Category Archives: family

children, family, Tech, women

On #IWD2022 gender bias in #edTech

I’m a mother of three girls at secondary school. For international women’s day 2022 I’ve been thinking about the role of school technology in my life.

Could some of it be improved to stop baking-in gender discrimination norms to home-school relationships?

Families come in all shapes and sizes and not every family has defined Mum and Dad roles. I wonder if edTech could be better at supporting families if it offered the choice of a multi-parent-per-child relationship by-default?

School-home communications rarely come home in school bags anymore, but digitally, and routinely sent to one-parent-per-child. If something needs actioned, it’s typically going to one parent, not both. The design of digital tools can lock-in the responsibility for action to a single nominated person. Schools send the edTech company the ‘pupil parent contact’ email, but, at least in my experience, don’t ever ask what that should be after it’s been collected once. (And don’t do a good job of communicating data rights each time before doing so either, but that’s another story.)

Whether it’s about learning updates with report cards about the child, or weekly newsletters, changes of school clubs, closures, events or other ‘things you should know’ I filter emails I get daily from a number of different email accounts for relevance, and forward them on to Dad.

To administer cashless payments to school for contributions to art, cooking, science and technology lessons, school trips, other extras or to manage my child’s lunch money, there is a single email log-in and password for a parent role allocated to the child’s account.

And it might be just my own unrepresentative circle of friends, but it’s usually Mum who’s on the receiving end of demands at all hours.

In case of illness, work commitments, otherwise being unable to carry on as usual, it’s no longer as easy for a second designated parent role to automatically pick up or share the responsibilities.

One common cashless payment system’s approach does permit more than one parent role, but it’s manual and awkward to set up. “For a second parent to have access it is necessary for the school to send a second letter with a second temporary username and password combo to activate a second account. In short, the only way to do this is to ask your school.”

Some messaging services allow a school-to-multiple-parent email, but the message itself often forms an individual not group thread with the teacher, i.e designed for a class not a family.

Some might suggest it is easy enough to set up automatic email forwarding, but again this pushes back the onus onto the parent and doesn’t solve the problem of only one person able to perform transactions.

I wonder if one-way communications tools offered a second email address by default what difference it would make to overall parental engagement?

What if for financial management edTech permitted an option to have a ‘temporary re-route’ to another email address, or default second role with notification to the other something had been paid?

Why can’t one parent, once confirmed with secure access to the child-parent account, add a second parent role? These need not be the parent, but another relation managing the outgoing money. You can only make outgoing payments to the school, or withdraw money to the same single bank account it comes from, so fraud isn’t likely.

I wonder what research would look like at each of these tools, to assess whether there is a gender divide built into default admin?

What could it improve in work-life balance for staff and families, if emails were restricted to send or receive in preferred time windows?

Technology can be amazing and genuinely make life easier for some. But not everyone fits the default and I believe the defaults are rarely built to best suit users, but rather the institutions that procure them. In many cases edTech aren’t working well for the parents that make up their main user base.

If I were designing these, they’d be school not third-party cloud based, and distributed systems, centred on the child. I think we can do better, not only for women, but everyone.

PS When my children come home from school today, I’ll be showing them the Gender Pay Gap Bot @PayGapApp thread with explanations of mode, mean and median and worth a look.

change management, children, communications, data, empowerment, family, human rights, politics, pupils, transparency, trust

Damage that may last a generation.

Hosted by the Mental Health Foundation, it’s Mental Health Awareness Week until 24th May, 2020. The theme for 2020 is ‘kindness’.

So let’s not comment on the former Education Ministers and MPs, the great-and-the-good and the-recently-resigned, involved in the Mail’s continued hatchet job on teachers. They probably believe that they are standing up for vulnerable children when they talk about the “damage that may last a generation“. Yet the evidence of much of their voting, and policy design to-date, suggests it’s much more about getting people back to work.

Of course there are massive implications for children in families unable to work or living with the stress of financial insecurity on top of limited home schooling. But policy makers should be honest about the return to school as an economic lever, not use children’s vulnerability to pressure professionals to return to full-school early, or make up statistics to up the stakes.

The rush to get back to full-school for the youngest of primary age pupils has been met with understandable resistance, and too few practical facts. Going back to a school in COVID-19 measures for very young children, will take tonnes of adjustment, to the virus, to seeing friends they cannot properly play with, to grief and stress.

When it comes to COVID-19 risk, many countries with similar population density to the UK, locked down earlier and tighter —and now have lower rates of community transmission than we do. Or compare where didn’t, Sweden, but that has a population density of 24 people per Km2. The population density for the United Kingdom is 274 people per square kilometre. In Italy, with 201 inhabitants per square kilometre,  you needed a permission slip to leave home.

And that’s leaving aside the unknowns on COVID-19 immunity, or identifying it, or the lack of testing offer to over a million children under-5,  the very group expected to be those who return first to full-school.

