10-4, YogaO! ;)
GREAT idea, Mike! I just reached out to her via Twitter.
I wanted to thank the group for sharing your insights on the topic.
I wrote this blog post in an attempt to capture them, along with feedback from others outside TuDiabetes, in what became "the voice of the patient" in the panel:
I hope I represented us well. You can read about people's comments during the session here:
That is a great writeup. It frankly scares me a bit that patients and consumers are usually left out of the conversation on these data issues. It is kind of like we are treated as children, everyone else talking and deciding about these things without asking us what we want. And just so you know, we did miss you at Unconference.
ps. And thanks for the shout out and representing us.
Very interesting (and disturbing in some respects) write-up of the event, Manny.
There are so many points made here, but let's start with the most fundamental:
To most, if not all, patients in the US, the HIPAA form you receive from a HCP is just a waste of paper and time, because every HCP makes you sign it, it is legally the same in every office, and you can't get in to see the doctor without signing it. So why have the form? Why not have the HCP just post a sign that they comply with HIPAA next to their diploma/license? Worse than EULAs from Microsoft, Apple, etc, you have no choice, so why bother with what it says?
One of the Twitter commenters wrote:
Who's [sic] responsibility is it to write strong policy in #digitalhealth #privacy in the #US? Again not sure! #SXSWHIPAA Here's the link.
I wholeheartedly agree! Now that we have moved into this social, digital age, where so much of our data is available to be used or abused, who is supposed to stand up to protect our data? How can we make sure we are at the table?