Should Patient-Generated Data Be Included in the Electronic Health Record?

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


April 21, 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 weigh in on whether patient-generated data should be included in a patient's electronic health record (EHR), as well as some of the complexities involved in integrating this data.

This video and transcript have been edited for clarity.

Eric J. Topol, MD: Should patient-generated data be included in a patient's EHR? I want to ask about that, and I want to ask our group about that.

It's generated by you—it's on your device which you own. And of course it could be lots of data; before long, you are going to have all of your vital signs, blood pressure, every heartbeat, generating terabytes of data in a week or two. Why should that go in the EHR? Should it or shouldn't it? What do you think, Paul?

Paul S. Teirstein, MD: Yes; as long as it's accurate, it is not going to mislead people—why wouldn't you want to have access to the data? It is also going to have to be able to be analyzed and displayed efficiently because there is going to be a lot of data. But it's your data, and I think you should have access.

Dr Topol: You want to surrender it to the health system?

Dr Teirstein: Well, I don't think you should have to, but I would be willing to; I don't have anything that I don't want people to know about.

Dr Topol: So you are a "yes" with all of the data that you wish to include, but you still make the call?

Dr Teirstein: Yes. I would like to make the call and even about what drugs are prescribed that are in my electronic data. I would like to have some control over that—more than we have now.

Dr Topol: Cheryl, what about you?

Cheryl Pegus, MD, MPH: There are a couple of concerns. One, everybody talks about data provenance. Is it coming from the patient? Is their device standardized so that the information you are getting—if, for example, you are doing your blood pressures at home—are we sure that that machine has been standardized for that day so that the reading that you are getting is actually accurate? A doctor might get a reading of 90/60 and there may have been something wrong with how the machine was set up, and it may cause a doctor to act on it. Data provenance—do you know that it is coming from the patient, are you sure that the device that is generating it is accurate, and are you sure about the tracking of it?

A lot of times when data come in to an EHR, it actually could be coming from another physician. It could be coming from your pharmacy system. So there are multiple data points for how data are coming in, and I think we need to be very cautious about making sure that the data provenance and the data guidelines are set up so that it's accurate. A lot of times it's easier to have data come in and make sure that it's clean data before you integrate it into your entire system, to make sure there are no viruses or other things that occur. And so I do think that EHRs need to have some type of governance or systems that utilize that to make that happen.

Dr Teirstein: Maybe just an asterisk that says that this is patient-generated data and therefore it may not be as reliable.

Dr Pegus: Yes, it may not be. The other thing with data coming in is that you need to have a system that says you are analyzing that data. So there needs to be some way that the patient is aware that if you sent data in at 5 AM, we only read it at 3 PM, or else you have a gap of someone thinking they will be getting feedback. So the guidelines, not just from a liability perspective but from a patient-doctor relationship, need to be very clear. I think both of those areas, data provenance and what our guidelines are and how we are utilizing the data to provide care, are very unclear. There are definitely no national standards. Institutions are only now beginning to look at what they will need to put into place for that to occur.

Dr Topol: Here is the problem. None of us as patients go to one doctor or necessarily one health system. So, what record are you going to put it in? That's one problem. Number two, Cheryl brought up the point that to go into a health information system, this is a nightmare for the chief information officer. They don't want this data. They have a hard enough time dealing with the data that they can't deal with today. The hallowed, sacrosanct medical data of today is non-interoperable with these different proprietary systems, and you have different providers. Why shouldn't there be a personal record with all of your generated data on devices that you own, and then you make the call. So when you go to the doctor you say, "Would you like to see my data?" What about that model?

Dr Teirstein: I love that idea.

Dr Topol: You like that model? Then you are changing now.

Dr Teirstein: No, because we spend so much time trying to get patients' records, it is such an annoyance and a headache. We have angiograms; some of these are big files. And it would be much better for the patient to have it. It has to be something that I could navigate because I can't learn how to use EPIC every time I sit down with a different patient and it's a different system. So that has to be worked out where it's easy—touchscreen-enabled. There is a lot of time and energy and money spent in trying to pull together other physicians' patient records; they are incomplete and not accurate, and you've got pages that are out of order. There really has to be another way. It seems to be a no-brainer that the patient should have their own secure medical record.

Dr Topol: Cheryl, what do you think?

Dr Pegus: I see this as a business opportunity, as the entrepreneur in the group. One of the things that you really want is to have a system that allows data to come in from a patient that they are aware is a secure place, and there is actually some information given back to the patient. So many of you remember the IOM Report on health literacy[1] in 2004 which, for me, remains one of those things that I always have to remember. In half of the people, 90 million Americans, it was found that they had really poor health literacy, and it had nothing to do with economics, nothing to do with education. I tell this story all the time: I have a husband who is an MBA, and every time he goes to the doctor, he calls me from the doctor's office and says, "Hey, why don't you talk to my wife?" It's an issue. When we say that people are getting a lot of information, even for well-educated people, health information is complex.

What we really need is, when patients have patient-generated information—and by the way, this is my business idea and you guys can't steal it—it goes to a couple of companies or a company that is taking in the information and giving back clear, health-literate, appropriate information to the patient. That company also has a two-way integration with the electronic medical systems that allows them to know it's secure data and that data are being put in, but that the patient has said, "Yes, I am okay with this being sent in." And for the things that they are not okay with being sent in, we at least have it stored in a place where, if they had a question, they could ask someone.

Dr Teirstein: How is a company going to give feedback to a patient or an analysis of their data when it's often controversial?

Dr Pegus: It depends. I mean, companies do it now, right? We heard about LabCorp and Quest—patients can order a test and actually get a report back on what it means. There is a disclaimer at the bottom that says, "Do not do anything until you follow up with your doctor," but it is now actually pretty okay to do that. There are lots of other companies that do it and, again, they are FDA cleared. So it is already occurring. What is not occurring is someone giving some proactive guidance on how to help manage your health. There are newer companies—you guys may know of them: Rejuvenan and others—that are doing that right now. They are taking in patient health data, they are taking in patient self-reported data, and they are giving them guidance, the care management organization.

Dr Teirstein: So a nurse probably calls them.

Dr Pegus: They are nurses, they are certified diabetes educators. There is usually a physician.

Dr Topol: And what is the business model? Do the patients have a subscription to it?

Dr Pegus: The business model for a lot of this comes back to who is paying for the healthcare. A lot of employers are the ones that are buying healthcare for their employee population. They are hiring these services to have them do that with the data. You guys probably know of many companies; you sometimes get a letter from a standalone company saying, "Hi. One of your patients is a member of this service or program, and we are in contact with them." Those companies are calling them, reminding them about medications; they are calling them and telling them about their weights and reminding them to do their preventive screenings.

The product exists, but what doesn't exist for those companies is that the patients themselves don't own it. Their employers started it. There are opportunities for the patients to have that same type of service. That is the revenue model.


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