If you ever wonder why the efforts to make it easier for patients and families to get information and be treated as equals in their care by the medical care system matter….
If you need convincing that the concept of participatory medicine is important enough for its own society, advocates & journal….
If you wonder whether it’s OK to wait to phase in the possibility of patients actually having rights to their own data….
Read Regina Holliday’s story about Fred’s illness and the way she and he were treated.
The last link Matthew provided goes to Regina’s Medical Advocacy Blog. Regina is also very active on facebook and twitter (@ReginaHolliday).
She has been tirelessly advocating for patient rights, including health data rights, for almost six months now. Her efforts and press coverage of her story are documented here: Regina’s Advocacy Timeline
Kudos to THCB for being one of the first to cover Regina and Fred’s story back in June.
Oops, I pasted the same link twice. Here is the CORRECT link to Regina’s Advocacy Timeline.
Well said, Matthew. You tied together a whole bunch of things that have become increasingly important to me in the 20 months since I discovered this world.
There is avoidable injustice in this industry, most of it caused (as far as I can tell) by foolish unwillingness to just stop being crappy at getting the job done.
in order to accomplish this we need to start undoing the excessive regulation that makes open and covenant sharing such a minefield. It’s easy to want the results a certain way, the tough part is what “protections” are we willing to give up to get there? Major parts of HIPAA and GINA need repealed if we are going to get where we need to be in participatory medicine..
Well done, Matthew, thanks for posting this!
When you’re next in DC (and I mean anyone, not just Matthew) do stop by to see the mural in person, which is a couple doors down from the best local bookstore in town, Politics & Prose.