The Information Commissioner’s Office has between 2015 and 2017 carried out investigations into practices in charity fundraising and some charities’ compliance with the laws that protect privacy that resulted in 3 major Cancer Charities being fined for breaking the law with regard to how they handle donors’ personal information.
They also produced some nice plain English explanations of how these charities were misusing personal data to extract more cash out of potential donors:
Interesting to contrast this with Patients who have died calling for their data to be used (eg. Laurie Becklund RIP “Promise me you’ll never wear a pink ribbon in my name or drop a dollar into a bucket that goes to breast cancer “awareness” for “early detection for a cure”) and the bemusement of the Macmillan Cancer Support CEO when comparing the disconnected care her daughter receives from NHS Hospitals with the joined up care provided to her dogs by her Veterinarian.
Maybe Cancer Charities just need to start using Patient data as efficiently as they are already using Donor data to raise more funds? A good start would be committing to only funding Mobile First Clinicial Trials.
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