Tag Archives: confidentiality

The contest and clash of child rights and parent power

November 7, 2024 jenpersson Leave a comment

What does the U.S. election outcome mean for education here? One aspect is that while the ‘Christian right’ in the UK may not be as powerful as its US counterpart, it still exerts influence on public policy. While far from new, it has become more prominent in parliament since the 2019 election. But even in 2008, Channel 4 Dispatches broadcast an investigation into the growth of Christian fundamentalism in the UK. The programme, “In God’s Name” highlighted the political lobbying by pro-life groups behind changes to tighten abortion law in the Human Fertilisation Bill including work between their then key lobbyist, and the MP Nadine Dorries.

The programme highlighted the fears of some of their members based on the “great replacement” conspiracy theory of the rising power of Islam from the East, replacing Christianity in the West. And it also showed how the ADF from the U.S. was funding UK strategic litigation to challenge and change UK laws including the McClintock v Department of Constitutional Affairs [2008].

The work of Sian Norris today, highlights why this U.S. election result is likely to see more of all of that over here. As we see the rights’ environment move towards an ever greater focus on protection and protectionism, I make the case why this is all relevant for the education sector in England, and we must far better train and support school staff in practice, to manage competing sources of authority, interests and rights.

Child rights supported by parent power

Over the last ten years, since I began working in this field, there has been a noticeable shift in public discourse in the UK parliament and media around child rights, shaping public policy. It is visible in the established print, radio and TV media. In social media. It is in the language used, the funding available, and the parliamentary space and time taken up by new stakeholder groups and individuals involved, to the detriment of crowding out more moderate or established voices. On the one hand it is a greater pluralism and democracy in action. On the other, where its organisation is orchestrated, are the aims and drivers transparent in the public interest?

When it comes to parents, those behind many seemingly grassroots small p “Parent Power” groups are opaque, often with large well funded, often U.S. organisations behind them.

The challenges for established academics and think tanks in this closed and crowded policy advisory space is that these new arrivals, astroturf ‘grassroots’ and offshoots from existing groups bring with them loud voices who co-opt the language of child rights, who are adept in policy and media spaces that were previously given to expert and evidence-based child rights academics.

Emerging voices are given authority by a very narrow group of parliamentarians, and are lent support by institutional capture through an increasing number of individuals embedded from industry or with conservative religious views hired into positions of authority. There is a shift in the weight given to views and opinions compared with facts and research, and cherry picked evidence to inform institutional positions and consultations, as a result.

The new players bring no history of being interested in children’s rights —in fact, many act in opposition to equality rights, or access to information, and appear more interested in control of children than universal human rights and fundamental freedoms. The shift of a balance in discussion on child rights to child protection above all else is not only in the UK but mainland Europe, the U.S. and Australia which is the latest to plan a ban on under 16s access to social media.

Whose interests do these people serve really, while packaged in the language of child rights?

Taking back parent and teacher control

Parallel arguments made in the public sphere have grown: the first on why authority must be taken away from parents and teachers and returned to the State over fears of loss of parental control of children’s access to information and children’s ‘safety’ including calls for state-imposed bans on mobile phones for children or enforced parental surveillance control tools. And at the same time, parents want fewer state interventions. Arguments include that, “over the last few years the State has been assuming ever greater control, usurping the rights of parents over their children.”

The political football of the day seems to move regularly from ‘ban mobile phones in schools‘ or at all, to the content of classroom materials, ‘give parents a right to withdraw children from access to sex ed and relationships teaching’ (RSE not biology). But perhaps more important even than the substance, is that the essence of what the Brexit vote tapped into, a sense that BigTech and the State, ‘others’, interfere with everyday life in ways from which people want to ‘take back control’ is not going away.

Opening up classroom content opens a can of worms

The challenge for teachers can be in their schools every day. Parents have a right to request that their child is withdrawn from sex education, but not from relationships education. In 2023, the DfE published refreshed guidance saying, “parents should be able to see what their children are being taught in RSHE lessons. Schools must share teaching materials with parents.”

I often argue that there is too little transparency and parental control over what is taught and how, and that parents should be able to see what is being taught and its sources but not with regard to RSE, but when it comes to edTech. We need a more open classroom when it comes to content from companies of all kinds.

But this means also addressing how far the rights of parents and the rights of the child complement or compete with one another, when it comes to Article 26 (3)(b) of the UDHR on education, “Parents have a prior right to choose the kind of education that shall be given to their children.” And how does this affect teachers agency and authority?

These clashes are starting to overlap in a troubling lack of ethical oversight in intrusive national pupil data gathering exercises in England and in Scotland both of which have left parents furious, to the data grab planned from GPs in Wales. Complaints will without a doubt become louder and more widespread, and public trust lost.

