manchester report v3

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On behalf of the care.data Advisory Group

Care.data and the future of health data sharing (3): Report from the third care.data workshop in Manchester; 26th November 2014

Author Rachel Quinn; Chief Executive, One East Midlands (Regional Voices East Midlands and East of England) January 2015


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Foreword

As Chair of the care.data Advisory Group, I am pleased to send you the summary of the groups

third public discussion session about the work we are developing to inform and assure the

programme known as care.data.

As a group, we have been keen from the beginning to ensure we have discussions with all

stakeholders; including those involved in the implementation of such a system, those who see

particular risks or benefits for data linkage, or those who are just simply interested.

The NHS in England already has some of the best information and data systems in the world

and our hospital episode statistics (HES) system has been collecting information about every

hospital admission, nationwide, since the 1980s. However, we are currently missing information

for most of the care provided outside of hospital which means there is a gap in our knowledge.

For example, we would like to know the average time taken in every area of the country

between someone seeing their GP with bowel symptoms, to being diagnosed with colon cancer

at the hospital. In order to know this, we would need to link GP and hospital data together.

The intention of the care.data programme is that the NHS will know more about care being

provided to patients locally, and how well GP practices and hospitals are working together to

provide that care. The goal is to improve health care in local communities, but also to enable

research which will improve the health of everyone in the longer term.

The care.data Advisory Group is considering the questions and concerns being raised by all

stakeholders - patients, the public, health professionals, NHS staff, privacy experts and others -

and advising NHS England and the Health and Social Care Information Centre about what

should be the potential solutions or ideas for amendments to the care.data programme.

This summary builds on the findings of our previous meetings. The role of these events was to

ensure that the Advisory Group does not develop solutions in isolation but seeks wider reference and

input into our work. Our first session in Peterborough was an opportunity for the Advisory Group to say

this is what we think are the problems what do you think? The second event in London asked based

on the issues we know these are some of the broad approaches that might lead to a solution does

that makes sense? This event, in Manchester, was about saying these are some of the proposed

detailed solutions to some of the concerns how do you feel about this?

Together these reports help frame what we say back to both NHS England and to the Health

and Social Care Information Centre about how to address the concerns and issues of staff,

patients and members of the public.

Ciarn Devane

Chair, care.data Advisory Group

NHS England non-executive director


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Introduction

On the 26th November 2014 Regional Voices, on behalf of the care.data Advisory Group,

facilitated a meeting in Manchester. The meeting involved a large number of

stakeholders and partners across the voluntary, private and statutory sectors to discuss

issues and potential solutions relating to care.data. Following an introduction by Ciarn

Devane, Tim Kelsey (NHS England National Director for Patients and Information ) set

the scene with an overview of the care.data programme, which was followed by

questions and a facilitated discussion. This document, produced by Regional Voices, is

a record of that meeting. This and previous records can be found on our website at

www.regionalvoices.org or at http://www.caredata.public-i.tv/core/portal/home

[NB. All responses were provided by members of the care.data programme team unless

otherwise stated.]

Opening Presentation Key Points

Tim Kelsey provided an overview of care.data and progress to date. Tim identified three

reasons why care.data is important-

1) Supporting improvement in quality now by filling the gaps in our understanding

about what goes on in the NHS. For example, it is currently impossible to know

how many people in England are being treated with chemotherapy and to what

effect.

2) Plan services that are more appropriate to community needs: Care.data is

about improving services by better understanding them; tracking need, demand

and trends by factors such as locality and seasonal variation to ensure services

are delivered more effectively, efficiently and at point of need in the future.

3) To develop new medicines and treatments and to better understand which : It

is vitally important to know whether current NHS medicines and treatments offer

value to patients or have meaningful impact on them and without better data it is

impossible to identify this.

Tim stressed that confidentiality is the most important factor to the NHS but in a digital

age it is increasingly difficult to 100% guarantee the security of data. However all

appropriate steps are being taken to protect data and anyone who remains concerned

will still have the ability to opt out. However, there is real hope that people will be

reassured that the benefits of data sharing will considerably outweigh any risks involved.

