Mohammad: Hi Willa! Thanks for your time today. Could you start by giving us a little background about yourself?
Willa: Sure. I’m a registered nurse with multiple degrees. My highest degree is a doctorate in nursing science. To give you a snapshot: I’ve been in health care, specifically in nursing, for 40-45 years. I’m a registered nurse, and have held positions from a staff nurse in critical care to a vice president of patient care information systems. In 2006, I left my vice president position at Sharp HealthCare, an integrated delivery system in San Diego, California, to become a faculty member at San Diego State University, where I am now a tenured professor in the School of Nursing. My nursing background includes clinical nursing, administration, education and research.
I’ve been in Health IT for about 20 years. I’ve worked in a variety of settings, including: hospitals, schools of nursing, and a clinical information system software company. I first became involved in HIMSS when I worked for the software company. My work with HIMSS began as a reviewer for the annual conference. I’ve since served on various committees, and ultimately got elected to the board of directors and then as the chairwoman of the board of directors.
Mohammad: Okay, great. Since you’ve given us some of your background, do you want to give our readers some basics on Meaningful Use? What was the intent behind it, and what has it achieved in the last four years?
Willa: I’m guessing that you’re familiar with the HITECH Act, the Health Information Technology for Economic and Clinical Health Act. That Act is a part of the American Recovery and Reinvestment Act that was passed in 2009.
Within HITECH, there was a component meant to ensure that electronic health records provided benefits for both providers and patients, and that ultimately, we improved care overall. Basically it’s called the Meaningful Use program, and it establishes a set of standards that the Office for the National Coordinator for Healthcare Information Technology (ONC) established.
What does this all mean? Well, Meaningful Use has three stages. Stage I, which we are in right now, has criteria to implement certified EHRs so patient data are in the computer systems. Then, starting in 2014, we’ll start with Stage 2, which is building on Stage 1. The idea is, “Okay, now you have the data. You’ve implemented these electronic health records–you’ve got the data in. Now show me that you’re using it.”
2016 is when we really get to the place where the rubber meets the road, so to speak. At that point, the systems are set up, the data is being used, and you’re improving health care. That’s the ultimate goal of all of this: to improve public health and to improve clinical outcomes, both for individuals, and then for our country as a whole. It’s all set up to be an iterative process.
When the regulations for Stage 1 were first drafted, there was a period of public comment where people could say, “I love this part, I hate this part, what did you think of this?” Then, ONC looked at literally thousands and thousands of comments to come up with the final regulations. The same thing happened with Stage 2, and, in fact, in November, the call for public comment came out for Stage 3.
Mohammad: HITECH was really interesting to me. On a personal level, I left the US in 2008. One of the reasons that I left is that the incentives were wrong for doing the right thing. The infrastructure was there, the talent was there, but the incentives were often doing the wrong thing. It looks like with the HITECH Act the intention and, increasingly, the deployments were actually for doing the right thing. Is that correct?
Willa: Yes. I totally agree with that. We’re in a period of transition, and it’s very difficult. Health care is going to be totally transformed. If the focus is to improve clinical outcomes, how do we get there? The government has identified that one of the ways to get there is by using these certified electronic health records in a meaningful way. We don’t just have technology for the sake of technology. Instead, it’s for the purpose of delivering better care. If you can give better care, then it stands to reason that you’ll improve health and improve clinical outcomes.
You can’t get straight away to improved clinical outcomes at the outset, since we have such a low adoption– or had–such a low adoption rate of electronic health records in the United States. The idea was, okay, what’s the first step? Get good systems, which are certified, and the standards for certification also change with each stage, becoming increasingly more complex. You start with a certified system, you get it in, you use it, and then you improve health.
Mohammad: All right, we’ve made a good start. So what’s the challenge for continuing with this for the next five years?
Willa: That’s what I talked about in my testimony. A big challenge is for these systems to talk to each other and to be usable. The usability is partly dependent on the interoperability. If you take a private practitioner who’se a specialist, that particular person gets referrals–how do we have the systems talk to each other so that the pertinent clinical data that that specialist needs is transferred electronically into his or her electronic system?
That’s the interoperability issue, and we’re better than we were, but we’re not as far along as we need to be. But having so many people working on these systems means we’re able to do the research, solve the problems and do the development, so that the systems are more interoperable.