When interests are contested and not aligned, who decides what is in a child’s best interests for their protection in a classroom?

When does the public interest kick in as well as individual interests in the public good from having children attend school, present to health services, and how are collective losses taken into account?

In the law today, responsibility for fulfilling a child’s right to education rests with parents, not schools. So what happens when decisions by schools interfere with parents’ views? When I think about children in the context of AI, automated decisions and design in edTech shaping child development, I think about child protection from strangers engineering a child’s development in closed systems. It matters to protect a child from an unknown and unlimited number of persons interfering with who they will become.

But even the most basic child protections are missing in the edtech environment today without any public sector standards or oversight. I might object to the school about a product. My child might have a right to object in data protection law. But in practice, objection is impossible to exercise.

The friction this creates is going to grow and there is no good way to deal with it right now. Because the education sector is being opened up to a wider range of commercial, outside parties, it is also being opened up to the risks and challenges that brings. It can no longer be something put in the box marked ‘too difficult’ but needs attention.

The backlash will only grow if the sense of ‘overreach’ continues.

Built-in political and cultural values

The values coming over here from the U.S. are not only coming through parents’ grassroots groups, the religious right, or anti-LGBTQ voices in the media of all kinds, but are coming in directly to the classroom embedded into edTech products. The values underpinning AI or any other technology used in the classroom are opaque because the people behind the product are usually hidden. We cannot therefore separate the products from their designers’ politics. If those products are primarily U.S. made, then it is unsurprising if the values from their education and their political systems are those embedded into their pedagogy. Many of which seem less about the UNCRC art. 29 aims of education, and far more about the purposes of education centred on creating human capital via, “an emphasis on the knowledge economy that can reduce both persons and education to economic actors and be detrimental to wider social and ethical goals. ”

This is nothing new.

In 2013, Michael Gove gave a keynote speech in the U.S. to the National Summit for Education Reform, an organisation set up by Governor Jeb Bush. He talked about edTech too, and the knowledge economy of education and needing “every pair of hands” to “rebuild our economies”. Aside from his normalisation of the acceptance of ‘badging’ children in the classroom with failure (32:15) (“rankings of the students in the test were posted with the students name with colour codes… and some of the lower performers would wear a sticker on a ribbon with the colour code of their performance“) he also shared his view with echoes of the “great replacement theory” that, “the 20th century may be the last American Century we face the fact that the West and the values that we associate with it, liberalism, openness, decency, democracy, the rule of law, risks being eclipsed by a Rising Sun from the East.” We could well ask, whose flavour of ‘liberalism’ is that?

The fight for or against a progressive future

Today, anti-foreign, anti-abortion, and pro-natalist pro-conservative Christian values all meet in a Venn diagram in organisations pushing to undermine classically liberal aspects of teaching in England’s education system. And before this sounds a bit extreme, consider how these conspiracy theories and polarised views have been normalised. Listen (25:00) to the end of discussion on “the nation state” at the 2023 NatCon UK Conference co-badged with the Edmund Burke Foundation. Becoming a parent is followed by discussion on housing pressure *from migrants* as well as a more-than-slightly eugenic-themed discussion of longevity, and then in passing, AI. At the same event, fellow MP Miriam Cates claimed the UK’s low birthrate is the most pressing policy issue of the generation and is caused in part by “cultural Marxism” as reported by the Guardian. Orbán in Hungary in 2022, claimed he was fighting against “the great European population exchange … a suicidal attempt to replace the lack of European, Christian children with adults from other civilisations – migrants”.

These debates are inextricably linked in a fight for or against a progressive future. We have a Westminster Opposition now fighting for its own future and the ‘culture wars’ have been routinely part of its frontbenchers’ media discussions for some time. Much of it that is likely to continue to be played out in the education system, starting with the challenge to the Higher Education Freedom of Speech Act 2023, which always seemed to me more about the control of content on campus than its freedoms.

In today’s information society, Castells arguments that cultural battles for power are primarily fought in the media, where identity plays a critical role in influencing public policy and societal norms, where politics becomes theatre and, “citizens around the world react defensively, voting to prevent harm from the state in place of entrusting it with their will,” seem timely. (End of Millenium, p.383). Companies and vested interests have actual power, and elected leaders are left only with influence. This undermines the spirit of a democratic society.

The future of authority and competing interests

After the U.S. election result, that influence coming from across the Pond into UK public policy will not only find itself more motivated and more empowered, but likely, better funded.

Why all this matters for schools is that we are likely to see more of its polarised values-sets imported from the U.S. and there is no handbook for school governors nor staff of all backgrounds, to manage parents and the strong feelings it can all create. Nor does the sector understand the legal framework it needs to withstand it.

