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