Whose Data is it Anyway?

When cancer patient Pete started to look into who held records about his illness and treatment, mapping the journey of his data proved to be no easy feat. Tracking where his information was held, had been used, and might yet be used in the future took tens of hours of searching and filing requests.     As a member of use MY data, a UK-based patient group working to build confidence in the use of healthcare data, he is helping to demonstrate how much work the industry has to do when it comes to transparency around patient data.     This lack of accessibility, coupled with the wider suspicion around data usage thanks to well publicised data breaches and the cavalier ways some tech giants have acted around privacy and consent, make it understandable for patients to worry about how their information is being used or profited from.    But it doesn ’t have to be this way, as healthcare professionals (HCPs), pharma and patients alike all have much to gain from there being greater clarity around data usage. HCPs want to work with patents to improve care while patients are generally happy to consent to this if their trust is earned, says Chris Carrigan, expert data advisor for use MY data.  When consent is clear to all parties and can be monitored in real time, or adapted for future uses, patients can be satisfied their data is being used appropriately in ways that respect their privacy. Meanwhile pharma companies and providers have greater freedom to work with data, ga...
Source: EyeForPharma - Category: Pharmaceuticals Authors: Source Type: news