National Data Guardian - Consultation response

(Published to the use MY data site on 2019-07-11)

National Data Guardian - Consultation response - Response to the comments and feedback on the NDG proposed work priorities

The National Data Guardian for Health and Care (NDG) has published the response to the consultation on proposed work priorities.

In response to the consultation feedback the NDG has refined plans and will be pursuing three refocussed priorities. These are:

  • Supporting public understanding and knowledge
  • Encouraging information sharing for individual care
  • Safeguarding a confidential health and care system

Addressing the plan to encourage information sharing for individual care, the response states:

  • We will continue to support the work to develop a framework to realise the benefits for patients and the NHS where health and care data is being used to underpin innovation. This will come under our priority: Supporting public understanding and knowledge
  • We will address respondents calls for the NDG to support the use of data in innovation which can improve care. This will now come under the priority Supporting public understanding and knowledge.
  • We will examine what additional public engagement would be most useful on the subject of the benefits from the use of health and care data. This will now be addressed as a new area of work under the priority: Supporting public understanding and knowledge.
  • We will amend our priority for Safeguarding a confidential health and care system to reference work looking at the linking of health and care data with other types of information.

The full response is here .

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"This work uses data provided by patients and collected by the NHS as part of their care and support"

The patient data citation was conceived and developed by the patients and carers in the use MY data patient movement. It has been widely adopted by data and research organisations, and recommended for adoption by the major research funders in the UK.

About use MY data

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

 

Our vision

Our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously. 

 

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