Of course, Friday I caught the cold that's been going around my house, and so Sunday, I was doing my best to remain standing for the five minutes at the end of Dave's talk where I reported some of what we learned at HealthCamp on Friday about data access.
I managed to use the video my daughters did twice to briefly introduce Blue Button and the ABBI Project to people who had never heard of it before, once for the Claims Attachments Workgroup at HL7, and a second time for one of the sessions I did at Health Camp.
The Health Camp session was interesting, and was used as input to Dave's closing keynote at Medicine 2.0. Here's my summary of the discussion:
Patient Empowerment after Three Years: What have we accomplished and Where do we need to go?
Where are we?You can answer that question:
How many of you have relevant records from all of your providers? 0
How many of you have records from one or more of your providers? 2/3rds of the room
How many of you have ELECTRONIC copies of your records from one or more providers? 2
How many could? 4
NOTE: I asked these same questions at Medicine 2.0, the responses were similar. Fewer had records from one or more providers, but more had electronic copies of their records, or availability.
Challenges:Access to data is not understood as a right. OCR Letter still needed after umpteen years of HIPAA. The P in HIPAA stands for Portablity, but most still believe it is for privacy.
Liability for what happens with the data: Providers and payers are afraid to release it because of HIPAA. If it goes direct to patients OK, but when it goes to an application or service acting on behalf of the patient, this is a problem. They are afraid of what their liability will be. What happens if the service causes a breach?
NOTE: I built this into the proposed policy framework for the ABBI Project.
Fear of over-consumption: Resources are already scarce. What happens to providers when they release all of this data. Won't that take more uncompensated effort on their part.
- I didn't even know I could get it.
- I don't care, and won't care until there is a "sentinel event"
- It takes too much time to get the records, and then go through all of that
- Patients need tools to manage all of the data. It's overwhelming.
Some organizations want to hold on to the data, keep it in the network, because it could enable patients to go elsewhere.
Solutions:Digital Human Rights to a "Life Record" (e.g., Credit Reporting)
PHR is only a small part of it. Not just the clinical data, but other data available via FaceBook, et cetera (c.f., Regina's Story about Fred's Facebook content that told how he felt). This is feedback.
The Person is the "Domain"
- They have sovereignty in their domain
- They can choose what to share and to whom
Patients need Access:
- to the data
- to the standards and APIs
- to provide feedback
- to be an equal participant in the discussion
Put Disclaimers in the Download: "This is yours, you need to take care of it."
Education, Education, Education
- For patients
- For Providers
- For Payers
Everyone needs education. What are the patient's rights. What are the payer and provider responsibilities.
Throughout, in developing technology solutions: Remember that Empowerment is the Objective, Interoperability is the method we use to accomplish it.
Dave, Abby (my daughter) and I presented high points of this summary at the end of Medicine 2.0. I was proud of Abby. She said her bit briefly and articulately, and represented the generation for which Medicine 2.0 seems to be targeting. Thanks Dave, for providing her with the opportunity to speak out. She wants the ability to talk to her doctor on Facebook and Twitter. Ye gads! I can barely imagine what her children will want, but it is something we all need to be thinking about, and working towards.