knows.