The duty of trust and transparency should be at the heart of data-driven innovation as efforts in this area accelerate in the public sector, according to National Data Guardian (NDG) Nicola Byrne.
Reflecting on the current craze for data and technological advancements, Byrne raised concerns about the risk of losing sight of key principles that ensure advancements are balanced against risk and harm to the people whose data are used to propel these advances.
âAs the dynamics of data-driven technology develop rapidly and the opportunities for data binding evolve across government and society, it is critical that those seeking to harness the power of data do both. with optimism and caution – never losing sight of why the duty of trust is so important in health and care, âByrne said in a blog post.
Professionals and the public both want to be “informed, involved and understand the choices people have,” Byrne said, adding that failure to meet these conditions leads to issues such as backlog and resetting of medicine data. general for planning and research. program.
She stressed the importance of ensuring transparency and the duty of trust, citing one of the most recent Caldicott principles of information governance for patient identifiable data introduced in December 2020 by the first NDG, Fiona Caldicott , died in February 2021.
Caldicott’s eighth principle, which states that steps must be taken to ensure that patients are informed of how their confidential information is used, is “well timed,” Byrne said, and reinforces the advice she gave to government and other organizations regarding data usage plans.
Speaking more specifically of his response to the government’s draft data strategy for health and care, Byrne stressed the need to be open with people about who might be able to access data about them. and why, and to use clear and unambiguous language to do so.
One of the key priorities of the strategy is to optimize data requests and data sharing. To this end, the idea is to collect the most important information from patients and allow them to be “widely shared and used multiple times”.
On the other hand, concerns have been expressed about how sensitive data is used in the healthcare system. The NHS has worked with vendors Microsoft, Palantir and Google since the emergence of the pandemic to build the Covid-19 data store, which handles requests for data. But the work has sparked controversy, especially among privacy activists.
Given recent advancements and future plans regarding how patient data is used, Byrne emphasized the need to recognize the risks as well as sell the benefits of using confidential information.
âPeople know that generally there are risks associated with the use of data, so they should be addressed for any specific use and context, in addition to saying what is being done to mitigate them,â Byrne said.
She also commented on the need to follow these principles in other areas related to health and care. She advised the government on the Police, Crime, Sentencing and Courts Bill, about which she said she had “significant concerns”.
The bill places an obligation on clinic commissioning groups to disclose information to police and other authorities – and they can do so without breaching any duty of confidentiality.
“While it is important to combat serious violence, it is essential that the risks and damage that this new obligation poses to patient confidentiality, and therefore to public confidence, are taken into account and addressed”, Byrne said.
The national data custodian added that people should entrust their private data to health and care professionals or the police, regardless of how it will be used. Conversely, professionals must be confident that the ways in which data is used will not impact care or their ethical duties to the public.
Failure to adhere to these principles or use the data in unexpected ways could “significantly undermine” the confidence of the public and professionals, Byrne said.
Negative consequences could include patients who do not seek treatment or who provide partial or false information. This, in turn, would lead to incomplete and inadequate care records, which would be detrimental to system-wide innovation, planning and research and would also impact the quality and safety of care. individuals, she said.
Byrne concluded: âDecisions about the use of data require not only expert data protection knowledge of what is lawful, but also practical and professional wisdom and experience to consider what would be ethical and fair, balancing the potential benefits with the prevention of future harm. “