Health and Data

Healthwatch Bristol, Bristol Clinical Commissioning Group (BCCG), South West and Central Commissioning Support Unit (SWCCSU) met on 26.10.16 to discuss the findings of the ‘Health and Data Report’ (part funded by Healthwatch Bristol and carried out by the Wellbeing Partnership C.I.C.) and more widely, public involvement in the development of technology and data sharing within health and social care services.

To read the report:

The findings of this local report are supported by research carried out by Healthwatch England. For more details, W:

It is recognised that projects including Connecting Care, the Digital Roadmap, and Personal Health Records will all form part of the Sustainability and Transformation Plans (STPs) and are all connected with each other and, therefore, any patient and public involvement would need to link into all the projects.

How will the public be involved in the development of health and data projects?

Connecting Care will be producing a public facing website. Connecting Care has requested input from Healthwatch in ensuring the website is accessible and useful to members of the public. Healthwatch has suggested that the questions generated at the launch event of the ‘Health and Data Report’ (included at the end of this meeting report) are considered when developing content for the website – perhaps as part of a Frequently Asked Questions page. Healthwatch will also support Healthwatch volunteers to be involved in the development of the website.

The Connecting Care Governance Boardand the Bristol, North Somerset and South Gloucestershire (BNSSG) Local Digital Road Map (LDR)does not currently have any patient or public involvement representation. BCCG will consider inviting a PPI representative onto the Board and/or to review how the public are involved in the development of Connecting Care. Healthwatch has been invited to complete interviews with the LDR about its development.

Linking to the Accessible Information Standard:Healthwatch has gathered feedback from people including those with a learning disability (W: and who are Deaf or have hearing loss (W: about the difficulties they experience accessing health and social care services. The NHS Accessible Information Standard (W: sets out the steps health and social care professionals should follow to identify and meet the access needs of all service users. Healthwatch encourages Connecting Care/ any projects recording and sharing patient data to ensure they enable the requirements of the AIS to be met. Currently information about a patient’s access needs is not shared by GPs on Connecting Care; if this was enabled, and encouraged, other services would be able to see a patient’s access/ support requirements.

Healthwatch will include data sharing and technology in health and social care services in its quarter four (January-March 2017) work plan alongside its work on the Accessible Information Standard.

Key themes in the Health and Data Report

The key themes in the report are:

Data sharing: Participants acknowledged that sharing a patient’s medical records between health and social care services and organisations had potential to improve people’s access to care, improve the quality of care received and reduce waiting times. Participants were, however, concerned about how the data was kept confidential.
Technology: participants felt that technological innovations had the potential to improve the care people receive, for example via health apps. Participants were, however, concerned that data stored on technological devices may not be secure and that devices such as smartphones and computers could be hacked.
Consultation and promotion: the overwhelming message in the feedback gathered was that people wanted to be more involved in the decisions being made about data sharing and the development of technology in health and social care. Participants felt strongly that current consultation and the current information about data sharing and technology was not accessible and as such, many people were unable to fully understand the current situation or what might be happening in the future. People wanted to be able to control and participate, in an accessible way, in their own time on how their data is shared and accessed.

Questions and ideas generated at the launch event for the Health Data Report:

Locally, Bristol needs to:

Inform people about their data and how it is used
Inform people about their rights around health and data
Inform people about summary care records (are they already being used?)
Clarify what data is held and where and who can access it.

An information sheet which answers the following questions could be produced and shared across Bristol:

Which services can access information about my health and health care?

Your GP can access [insert details]

A hospital in BNSSG can access [insert details]

Social services in BNSSG can access [insert details]

Mental health services in BNSSG can access [insert details]

Public health services in BNSSG can access [insert details]

Health and social care services outside of BNSSG can access [insert details]

Services outside England can access [insert details]

Services outside the UK can access [insert details]

Questions:

What secondary uses of my data have I consented to? (eg. research)
What is health data?
Where is my data stored?
Who holds my data?
What are the different schemes I can opt in and out of and what do they cover? (eg. Connecting Care is regional; Summary Care Records are national)
What does my consent cover? Do I give consent once or lots of time? Will I be kept up to date on how data sharing evolves and changes OR once I’ve given consent it that it even if technology develops new uses for my data?
In what situations will additional consent be sought to share my data?
How can I access my data?
What choices can I make around my data? (eg. can I opt into some uses and opt out of others?
If I want to talk to someone about my data and how it is used, how do I do this? Is there a telephone number to call?
How are people who lack capacity to make decisions about the sharing of their data supported to opt in or opt out?
How safe is my data? What are the risks of data sharing?
Who protects my data?
How are members of the public/ lay representatives involved in protecting my data?
What will the developments with genomic medicine mean for data sharing?
How does data sharing and digital technology fit in the Sustainability and Transformation Plans?

Further ideas and comments:

A data record could make it easier for GPs to refer people to other services (a consistent referral form which has standard data record information fields which could be automatically filled could be used).
A story of data could be created (information sheet): What’s already happened about data sharing? What’s the current situation? What’s next?
There needs to be a coordinated strategy for informing and involving people in decisions about data sharing. All providers, commissioners etc need to be “singing from the same hymn sheet”/ all providing the same information about health data and how it is used and shared.
Information about how data is shared/ stored needs to be promoted via a range of communication channels (eg. Online, newspaper, posters in health services, letters, community groups)
Promotional information should be reviewed by members of the public/ members of the public should help create the promotional information (use existing patient and public involvement networks; provide training, support and payment for public contributors)

Additional information/ resources:

NHS Choices: Your health and care records
Bristol CCG: Connecting Care
NHS Digital: Summary Care Records:
A video showing how connecting care is helping patients at the homeless health centre and how data sharing could help more in the future. W:

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