In September, the AHIC Successor organization announced its new board of directors. The news marked a major development in the groups move from a public entity to a public/private partnership, established in cooperation with the U.S. Department of Health and Human Services. The board has been tasked with developing a unified approach in creating an “effective, interoperable nationwide health information system.” One of the 15 new board members is Paul Tang, M.D., M.S., vice president and CMIO with Palo Alto Medical Foundation in California. HCI Editor-in-Chief Anthony Guerra recently chatted with Tang about his vision for AHIC 2.0.
AG: Tell me about your involvement in the first iteration of AHIC and why you decided to participate in AHIC Successor.
PT: I was involved with AHIC on the consumer empowerment workgroup. And you probably know that I’ve been active nationally in many areas of HIT development, effective use and adoption and a lot on the policy area. So I serve also on NCVHS (National Committee on Vital and Health Statistics), which is the advisory group to the Secretary about HIT policies and data. So clearly, it’s been an area of interest to me, and I do believe passionately that HIT has tools to deliver effective and safe healthcare. Let me expand that to health and wellness.
I think we should think of health more broadly. It’s not just sick care or certainly not just end-of-life care, but really, how can we improve the health of individuals and the health of the nation? And that is a bit of change in paradigm. But also I think one of the tools we do need is a health information infrastructure, because we, as individuals, need to have data, knowledge, and tools in order to make decisions on anything and on health, as well. So let’s say you want to either increase your level of physical activity or change your diet or change your management of diabetes or hypertension, you still have to know what data do I need in order to change my behavior in one of those areas, what does that data mean, and what can I do differently that would improve my status whether it’s in my nutrition, my physical activity or my management of hypertension.
AG: You are very interested in making healthcare IT work for consumers, is that fair to say?
AG: Tell me about the meeting of PHRs and the hospital setting. What do chief information officers do with this trend, how do they prepare for the day when patients come in with PHRs? How can physicians trust the data in the PHRs they review?
PT: That’s an area that we spent a lot of time on in the NCVHS in particular. And the reason is because it covers many areas. One area is privacy, one is security. A term or a phrase that I think I like better is actually something that AMIA (American Medical Informatics Association) has sort of thrown out there, and that’s data stewardship. Data stewardship is more than just making sure that you get data in a secure way, but it also concerns data integrity, which is one of the aspects of your question.
Another is the authenticity. I’ve got to know where each piece of data comes from and I have to know that it hasn’t been changed. And furthermore, I would also like to know if there is something that is being hidden, which is another big deal.
AG: What do you mean by “hidden”?
PT: So in one version, you could say the consumer gets to import data but then they get to share — to decide for each and every item whether they want to share it or not. So if I'm a physician and you say here’s my record, and yet I know that some of the stuff is incomplete, that needs to be addressed. How do I know whether I can rely on that to make decisions on your care?
And actually one of the compromises that NCVHS had to tackle was could there be categories of data, let’s say mental health, or let’s say substance abuse, and I can choose to block or hide that. Well I think that would be okay if you had a flag that says there’s material hidden here. That gives the physician notice that he/she may want to find out more, and if it’s relevant to what I'm seeing you for, that it may be useful for me to ask about that hidden area. Do you see what I'm saying? So that’s a way.
One of your questions is well, if we’re going to get presented with this new repository of information, how can I rely on it? We need to make sure that NHIN offers a way to authenticate, to preserve the integrity and maintain the confidentiality of health information. And we need to be able to, in some way, flag areas where there’s information that’s not being made available, then you can see how that can be useful to the physician.
AG: You’re a physician. Would you ever take medical action off of data that someone had in a PHR?
PT: If it fulfilled those criteria, yes. So let’s pretend I had a PHR that Cleveland Clinic supplied and I knew, okay, this came from Cleveland Clinic, it shows all the records and nothing’s been altered. No reason not to rely on that data, it’s just like a paper. I have no reason I shouldn’t trust it.
Now let’s say — a different set of rules — the patient is allowed to hide certain things but only in categories, and I get to know if there is anything hidden in that category. So let’s say you are seeing somebody and there is something in the mental health area or there is something in the sexually transmitted disease area and it’s hidden. Well, if I had a flag that says there’s something there that you’re not seeing, that’s fine with me, and if I don’t need to know their sexual history for whatever I'm seeing them for — let’s say a broken bone — then I don’t even have to query about that. But if I see that flag then I’m on the alert and I can query about it if I think it relates to what we’re discussing today.
AG: You're talking about a record that was created by a medical organization and sealed in a PDF-type way. I'm thinking of a personal health record that a patient has control over and feeds information into. Can a clinician trust a record like that?