Children have rights to education, and to life, survival and development. But the blanket target groups and target date, don’t appear to take the Best Interests of The Child, for each child, into account at all. ‘Won’t someone think of the children?’ may never have been more apt.

Parenting while poor is highly political

What’s the messaging in the debate, even leaving media extremes aside?

The sweeping assumption by many commentators that ‘the poorest children will have learned nothing‘ (BBC Newsnight, May 19) is unfair, but this blind acceptance as fact, a politicisation of parenting while poor, conflated with poor parenting, enables the claimed concern for their vulnerability to pass without question.

Many of these most vulnerable children were not receiving full time education *before* the pandemic but look at how it is told.

It would be more honest in discussion or publishing ‘statistics’ around the growing gap expected if children are out of school, to consider what the ‘excess’ gap will be and why. (Just like measuring excess deaths, not only those people who died and had been tested for COVID-19.) Thousands of vulnerable children were out of school already, due to ‘budget decisions that had left local authorities unable to fulfil their legal obligation to provide education.’

Pupil Referral Units were labeled “a scandal” in 2012 and only last year the constant “gangs at the gates” narrative was highly political.

“The St Giles Trust research provided more soundbites. Pupils involved in “county lines” are in pupil referral units (PRUs), often doing only an hour each day, and rarely returning into mainstream education.’ (Steve Howell, Schools Week)

Nearly ten years on, there is still lack of adequate support for children in Alternative Provision and a “destructive narrative of “us versus them”.

Source: @sarahkendzior

The value of being in school

Schools have remained open for children of key workers and more than half a million pupils labeled as ‘vulnerable’, which includes those classified as “children in need” as well as 270,000 children with an education, health and care (EHC) plan for special educational needs.  Not all of those are ‘at risk’ of domestic violence or abuse or neglect. The reasons why there is low turnout, tend to be conflated.

Assumptions abound about the importance of formal education and the best place for those very young children in Early Years (age 2-5) to be in school at all, despite conflicting UK evidence, that is thin on the ground. Research for the NFER [the same organisation running the upcoming Baseline Test of four year olds still due to begin this year] (Sharp, 2002), found:

“there would appear to be no compelling educational rationale for a statutory school age of five or for the practice of admitting four-year-olds to school reception classes.” And “a late start appears to have no adverse effect on children’s progress.”

Later research from 2008, from the IoE, Research Report No. DCSF-RR061 (Sylva et al, 2008) commissioned before the then ‘new’ UK Government took office in 2010, suggested better outcomes for children who are in excellent Early Years provision, but also pointed out that more often the most vulnerable are not those in the best of provision.

“quality appears to be especially important for disadvantaged groups.”

What will provision quality be like, under Coronavirus measures? How much stress-free space and time for learning will be left at all?

The questions we should be asking are a) What has been learned for the second wave and b) Assume by May 2021 nothing changes. What would ideal schooling look like, and how do we get there?

Attainment is not the only gap

While it is not compulsory to be in any form of education, including home education, till your fifth birthday in England, most children start school at age 4 and turn five in the course of the year. It is one of the youngest starts in Europe.  Many hundreds of thousands of children start formal education in the UK even younger from age 2 or three. Yet is it truly better for children? We are way down the Pisa attainment scores, or comparable regional measures.  There has been little change in those outcomes in 13 years, except to find that our children are measured as being progressively less happy.

“As Education Datalab points out, the PISA 2018 cohort started school around 2008, so their period at school not only lines up with the age of austerity and government cuts, but with the “significant reforms” to GCSEs introduced by Michael Gove while he was Education Secretary.”  [source: Schools Week, 2019]

There’s no doubt that some of the harmful economic effects of Brexit will be attributed to the effects of the pandemic. Similarly, many of the outcomes of ten years of policy that have increased  children’s vulnerability and attainment gap, pre-COVID-19, will no doubt be conflated with harms from this crisis in the next few years.

The risk of the acceptance of misattributing this gap in outcomes, is a willingness to adopt misguided solutions, and deny accountability.

Children’s vulnerability

Many experts in children’s needs, have been in their jobs much longer than most MPs and have told them for years the harm their policies are doing to the very children, those voices now claim to want to protect. Will the MPs look at that evidence and act on it?

More than a third of babies are living below the poverty line in the UK. The common thread in many [UK] families’ lives, as Helen Barnard, deputy director for policy and partnerships for the Joseph Rowntree Foundation described in 2019, is a “rising tide of work poverty sweeping across the country.” Now the Coronavirus is hitting those families harder too. The ONS found that in England the death rate  in the most deprived areas is 118% higher than in the least deprived.

Charities speaking out this week, said that in the decade since 2010, local authority spending on early intervention services dropped by 46% but has risen on late intervention, from 58% to 78% of spending on children and young people’s services over the same period.

If those advocating for a return to school, for a month before the summer, really want to reduce children’s vulnerability, they might sort out CAMHs for simultaneous support of the return to school, and address those areas in which government must first do no harm. Fix these things that increase the “damage that may last a generation“.