Having opened up classrooms to outside interests on classroom content, some families are pulling children out of school because of these fundamental disagreements with their values and the vehicles for their delivery—from the contents of teaching, to intrusive data surveys, and concerns over commercialisation and screen time of tech-based tools without proven beneficial outcomes. Whose best interests does the system serve and who decides whose interests come first when they are in conflict? How are these to be assessed and explained to parents and children, together with their rights?

How do teachers remain in authority where they are perceived as overstepping what parents reasonably expect, or where AI manages curriculum content and teachers cannot explain its assessment scoring or benchmarking profile of a pupil? What should the boundaries be especially as edTech blurs them between school and home, teachers and parents. We need to far better train and support educational staff in practice, to be prepared to manage competing sources of authority, and the emerging fight for interests and rights.

#caredata, care.data, confidentiality, engagement, NHS, NHS England

care.data programme questions remain unanswered – what should patients do now?

November 19, 2014 jenpersson

care.data programme questions remain unanswered [1] and opportunities to demonstrate better transparency have to date, been turned down.

For anyone interested in the care.data rollout, professionals, patients and public alike, it is worrying to see the continued secrecy which shrouds the programme. We’ve been told online (but most in the public will still not know) an initial rollout in 4 CCG areas is now planned [2], but at which GP practices remains unclear.

On October 12th I asked that the care.data programme board minutes should be made public. The request is still open.[3]

“They seem hell bent on going ahead. I know they listened, but what did they hear?”

Questions asked by hundreds of people at multiple listening events remain unpublished and unanswered. Risks need resolved.

It is ironic that for a programme whose stated aim is to gather patient information in order to answer open questions about care, it is so unwilling to give information back to answer the questions we, the ‘data subjects’ have about the programme.

I believe it is important to ensure that the questions are transparent, criticisms addressed and clarified, open issues solved and questions answered ahead of the pathfinder rollout to ensure the greatest success of the programme.

If the programme proceeds on an opt out basis, the risk is increased that it will not meet Data Protection regulation[4], which requires informed use of personal data. This puts GPs at risk. [5]

All the people who made the effort to attend these events for the benefit of the programme and the public good deserve answers. This would minimise the risks the public raised, which remain unresolved.

It is also important for maintaining trust in the integrity and value of user participation and engagement at other NHS events, and in this programme in particular.

Public and Transparent Feedback was Promised

I wrote to Mr. Tim Kelsey, Director, at the Patients and Information Directorate, NHS England today to ask, once again, for the release of public feedback.

Now two months ago, when I spoke with him after the NHS AGM in London on September 18th about care.data, the public questions have still not been put into the public domain.

He agreed that the raw feedback from all the care.data listening events, which included all the open questions asked by participants, would be published, “Shortly.”

This feedback includes questions from the NHS Open Days on June 17th (4 locations), the stand-alone care.data events since, and those from the care.data advisory sessions hosted in Peterborough and Coin Street, London [6].

NHS England claims there have been hundreds of events. The website says some took place in my county, though I haven’t heard of any and neither has my CCG. Those of which I am aware and six attended, all generated a huge number of participant questions on paper, post-its and electronically, which participants were told would be published and answered, including put on the Open Day website ‘later in the summer'[7]:

“Feedback from this session is being incorporated into the overall report from the care.data listening phase which will be published later in the summer and linked to from this site.”

This is still to happen, and now nearing the end of November, is somewhat overdue.

My own questions at four events were on process and I believe it is important to get these clarified BEFORE the pathfinder:

How will you communicate with Gillick competent children [8], whose records may contain information about which their parents are not aware? [note also RCGP online roadmap p.15][9]
How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
When things change in scope or use, how will we be informed of changing plans for use or users, on an ongoing basis? [Data protection principle 2] [10]
For any future changes, how will we be given the choice to change our opt out or opt in? Consent is not a one-time agreement but needs managed on a continual, rolling basis – how will this be achieved?

Campaigners have also raised remaining, unresolved issues.

Key legal questions remain, including on Opt Out

I am starting to become concerned that the opt out is STILL not on a statutory footing. Will the Secretary of State make good his verbal agreement in law?

What legal changes will be made that back up the verbal guarantees given since February? If none are forthcoming, then were the statements made to Parliament untrue? [11]

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

I am yet to see this legal change and to date, the only publicly stated choice is only for identifiable data [12], not all data, as stated by the Minister.

So too the promised extra governance on a legal basis has not yet happened.

It is worth a note that although the Health and Social Care Act 2012 may have steamrollered the legal position of the patient and GP, and that confidentiality no longer comes first, informed consent even if assumed, is still in other circumstances to be obtained fairly:

“Consent obtained under duress or on the basis of misleading information does not adequately satisfy the condition for processing.” [ICO]

Should this principle not also apply even if GPs are legally obliged to release data without patient consent? [I feel that needs more discussion, so will write about consent in my next post.]

