"GDPR Says Yes"

Think Local Act Personal (TLAP) has published a report entitled Data for people: Principles and priorities for the collection, storage, sharing and use of data around care and support. This sets out a range of ambitions, principles and concerns about data, as expressed by people who draw on care and support.

Most people want data to be shared so that they can “say it once” to those who are supporting them – but they want to have control over who sees what data. The report sets out the concerns voiced by people, with 15 principles for data sharing and six priority areas for action.

Concerns:

• Limited information about current data collection

• People’s experiences of their personal data being collected, stored, shared and used

• Information gleaned from the media about changes to data collection, storage, sharing and usage at national or local level

• Their aspirations for their future care and support, and their understandings of how data could support the delivery of improved care and support

• Concerns about the loss of control when their individual data is aggregated across communities for monitoring and planning, or across the wider population to inform research, development and policy-making.

Principles

1. Approaches to data should be co-produced with people who draw on care and support, and family and friend carers

2. The primary purpose of data in care and support must be to improve people’s lives, in line with established policy including the wellbeing principle

3. The data we collect must be used to drive equity and inclusion

4. The data collected around individuals’ care and support should relate to the things that matter to them

5. People who draw on care and support must define the outcomes against which care and support provision is assessed

6. Datasets on care and support must be inclusive of everyone who draws on care and support, of family and friend carers and of the range of different models of care.

7. Personal stories and statements and other qualitative data should be valued alongside quantitative data.

8. Data about individuals’ care and support belongs to them – people need choice and control over how their data is collected, used and shared, even when it is shared anonymously, and options to opt out of data sharing if they choose

9. Individuals’ data should not be sold for profit or used to generate revenue without their explicit consent

10. People should have access to their own data, in formats that are accessible and appropriate for them

11. Family and friend carers should be able to access data around the people to whom they provide care and support, where consent has been given and with appropriate safeguards

12. People should be able to verify and update their own data, using simple mechanisms

13. Data collection, storage, sharing and use should be regularly audited to ensure that systems and processes are of high quality, to eliminate any bias or inequity, and to ensure all protocols are being followed

14. Organisations using care and support data should be transparent in their activities and accountable for its use

15. People must have access to mechanisms for recourse if their data is mishandled, falsified, or shared inappropriately.

Priorities for action

1. Bringing all stakeholders with an interest in data around care and support together to identify areas of mutual interest and concern and any areas where aspirations or approaches may be in conflict, and to work towards resolutions.

2. Developing a standing mechanism at national level to support co-production of approaches to data, collection, storage, sharing and use and in monitoring the implementation of data policies. This should encompass approaches to individual level data; organisational/system data; and data to inform strategic planning.

3. Developing better metrics for assessing the impact of care and support interventions – starting with co-producing new outcome measures with people who draw on care and support.

4. Introducing a uniform approach to consent for care and support data, and communicating people’s rights clearly.

5. Establishing clear protocols for keeping individual data up to date, and around how data to inform strategic planning and commissioning can be kept current.

6. Negotiating workable compromises around data sharing that balance people’s right to privacy with the need to gather high-quality data to support service development, improvement and innovation.

This paper is about vulnerability, disability, and data-sharing across the essential service sectors. It has been written to help make it possible: • 

• for vulnerable or disabled consumers to disclose and share their circumstances and support needs with multiple organisations through one simple process • 

• for essential service organisations to transparently share information about consumer circumstances and needs between themselves and other relevant bodies • 

• and to use such data-sharing to prevent and minimise harm, disadvantage, loss, or exclusion among these consumers in emergency situations and everyday service use. 

An essential service is something that consumers cannot do without to live their everyday lives. These include financial, energy and water, phone and internet, postal and delivery services. There is currently a national policy debate about increased data-sharing among essential services. This debate is critical to millions of disabled and vulnerable consumers:

• who rely on multiple organisations to provide services that are literally essential or central to their ability to live and function on a daily basis  

• who live in complex circumstances, with extra support needs, or with additional requirements that essential services need to know about and take into account • 

• who do not – because of their situation - have the resources, energy, or time to disclose their circumstances or support needs to each essential service in their lives in turn • 

• who therefore do not receive essential services - in both emergency and everyday contexts – that are accessible, usable, beneficial, and optimal.