Case studies in damage that may last

Adoption and Children (Coronavirus) (Amendment) Regulations 2020’

Source: Children’s Commissoner (April 2020)

“These regulations make significant temporary changes to the protections given in law to some of the most vulnerable children in the country – those living in care.” ” I would like to see all the regulations revoked, as I do not believe that there is sufficient justification to introduce them. This crisis must not remove protections from extremely vulnerable children, particularly as they are even more vulnerable at this time. As an urgent priority it is essential that the most concerning changes detailed above are reversed.”

CAMHS: Mental health support

Source: Local Government Association CAMHS Facts and Figures

“Specialist services are turning away one in four of the children referred to them by their GPs or teachers for treatment. More than 338,000 children were referred to CAMHS in 2017, but less than a third received treatment within the year. Around 75 per cent of young people experiencing a mental health problem are forced to wait so long their condition gets worse or are unable to access any treatment at all.”

“Only 6.7 per cent of mental health spending goes to children and adolescent mental health services (CAMHS). Government funding for the Early Intervention Grant has been cut by almost £500 million since 2013. It is projected to drop by a further £183 million by 2020.

“Public health funding, which funds school nurses and public mental health services, has been reduced by £600 million from 2015/16 to 2019/20.”

Child benefit two-child limit

Source: May 5, Child Poverty Action Group
“You could not design a policy better to increase child poverty than this one.” source: HC51 House of Commons Work and Pensions Committee
The two-child limit Third Report of Session 2019 (PDF, 1 MB)

“Around sixty thousand families forced to claim universal credit since mid-March because of COVID-19 will discover that they will not get the support their family needs because of the controversial ‘two-child policy”.

Housing benefit

Source: the Poverty and Social Exclusion in the United Kingdom research project funded by the Economic and Social Research Council.

“The cuts [introduced from 2010 to the 2012 budget] in housing benefit will adversely affect some of the most disadvantaged groups in society and are likely to lead to an increase in homelessness, warns the homeless charity Crisis.”

Legal Aid for all children

Source: The Children’s Society, Cut Off From Justice, 2017

“The enactment of the Legal Aid, Punishment and Sentencing of Offenders Act 2012 (LASPO) has had widespread consequences for the provision of legal aid in the UK. One key feature of the new scheme, of particular importance to The Children’s Society, were the changes made to the eligibility criteria around legal aid for immigration cases. These changes saw unaccompanied and separated children removed from scope for legal aid unless their claim is for asylum, or if they have been identified as victims of child trafficking.”

“To fulfill its obligations under the UNCRC, the Government should reinstate legal aid for all unaccompanied and separated migrant children in matters of immigration by bringing it back within ‘scope’ under the Legal Aid, Sentencing and Punishment of Offenders Act 2012. Separated and unaccompanied children are super-vulnerable.”

Library services

Source: CIPFA’s annual library survey 2018

“the number of public libraries and paid staff fall every year since 2010, with spending reduced by 12% in Britain in the last four years.” “We can view libraries as a bit of a canary in the coal mine for what is happening across the local government sector…” “There really needs to be some honest conversations about the direction of travel of our councils and what their role is, as the funding gap will continue to exacerbate these issues.”

No recourse to public funds: FSM and more

source: NRPF Network
“No recourse to public funds (NRPF) is a condition imposed on someone due to their immigration status. Section 115 Immigration and Asylum Act 1999 states that a person will have ‘no recourse to public funds’ if they are ‘subject to immigration control’.”

“children only get the opportunity to apply for free school meals if their parents already receive certain benefits. This means that families who cannot access these benefits– because they have what is known as “no recourse to public funds” as a part of their immigration status– are left out from free school meal provision in England.”

Sure Start

Source: Institute for Fiscal Studies (2019)

“the reduction in hospitalisations at ages 5–11 saves the NHS approximately £5 million, about 0.4% of average annual spending on Sure Start. But the types of hospitalisations avoided – especially those for injuries – also have big lifetime costs both for the individual and the public purse”.

Youth Services

Source: Barnardo’s (2019) New research draws link between youth service cuts and rising knife crime.

“Figures obtained by the All-Party Parliamentary Group (APPG) on Knife Crime show the average council has cut real-terms spending on youth services by 40% over the past three years. Some local authorities have reduced their spending – which funds services such as youth clubs and youth workers – by 91%.”

Barnardo’s Chief Executive Javed Khan said:

“These figures are alarming but sadly unsurprising. Taking away youth workers and safe spaces in the community contributes to a ‘poverty of hope’ among young people who see little or no chance of a positive future.”

consent, empowerment, family, National Pupil Database, privacy

The front door to our children’s personal data in schools

“EdTech UK will be a pro-active organisation building and accelerating a vibrant education and learning technology sector and leading new developments with our founding partners. It will also be a front door to government, educators, companies and investors from Britain and globally.”

Ian Fordham, CEO, EdTech UK

This front door is a gateway to access our children’s personal data and through it some companies are coming into our schools and homes and taking our data without asking.  And with that, our children lose control over their safeguarded digital identity. Forever.

