COMMENTARY

Patient-Generated Data: How's a Doctor to Interpret It All?

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

Disclosures

November 24, 2015

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Editor's Note: Medscape's Medicine 3.0: Precision Medicine and Patient Engagement event was held in September in New York City. During this portion of the town hall-style discussion, attendees asked questions of the expert panelists on how to better engage patients and how a more engaged patient might help the clinician in their own practice of medicine.

This transcript has been modified for clarity.

Was the EMR Price Tag Worth It?

Eric J. Topol, MD: We have a problem that with the Affordable Care Act, about $40 billion were used to encourage doctors and hospitals to use electronic medical records (EMRs). Was this a good decision, Greg? Where do we stand with the liberation of the data to people?

Gregory R. Weidner, MD: Thanks for serving me up a softball, noncontroversial question. I'll go back to what I said earlier about meaningful use. It was a critical, foundational piece of our digital infrastructure in healthcare. Did it focus on all of the right things? Did it achieve all of the results we hoped for? That's open for discussion.

But it did accelerate the digitization of healthcare so that we could have the potential to do the kinds of things we are talking about. In this section of the panel, we're talking about patient engagement. If you look at the trajectory of the high-level meaningful use goals for stage 2 and stage 3, it was engagement of patients and families. Things like patient portals and the release of data to patients with timetables assigned for that go a long way to trying to achieve those goals.

Is it everything we need? No. It's a start. But at least it gets us moving in that direction. We talked a little bit about what patients could see from the EMR. In addition to a typical patient portal where one can see their health record, there is the concept of open notes, which is rapidly becoming an evidence-based intervention. People who have access to open notes use them, and they share them with their family members and caregivers. The data suggest that patients improve their adherence with medications and their understanding of their care. There are some evolving data and some increasing studies of medication and healthcare safety with respect to access to open notes. The envelope is really being pushed on this, even into behavioral health and other areas where you would think giving people access to their medical records and all of their notes isn't necessarily advisable. We're challenging all of those assumptions.

If you look at where we were and where we are now, especially as it relates to patient engagement, we have come a long way. There's still a long way to go. The next generation of tools has to be more facile, more user-friendly, more consumer-grade, and better at data, and we have to move more quickly.

Dr Topol: That was a very diplomatic answer. Maybe you should run for office.

Let's go to Michael about this point because, as the medical editor of WebMD, you are more in touch with the consumer base than any of us here. What is it going to take for consumers to not want to be the Rodney Dangerfields and say, "We are going to have all of our records from all of our providers—and not just access to them. We're going to own them because they are rightfully ours." What is it going to take? Do we need a HealthSpring? Is it ever going to happen?

Michael W. Smith, MD, MBA: Absolutely it will happen. Consumers—I can tell you from what we hear—are extremely challenged with how to make that happen. Even with their individual doctor, they don't know how to get hold of their health records or whether the doctor or the office—it's really not even the doctor—but if the office says no or keeps stalling, they don't know where to turn. They just don't have any place to go to get help, one on one.

I don't think that this is going to come specifically from patients—the consumers. Somebody is going to have to step up more globally and help all of us figure it out. I don't think that anybody is so steadfast that absolutely patients cannot have their records. It's just when they get them, what does it mean? It's all of the logistics around that. Someone is going to have to solve that problem for both sides to be happy with where we are with it.

The Privacy Conversation

Dr Topol: Today, we have a terrible problem with privacy and security of data. This is precious information. Some have declared that privacy is dead. But, on the other hand, having your medical data sold and exploited is intolerable. So who wants to pick up on this serious problem that is yet unaddressed?

Cheryl Pegus, MD, MPH: It's the reason that physicians and patients have not run into this. Every month or other month, when we hear of other data systems being hacked into—it is one of the questions that patients ask. How safe are my data? What are the systems that are in place? How are we managing that?

The same type of cyber security has not been applied in healthcare to date. Some has been applied in military organizations. But in healthcare, if you look around, you see that meetings have been held about the systems coming out in 2015 and 2016, as we upgrade. What is happening with the data storage at that time? Where are data warehouses? Are they off-shore?

You have those conversations with people who are installing the systems and looking at healthcare data. And many of those conversations aren't even on the top 10 list of what is occurring. I think that having that conversation openly gives patients a sense of trust. It is the question that they ask the most. And it's one we haven't yet addressed.

Dr Topol: There are two ways that are necessary to address it. One is legislation, because there is none. There have been wonderful White House white papers about how this could be legislated, but no action has been taken. The other ways are technological. Neither of these have gone forward.

Relationship-Driven Care

We will now take questions on patient engagement from the audience.

