Ushering in the Era of the Empowered Patient

; Cheryl Pegus, MD, MPH; Maurie Markman, MD, MS; Gregory R. Weidner, MD; Michael W. Smith, MD, MBA, CPT


November 24, 2015

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Editor's Note: In September, Medscape held its first Medicine 3.0 town hall discussion featuring a panel of physicians who specialize in precision medicine and patient engagement.

During the patient engagement session, physicians discussed how digital devices, the sharing of medical records, and on-demand healthcare are empowering patients and the doctors who treat them. Panelists also offered suggestions to clinicians on how to better handle the onslaught of new data they're receiving.

This transcript has been edited for clarity.

Patients Taking Charge

Eric J. Topol, MD: It is a new day for patients. They are going to be generating much of their own data through mobile devices, including data from sensors (glucose, electrocardiogram) and some aspects of the physical exam (ear infections in children and skin lesions). Patient-generated data will include laboratory data. Smartphone labs are going to be very common in the future, rather than having labs done at a central facility or hospital or doctor's office.

Much of this is patient-based. How is this going to affect the patient-doctor relationship or partnership? How will we get to a new level of activation and engagement—what do we do with data security, privacy, and issues about ownership of data? These are the kinds of things we want to talk about.

Let me start with Cheryl. How do you see this inversion? In the past, it was doctor's orders. The doctor generated data from the patient. Now, patients are taking a lot more charge.

Cheryl Pegus, MD, MPH: Hallelujah; the time is here. I'm a cardiologist by training. But if you look at where we are and what we need people to do, we need them to focus on wellness and prevention.

To do that, they need tools that are easy for them to use and that they feel in control of. Those types of tools are the things that tell you, "Here's how much you walked today. If you take 1000 more steps (walk back down the street and pick up a paper and come back), you will make that." Those types of information are helpful to people in managing their health.

I use a lot of apps personally. I have an app for when allergy season is coming to remind me to start using nasal spray. I have a menstrual cycle app. I have an app that reminds me about my exercise schedule. I have an app that does flight tracking. I use all of them pretty easily, and they are all extremely useful to me.

Patients need to hear us say that these tools and products are valid. We need a system of validation. It might be US Food and Drug Administration (FDA) 510(k) clearance. It could be an organization that says that these tools and products are valuable for your health. What we have right now is a little bit of a Wild West of tools, and no one is aware of what is best or of which apps can be integrated into their electronic medical records (EMRs). That's a service that needs to be added.

Maurie Markman, MD, MS: I can say that there is no area of medicine that has seen more transformation in this than cancer. There isn't an individual in the audience who doesn't know the story of the radical mastectomy and—it seems like a nightmare, but it was true—the woman who would go in not knowing that she had cancer and would wake up and find out that her breast and her lymph nodes were removed. That's how she found out. There was no conversation. We have come so far from that, and in an incredibly positive way.

We are also learning that outcomes in cancer are related to recurrence risks and to such issues as weight, exercise, and stress. You can document all of this. And these are areas that the individual has incredible control over, if they choose to. Obviously, there is the biology of the cancer. But there are enormous things that we can have an impact on, and I don't mean the doctor. The doctor can say, "You should lose weight. You should exercise." But that and 50 cents gets you a cup of coffee.

Dr Topol: You talked about the lack of data sharing. It wasn't so many decades ago when doctors wouldn't even tell patients that they had cancer.

Dr Markman: That's true. There are some hospitals that, in the past, wouldn't even say that they had a cancer center or even a breast program. They would say "breast health." They wouldn't use the word "cancer." That's true.

Dr Topol: Now, we have people saying, "I want my cancer sequenced." It's a little different.

Dr Markman: It's very different. Another conversation that occurs in my world is the question of giving survival data. There is a debate about whether an institution should report its survival data because, at the scientific level, so much is driven by the biology of the disease, not by what an individual or provider does. It's all true. It doesn't matter. The patient wants the outcome data, and you provide it and explain what it means.

Savvy Apps and Stacks of Data

Dr Topol: I'm glad you mentioned that because just last week, in Harvard Business Review,[1] the Dartmouth-Hitchcock group published a very interesting study of a tool that used patients' individualized data to predict outcomes that could be expected from spinal surgery. The outcomes were based on the patient's own data and clinical characteristics, not on the entire population of patients undergoing back surgery. Don't you think that's where we should be heading—informing people at the highest level, not just at the level of population mass medicine? Greg, what are your thoughts about this?

