The report NHS data Maximising its impact on the health and wealth of the United Kingdom was published on 5 February.
It acknowledges that Citizens have not been involved in setting the rules & principles by which decisions about data use are made and pushes for this to change.
The report has a section Public opinion and engagement. For the report, a series of interviews were conducted. Patients, the public and health care professionals were not consulted. The report addresses this by saying:
Interviewees included representatives from government, the NHS, academia, industry (technology and life sciences), research institutions, charities and data privacy organisations. We have not consulted the public or healthcare professionals for the purposes of this paper, as we chose to focus on experts in the data policy and governance space. Part of the rationale of the paper is to understand which issues should be explored with the public and how to do so.
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Please use the patient data citation:
"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.
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 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.