That’s a big difference so we’re kind of seeing some flare-ups in the comments around patient engagement saying ‘Well, we can’t possibly give you downloaded information on a patient within the timeframe suggested because we just technically can’t do that.’ But it’s a cultural thing because if they really wanted to do it they probably could. And that’s why we’re suggesting that the agency stand firm on the number of patients that are expected to see downloaded material and the timeframe. There really is no technical reason that this cannot happen.

Q: And there certainly are physicians out there already doing that, or even providing patients a copy of their medical record at the end of every appointment, albeit as the exception not the rule today …
A: So it can be done. It can be done if we place a high enough priority on it. We think it’s important to place that information into the hands of patients, the healthcare consumers.

Q: So what can HHS, CMS, ONC do to foster that sort of cultural change?
A: We tried to give them a round of applause and recognize the way they’re doing this because of the trickiness here. They have to walk this balance between pushing hard without pushing so hard that they overstep the ability for hospitals, clinics, physicians to respond, so they have to balance between the urgency of getting this to happen and with the capabilities of the system to react. I’m a physician, I’ve practiced, so I know what that’s like, but it’s relatively easy for me to say that ‘it’s technically easy so let’s just do it’. It’s a lot harder in a busy practice to change the way you’re doing things, but we have to do that. We thought the agency pretty much struck the right balance between pushing hard but also recognizing that there is a continuum of capability to react to these pretty revolutionary changes even though one might look at it and say ‘it’s not that revolutionary’ but it actually is. The direction and the vision is spot on. The agencies are a big player and they can help all the leaders of the healthcare system map out a vision and help us make progress in that direction.

Q: Another topic of focus in RWJF’s comments is quality measures…
A: There’s an important point about clinical quality measures and taking every opportunity we can to push the envelope on using the adopted electronic health record infrastructure as well as pushing hard on the exchange infrastructure to make progress on getting better quality measures than we currently have. We have a lot of them, but we need better ones to talk about results that matter to patients and consumers, purchasers of healthcare. We really need that stream of clinical information coming into the measurement system to prompt this electronic infrastructure to help us do that. So anything the meaningful use rule can do to advance that is really important.

[Commentary: Inside the MU Stage 2 NPRM: 'A difficult balance'.]

The other thing is a pair of projects at the frontier of patient engagement; one is called Project Health Design, the other is Open Notes. The first looks at patient portals and patient-oriented tools to deal with patients’ health information, and the second is to allow patients to see their notes. What we’re finding from our surveys and studies concerning both of those is that patients are very, very interested in getting access to their information. They’re not afraid of it, and they’re kind of getting ahead of the health profession, so the rule doesn’t really incorporate that. We’re encouraged where they push the envelope a little bit on patient engagement but we think in this one and subsequent editions they should not be afraid to push hard on that.

Q: A question that I ask a lot of people – and U.S. CTO Todd Park is a big driver of this whole idea of data liberacion – but even health data that is about me doesn’t belong to me today. Why isn’t it mine?
A: Exactly. We made that point. Everything we’re talking about, EHR adoption, exchange, meaningful use, is collecting information that’s essentially the public's. It’s about them and it is theirs. We have to keep that in mind: It’s not the doctor’s information, it’s not the hospital's, it’s about you and it is yours. And people are really eager to get that information.