Companies are all “committed to customer privacy” in those privacy policies which exist at all. However, typically this means they also share your information with ‘our affiliates, our licensors, our agents, our distributors and our suppliers’ and their circles are wide and often in perpetuity. Many simply don’t have a published policy.

Where do they store any data produced in the web session? Who may access it and use it for what purposes? Or how may they use the personal data associated with staff signing up with payment details?

According to research from London & Partners, championed by Boris Johnson, Martha Lane-Fox and others in EdTech, education is one of the fastest growing tech sectors in Britain and is worth £45bn globally; a number set to reach a staggering £129bn by 2020. And perhaps the EdTech diagrams in US dollars shows where the UK plan to draw companies from. If you build it, they will come.

The enthusiasm that some US EdTech type entrepreneurs I have met or listened to speak, is akin to religious fervour. Such is their drive for tech however, that they appear to forget that education is all about the child. Individual children. Not cohorts, or workforces. And even when they do it can be sincerely said, but lacks substance when you examine policies in practice.

How is the DfE measuring the cost and benefit of tech and its applications in education?

Is anyone willing to say not all tech is good tech, not every application is a wise application? Because every child is unique, not every app is one size fits all?

My 7-yo got so caught up in the game and in the mastery of the app their class was prescribed for homework in the past, that she couldn’t master the maths and harmed her confidence. (Imagine something like this, clicking on the two correct sheep with numbers stamped on them, that together add up to 12, for example, before they fall off and die.)

She has no problem with maths. Nor doing sums under pressure. She told me happily today she’d come joint second in a speed tables test. That particular app style simply doesn’t suit her.

I wonder if other children and parents find the same and if so, how would we know if these apps do more harm than good?

Nearly 300,000 young people in Britain have an anxiety disorder according to the Royal College of Psychiatrists. Feeling watched all the time on-and offline is unlikely to make anxiety any better.

How can the public and parents know that edTech which comes into the home with their children, is behaviourally sound?

How can the public and parents know that edTech which affects their children, is ethically sound in both security and application?

Where is the measured realism in the providers’ and policy makers fervour when both seek to marketise edTech and our personal data for the good of the economy, and ‘in the public interest’.

Just because we can, does not always mean we should. Simply because data linkage is feasible, even if it brings public benefit, cannot point blank mean it will always be in our best interest.

In whose best Interest is it anyway?

Right now, I’m not convinced that the digital policies at the heart of the Department for Education, the EdTech drivers or many providers have our children’s best interests at heart at all. It’s all about the economy; when talking if at all about children using the technology, many talk only of ‘preparing the workforce’.

Are children and parents asked to consent at individual level to the terms and conditions of the company and told what data will be extracted from the school systems about their child? Or do schools simply sign up their children and parents en masse, seeing it as part of their homework management system?

How much ‘real’ personal data they use varies. Some use only pseudo-IDs assigned by the teacher. Others log, store and share everything they do assigned to their ID or real email address , store performance over time and provide personalised reports of results.

Teachers and schools have a vital role to play in understanding data ethics and privacy to get this right and speaking to many, it doesn’t seem something they feel well equipped to do. Parents aren’t always asked. But should schools not always have to ask before giving data to a commercial third party or when not in an ’emergency’ situation?

I love tech. My children love making lego robots move with code. Or driving drones with bananas. Or animation. Technology offers opportunity for application in and outside schools for children that are fascinating, and worthy, and of benefit.

If however all parents are to protect children’s digital identity for future, and to be able to hand over any control and integrity over their personal data to them as adults,  we must better accommodate children’s data privacy in this 2016 gold rush for EdTech.

Pupils and parents need to be assured their software is both educationally and ethically sound.  Who defines those standards?

Who is in charge of Driving, Miss Morgan?

Microsoft’s vice-president of worldwide education, recently opened the BETT exhibition and praised teachers for using technology to achieve amazing things in the classroom, and urged innovators to  “join hands as a global community in driving this change”.

While there is a case to say no exposure to technology in today’s teaching would be neglectful, there is a stronger duty to ensure exposure to technology is positive and inclusive, not harmful.

Who regulates that?

We are on the edge of an explosion of tech and children’s personal data ‘sharing’ with third parties in education.

Where is its oversight?

The community of parents and children are at real risk of being completely left out these decisions, and exploited.

The upcoming “safeguarding” policies online are a joke if the DfE tells us loudly to safeguard children’s identity out front, and quietly gives their personal data away for cash round the back.

The front door to our children’s data “for government, educators, companies and investors from Britain and globally” is wide open.

Behind the scenes  in pupil data privacy, it’s a bit of a mess. And these policy makers and providers forgot to ask first,  if they could come in.

If we build it, would you come?

My question now is, if we could build something better on pupil data privacy AND better data use, what would it look like?

Could we build an assessment model of the collection, use and release of data in schools that could benefit pupils and parents, AND educational establishments and providers?