Mohammad: How does that integration happen? I guess some folks are relying on Health Information Exchanges (HIEs), but sometimes I almost feel like there are as many HIE vendors as there are EHR vendors.
Willa: Well, there’s a few left, but yes. Historically, the United States has supported entrepreneurship, and so the goal is that, through a partnership of the government and the private sector, we will solve the problem together.
Mohammad: Ok. Let’s continue on the issue of interoperability. HIEs)allow the technical transfer of data across different settings. One of the challenges I was seeing in the US is that the governance difficulties intrinsic to these systems mean they often share less than is technically possible to share. For example, they might agree that moving data from the family physician to the hospital, and vice versa, makes sense. But at the same time, they might struggle about giving the same data to the pharmacy or to the social worker.
Even if the patient would have benefited or even would have agreed to the transfer, they struggle with the idea of blanket transfer of data, and thus end up under-transferring data, which to a degree defeats the purpose. There’s no information and governance layer in the HIEs. How do people navigate that to really get the full benefit of HIEs and transfer data across the community?
Willa: That’s a tough question. A similar question is, “What are the challenges we need to be able to get through more broadly,” because there are challenges on so many levels. If we just say, as a base-level assumption, that everybody has the systems in place and all the systems have the data and that we also have the technological ability to share the data–why aren’t we doing so?
One issue is patient trust in the system. When I looked at the information on some of the stuff that David sent me about Patients Know Best, the broader question in this domain is, “Does the patient trust that the system will not abuse the privilege of having access to this information?” Based on research I’ve reviewed, often patients, if they don’t trust the system, do recognize the benefit. Most people in the United States actually are fairly willing to have their data shared, as long as they are pretty much assured that their privacy and security won’t be compromised.
Another challenge I see from a technological perspective– and I talked about this in my testimony–is the issue of patient data-matching strategies. We don’t have a nationwide approach to matching the patients with their data. I know from working at Sharp HealthCare, which is an integrated delivery system–the challenges we had just within Sharp of making certain all of the various episodes of care that had a record were all appropriately matched and put together, so that you didn’t mix up records or data. That’s one of the big challenges as we share data across organizations, how do we ensure that we’re matching the patients appropriately?
That’s where we really need to have a nationwide approach, and we’re at the point that now we have the systems in, and NIST, the National Institute of Standards and Technology, is one of the organizations that testified along with me before Congress. They certainly are working on algorithms. Even if they have algorithms, we have to figure out what the strategy for the algorithm is so that we can ensure that we have the right data together. I see that as another major challenge.
Mohammad: If you have these algorithms, how do you apply them? In other words, you might apply the algorithm to these two records from two different institutions. We are, for example, 90 percent sure that this is the same patient, because there’s a match on the spelling of the name and variations, maybe date of birth and the Social Security Number. But we’re not 100 percent sure, so would you then go ahead and fuse two patients’ records, knowing that 10 percent of the time you will be doing that incorrectly?
Willa: No.
Mohammad: Or will you decide that it’s too low? How would you merge that?
Willa: Okay. In the U.S. now, it’s estimated that about 8 to 14 percent of the medical records include erroneous information that’s tied to incorrect patient identity. In the organization that I worked in, we had this huge project to bring down our mismatches, and were in the end able to bring it down to between 1 and 3 percent. What happens to those 1 to 3 percent? You don’t match them. You have the algorithms in place, and then if through the computer system they’re not sure that two records are the same person, well in that case, those records go into a holding place, I’m going to call it, and then it takes a human being to actually go through, look at the records and determine if they are for the same person or not. That’s a very labor intensive, costly process, not to mention that while that data sits in that holding area, it’s not available for clinical decision-making.
Mohammad: 1-3 percent is a really good rate in the industry.
Willa: Yes, and we were able to bring it down that low, but we still had 1 to 3 percent, and that still took a staff of people who did nothing all day but look at the records that were in that holding area. I have this line I like to say, “Which mistake would you rather make?” The point is that if the choice you make is correct, you’re home free. Everything’s good because you made the right decision, so there’s no problem with making the right decision.
The problem is what if you make the wrong decision. And then it becomes a question of your comfort level in making what’s called a type I or a type II error?. When I have a complex decision that I need to make, I think, “Okay, this is the decision I want to make. What if this decision is wrong? Which mistake would I rather make?” When it comes to matching patient records, you never want to make the mistake of mismatching.
