July 12, 2017

expert reaction to Government’s response to the Caldicott Review on patient data

The government has published their response to the public consultation on the National Data Guardian for Health and Care’s (NDG) and Care Quality Commission’s (CQC) data security reviews.

Prof Sir Robert Lechler, President of the Academy of Medical Sciences (AMS), said:

“Building transparency and trust around data sharing is essential if we are to ensure that patient data can be used to further improve health and care. We welcome the measures towards establishing a robust governance system for sharing patient data announced by the Government today and look forward further details of how they will be implemented.

“The Academy is committed to continue working with the Government and others to communicate the significant benefits from sharing health data; to support patients in making an informed choice about sharing personal data; and to create an understanding of where, and why, healthcare data might be used.”

Ms Nicola Perrin, Head of Understanding Patient Data, said:

“We have to make better use of patient data to improve health and care for us all.  But everyone must have confidence that data is appropriately collected, stored and accessed. The Government’s response to the Caldicott review provides a package of measures that should help provide reassurance that privacy will be protected: stronger sanctions for misuse of data, a statutory role for the National Data Guardian and a commitment to a new national opt-out.

“Today’s announcement is just the starting gun, now the hard work on delivering an opt-out can begin. We look forward to learning more about the details of implementation but it is helpful to see a clear timetable for change. This must include time for full conversation with the public, patients and healthcare professionals about responsible uses of data. Everyone should be able to find out about how patient data is used and why, and we welcome the Government’s commitment to transparency.”

Ms Aisling Burnand, Chief Executive of the Association of Medical Research Charities (AMRC), said:

“Tremendous and important opportunities can be realised through the responsible use of patient data for advancing medical research and in improving care for patients.

“Health information enables researchers to transform and save lives by identifying the causes of diseases and ill-health and developing new treatments. Joining up patient data across the NHS can deliver safer and more effective care and services for patients.

“The failure to record, link and share data in the NHS is compromising the care and safety of today’s patients and our ability to conduct world-class research. Progress on creating a truly digital and 21st century NHS has been far too slow and patient care and research has suffered as a result of this.

“Public confidence and trust in the system to responsibly manage patient data is key, and we welcome the Government’s focus on security and informed choice in its response to the National Data Guardian’s review. Government must now take action to deliver on these commitments and the implementation plan it has set out. Crucially, further delays must be avoided as they will only serve to harm the care of patients.

“Whilst there will be complexities and challenges in making use of patient data a reality, by working with technology and engaging stakeholders we believe these complexities can be managed by Government and overcome.”

*Response available here: http://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Lords/2017-07-12/HLWS41/

Declared interests

Prof Sir Robert Lechler: No conflicts of interest to declare

Ms Nicola Perrin: Is Head of Understanding Patient Data, which receives funding from Wellcome, the MRC, Department of Health, ESRC, and Public Health England. Nicola is also on the new advisory group for the national opt-out implementation programme that is mentioned in the report.

Ms Aisling Burnand: No conflicts of interest to declare