Gregory R. Weidner, MD: This is an era when people are much more empowered to understand things about every aspect of their life. Before they make a purchase, they read dozens of online reviews and see what others have experienced. Yet, with our healthcare, we put our trust completely in the hands of others to guide us down the path. Access to information, to personally generated data, and to providers and peer-to-peer support puts people in a position to take ownership of their care in unique ways. If you can translate that into a healing relationship and have a true collaboration, shared decision-making, and understanding what that patient desires in terms of outcomes, it will lead us toward an engaged patient with positive outcomes.

Dr Topol: What do you think about patients generating their data, having algorithms to interpret it, and then deciding what they want to share with their doctor, if they're going to share their data at all. Where are we headed with this?

Michael W. Smith, MD, MBA: I'll tell you a story. As I was doing a little research for this panel, I talked to some of the employees at WebMD to get some insights from the WebMD audience.

I got the best insight from one of the employees at WebMD. Basically, she had been struggling with her weight for years. She had been working very closely with her doctor, telling her doctor everything she was doing—all of the lifestyle measures she had taken. They had done absolutely nothing. The doctor was just telling her to exercise and eat right.

She strapped on an activity tracker and started using a food tracker and documenting everything, and she took all of that in to her physician. My first question was, "Oh, my God, what did your doctor do with all of that?" I was thinking that he probably went screaming from the building.

Keep in mind that most of these apps will compile the data into a summary for the doctor. It's not that much information. Because of that, they were able to take action, and today, she's 20 pounds lighter.

So you can actually use the data today for real health-improving behaviors, but the doctor has to be open to it. We need to educate patients so that they understand that they can't bring in reams of data. Going back to the beginning of online health information, doctors were terrified that patients were going to be coming in with stacks of information. What were they going to do with it? But that is not the case. The apps are savvy enough that they can boil it down to doctors' reports. We created one called Healthy Target. It creates a doctors' report for the patient to take in to their doctor, and it can lead to real behavior change.

New Data, New Tools—Are Doctors Keeping Up?

Dr Topol: That is a precursor to what this could evolve to. What we have now is a very serious case of disillusioned, overworked, and overburdened doctors. Just a couple weeks ago, Time magazine had an exposé about suicide in doctors.[2] It's at an all-time high.

The question is: By shifting responsibility more to patients and processing the data to the minimal distillate that would be shared with doctors, rather than flooding them with data—is this realistic? Or are we just hallucinating?

Dr Pegus: Doctors today, particularly those who are in practice, have seen a shift in their environment. We, frankly, have not really kept up. How do you now manage that?

EMRs got thrust into the relationship. We didn't say, "By the way, there are some algorithms here. We are going to set up a committee and make sure that for the treatment of diabetes, or hypercholesterolemia, we give you some easy flags to help you manage this going forward." What happened was that it showed up, and we didn't say, "Here are the changes and the infrastructure support for that."

So the stress felt by doctors is not necessarily that their patients are giving them more information. It's that the infrastructure to provide care as you have always wanted, with an engaged patient, is not yet there to support it. That's what patient engagement will allow us to do.

There is nothing like a physician hearing that they have diagnosed someone or they spent two extra minutes printing out some health information on diet to say, "It's great that I got that feedback," because today, they don't get that feedback. Part of patient engagement will help a provider feel satisfied but will also help them feel as if they know the areas in which their patients need help.

On-Demand Healthcare

Dr Topol: Another big movement going on right now is telemedicine, which is empowering because now, one can just tap on an app, and you're talking to a doctor instantly at 2:00 in the morning, and the payment for that is the same as a copay. Or you can Uber a doctor to your house. This is happening in many cities throughout the United States—on-demand medicine.

Greg, where is that going? Is that movement just a passing fancy, or has it got legs?

Dr Weidner: It has legs. It's not going away because, in a disruptive way, it is providing access and convenience and lower-cost options. Do we still need to figure out exactly how to do this in a way that preserves appropriate quality and appropriate levels of medical care delivery? Yes, of course.