This could be a step towards future-proofing public trust which will be vital for companies who want a foot-in-the door of EdTech. Design an ethical framework for digital decision making and a practical data model for use in Education.

Educationally and ethically sound.

If together providers, policy makers, schools at group Trust level, could meet with Data Protection and Privacy civil society experts to shape a tool kit of how to assess privacy impact, to ensure safeguarding and freedoms, enable safe data flow and help design cybersecurity that works for them and protects children’s privacy that is lacking today, designing for tomorrow, would you come?

Which door will we choose?

*******

image credit: @ Ben Buschfeld Wikipedia

*added February 13th: Oftsed Chair sought from US

family, human rights, National Pupil Database, politics, privacy, surveillance, Tech, transparency, trust

Monitoring software in schools: the Department for Education’s digital dream or nightmare? (2)

“Children do not lose their human rights by virtue of passing through the school gates” (UN Committee on the Rights of the Child, General Comment on ‘The aims of education’, 2001).

The Digital Skills in Schools inquiry [1] is examining the gap in education of our children to enable them to be citizens fit for the future.

We have an “educational gap” in digital skills and I have suggested it should not be seen only as functional or analytical, but should also address a gap in ethical skills and framework to equip our young people to understand their digital rights, as well as responsibilities.

Children must be enabled in education with opportunity to understand how they can grow “to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity”. [2]

Freedom to use the internet in privacy does not mean having to expose children to risks, but we should ask, are there ways of implementing practices which are more proportionate, and less intrusive than monitoring and logging keywords [3] for every child in the country? What problem is the DfE trying to solve and how?

Nicky Morgan’s “fantastic” GPS tracking App

The second technology tool Nicky Morgan mentioned in her BETT speech on January 22nd, is an app with GPS tracking and alerts creation. Her app verdict was “excellent” and “fantastic”:

“There are excellent examples at the moment such as the Family First app by Group Call. It uses GPS in mobile phones to help parents keep track of their children’s whereabouts, allowing them to check that they have arrived safely to school, alerting them if they stray from their usual schedule.” [4]

I’m not convinced tracking every child’s every move is either excellent or fantastic. Primarily because it will foster a nation of young people who feel untrusted, and I see a risk it could create a lower sense of self-reliance, self-confidence and self-responsibility.

Just as with the school software monitoring [see part one], there will be a chilling effect on children’s freedom if these technologies become the norm. If you fear misusing a word in an online search, or worry over stigma what others think, would you not change your behaviour? Our young people need to feel both secure and trusted at school.

How we use digital in schools shapes our future society

A population that trusts one another and trusts its government and organisations and press, is vital to a well functioning society.

If we want the benefits of a global society, datasharing for example to contribute to medical advance, people must understand how their own data and digital footprint fits into a bigger picture to support it.

In schools today pupils and parents are not informed that their personal confidential data are given to commercial third parties by the Department for Education at national level [5]. Preventing public engagement, hiding current practices, downplaying the risks of how data are misused, also prevents fair and transparent discussion of its benefits and how to do it better. Better, like making it accessible only in a secure setting not handing data out to Fleet Street.

For children this holds back public involvement in the discussion of the roles of technology in their own future. Fear of public backlash over poor practices must not hold back empowering our children’s understanding of digital skills and how their digital identity matters.

Digital skills are not shorthand for coding, but critical life skills

Skills our society will need must simultaneously manage the benefits to society and deal with great risks that will come with these advances in technology; advances in artificial intelligence, genomics, and autonomous robots, to select only three examples.

There is a glaring gap in their education how their own confidential personal data and digital footprint fit a globally connected society, and how they are used by commercial business and third parties.

There are concerns how apps could be misused by others too.

If we are to consider what is missing in our children’s preparations for life in which digital will no longer be a label but a way of life, then to identify the gap, we must first consider what we see as whole.

Rather than keeping children safe in education, as regards data sharing and digital privacy, the DfE seems happy to keep them ignorant. This is no way to treat our young people and develop their digital skills, just as giving their data away is not good cyber security.

What does a Dream for a  great ‘digital’ Society look like?

Had Martin Luther King lived to be 87 he would have continued to inspire hope and to challenge us to fulfill his dream for society – where everyone would have an equal opportunity for “life, liberty and the pursuit of happiness.”

Moving towards that goal, supported with technology, with ethical codes of practice, my dream is we see a more inclusive, fulfilled, sustainable and happier society. We must educate our children as fully rounded digital and data savvy individuals, who trust themselves and systems they use, and are well treated by others.

Sadly, introductions of these types of freedom limiting technologies for our children, risk instead that it may be a society in which many people do not feel comfortable, that lost sight of the value of privacy.

References:

[1] Digital Skills Inquiry: http://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2015/digital-skills-inquiry-15-16/

[2] UN Convention of the Rights of the Child

[3] Consultation: Keeping Children Safe in Education – closing Feb 16thThe “opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and proprieties “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities.

