HeRC’s patient forum helps shape the remit of the UK’s first National Data Guardian

H@PPI responds to the Department of Health’s invitation to define the role of the National Data Guardian for Health and Care.

Responding to the government’s open-consultation as a group with an interest in research using health data, a subgroup of the H@PPI Forum took the opportunity to comment on the role and functions of the National Data Guardian, Dame Fiona Caldicott.

After considering the report’s outlined proposals, Forum members indicated their strong support for the establishment of the National Data Guardian, noting where they believe further considerations and precautionary measures may be necessary. The Forum believe the National Data Guardian should be independent of central government, and should be able to provide advice to all organisations that hold health data which could be used to identify individuals, proposing that this should be an essential part of the role.

The ‘Consultation on the roles and functions of the National Data Guardian for Health and Care’ was published on the 17^th September 2015 by the Department of Health, open to responses from members of the public for three months.

Dr Lamiece Hassan, Patient and Public Involvement Research Officer at the Health eResearch Centre said “I am very pleased that the H@PPI Forum took the opportunity to respond on the role and functions of the National Data Guardian, which is central to government plans for ensuring responsible use of health and care data. This demonstrates the Forum’s commitment to participating in dialogues about trustworthy use of health data from a patient and public perspective”

The consultation sought feedback to identify the key principles and responsibilities of the National Data Guardian. Responses will inform the development of more detailed proposals to establish the National Data Guardian for health and social care on a statutory footing.

The Department of Health state “The National Data Guardian for health and social care will help to ensure that personal confidential data is held and used to support better outcomes from health and care services, at the same time providing confidence that there are thorough safeguards in place to protect personal confidential data.”

As outlined in the consultation on the roles and functions of the National Data Guardian, those who have a responsibility for commissioning and providing care need to have a strong, robust system in place for capturing, holding and managing data safely and securely. Data needs to be available to researchers to drive advances in health and save people’s lives. There is also a need to inform and build upon the public’s confidence in how health data about individuals is used and safeguarded.

Therefore the government has committed to informing the public, encouraging people to allow their data to be used for medical and research purposes, and inviting feedback. Policy should be agreed upon by a cross-section of people and is essential for the National Data Guardian.

The Department of Health are currently analysing the responses and the Caldicott Review of the publics’ feedback is due to be released imminently. H@PPI are looking forward to reading the published report.

ENDS

Notes for editors:

The Health eResearch Centre (HeRC) is delivering large scale, population wide health research by harnessing the power of information and technology.

Led by The University of Manchester and bringing together research excellence across the North of England (in partnership with the universities of Lancaster, Liverpool and York) the Health eResearch Centre is increasing the pace of progress in the UK’s health sector by turning under-used health information into new knowledge.

The Health eResearch Centre – People | Data | Methods

For more information please visit our website www.herc.ac.uk #datasaveslives

Enquiries:

Stephen Melia

Communications and Public Engagement Officer

Tel: 0161 306 7876

Mobile: 07757 310213

Email: stephen.melia@manchester.ac.uk