The paper sets out ten design principles: 

Principle 1: speak the same language

(define ‘data-sharing’, ‘disclosure’, ‘vulnerability’)

Principle 2: data-sharing needs data

(so avoid the known barriers to consumer disclosure)

Principle 3: this is not a technical project

(keep the focus on solving the human problem)

Principle 4: ‘actionable support needs’ are the key

(rather than higher-level flags alone)

Principle 5: consumers want to feel in control

(even if some decide to never exercise this)

Principle 6: consumer data-sharing portals must be accessible

(a key test of our values)

Principle 7: consumer data-sharing portals should lead to support

(accessible and timely)

Principle 8: organisations will use shared data differently

(transparency is therefore vital)

Principle 9: every organisation in a sharing network does not need to use the same lawful processing base under the Data Protection Act (2018) for recording and sharing data

Principle 10: meet current need, watch for future harm

(avoid unintended consequences)

The wishes, needs and priorities set out in TLAP's Data for People and the Money Advice Trust's Ten Principles have a striking amount in common.

The theme that gets the most coverage in both, with seven statements across the two sources, is that data should be focused on the person. 

This is followed by inclusion and accessibility (four statements), transparency and accountability (three statements) choice and control (three statements), and ethics (three statements).

Between them, the two sources also offer an additional five specific statements which stand alone.

Here's a full breakdown:

Person-centred data

Statements focusing on the fact that data is about people, and that has to remain at the centre of everything that is done with it.  As one participant in TLAP's research said, "Data has soul".

TLAP 1:  Approaches to data should be co-produced with people who draw on care and support, and family and friend carers.

TLAP 2:  The primary purpose of data in care and support must be to improve people’s lives, in line with established policy including the wellbeing principle.

TLAP 4:  The data collected around individuals’ care and support should relate to the things that matter to them.

TLAP 5:  People who draw on care and support must define the outcomes against which care and support provision is assessed.

MAT 3:  This is not a technical project (keep the focus on solving the human problem).

MAT 4:  ‘Actionable support needs’ are the key (rather than higher-level flags alone).

MAT 7:  Consumer data-sharing portals should lead to support (accessible and timely).

Inclusion and accessibility

Accessibility is an obvious theme given the needs of many of the people involved.  This theme also reflects the importance of aggregate data representing the whole population.

TLAP 3:  The data we collect must be used to drive equity and inclusion.

TLAP 6:  Datasets on care and support must be inclusive of everyone who draws on care and support, of family and friend carers and of the range of different models of care.

TLAP 10:  People should have access to their own data, in formats that are accessible and appropriate for them.

MAT 6:  Consumer data-sharing portals must be accessible (a key test of our values).

Transparency and accountability

TLAP 13:  Data collection, storage, sharing and use should be regularly audited to ensure that systems and processes are of high quality, to eliminate any bias or inequity, and to ensure all protocols are being followed.

TLAP 14:  Organisations using care and support data should be transparent in their activities and accountable for its use.

MAT 8:  Organisations will use shared data differently (transparency is therefore vital).

Choice and control

This theme covers what may be the most important issue to tackle: ownership. (See comments below.)

TLAP 8:  Data about individuals’ care and support belongs to them – people need choice and control over how their data is collected, used and shared, even when it is shared anonymously, and options to opt out of data sharing if they choose.

TLAP 12:  People should be able to verify and update their own data, using simple mechanisms.

MAT 5:  Consumers want to feel in control (even if some decide to never exercise this).

Ethics

TLAP 9:  Individuals’ data should not be sold for profit or used to generate revenue without their explicit consent.

TLAP 15:  People must have access to mechanisms for recourse if their data is mishandled, falsified, or shared inappropriately.

MAT 10:  Meet current need, watch for future harm (avoid unintended consequences).

(TLAP 13 also belongs here.)

Standalone statements

Narrative and qualitative data.  TLAP 7:  Personal stories and statements and other qualitative data should be valued alongside quantitative data.