The Consultation Guidance: most relevant paragraphs 75 and 77 p 22

[4] Nicky Morgan’s full speech at BETT

[5] The defenddigitalme campaign to ask the Department forEducation to change practices and policy around The National Pupil Database

 

 

consent, empowerment, engagement, family, National Pupil Database, politics, privacy, pupils

Monitoring software in schools: the Department for Education’s digital dream or nightmare? (1)

Nicky Morgan, the Education Secretary,  gave a speech [1] this week and shared her dream of the benefits technology for pupils.

It mentioned two initiatives to log children’s individual actions; one is included in a consultation on new statutory guidance, and the other she praised, is a GPS based mobile monitoring app.

As with many new applications of technology, how the concept is to be implemented in practice is important to help understand how intrusive any new use of data is going to be.

Unfortunately for this consultation there is no supporting code of practice what the change will mean, and questions need asked.

The most significant aspects in terms of changes to data collection through required monitoring are in the areas of statutory monitoring, systems, and mandatory teaching of ‘safeguarding’:

Consultation p11/14: “We believe including the requirement to ensure appropriate filtering and monitoring are in place, in statutory guidance, is proportional and reasonable in order to ensure all schools and colleges are meeting this requirement. We don’t think including this requirement will create addition burdens for the vast majority of schools, as they are already doing this, but we are keen to test this assumption.”

Consultation:  paragraph 75 on page 22 introduces this guidance section and ends with a link to “Buying advice for schools.” “Governing bodies and proprietors should be confident that systems are in place that will identify children accessing or trying to access harmful and inappropriate content online. Guidance on e-security is available from the National Education Network.“

Guidance: para 78 “Whilst it is essential that governing bodies and proprietors ensure that appropriate filters and monitoring systems are in place they should be careful  that “over blocking” does not lead to unreasonable restrictions as to what children can be taught with regards to online teaching  and safeguarding.” —

Consultation: “The Opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and  “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities. This is an important topic and the assumption is the vast majority of governing bodies and proprietors will already be ensuring the children in their school are suitably equipped with regards to safeguarding. But we are keen to hear views as to the change in emphasis.”

Paragraph 88 on p24  is oddly phrased: “Governing bodies and proprietors should ensure that staff members do not agree confidentiality and always act in the best interests of the child.”

What if confidentiality may sometimes be in the best interests of the child? What would that mean in practice?

 

Keeping Children Safe in Education – Questions on the Consultation and Use in practice

The consultation [2] is open until February 16th, and includes a new requirement to have web filtering and monitoring systems.

Remembering that 85% of children’s waking hours are spent outside school, and in a wide range of schools our children aged 2 -19, not every moment is spent unsupervised and on-screen, is it appropriate that this 24/7 monitoring would be applied to all types of school?

This provider software is reportedly being used in nearly 1,400 secondary schools in the UK.  We hear little about its applied use.

The cases of cyber bullying or sexting in schools I hear of locally, or read in the press, are through smartphones. Unless the school snoops on individual devices I wonder therefore if the cost, implementation and impact is proportionate to the benefit?

  1. Necessary and proportionate? How does this type of monitoring compare with other alternatives?
  2. Privacy impact assessment? Has any been done – surely required as a minimum measure?
  3. Cost benefit risk assessment of the new guidance in practice?
  4. Problem vs Solution: What problem is it trying to solve and how will they measure if it is successful, or stop its use if it is not?  Are other methods on offer?
  5. Due diligence: how do parents know that the providers have undergone thorough vetting and understand who they are? After all, these providers have access to millions of our children’s  online interactions.
  6. Evidence: If it has been used for years in school, how has it been assessed against other methods of supervision?
  7. The national cash cost: this must be enormous when added up for every school in the country, how is cost balanced against risk?
  8. Intangible costs – has anyone asked our children’s feeling on this? Where is the boundary between what is constructive and creepy? Is scope change documented if they decide to collect more data?

Are we Creating a Solution that Solves or creates a Problem?

The private providers would have no incentive to say their reports don’t work and schools, legally required to be risk averse, would be unlikely to say stop if there is no outcome at all.

Some providers  include “review of all incidents by child protection and forensic experts; freeing up time for teachers to focus on intervention” and “trends such as top users can be viewed.” How involved are staff who know the child as a first point of information sharing?

Most tools are multipurposed and I understand the reasons given behind them, but how it is implemented concerns me.

If the extent of these issues really justify this mass monitoring in every school – what are we doing to fix the causes, not simply spy on every child’s every online action in school? (I look at how it extends outside in part two.)

Questions on Public engagement: How are children and families involved in the implementation and with what oversight?

  1. Privacy and consent: Has anyone asked pupils and parents what they think and what rights they have to say no to sharing data?
  2. Involvement: Are parents to be involved and informed in software purchasing and in all data sharing decisions at local or regional level? Is there consistency of message if providers vary?
  3. Transparency: Where are the data created through the child’s actions stored, and for how long? Who has access to the data? What actions may result from it? And with what oversight?
  4. Understanding: How will children and parents be told what is “harmful and inappropriate content” as loosely defined by the consultation, and what they may or may not research? Children’s slang changes often, and “safeguarding” terms are subjective.
  5. Recourse: Will it include assessment of unintended consequences from misinterpretation of information gathered?
  6. Consent: And can I opt my child out from data collection by these unknown and ‘faceless’ third parties?

