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