Friend and family carers.  TLAP 11:  Family and friend carers should be able to access data around the people to whom they provide care and support, where consent has been given and with appropriate safeguards.

Vocabulary.  MAT 1:  speak the same language (define ‘data-sharing’, ‘disclosure’, ‘vulnerability’).

Willingness to share.  MAT 2:  data-sharing needs data (so avoid the known barriers to consumer disclosure).

Lawful basis.  MAT 9:  every organisation in a sharing network does not need to use the same lawful processing [basis] under the Data Protection Act (2018) for recording and sharing data.

Other observations

1. Despite the parallels, the most obvious difference between the two sources is context.  MAT's document is about information which originates with people, which they choose to share with institutions in order to get the service and support they need. TLAP's document is about health and care data, much (most?) of which originates with professionals - indeed, TLAP 7 is effectively a plea to professionals to pay attention to the information people want to share.

2. TLAP 7's emphasis on personal stories, narrative and other qualitative data is a well recognised issue within health and care.  I discuss this in more detail elsewhere on this site, particularly the frustrating lack of usage of existing resources such as About Me. Equally, there's a recognised imbalance between health and care in terms of structured and qualitative data; NHS data is more rigorously structured whereas care data can me more narrative.  Both are needed.

3. TLAP 11's reference to family and friend carers is an important point.  Current systems will capture formal appointeeships and powers of attorney, but are extremely poor at capturing the informal arrangements which are crucial to many people's lives.  Proxy arrangements take many forms, with different legal bases, powers and duties, but even these don't account for "You have my ongoing consent to talk to my daughter about my [gas account, prescriptions, benefits claim, whatever] "- which too often turns into a frustrated daughter on the phone to a contact centre, saying "You have my mum's permission to talk to me saved in your records...".  Any effort to tackle this will obviously need to take account of an informal proxy/representative overstepping the boundaries of what they've been asked to do on a person's behalf.

4. Two of the three examples of vocabulary in MAT 1 - disclosure and vulnerability - have a different meaning in health and social care speak -an extremely negative meaning which may generate a known obstacle to information sharing. We do need to ensure that terms are clearly understood and don't unwittingly convey a negative impression, particularly as the conversation extends across sectoral boundaries.

5. TLAP acknowledges need for data to cover all parts of the community including minorities, but also suggests some people from minoritised communities will want to opt out for fear of being identifiable.  This carries a serious risk of skewing the overall data and making minorities' needs and wishes even less visible.

6. TLAP document implies a belief that consent is required for all cases of data sharing. GDPR Art. 6 (e) and 9 (2) make it clear that this isn't always the case.  GDPR-compliant consent is simply too cumbersome for the urgent needs around health and care (or emergency services) data sharing - see PFD reports.  But TLAP's statement that "data sharing requires trust – that data will be shared safely and appropriately. At present, people have real concerns about how their data is being shared, which is leading to mistrust" (p10) is entirely valid and needs to be given due weight alongside the alternative lawful bases to consent.  

7. It would be interesting to know more about the "information gleaned from the media, or as a result of being involved in previous consultative or participative exercises, about changes to data collection, storage, sharing and usage at national or local level" (TLAP, p5).  The document references both Client Level Data (CLD) and the federated platform contract recently awarded to Palantir as causing concern, but there is also a more generic negtaive message about data sharing in the current debate, driven by alarmist agendas and conspiracy theories rather than by fact.  I'll pick this up under "Next Steps".

8. The theme of consent and choice raises the question of ownership of data. TLAP 8 makes it clear that people drawing on care and support see their data as belonging to them; there are several references throughout the report to people having the right to opt out (highlighted in green in this annotated copy). It's not always that straightforward, though - the National Data Guardian's report on barriers to information sharing states (p18) "… we query the use of the term 'own' data. From a legal perspective, an individual cannot 'own' individual data or their records”.  Again, I'll pick this up under "Consent or public task?" and "Next Steps".

[Items in italics still in mid-draft. To be continued...]