If children and parents are told their web use is monitored, what chilling effect may that have on their trust of the system, of teaching staff, and their ability to look for content to support their own sensitive concerns or development  that they may not be able to safe to look for at home? What limitation will that put on their creativity?

These are all questions that should be asked to thoroughly understand the consultation and requires wide public examination.

Since key logging is already common practice (according to provider websites) and will effectively in practice become statutory, where is the public discussion? If it’s not explicitly statutory, should pupils be subject to spying on their web searches in a postcode lottery?

What exactly might this part of the new guidance mean for pupils?

In part two, I include the other part of her speech, the GPS app and ask whether if we track every child in and outside school, are we moving closer to the digital dream, or nightmare, in the search to close the digital skills gap?

****

References:

[1] Nicky Morgan’s full speech at BETT

[2] Consultation: Keeping Children Safe in Education – closing Feb 16thThe “opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and proprieties “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities.

The Consultation Guidance: most relevant paragraphs 75 and 77 p 22

“Governing bodies and proprietors should be confident that systems are in place that will identify children accessing or trying to access harmful and inappropriate content online. [Proposed statutory guidance]

Since “guidance on procuring appropriate ICT” from the National Education Network NEN* is offered, it is clearly intended that this ‘system’ to be ‘in place’, should be computer based. How will it be applied in practice? A number of the software providers for schools already provide services that include key logging, using “keyword detection libraries” that “provides a complete log of all online activity”.

(*It’s hard to read more about as many of NEN’s links are dead.)  

family, National Pupil Database, politics, pupils

Free School Meals: A political football and the need for research to referee

I wrote this post in July 2014, before the introduction of the universal infant free school meals programme (UIFSM) and before I put my interest in data to work. Here’s an updated version. My opinion why I feel it is vital that  public health and socio economic research should create an evidence base that justifies or refutes policy. 

I wondered last year whether our children’s health and the impact of UIFSM was simply a political football, which was given as a concession in the last Parliament, rushed through to get checked-off, without being properly checked out first?

How is UIFSM Entitlement Measured and What Data do we Have?

I have wondered over this year how the new policy which labels more children as entitled to free school meals may affect public health and social research.

The Free School Meal (FSM) indicator has been commonly used as a socio-economic indicator.

In fact, there is still a practical difference within the ‘free school meals’ label.

In my county, West Sussex, those who are entitled to FSM beyond infants must actively register online. Although every child in Reception, Years 1 and 2  is automatically entitled to UIFSM, parents in receipt of the state income benefits must actively register with county to have an FSM eligibility check, so that schools receive the Pupil Premium.  Strangely having to register for ‘Free School Meals’ where others need not under automatic entitlement in infants – because it’s not called as it probably should be ‘sign up for Pupil Premium’ which benefits the school budget and one hopes, the child with support or services they would not otherwise get.

Registering for a free school meal eligibility check could raise an extra grant of £1,320 per year, per child, for the child’s primary school, or £935 per child for secondary schools, to fund valuable support like extra tuition, additional teaching staff or after school activities. [source]

Researchers will need to give up the FSM indicator used as an adopted socio-economic function in age groups under 8. Over 8 (once children leave infants) only those entitled due to welfare status and actively  registered will have the FSM label. Any comparative research can only use the Pupil Premium status, but as the benefits which permit applying for it changed too, comparison will be hard. An obvious and important change to remember measuring  the effects of the policy change have had.

One year on, I’d also like to understand how research may capture the changes of children’s experience in reality.

There are challenges in this; not least getting hold of the data. Given that private providers may not all be open to provision of information, do not provide data as open data, and separately, are not subject to the Freedom of Information Act, we may not be able to find out the facts around the changes and how catering meets the needs of some of our youngest children.

If it can be hard to access information from private providers held by them, it can be even harder to do research in the public interest using information about them. In my local area Capita manages a local database and the meal providers are private companies. (No longer staff directly employed and accountable to schools as once was).

[updated Aug 30 HT Owen Boswara for the link to the Guardian article in March 2015 reporting that there are examples where this has cut the Pupil Premium uptake]

Whom does it benefit most?

Quantity or Quality and Equality?

In last year’s post I considered food quality and profit for the meal providers.

I would now be interested to see research on what changes if any there have been in the profit and costs of school meal providers since the UIFSM introduction and what benefits we see for them compared with children.

4 in 10 children are classed as living in poverty but may not meet welfare benefit criteria according to Nick Clegg, on LBC on Sept 5th 2014. That was a scandalous admission of the whole social system failure on child poverty. Hats off to the nine year-old who asked good questions last year.

The entitlement is also not applied to all primary children equally, but infants only. So within one family some children are now entitled and others are not.