Mohammad: And if you make the right decision for the wrong reasons, no one will say thank you, but if you make the wrong decision for the right reasons, you will get into a whole bunch of trouble.
Willa: Yes, and so even if your reasons are right, you don’t want to make the mistake. That’s when you said, “Well, do the patient records get mismatched,” and I hope the answer is no. Whether you say 1 to 3 percent, 8 to 14 percent, whatever the mismatch is, you want those mismatches to sit somewhere so that somebody can go through it to determine if they need to be together or not, because the mistake you don’t want to make is to merge two records from two different people.
Mohammad: That’s how you match this up within the same team, where you’re able to put internal protocols and train everyone up and get them working together. What happens with the error rate between organizations?
Willa: I don’t know the numbers for that, but I can only imagine the risk to be much higher because when you go between organizations, you’re now using different applications. You have different vendors of electronic health records systems. The risk for error is even greater, which is why it’s imperative that we have some type of strategy for patient matching. In the United States, part of the HITECH Act was funding for research, and this includes what are called Beacon Communities. San Diego is one of the Beacon Communities. The government has given money to these communities to develop health information exchanges, and as part of the health information exchange, it’s not only the technical part of sharing the data, but it’s also coming up with the strategy for patient matching. The hope is that, through this work, we will come up with a set of best practices.
Mohammad: On the topic of those HIEs: if they’re being granted by the government and, at least in the initial years, surviving on that kind of grant money, what’s the contingency plan for when the money runs out?
Willa: Another tough question. What I can tell you is that if it’s not sustainable, it collapses, which I think is roughly the history of RHIOs. It would have to be sustainable.
Mohammad: Ok. Let’s drill down to an even more basic level. All this data is moving back and forth between settings, systems, etc.. Who owns it?
Willa: The patient owns it, but the organization that is collecting the data is basically a steward of the data. If the patient owns it, and the provider or the health care organization is the steward, then in the final analysis, the patient should be able to determine who has access to their data. I think this has actually been tested through the years. When I first started in health care in the 1960s, the question was, “Is the patient allowed to see their medical record?” “Well, no. The hospital owns the medical record,” was the answer.
Then there was great debate about it, and so it was determined that, no, the patient owns the data because it came from the patient. It’s my health history, it’s my information, but the hospital is the steward of the data, and then I entrust that the hospital will not violate my privacy, security, or misuse that data in any way.
With paper records, it was really difficult for me as the patient to see that data, because I would have to physically go in to “Medical Records” and look at it. With electronic health records, it’s actually really easy. With patient portals and the Internet, I should be able to go in and look at the data, and if it’s wrong, which it often is, I, as the patient, should have a process to be able to either make a notation or somehow have it be corrected.
Mohammad: It’s interesting you mention the errors. One of the things we often get told in working with hospitals and clinicians through Patients Know Best is you shouldn’t show the patient the records until you’ve fixed the errors. One of the things we say is that you won’t fix the errors until the patient sees their record, and you could actually use them as part of the process for making those fixes.
Willa: I remember having discussions with colleagues of whether you have more reliable data and research if you use the medical record or if you interview the patient. My contention was that the patient knows, because I know from personal experience that when I tell my provider something and then I look at my record, what’s in the record is slightly different from what I said–because there’s that handoff risk and risk for misinterpretation.
There’s a huge component about patient engagement in Meaningful Use–that the patient be a partner in their care. What research has demonstrated is that the more engaged the patient is, the more they understand their disease, the more compliant they are with the regimen, and, ultimately, the healthier they become. If the whole goal of all of this is to improve care and outcomes, patient engagement is one way to get there. That’s why, as part of Meaningful Use, everybody must have a patient portal–at a minimum.
Mohammad: How are they delivering that, because not every EHR has a patient portal, for example? How are people complying with that requirement?
Willa: The EHRs, the certified ones, will have one. That’s part of becoming certified. Not only did the providers and the organizations need to meet higher standards for Meaningful Use, the EHR vendors need to meet higher standards to become certified. Just because a vendor was certified at Stage 1 does not automatically mean they’ll be certified for Stage 2. Does that make sense?
Mohammad: It’s not just that you have to have the patient portal available, it has to be used, right?
Willa: Yes.
Mohammad: You have to go above a certain percentage level of usage by the patients before you comply.
