The December edition of the Talk Evidence podcast discusses the complexities of seeking consent from patients who are part of large data sets, and some new research to help patients living with diabetes in places without certain power supplies. First patient consent and data - in the UK, two stories that have made the public worry about the use of their health data. Firstly the news that UK biobank, who hold a lot of genomic and health data, allowed research by an insurance company, and second that the NHS has entered a contract with Palentir to do analysis on NHS data. Natalie Banner, director of ethics at Genomics England has been thinking hard about putting patients at the centre of decision making about their data, and explains why she thinks a sole reliance on a consent model falls short. Next, uncertain power supplies, such as in conflict or disaster zones, means uncertain refrigeration. Hard enough for most people to survive, but if you need to keep your insulin cold, it can be lifethreatening. However a new cochrane review has found good news about the thermostability of insulin at room temperature. We ask Phillipa Boulle, MSF Intersectional NCD Working Group Leader and Cyrine Farhat,is a global diabetes advocate based in Lebanon, how this will affect care for patients around the world. Reading list Thermal stability and storage of human insulin Outline 00:06 introduction and overview 00:24 the challenge of seeking consent in big data sets 01:34 understanding consent issues in large datasets 01:52 the role of participant panels in data accountability 02:44 the complexity of public attitudes towards data use 04:54 the importance of transparency and engagement in data use 05:48 the impact of external factors on public trust in data use 07:49 the ethical challenges of using health data 09:17 the limitations of consent in ethical discussions 09:23 the need for more conversation about group benefits, risks, and harms 10:41 the role of governance in ethical decision making 12:05 discussion on the interview with natalie banner 14:59 the challenge of managing chronic conditions in disaster zones 15:15 the impact of temperature and storage conditions on insulin 17:32 interview with Philippa Boulle from medecins sans frontieres 29:10 interview with Cyrine Farhat, a person living with diabetes in lebanon 36:18 discussion on the interviews and the challenges of diabetes management

Ask this episode

“What did the council decide on item 42?” — answered with the speaker and the moment.

Transcript

Related