care.dataDeveloping and sharing data in health and social care

Eve Roodhouse, Programme Director

What is care.data?

• care.data is the plan to join up patient information to improve health

outcomes for all

• By joining up GP information with hospital information we will be

able to:

– Map diseases more quickly

– Understand patients’ journeys through the health system

– See the outcomes of their treatments and address variations in

care across the country

– Improve the quality of care by monitoring adherence to national

treatment guidelines

– Plan where investment and changes are needed in NHS

services

• If anyone decides to opt out it won’t affect the care and treatment

they receive

Our listening phase

• In February 2014 NHS England agreed to listen to and work with professionals and patients to get their feedback and reconsider how to implement care.data.

• To help us understand the views and concerns of professionals, patients, and the public last year we met with almost 3,000 people across over 145 local and regional meetings and events.

• This included patients, members of the public, GPs, practice managers, and patient groups

• We actively engaged with Healthwatch England, BMA, RCGP, Charities, the research community and critical parties at regular intervals.

• We listened to their concerns about care.data and converted them into an action plan.

What we heard

Lack of clarity on

the benefits of

care.data

What about the

communications

with patients on

their right to opt

out?

What about

support for GPs

to inform patient’s

about care.data?

Who will have

access to information

and how will

information be used?

Possible risks

of disclosure

of medical

records.

Confusion about

how this differs

from other NHS

information

collection.

Read the full summary of the listening phase and action plan here:

http://www.england.nhs.uk/wp-content/uploads/2015/01/care-data-presentation.pdf

How we responded

Our key response was to establish pathfinders - we are:

• working with CCGs in Leeds North, Leeds West and Leeds South

and East, Somerset, West Hampshire, and Blackburn with Darwen,

and, through them, over 100 GP practices (and counting).

• developing communication materials and approaches with GPs and

patients to explain care.data.

• planning to send a letter to every patient in each pathfinder GP

practice, explaining care.data and their right to opt-out.

• testing other methods - such as email and texts.

• the pathfinder stage will be scrutinised by the Independent

Information Governance Oversight Panel, chaired by Dame Fiona

Caldicott.

Our approach to communication

• Our overall aim – ensure all citizens are supported to make an

informed choice about sharing their data

• Working with pathfinders, central government, and national

stakeholders

• Working with voluntary sector partners to understand the needs of

different groups and how best to meet them

• Resourcing partners to support community engagement and targeted

communication:

– Local Healthwatch in pathfinder areas

– Advice and assurance on accessible materials and telephone helpline

– NHS England’s Voluntary Sector Strategic Partner Programme to help

reach specific groups, e.g. faith groups, carers, BME groups, Age UK

branches

• Community engagement toolkit to support local face to face

communication via networks and meetings, complementing ‘broadcast’

communication

6

What will success look like?

• The National Data Guardian advises Secretary of State that she is

satisfied with the proposals and safeguards – allowing data

extraction to proceed.

– The programme will provide evidence to the National Data Guardian to

support this including the outcome of research to be conducted by Ipsos

MORI

• Package of communications materials and tools endorsed by GPs

and practice managers for the next stage of roll out

• There is a good understanding of the effort required by CCGs, GPs

and Practice Managers to support care.data

• The technical solution has worked as planned with no issues

requiring resolution before the next stage(s) of roll out