HIT Policy - Patient/Consumer Engagement Hearing

I was not able to listen live to this testimony, so I downloaded the MP3 and listened to it on my drive to/from Chicago for the IHE meetings. This is 4 hours of passionate pleading to include the Patient/Consumer engagement into Meaningful Use. There is no questioning of the passion behind each and every individual giving testimony.

HIT Policy Committee Meaningful Use Workgroup
Tuesday, April 20, 2010, 9 a.m. to 3:30 p.m./Eastern Time
Panel 1:  Meaningful Use of HIT in the Real Lives of Patients & Families
    Moderator:  Christine Bechtel
    Scott Mackie, Health & Wellness, IDEO, Inc.
    Eric Dishman, Director, Health Innovation & Policy, Intel Corp.
    M. Chris Gibbons, Johns Hopkins University Urban Health Institute
    Neil Calman, MD, Institute for Family Health
    Regina Holliday, patient voice
Panel 2:  Incorporating Patient-Generated Data in Meaningful Use of HIT
    Moderator:  David Lansky
    James Ralston, Group Health Research Institute
    Patti Brennan, University of Wisconsin, Project Health Design
   Carol Raphael, Visiting Nurse Service, NY
    Dave DeBronkart, ePatient Dave
    David Whitlinger, NY eHealth Collaborative
    Hank Fanberg, Christus Health
Panel 3:  Policy Challenges & Infrastructure Requirements to Facilitate
Patient/Consumers’ Meaningful Use of HIT
  Moderator:  Deven McGraw
  Joy Pritts, Chief Privacy Officer, Office of the National Coordinator
  James Weinstein, Dartmouth Institute for Health Policy & Clinical Practice
  Carl Dvorak, Epic Corporation
  Cris Ross, MinuteClinic   

However I was very frustrated that the little nuggets of new information in the testimony was overshadowed by the passion of the message. I never once heard a question from the committee members that was on these nuggets. The questions were mostly on the parts that the healthcare community continues to hash over and over. I kept expecting the chairman to summarize these nuggets.

The main message I extracted out of testimony, that I think was more-or-less lost on the committee, is that there is a HUGE amount of miss-information around what the Law says. Over and over I heard people asking for access to their health record. This 'right' was very clearly given to the patient in the HIPAA rules, and was further given again in ARRA. If it was given to the patient yet again, I don't think anything would change. Clearly the problem here is that the healthcare community doesn't understand the clear text in the current text. This is a gap of training, not a gap of regulations. This lack of training was not unique to access to the health record, there were many other topics that boil down to the same problem.

I heard strong need for Consent to be fully informed. Healthcare Providers need help from somewhere to help them explain what their Privacy Policies mean to the patient. This is also a case of not communicating with the Patient, but is also related to the whole mess around the meaning of consent in the USA. This complexity in privacy policy is not helping anyone at this point. We need simplification in the Privacy Consent landscape.