MedConfidential confirmed that whatever happens to patient data needs to be


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consensual, transparent and secure. Progress is being made but the detail still needs to

be agreed.

On communication Tim acknowledged that previous information was not clear. Future

communications in the pathfinder and follow on stages will be clearer and simpler and

will clarify to patients that opt-out will not affect eligibility to access services in NHS.

Moving forward the programme recognises the need to support GPs under further

increased workload and to help them to find the best ways of implementing solutions to

the concerns raised. To help take things forward the decision has been made to

establish four pathfinder Clinical Commissioning Group (CCG) areas across the country

to take part in a pathfinder stage. The 4 pathfinders are:

Leeds (Three CCGs across Leeds Leeds North, Leeds West, Leeds South & East)

Blackburn with Darwen CCG

West Hampshire CCG

Somerset CCG

Each pathfinder will be tasked with learning from the concerns and identifying the best

ways to achieve successful implementation.

Finally, the care.data programme would like to assure all stakeholders that we will not be

proceeding with any kind of national rollout until the process and mechanism has been

refined and issues ironed out. Pathfinders will be an essential component of this.


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Questions

Q1 How will this data be played back to commissioners and providers to

improve local services?

This will develop but at present there is no means to provide commissioners with

comparison information from other areas with similar demographic profiles in order to

compare service outcomes. Exactly why this programme is important.

Q2 Some pathfinders still arent aware that this is happening what is the

position?

These are very new and each pathfinder is at different stages of development but all are

now underway and activity will increase over next two to three months. Individual GP

practices are now being approached to be involved. Not everyone will have been

approached or asked yet.

Q3 Are any other countries doing anything like care.data and are there plans to

share?

Tim confirmed that this does not happen to this extent in any other country, only on

smaller scales for example in Sweden. There is no road map therefore the pathfinder

stage is appropriate to ensure we get it right and to inform the international interest in

this process. There are no plans to share data internationally, and this would require

separate consent.

Q4 Multiple datasets are now being collected by various parts of the health

sector e.g. national diabetes audit with data available by GP practice level.

PHE also collect vast amounts of data and release tools for many specific

conditions. Can all data sources be somehow linked up?

There are lots of local data collection schemes but little consistency. Care.data leads

towards a more comprehensive system of data collection and comparability. There is

also lots of data that covers single conditions but little that allows analysis of multiple

conditions and their interaction.


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Q5 Regarding the process used to approve pathfinders; how can public be

sure that there is balance amongst the types of CCGs that have been

chosen, their attitude to care.data and the profiles of their populations?

The process was initially based on those CCGs that expressed an interest. However, an

independent panel was set up to select and those chosen reflect both urban and rural

populations and a range of views.

Q6 (Via Twitter) if someone opts out of care.data what info still leaves the

GP practice?

If you opt out then no identifiable data will leave the GP practice at all, except for direct

care purposes. Analysis will only take place, for example, on trends in the number of

people opting out. This opt out will eventually form part of government policy and will

need to be applied ultimately to other sources of data.

Q7 How will the sharing of data with social care services be dealt with in future?

Improved data should ultimately drive better integrated health and social care services.

At present the NHS number provides a common currency to enable this to happen but

as each step is taken further consent will be required and processes put in place.

However, rushing the process is also undesirable.

Q8 Data only goes so far what we have to ensure is that lifestyles and activity

changes as a result. Most people now want to access their own data why

cant data be provided on an opt-in?

Everything we know in NHS about opt-in systems is that they drive inequality of

outcomes. The NHS needs to know most about those people who are least likely to opt

in and an 'opt out' approach reflects that need.


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Discussions

Table discussions were focused around three main themes following the updates provided in the opening presentation:

Keeping information safe

Access and data use

The communications approach With reference to these themes, groups were asked to consider:

Are we moving in the right direction?

What still needs to be improved and how?

Is there anything still left unaddressed have we missed anything? Each table fed back their key issues for open discussion and for the benefit of the Advisory Group and the care.data programme team. Here is a summary of all comments:

Keeping information safe

Medical data has lots of identifiable details and individual information the fact they will need the whole postcode will have people asking the reasons why, it will worry patients

Data is a valuable commodity, so there will always be fears it wont be safe and will the rules change with different governments? Once data is out, it is out forever

It is vital to increase and enforce the statutory powers to protect this data.