TLAP's six priorities for action are critical to the resolution of these issues.  In particular, the first two priorities - around co-production and the need for properly established mechanisms to ensure it - offer a much needed starting-point for a constructive, collaborative, inclusive approach to data sharing.  Priority 4 refers to "communicating people's rights clearly", which needs to include communication about situations where consent to share data is not required (see Consent or public task?)

An ongoing public engagement exercise commissioned by the DHSC and NHS England to build public trust and transparency around the use of data.

WhatWeNeed.Support is a spin-off from the programme of work which led to the development of the Experian Support Hub.  This work focused on making businesses more accessible to disabled and vulnerable consumers.

The Support Lists on the website were originally developed as a part of this work. The site was developed to share these Support Lists and allow people with lived experience of disability and vulnerability to improve them.

The aim of whatweneed.support is

• to describe the changes, reasonable adjustments, and support needs that disabled and vulnerable consumers want firms, businesses, and institutions to meet;

• to describe them in such a way that organisations are able to act on them straightaway.

For many people this can mean the difference between getting and not getting the outcomes they need. The website offers some powerful examples and case studies in its Lived Experience blog.

Help! is a support needs starter guide listing over 100 different types of support that disabled or vulnerable consumers may want an essential service to meet. The list is selective and non-exhaustive, and offers a starting-point

Healthwatch and a coalition of charities are running a campaign called Your Care Your Way to drive much needed improvements to the implementation of the Accessible Information Standard (AIS).

Your Care Your Way includes three particularly relevant recommendations:

• People's communication needs and preferences are part of their care records.

• Services have systems in place to share patients' communication needs.

• Services have access to a central database.

The AIS offers a particular opportunity, as people may want, need and expect their communication needs to be shared beyond health and social care. Whilst the AIS is only mandated for health and care providers, it invokes the Equality Act and the Public Sector Equality Duty, which have much wider applicability.

This could be co-ordinated with other sectors’ approaches such as the Experian Support Hub.

The following is published as a case study of the need for "Tell us Once" services. It's written by Dan Holloway.

Dan has also published a talk he recently gave entitled "What we talk about when we don't talk about mental health". It's a 28-minute read (or a 43-minute YouTube video), and in my opinion every one of those minutes is a minute well spent: this is the most honest, insightful and detailed account of why "Tell us Once" services are essential - and why it's equally essential that every organisation interacting with the public should respect and act on the information someone provides about their communication/reasonable adjustment needs.

I have bipolar disorder and ADHD. This means there are things I find very hard or impossible that others find inconvenient, or at worst, just don’t notice.

Two of these things are phone calls and task sequencing. This makes it almost impossible for me to access many essential services where the default communication is by telephone, or I have to use multi-factor authentication to access vital documents or account details.

Many people on the other end of an email or webchat, or in a store, simply don't understand. So I have to spend a huge amount of time explaining. Other people think they do understand because they find these things “a bit inconvenient.” And you can feel the judgement, of them thinking, sometimes saying “why can’t you just cope with it like everyone else does”.

Trying to interact with services that most people take for granted means having to make this kind of disclosure. Every time. That could be trying to access my GP or getting vaccinated; arranging delivery for something I’ve ordered online; trying to communicate with my electricity provider. And it’s not just the experience itself, which is often traumatising, reminding me of being bullied or denied access in the past; making me give intimate medical information just to do something many do without thinking.

As well as that, every time I do this I have to prepare myself in advance so I can cope with that trauma. I need to do research to find out how I can make arrangements to ask for something accessible. I have to run through the scripts in my head to deal with replies from people who don’t get it or don’t believe me. And afterwards I feel distressed and exhausted. Not “tired.” But unable to function. Sometimes for days. Every repeated

disclosure steals a week of my life doing this. 

And of course if I need to interact with two firms that week, one of them has to get ignored. So bills will go unpaid. Or I will buy something more expensive from a different firm. If something is broken, I don’t return it. And I never get to switch providers. This makes a huge financial impact. But it also means I miss out on doing the things other people get to do. The things that give their life meaning. Because I’m too busy preparing

for or recovering from another disclosure.