Willa: Yes. There’s metrics for all of the standards. You can implement a portal and if nobody uses it, you don’t get credit for it.
Mohammad: Yes, exactly. How are people making sure the engagement is happening, the actual usage is occurring on the ground?
Willa: I think they’re tracking their metrics, tracking that it’s being used. I don’t think there’s a problem for patients using it. In fact, my expectation is that the public is going to latch onto health information technology far more quickly and with far less resistance than you might think. The plethora of mobile apps is astounding, and I think people are going to take more control of their health and their health records. I’m sure that’s music to your ears.
Mohammad: It’s funny, when we started, a lot of the physicians told us, “Look, you have to train the patients. They’re not prepared, they don’t understand how to do this.” We started doing that, and they wouldn’t let us finish teaching because they would just say, “Oh, this is just like Facebook,” and they’d click around and start doing it. We discovered that patients knew about Facebook, so they didn’t need any training, but physicians needed training in what Facebook actually was. As soon as you expose these technologies to the patients, they dive right in.
Willa: Exactly, yes. I think we’re going to learn from our patients.
Mohammad: How about taking that all the way? Obviously, from our perspective, we believe that it’s not just by engaging the patients as a nice and useful thing to do, but actually that it’s the engagement that drives the integration processes. How do you see people making use of the patient as the solution, rather than yet another problem, another tick box to go through?
Willa: Let’s see. That’s difficult, because who’s the ultimate coordinater of the care? We’ve never really been able to solve that. Is it the primary care provider? I have conflicting thoughts on this. The issues are: Who cares the most that the care is coordinated? Who’s the most invested in that, and that’s the patient, but the problem is, in the United States we have such an incredibly complex health care system that I, as someone in the health field, am actually ill-equipped to completely coordinate my care and navigate the system.
We’ve tried these various models, such as HMOs, and we’re starting now with Accountable Care Organizations (ACOs). I think the answer is still to be determined.
Mohammad: We find that, in the UK, it’s officially supposed to be the primary care provider, but the fact is that it still does not happen. The primary care physicians always complain they don’t know what’s going on with their patients. They don’t know what’s been happening when they have other providers, and you find that patients end up ill-equipped. They’re still having to do the joining up, telling people what other people have been doing. The theory for us was that the missing piece is having the data, and then they can be well-equipped to do what they’re having to do anyway.
Willa: I totally agree with what you said, and I believe that through electronic health records, the clinicians are going to get more of the data to be able to better coordinate the care. I see that in the hospitals. I recently did some research with nurses who went from an organization that had all disparate systems that didn’t talk well to each other, over to a one vendor solution, and I asked them, “How does this affect your work?” They said, “Well, the most fabulous part of it is I have access to all of the information. With a click of the mouse, I can get past hospitalizations, past office visits, and I can see what happened in the emergency room.” They had information that was never as easily accessible, so that the nurse was able to better assess the patient and better coordinate care. Maybe through health IT, it’ll be a shared coordination of care by providers and the patient, everybody will have all of the information. I don’t know, I’m just speculating here.
Mohammad: The final thing is where do you see ACOs in all of this? What role will they play?
Willa: We keep trying different models. Health care has gotten incredibly complex. We have diseases we’ve never had before. People are able to live longer with more diseases than they ever have before, and so how do we have this coordinated approach that, when you treat one thing, you don’t cause problems because of another thing? We keep trying different models, and the latest model is the ACO. I hope it works. I guess you can tell by the hesitancy in my voice that I’m sort of saying, “Okay, I’m willing to try another thing.” Clearly we haven’t solved the coordination of care problem up to this point, and if the ACO is able to stay focused on coordinating care so that patients get the best care that they need to improve their health, then I’m all for it.
When you look at what it says ACOS are, who could be against it? “Promote evidence-based medicine,” well, that sounds good to me! I certainly want anybody who cares for me to have the latest evidence.
The other piece that supposedly the ACOs are going to have is going to be the quality and cost measures. What are the measures? At different stages, what are the treatments? It’s these quality measures that we’ve never been able to do in an efficient way with paper records. If we have good data in these electronic systems, we could get really good quality measures, so that we can then have evidence-based health care and coordinated care. On paper, the accountable care organization sounds like it’s going to solve all the problems. I hope it does.
Mohammad: It’s been really great talking to you. Thanks so much, Willa!
Willa: Thank you for the opportunity.