Question: You said: Who's going to interpret all this information; who's going to help these patients? I know that a lot of these big insurance companies have nurse advocates that patients can call. Have they looked at the patients who have called in, and do they have better outcomes? Has this reduced costs? Is that a viable option?

Dr Pegus: From the insurance perspective, the answer is yes. They are cost-effective. I'll give you an example. If you look at the top five conditions in the United States, they correlate with the top high-cost conditions—cardiovascular disease, diabetes, maternity care, low back pain. We find that many care management programs are population-based today, not individualized. We have seen good return on investment in being able to decrease costs and improve quality metrics—because you are charged against that.

For some of these programs, when you form that relationship (and they can be face to face or telephonic), you are able to direct patients, in whom you are picking up, for example, signs of early depression, into the right triage tree.

Many employers today are purchasing not just health benefits for their employees, but they are purchasing these programs. It's because they are seeing benefits from them. From all levels, we see some nice opportunities. A lot of these data have been published.

Dr Weidner: And there are transformative primary care models out there, like Iora Health, which leverages nonclinician health coaches to develop culturally specific, empathetic relationships with patients; and by so doing, they are able to identify the factors that affect the patient's health.

You can follow a care protocol that says that if their blood pressure is not controlled, then step up to the next medication. But what you are missing is the reason they weren't taking the first medication—some combination of social, economic, and personal factors—and you can uncover it through the use of a relationship with a health coach or other provider. There are cost savings that aren't necessarily driven by the protocol but are driven by the relationship.

We have to get better. We have talked a lot today about team-based care. We have to get better at putting the right people in front of patients and developing relationships with patients so that the patient feels cared for in the entirety of their lives—including in those white spaces between their encounters and interactions with the traditional healthcare system.

Copilots or Geese, Patients Take Flight

Dr Topol: The Faster Cures group published an interesting article[1] that said that patients need to be upgraded from passengers to copilots. Obviously, not all patients want to be copilots. But surveys suggest that the vast majority do. Is that where this is heading?

Dr Weidner: Our team uses the "flying V" analogy. If you look at geese flying south for the winter, they leverage the aerodynamic benefits of flying in a "V" shape. The physics escape me, but the visual is clear. The concept is that as they fly south, the goose flying at the point of the V changes. One goose will fly as the point of the V, leading that team south until the leader starts to get tired. Then that goose will fly to the back, and someone else will take the point (lead) position.

We like to think of that in our team and with the work we do as an appropriate model for patient engagement because there are times when the patient is going to be at the point of the V. At other times, because of personal or other factors, they don't have the strength or the wherewithal to be the point of the V. At that point, it's appropriate for their primary care provider, specialist, health coach, or behavioral health provider to slide into that V position and let them go to the back and catch some rest.

But all the while, the team, of which the patient is a key part, is moving toward the goal together. So copilot, flying V, whatever model you use, it's a collaborative moving together where, at various times, you'll have different folks taking the lead and taking the ownership. Does that make sense?

Too Much Information, Not Enough Understanding

Question: I use a lot of tests with my patients—the single polymorphic nucleosides and genomics that are usable now. Then, I have patients using such tests as 23andMe, and they come in with pages of results and ask, "What do I do with this, and what do I do with that?" I try to explain as best I can. Where do you find that line with patients between what is usable, what can be implemented, what patients can use to help themselves, and what is just good to know and store in the back of their heads? Or none of this is useable, and you can't worry about every little result on these new tests that are coming out.

Dr Topol: That is the pragmatic issue—there is too much information, but what's actionable? Maurie, what do you do?

Maurie Markman, MD, MS: The tsunami is here. The idea that we will be able to stop this information flow is absurd. We will not. I mentioned the companies that are putting out the tests that are simply wrong and should not be allowed to do it. But if a company provides risk information—unless you can say that it's not accurate—the patients want it. And we have to figure out how to help them interpret it. It's very difficult. It's very complex. Percentages vs relative risk vs absolute risk, and what do you mean by lifetime risk? I'm 42. Or I'm 21. What does lifetime risk mean?

The question is how much time—how many hours in the day—does a primary care physician have to do this? I'll go back to the previous question about teamwork. With an individual practitioner, it's tough. But within a group, you might have someone who spends a lot of time doing this and thinking about it.

Dr Topol: The master explainer.

Dr Markman: The master explainer. Various groups have come up with ways to help people visually look at questions of risk—you can look at absolute risk and relative risk. I love the papers that are beginning to come out in which they are talking about this. You can tell the patient that 1 out of 200 people will have this disease and show a visual of that. That's going to be a lot easier. And then it's not just heart disease. It's diabetes and cancer. It's all on the same printout, and they say, "Explain it to me please. I know my visit is over, but please do it anyway." It's very tough.

