Health IT Strategic Plan: Consumer Empowerment

I am in Washington DC today attending meetings hosted by ONC – The Office of the National Coordinator of Health Information Technology.

We’ll try a little “liveblogging” as there is free wireless.

Josh Siedman opened

Christine Bechtel is speaking now on consumer engagement.  She is very smart – but more importantly seems to focus on common sense approaches to things.

What she says:

  • RECs can help providers choose
  • Providers can/should engage consumers and consumer organizations as priorities are identified.
  • Consumers can be leveraged to move agendas forward:  It’s not about “if you build it will the come?” .. rather “if you build it WITH them .. they will already be there.”

Next:  Silus Buchanan – Cave Institute.   Siuls attended Health2.0 in San Francisco .. what he saw/heard:

  • Very few minority attendees at the conference
  • He spoke with Health2.0 vendors about minorities / disparities.  Were they focused on disparities or people of color?  No.
  • HIT vendors seem to be focused on “people with money”
  • There is an opportunity to innovate FOR and WITH minorities.  This is a market opportunity.  Social factors are ignored in general – and have not attracted sufficient attention in the mainstream.

The Cave Institute is soon to open “” (not up yet – no hyperlink) to provide basic overviews of health IT.  Inviting vendors to participate.

Next up:

Tom Sellers:  National Coalition for cancer Survivorship.  

Tom has been a 11 year cancer survivor and his mom died of cancer at age 51.  

  • How can we get specialty providers to adopt and engage with HIT?  Only about 5% of oncology has an EHR.
  • Cancer patients endure lots of redundant events:  exams, tests, etc .. since the docs don’t communicate.
  • “handoff” from oncology to primary care seem horribly inefficient.  Missed opportunity for patient benefit.
  • No current models for how patient INPUT and feedback exists
    • Pain
    • side effects
    • complications
    • symptoms
  • Patients are/may be/will be much more interested in data sharing / research opportunities than patient privacy groups would represent.
  • “I talk about PATIENTS and not CONSUMERS”
  • Patients WANT their information shared with other providers.  
  • Survey:  over 90% of patients are comfortable with performing health related activities online

Last panelist:  Ginger Viera – Life coach/health coach, type 1 diabetic, celiac disease 

  • Ginger recounted a handful of events that have occurred that are byproducts of a disconnected system of providers who know what they know .. and don’t necessarily know what they don’t know.  She has had to advocate for herself (too much) in the face of providers who are overwhelmed by a dysfunctional system – and who doubted her.  She hopes that Health IT will provide better access to the information that was missing from the providers’ brains.