Meaningful Use of HIT in the Real Lives of Patients and Families

ONC is requesting feedback on Stages 2 and 3 for meaningful use.  The HIT Policy Committee's Meaningful Use workgroup will be holding hearings on April 20th to discuss patient and family engagement.

There are three panels.  The full list of questions for each panel can be found at the link above.  The questions addressed to the first panel and some of my own responses to it appear below.

Panel 1: Meaningful Use of HIT in the Real Lives of Patients & Families

a. What are consumers’ health information needs in the context of their real lives?
What is the impact of my diagnosis on my health?  What are effective treatments for it?  How much will they cost me, considering all the different treatment options?  What changes can I make in my life that will improve the outcomes?  Who is best at treating it in my area?  What does this lab result mean?  How does it compare to previous tests I've had? Are they getting better or worse?  What can I do to make it "better"?

I or my family member needs to be able access to detailed records on a prior health event with respect to emergency care being recieved in the evening or on the weekend.  The provider with that chart is 500 miles away and it is after hours, so nobody is available who can go get that chart and send it to the attending provider.

I'm on vacation out of town and ran out of/or forgot to bring my medications, how can I easily get replacements without having to make 3 calls?

My daughter has a sore throat.  Should I worry or not? Should we do more than treat the symptoms?  This week no, last week yes, depending on what's going around, but I'm not in the loop for that information.

Given a standardized basket of healthcare goods that approximates my needs, which providers (have better outcomes), and how much will my care cost?  Same question for insurers. 

b. How do results of ethnographic studies of individuals with chronic health conditions inform our understanding of how HIT can improve their use of health information and connectivity with their providers to improve their health?
Frankly, I don't know the answer to this one.  This question is so specific that it begs of an answer that may be already known or suspected.  If I were a lawyer, I might object on the basis that council is leading the witness.  I'd be interested in more information on what the real question is here.

c. What is the evidence base for patient benefit from their direct use of PHRs and other HIT that interacts with EHRs?
I think the real question should be "what does the evidence show about the effects of patient involvement and education with respect to the effectiveness of their healthcare."  Technology is one way to enable involvement and education.  Technology solutions are still evolving, and I don't think we have yet seen the "killer app".

d. What is the role of mobile applications in improving health of individuals? Is there a specific role for underserved populations?
Today, mobile applications are already used by patients to keep track of significant health events, including monitoring (glucose, blood pressure), diet, and excercise.  In terms of specific roles for underserved populations, HIT is presently used in my state to support and provide health information to homeless persons.  These roles are still evolving.  The "killer apps" aren't developed yet, the first step is to make the data available so that they can be created.
e. How can we use HIT to make information and knowledge actionable for patients?
By enabling patients to obtain the answers to the questions listed under item 1a above.
f. How does HIT enhance collaboration between patients and their providers and change how the patient’s health is managed?
Patients today can already remotely review their health information, including diagnoses, medications and lab results; schedule appointments; request prescription renewals; communicate directly with their healthcare providers; or obtain more information on specific diagnosis, medications, et cetera.  They can also update their health history information, and complete questionaires and assessment instruments online rather than having to have an in-person encounter.  Providers can respond to these requests when they have time available without having to interrupt existing workflows, at dramatically reduced costs for the patient and provider.