I wonder if this has reshaped family evening meals for those who do not quite qualify for FSM, where now one child has already ‘had a hot meal today’ and others have not?

The whole programme of child health in school is not only unequal in application to children by age, but is not made to apply to all schools equally.

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 at least in free school where schools are exempt from national standards. [update: Aug 25 his recent comment].

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. Is Jamie right that in England eating well is a middle class concern? Is it impossible in this country to eat cheaply and eat well?

In summary, I welcome anything that will help families feed their children well. But do free school dinners necessarily mean good nutrition? 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.

Where is the analysis for people based policy that will tackle the causes of need, and assess if those needs are being met?

Evidence based understanding

It appears there were pilots and trials but we hadn’t heard much about them before September 2014. I agreed with then MP David Laws, on the closure of school kitchens, but from my own experience, the UIFSM programme lacked adequate infrastructure and education before it began.

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 and know that this programme brought in good food for good health. Good for very child, but I’d like to know it brought the necessary change for the children who really needed it. [Ignoring his comment on hard working families, which indicates some sort of value judgement and out of place.]

Like these people and their FOIs, I want to ask and understand. Will this have a positive effect on the nutrition children get, which may be inadequate today?

How will we measure if UIFSM is beneficial to children who need it most?

Data used well gives insights into society that researchers should use to learn from and make policy recommendations.

The data from the meal providers and the data on UIFSM indicators as well as Pupil Premium need looked at together. That won’t be easy.

What is accessible is the data held by the DfE but that may also be “off” for true comparison because the need for active sign up is reportedly patchy.

Data on individual pupils needs used with great care due to these measurement changes in practice as well as its sensitivity. To measure that the policy is working needs careful study accounting for all the different factors that changed at the same time. The NPD has pupil premium tracked but has its uptake affected the numbers as to make it a useful comparator?

Using this administrative data  — aggregated and open data — and at other detailed levels for bona fide research is vital to understand if policies work. The use of administrative data for research has widespread public support in the public interest, as long as it is done well and not for commercial use.

To make it more usefully available, and as I posted previously, I believe the Department of Education should shape up its current practices in its capacity as the data processor and controller of the National Pupil Database to be fit for the 21st century if it is to meet public expectations of how it should be done.

Pupils and parents should be encouraged to become more aware about information used about them, in the same way that the public should be encouraged to understand how that information is being used to shape policy.

At the same time as access to state held data could be improved, we should also demand that access to information for public health and social benefit should be required from private providers. Public researchers must be prepare to stand up and defend this need, especially at a time when Freedom of Information is also under threat and should in fact expanded to cover private providers like these, not be restricted further.

Put together, this data in secure settings with transparent oversight could be invaluable in the public interest. Being seen to do things well and seeing public benefits from the data will also future-proof public trust that is vital to research. It could be better for everyone.

So how and when will we find out how the UIFSM policy change made a difference?

What did UIFSM ever do for us?

At a time when so many changes have taken place around child health, education, poverty and its measurement it is vital that public health and socio economic research creates an evidence base that justifies or refutes policy.

In some ways, neutral academic researchers play the role of referee.

There are simple practical things which UIFSM 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. How these things have affected starting school is intangible.

Other tangible concerns need more attention, many of which have been reported in drips of similar feedback such as reduced school hall and gym access affecting all primary age children (not only infants) because the space needs to be used for longer due to the increase in numbers eating hot meals.

Research to understand the availability of facilities and time spent on sport in schools since the introduction of UIFSM will be interesting to look at together with child obesity rates.

The child poverty measurements also moved this year. How will this influence our perception of poverty and policies that are designed to tackle it?

Have we got the data to analyse these policy changes? Have we got analysis of the policy changes to see if they benefit children?

As a parent and citizen, I’d like to understand who positions the goalposts in these important public policies and why.

And who is keeping count of the score?

****

image source: The Independent

refs: Helen Barnard, JRF. http://www.jrf.org.uk/blog/2015/06/cutting-child-benefit-increasing-free-childcare-where-poverty-test

#caredata, activism, care.data, choice, engagement, family, HSCIC, leadership, leaflet, privacy

Patient questions on care.data – an open letter

Dear NHS England Patients & Information Directorate,

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

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

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

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

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

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

HSJ, 10th December 2013

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

Response to the Listening exercises

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

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

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

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

Transparency of Process, Policies and Approach

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Pathfinder’ pilots

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Citizen engagement

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In the words of Lord Darzi,

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

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

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

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

Suggestions

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

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

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

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

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

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

Thank you for your consideration.

Yours sincerely.

 

Addendum: Sample of ten significant questions still outstanding

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

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

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

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

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

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

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

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

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

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

6. What of the Governance changes discussed?

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

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

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

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

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

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

9.  Current communications:

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

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

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

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

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

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

*******

References for remaining questions:

17th June Open House: Q&A

17th June Open House: Unanswered public Questions

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

6th September care.data meeting in London

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

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.