But those technologies and what they enable are here to stay. Whether it's synchronous or asynchronous interaction with your healthcare provider and healthcare team, or just internally with your own health, a big part of engagement is making it easy for folks to do the right thing.

If you ask someone to come back for their antidepressant follow-up at 4-6 weeks, to drive across town and take time off work, sit in your waiting room for 40 minutes, and then get in to be seen for 8 minutes, they may not do that. But if you give them the opportunity to tap on an app and connect instantly with you or another clinician (paraprofessional, health coach, etc), they will.

So engagement needs to be seen as something more than just engagement in the episodes of care as we define them in our bricks-and-mortar structures. Engagement is about engagement in one's health, and that occurs in the white spaces between visits and encounters. Telehealth and other solutions give people the opportunity to do that within the fabric of their lives rather than on the terms that are defined by the traditional healthcare system.

Dr Topol: You picked up a very critical concept, which is that until now, we practiced largely one-off medicine. We took measurements or labs at one moment in time during a visit. In the future, we can have continuous real-time streaming of data in the individual's real world. Whether it's blood pressure or glucose, it can be transmitted with telemedicine or with an in-house consult. You get a whole different look.

Who Owns the Records?

Another part of the story is patients' control of their data. Mike, I want to get your sense about this. Today, the patient comes in or makes a televisit and pays for that visit, but they have no work product. I'm not aware of any other sector where you pay for something, and you have nothing to show for it.

Then you have the issue of the doctor who says, "Well, I created the record, so I own it." And 70% of US doctors are unwilling to give copies of their office notes to the patient. Where are we going with this?

Dr Smith: We hear a lot about this from our users. They tell long, drawn-out stories about huge inefficiencies in trying to get their hands on what they rightly feel—and I think a lot of us in here probably feel—is their information. They should be able to get access to it.

Certainly from the doctor's standpoint, the question is: How do I get the information to them? In the past, there have been a lot of resources associated with getting that information to them. Even today, with EMRs, how do we get what is in an EMR and translate that to a patient? It's a very interesting dichotomy between what patients think and what many doctors think. I think it will land on the patient side of things when it all hashes out. We just have to figure out how to bring that all together and make that transition seamless.

The Democratization of Lab Tests

Dr Topol: The Laboratory Corporation of America, one of the two largest lab testing entities in this country—talk about democratization of medicine—has said that consumers can order their own lab tests. In the state of Arizona, there is also a new law. What about consumers ordering their own lab tests? What are your thoughts about that?

Dr Markman: My concern is solely with the interpretation of the results. That's one of the issues, and it's a legitimate issue. Some might say, "I don't want them to have the information." You can take simple lab tests, such as a hemoglobin level. What is the normal range? What does it mean? Why is this woman's hemoglobin level low? Say she is iron-deficient. Does she know that? Does she understand that? These are questions of interpretation.

So the answer is not that you can't have the information. You have to have a way of explaining it.

Dr Topol: But that's a whole new look for medicine, isn't it?

Dr Markman: It's a whole new look. You can always go a little further than that. If a patient wants a lab test, the question ought to be: Why do you want that test? Maybe it isn't the right test for what the patient is looking for.

Dr Topol: We're all familiar with the Angelina Jolie effect, which, in fact, was quantified in a current paper in the journal Cancer.[3] That was a test that would cost $3500-$4000. And now there are new entries (Color Genomics and Veritas Genetics) that cost $250, or less than $200, for sequencing not just BRCA genes but also many other familial cancer genes. Of course, that comes with an interpretation. Do you see that as a part of the democratization of genomics?

Dr Markman: There are some examples—I won't mention any names, but one company said (and the FDA called them on it), "You can order a blood test that will tell you whether you have cancer."

Well, that's simply not true. It's not a question of whether it should be available, if it works. If the statement is factually incorrect, you can't make that statement. We do have to go that far. If someone claims something that's not true, then no. But if there is an effective test, and someone says, "I want to do it myself," it's like a pregnancy test. What's wrong with that? It's a test that tells you something very important. If a patient wants to have information, what's wrong with it?

But it could be the wrong test. It could be a claim that is simply false. And it's the interpretation—we have to figure out how to help people interpret these tests. But it shouldn't be that the doctors own them.


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