Had a picnic lunch and a walk at Oaklands Park:
This morning's Zoom meeting "What Your Health Data Can Do" from UCLH was built around COVID more than anything else, and made a strong case for availability of full medical records for research purposes. My main concern isn't so much about my health data being "Out there" - much of it probably is anyway in this post-privacy age - as about the ability of the NHS to build the IT systems they need to handle it all and particularly to integrate all the different systems and file formats etc. used by GP surgeries and hospitals all over the country. The NHS doesn't exactly have the best record when it comes to scaling up systems that work in one lab to cover the whole country.
Weather continuing very hot. Everything growing fast - only a couple of days since I cut the grass and it's back again.
Nothing new on the myeloma front, apart from an active day of admin work on the Facebook group. Somebody posted about debt problems caused by her myeloma diagnosis - she thought she was going to die soon so overspent on credit cards figuring she'd be gone before she had to pay it back... But she didn't die and had to face the problems and did it in entirely the right way, getting a very helpful response including writing off much of the debt. Not everyone was happy about that, but IMO it was a brave action to be completely open about it and I'll bet we have more than a few members facing similar debt problems who will have been very glad to read that and will be encouraged do the right thing rather than hiding it away. So that's our little controversy for the week.
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