Dr Topol: The question will be: Can you make great data visualization tools and educational materials that everyone can understand, so we aren't relying on having to spend a lot of time? There are some challenges, and we have seen some good examples. Michael, you touched on that earlier. But we need a lot more very successful teaching tools, right?

Dr Pegus: But there is opportunity there. The company 23andMe used an intermediary business model that translates raw data into something that's algorithmic, easy to use, and available for you as a physician. Anyone listening out there, it's an opportunity to develop those types of products and services and begin to standardize.

Dr Topol: That is an excellent point. We've seen it. It can be done. Going back to Greg's earlier point, it's the complementarity between physician communication and these other tools.

Tools to Improve End-of-Life Decisions

Question: I'm a hospitalist, and so I see a lot of patients at the end of their lives. And a lot of times, we don't know their wishes, and it makes a huge difference in how we navigate their care. Can you comment on any of the existing tools that are available that could help in these situations that have incredible economic and emotional costs to our society?

Dr Topol: This is a very big area, which is underrecognized. This past year, there has been a lot of interest after the publication of Atul Gawande's book, Being Mortal, and other initiatives to raise consciousness about how we need to tackle this and have the directives and plans in place to avoid the situation that you described. Who would like to comment about this?

Dr Markman: This is front and center in the cancer arena but not unique to cancer. It's a wonderful example of the need for tools to help doctors, patients, and families. Not every family can deal with death and dying on their own. Not every doctor and not every team can deal with it.

But there are strategies—videos or other approaches, or even the idea of the information coming to the home on a regular basis. A practice or organization could purchase these tools. I can visualize a situation in which there could even be a regional group that is available to talk, whether it's through video conferencing or other strategy, whenever the individual or family needs to talk to someone. You may not be able to do it. Your team may not be able to do it. But maybe there is someone who can do it.

It may literally be something as simple as having someone watch a video that explains how to deal with death and dying, or maybe having another family talk to them. This is very difficult, but I see a great opportunity for a variety of tools to be made available.

You're a hospitalist. You're working very hard. You're taking care of patients. You're dealing with the medical issues. You don't want to deny families what they need, but you may not have the time or necessarily the expertise to do it. We could think of a variety of these strategies that could be helpful to the patient and family.

Dr Weidner: There are some solutions in the marketplace attempting to address that very problem in ways that leverage virtual tools for engaged patients. We've started looking at some of them. I don't have enough of an insight at this point in our evaluation to give you any recommendations, but I'm happy to speak to you about it afterwards.

Dr Pegus: And Medicare is looking at advanced care planning, making sure that it's something that physicians do.

Dr Topol: And that it's reimbursed.

Dr Pegus: And that it's reimbursed. Physicians don't do it now because it takes time. It's like me checking off at the DMV that I'm an organ donor. Some of these conversations need to happen earlier, when the patient is well. Have the conversation when people are saying, "Yes, those are things that I should talk about and think about now." Could you imagine going in to see your doctor, and you're complaining about a skin rash, but part of that prevention, that contact, with your physician is being asked about some of your prevention issues? The physician might say, "By the way, I see that you are an organ donor. Here is some information that I would like to share with you."

Then after the physician has done all of that great work, we will still need EMRs to communicate with each other so if the person is not at NYU, but ended up going to another hospital, and they are critically ill, that hospital has the document. These are all different steps that all need to be completed.

Dr Topol: Along those lines, they are not so much reliant on the hallowed EMR, but rather if each individual would have their own record. It's part of their story—whether they are an organ donor, what their end-of-life directives are. And all of these other things are incorporated and always available instantly; that's really vital.

Taking an Inevitable Path Beyond Patient Engagement

It has been a delight to have this conversation with this group of leaders with fantastic perspective. I've learned a lot from them. We're really fortunate that Medscape brought us together for this kind of futuristic look at medicine.

We're going well beyond patient engagement. This is the basal de minimis. We're going to a much more activated, charged state; the democratization of medicine. It's an inevitable path.

Perhaps one of the greatest outgrowths of this, which we have touched on, is that when people willingly share their data (when they are given the highest level of assurance that it will be maintained securely and privately), then we can go to a level of medicine that we have never seen before, when we build a knowledge resource that can help each individual when they have a particular condition—(either one they have already developed or one they want to prevent)—by having the entire world's population to draw from.

If we can get 1.6 billion people on Facebook for social purposes and 1.5 billion people on Truecaller for mobile phone numbers, surely we can get billions of people to help each other for healthcare in the future.

Thanks so much for joining us for this session. Thanks again to Medscape and WebMD for bringing us together and to this terrific group of panelists.

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