What about companies that have two sides of business healthcare and insurance. Who will police their access and use?

Access and data use

Is data sufficiently detailed / of sufficient content to be fit for the purpose intended?

Is there an appetite from the public to push data upwards? Patients must have access to their own data more readily if it is to be shared

How large is the dataset, what coded aspects will be included?

Can we check for accuracy of the data that is being reported?

People think we share more info and data than we do; this feels ok - safeguarded, anonymised and confidential not shared for profit. The pause should ensure that all the safeguards are in place.

Staggered by what we dont know - had assumed we already collected this information as need to know demographics in other circumstances

All demographics of all characteristics counted including sexual orientation Useful soft data is most useful to analyse, e.g. stress about hospitals


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The communications approach

Communication and engagement must be in multiple formats and languages to cast the web widely

Is this linking into local and national hard to reach networks the programme should be using existing methods to achieve this.

Is this really engagement or just information dissemination?

Communications cant rely just on leaflets there needs to be face to face interaction to check that the information is making sense to them and include the benefits.

Data needs to be more two-way needs to be fed back to patients and they should be informed about how their data has been use to make a difference and improve services. Helps reinforce the benefits of participation.

It needs to be clearer that patients can opt in/out at any time

What about under 16s? Who decides for them?

It would help if the published literature cited the statutory legislation underpinning the initiative

Anything Else?

There is deep mistrust of the process and this needs to be overcome. Explanation is important, and more information is needed to be able to make an informed decision. It is unclear at the moment about where to go for this information and a range of different avenues is needed; more thought needs to go into this. The leaflets are too simplistic at the moment.

There are always people that will not trust it, but if enough support is gathered from a majority this will be important.

Newspapers are often full of stories of systems being hacked into, and this will create more fear.

Is NHS England trying to overcomplicate this by doing it nationally? Local or regional might help.

By ignoring integration at pathfinder stage, we risk flawed data studies with limited value in the longer term.


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Responses

In summing up members of the Advisory Group and care.data programme team offered

the following additional responses:

NHS England is committed to giving people access to their own data. Sharing data and

access to a persons own data must be aligned.

There is also a clear commitment to giving people proper transparency over how their

data is delivering benefit to others. NHS England recognises the need to ensure this

reinforcing feedback loop is built into the system.

Whats changed as a result of the pause in the implementation of care.data?

Tim responded to say that a lot has changed in the last 6 months. This includes

the development of the statutory framework via the Care Act which gives authority

to the Confidentiality Advisory Group (independent of the HSCIC and care.data)

which can now police access to and the uses of data.

The Government has appointed a national Data Guardian (Dame Fiona Caldicott)

with the role of patients champion on security of personal medical information.

HSCIC is now committed to a code of practice that requires transparency about

the organisations that are given access to the data and for what purpose. They

may also be subject to independent audit.

The Care Act now includes sanctions for those who misuse data but as yet there

are still aspirations to ensure that misuse can be criminally prosecutable and

attract custodial sentences. This is supported by the programme team.

Ciaran reflected that during his role on the Advisory Group the process has

become more about co-production with more voices involved. The project is also

now better resourced which is making a difference. There is now a national

realisation that this programme itself is a pathfinder for the future of other data

sharing we now know how important it is that we get this right.


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Regional Voices would like to thank all participants for giving up a Wednesday

evening to participate in this discussion. These notes dont capture everything,

but hopefully you feel it represents the issues and tone of the conversation well.

During the evening we also stimulated a large debate on social media via Twitter

using the programme hashtag #caredata. To view the events Twitter dialogue

visit our Storify at:

https://storify.com/bethjp/advisory-group-workshop-26-11-2o14-caredata

For more information about care.data or to get involved please visit the NHS

Choices website at www.nhs.uk/caredata

For more information about the content of this report please contact:

Rachel Quinn Bev Taylor

One East Midlands Regional Voices

0115 934 8471 07769 168388

[email protected] [email protected]

For more information about the work of Regional Voices please visit our

website at www.regionalvoices.org

manchester report v3

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