Patient-Generated Data Empowering Patients, Democratizing Medicine

; Paul S. Teirstein, MD; Cheryl Pegus, MD, MPH; Joseph Wang, DSc


May 25, 2016

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Editor's Note: In this segment from Medscape's Medicine 3.0: Patient-Generated Data event, held in March in San Diego, panelists discuss how the growing volume and complexity of health data generated by patients stands to affect the doctor-patient relationship.

This abridged video and transcript have been edited for clarity.

Eric J. Topol, MD: Let's get to the really critical matter, which is the doctor-patient relationship. How does patient-generated data [affect it]—does it reboot it? Are doctors put into a different level of responsibility or of function? What are your thoughts? Is there going to be a change because of this, or is this just a lot of talk and not really going to have any impact? Do you want to start with that, Cheryl?

Cheryl Pegus, MD, MPH: It's already having an impact for many of us who already have an EMR at our health systems; at NYU we use EPIC, and there is a patient portal. And in many of our practices we have about 60% of our patients who are already utilizing it, so they are asking questions. They are also getting their lab results. We send out lab results within 72 hours with an explanation to every patient who comes in to our ambulatory setting. So that is already occurring, and I think for many of the physicians it's actually had a benefit in the relationship.

There are things that are clarified. A lot of times the patients leave the office—and we'll talk a little bit about health literacy, I'm sure—but the patients leave a lot of times and they didn't fully understand everything. There is now an opportunity to ask an additional question once they've gone home and tried to digest it, or, I like to say, they've gone home and have had to explain to someone what they were told to do. They now have an opportunity to do that, so that has really helped.

The biggest concern, however, is training the staff and making sure your office now functions differently. If the expectation is that the first time that the data that [a patient] would like to talk about is going to be presented is when you are in the exam room and the doctor comes in, the doctor then is coming in with, "Well, here is what you said you came in with and now you have that list." There has got to be a way from the minute a patient enters in your registry [that it's asked], "Are there other things that you would like to speak to the doctor about? By the way, we have our NP or other personnel who can assist with that."

So you manage the expectation, the doctor is aware of what is occurring, and the patient is aware that it is not all going to get done in a 10- or 15- or 20-minute visit. Those are the things that are really, really critical for this to work.

Dr Topol: So, Paul, what do you see? Is it going to be a reformatted doctor-patient or patient-doctor type of a relationship?

Paul S. Teirstein, MD: I've been thinking about this now for a few minutes while you were talking. The first thing I thought about was that there is this certain type of patient who comes to my office; they sit down and they have a notebook—sometimes a looseleaf notebook or usually something that they can add to—and it's got tons of charts. And the charts are LDL cholesterol, which will be on the y-axis, and the x-axis will be the time and their dose of their statin. And then they will have their blood pressure and their heart rate and all kinds of metrics. And this is without wearables; they are just keeping track of it. As soon as they open it up I say, "What kind of an engineer are you?" Because I know that it's an engineer. It's always the engineers. And what I think to myself is, "Well, I better settle back because I'm going to be in here for a long patient interaction. It's going to take a little more time."

But the questions generally are very good, so it's usually interesting and it's usually kind of fun. It does take longer to talk to them because they are not going to say, "Whatever you say, doctor." They are going to want to question everything. And I find that enjoyable.

Now, I'm wondering about the other side of that—the patient who doesn't really know what is going on and has this information but just doesn't know how to interpret it and asks you the [hard-to-answer] questions. Sometimes you want to say, "Well, first you have to go to medical school and then do a residency," because they are asking questions that are very difficult to answer in a 30-minute patient encounter. That patient is going to be hard; that is going to be a harder interaction and it might cause some frustration on both the patient's and the doctor's part. That is maybe where you might be able to have some place to steer them that won't take your whole day. So I think it depends on the patient.

Dr Topol: You just mentioned that you spend at least 30 minutes with a patient, but typically in the US, for a return appointment it's 7 minutes and for a new visit it's 12 minutes. And patients are fed up. They have to spend 2.6 weeks to get an appointment with a primary care doctor, instead of using the phone with an app to talk to the doctor immediately or even have one to their house. In California especially, most patients take a lot of supplements, and part of that is because they are rejecting the traditional medical establishment, the paternalistic medical community. They want to do their own thing. And this is another extension of that, if you will; that is, now they are getting data-fied. Do you see this rejection of paternalism as part of what may be driving this whole front at all, Cheryl?

Dr Pegus: Yes, that is a huge part of it. Again, I think we change things a lot for patients. I mentioned this before: First it's "We are going to treat your LDL"; then "No, we no longer want to measure LDLs"; then "Nope, now we have a new algorithm." Changes are confusing for the doctors and the doctors express that frustration back to the patient. They are like, "You know what, I Googled it and here is what I might be able to do."

Also, patients feel more empowered than they ever have before. To give some credit to WebMD, you can punch in some of the symptoms you are having and you will get something that says, "It could be this." That is very empowering.

Dr Topol: Self-diagnosis is happening at a rate that is really zooming.

Dr Pegus: You kind of go, "Okay, now I may have some idea," and it may help you decide either "I better get to the doctor tomorrow"; or "You know what, maybe in 4 weeks, if that is when I can get in."

Or a third option, which we haven't talked about: how patient-generated data are being utilized. People will go online and get a video visit with a doctor about how they can utilize it. You are seeing that a lot more; again, integrated health systems and some other health systems are setting those up, particularly to capture those types of incidences. So the smorgasbord of how you interface to receive your healthcare is growing.

Dr Topol: Yes, absolutely. Just to add to your point, today you Google or WebMD, or whatever you are searching, and you search about some symptoms that are subjective. Tomorrow you are searching with your data that you generated, which is specific to you. It will make these searches a lot more powerful and specific. It is data-fying medicine, making it available on a democratic basis to all, not just to doctors and the medical community.


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