Incorporating Patient-Generated Data in Meaningful Use of HIT

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.

Yesterday I posted my feedback on the questions to the first panel.  Today I'm posting my feedback on the questions for the second panel. 
Panel 2: Incorporating Patient-Generated Data in Meaningful Use of HIT

a. What is the role of patient-generated data in improving health of individuals? What is the evidence?
If you broaden the question, I think you will find the evidence you seek.  How does self monitoring, data gathering, trending and review of available information on event W by individuals increase the ability of individuals in responding to event Z related to W.  The key factor here would be understanding what the impact of knowledge of relationships between W and Z are on the individual monitoring the event.

b. How can patient-reported data be integrated into EHRs and the clinicians’ workflow to improve care management?
Read the use case for the Medication / Registration Summary and the HITSP response to that.  That would be a huge first step.  If a provider can give me the data, and I have get the tools to manage and update it, and give it back to them, they've just saved me a great deal of time in obtaining healthcare, and themselves in entering it accurately, and eliminated a key "new patient" frustration.  If that can be done ahead of time through integration with HIT, so that I can send the data to my provider the same way that I can routinely communicate with my bank (using an application of MY choosing), then you've provided me with tools that will allow me to make better use of both my and my provider's time.

c. How can future conceptions of personal health information platforms and information tools facilitate patient-centered care, including transparency, coordinated care, patient activation, while protecting patient privacy?
This question assumes that patient centeredness, transparency, coordinated care, patient activitation and privacy are all key requirements of a future personal health information platform, and I almost want to ask what your evidence for that is.

Experience tells us that killer applications come from unexpected directions.  One unexpected direction might be the move towards "less privacy".  If you look at services like 23 and me, or Healthcare related social networking sites, you'll see that activated patients who have information and share that information with others are getting around barriers to transparency, and towards being better coordinators of their own care.  Often times that activation occurs through the possession of an important piece of information (e.g., a life threatening diagnosis).  I think an important way forward is to enable more safe spaces where people can discuss healthcare issues publically without stigma, so that "invasions of privacy" due to knowledge of a person's health conditions stops being threatening.  One advance in this direction in the policy sphere was the Genetic Non-Discrimination Act.

d. What is the role of the patient in ensuring data in EHRs is accurate?
The patient's role (perhaps even better to say responsibility) in verifying their clinical data is just like the consumer's role in ensuring that their credit score is accurate.  Consumers that want good care will do what they can to make sure their providers have the right data, but to start with, they need to have the data their providers have, and appropriate resources to help them interpret it.  That means that a) consumers need to become more educated about the topic, b) providers, and our social structures (e.g., education) need to educate consumers.  If you want to make lasting change the behavior of consumers in general, you need to start young.

e. What are your recommendations for meaningful use criteria for 2013 and 2015 that are achievable by a broad spectrum of providers?
It is way too early to answer this question fully, since the broad spectrum of healthcare providers are still struggling to understand what meaningful use for 2011 means.

Some early thoughts: Reduce optionality presented in the 2011 criteria to establish a single set of standards.  Look at health information exchange functions such as lab and diagnostic imaging result delivery, referrals, web-enabled appointment scheduling and personal health records.  Align other incentives on the use of technology (outside of those incentives already specified within HITECH).