There is much made of ‘new legal protection’ of our data but in fact it is impossible to see it provides any such thing, and yes, I have read it. The Care Act 2014 did not get amended with any binding or truly clear provisions to make data more confidential or secure.

Concerns of many people centre on commercial use, and re-use of data, and these are not addressed by the loose terms for the benefit of adult health and social care’ or the ‘promotion of health’. [part 4 p.120] Data sold all year may have met this criteria, but is this how we expect our health records to be used without our express permission?

“We will use Mosiac, appended to the ICD10 code diagnoses, to create national Mosaic profiles. These estimates and propensities will be sold to public and commercial organisations to enable them to target resources more effectively and efficiently…Other data characteristics that are also linked to Mosiac can then be used to understand broader lifestyle characteristics of those most at risk to ensure that messages and communications are appropriate and well targeted.” [July register]

“Question from Leicester: “Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.”[13]

So I hope it is clear, that these concerns are not only mine, but remain unanswered for the broader participants of listening events, gathered throughout the last year.

Questions from others

I’m publishing here the filtered and NHS England written, summary response of the 26th June event [14], I received as an attendee. (40 people, of whom ca 10 NHS England and HSCIC staff).

I disagreed with one of the statements made at our table at the meeting, and pointed out it was not factual. History as I understand, and has been stated by HSCIC in FOIs, will not be deleted. Yet this was allowed to be included in the notes sent to all:

“communicate that identifiable information can be deleted.”

The workshop was about how to access ‘hard-to-reach’ groups, so focused on communications methods. You will see that many statements are about how to market the programme, and do not clarify questions of substance, although many were asked on the day about scope definition, and future data changes.

Questions have not yet been addressed, such as Gillick, on children in care, young offenders, the forces, avoiding ‘propaganda-ish’ sounding and bias in the materials, to ensure the ‘adequate requirements’ for data processing.

You can see from this, that although the listening events may be deemed to have been a success, the answering part is still missing.

How are NHS England measuring success? What does good look like? I guarantee from a public perspective, it’s not there yet.

Long term benefit must not be harmed in the rush for a pilot tick-box

Since the programme is heralded as so vital for the NHS, I believe we should not be making the best of a bad job, but shaping process, security and communications to be world class, worthy of our NHS.[15]

We also need to see a long-term cost benefit plan – if we don’t know how some of these future processes are to be managed, how will we know what they will cost, and are they worth it?

The project should not aim for a quick and dirty pilot rollout. Perhaps there is a need to tick the ‘on time’ box for an NHS England target or meet a job description appraisal, as I would have had when I was responsible for project implementations in my past commercial industry role?

As it stands it is not NHS England/DoH who has the most to lose if this goes ahead as is. They must look at the big picture and accept their responsibility for this project, decide not to rush it and not expect the public and GPs to carry its risk.

At the weekend, in a speech about TTIP I heard the phrase, it’s “a classic case of socialising the risk and privatising the profit.”

So too it feels for me on care.data. NHS England wants all the benefit of our information, including from its sale, but it is we, individual patients and GPs who will be harmed if its security, commercial use [16], or everyday trust & confidentiality are compromised.

The Department of Health must look beyond party political aims pre-election. This is for the good of the NHS, which belongs to us all.

We must see open questions on process and content openly answered, for professionals and public alike.

Only then, can we trust that the infrastructure and promises made behind the scenes have set the foundation for this scheme to be worthy of our most intimate and confidential data.[17]

What can Patients do now?

“The policy and practical answers we need to ensure success, will not fit on a flyer or SMS.”

I have spoken with some of my fellow attendees since these events, including for example Stan Burridge, the Research Lead on Service User Involvement at Pathway London. (A charity providing healthcare to the homeless and which works with others on policy and best-practice approach sharing. Their recent work on dentistry outreach achieved a 0% no-show rate – getting the vital care needed for their clients and saving ££ for NHS dentist provision.)

His comments are a good summary of what has happened since:

“In the events, opinions could be expressed, questions asked, and I was made to feel they were valid questions, but they’re doing very little to answer them so that it makes a difference.

“I feel I was engaged with the process, but it’s doing nothing for the people on the margins.

“They should be given an informed choice to opt in, an uninformed choice not to opt out is not the same.

It is unclear what patients can now do, to get the answers we have asked for. We want to make a positive difference to make the project better.

The listening events seem to have been a one way process, and participation for PR purposes, rather than real engagement. The policy and practical answers we need to ensure success, will not fit on a flyer or SMS. They can’t be communicated as part of the pilot rollout. We need them published, addressed and ironed out up front.

Stan summed up exactly what I feel and what I have heard from many others: