The ICO’s new guidance published this week will “help organisations to understand the definition of transparency and assess appropriate levels of transparency, as well as providing practical steps to developing effective transparency information.”

Read the full report here

A fascinating academic paper by Paraskevas Vezyridis of Nottingham University investigates in forensic detail media coverage of the ill-fated care.data programme and how the ever-shifting and evolving narrative influenced public perceptions that led to its eventual cancellation and thousands of people opting out.

While those masterminding the project had a vision of “transforming the NHS, saving lives, and growing the economy” they failed to take into account “other realities and concerns that mattered for certain patient and professional groups of citizens... These included data ownership and commercialisation, public engagement and informed consent, commitment and leadership, techno-economic feasibility, or NHS privatisation agendas.

Ultimately, false dichotomies and antagonistic visions of function and form kept the controversy alive, sealing its fate as worried NHS patients were opting out in substantial numbers.”

Free access to the paper is available here until until 29/5/24   

Research Data Scotland (RDS) has published its first Highlights and Impact review

The long history of administrative data analysis in Scotland means that RDS is “in the unique position of accelerating change to transform how researchers and other users can access and use routinely collected data. The Scottish Government’s important investment in creating and establishing RDS mirrors the wider UK Government’s ambitions to use data to bring benefits to all parts of health and social care – from patients and care users to staff on the frontline and pioneers driving the most cutting-edge research.”

(See also, use MY data’s 2023 Education Session, “Scottish Social Care Data” with Dr Elizabeth Lemmon of Edinburgh University)