Way back in 2009 I found myself at the Chicago HIMSS conference watching the Google presentation of their PHR, Google Health. As a fan of Google products in general I was interested in what the presenter had to say. His message was that we, as consumers, could be responsible for our own health data and that Google Health was a repository for that data.
[Their] “goal was to create a service that would give people access to their personal health and wellness information. [They] wanted to translate their successful consumer-centered approach from other domains to healthcare and have a real impact on the day-to-day health experiences of millions of our users.” -Google Blog June 24, 2011
What really got me curious about their PHR was, just weeks prior, I was at an Endocrinology specialty go-live, where at one point I was asked into an office to assist a provider. The provider presented a thumb drive and asked “what do I do with this?” The thumb drive being the data that the patient had collected from his glucometer. At the time there really weren’t any tools were we could capture that data directly into the EHR without manually entering those results. This was frustrating for patients and providers alike. Patients having collected that data and providers who would like to see that data trended in a flowsheet to make decisions on patient care.
I was curious at the time if a PHR could be the solution. I wondered if a patient would take the time to enter in their data and if so would that data be available to their providers. A few short years later Google announced the retirement of Google Health stating:
“We’ve observed that Google Health is not having the broad impact that we hoped it would. There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts. But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people.” -Google Blog June 24, 2011
But now there is a shift. Patients and providers alike are looking at Patient Generated Health Data [PGHD] in a new light. What we are seeing is that patients are now at the center of their care. I spoke to a friend and colleague working on this topic, and she put it to me this way:
“If I am nervous at the doctor’s office and my blood pressure is elevated, well then it is hard to trend that information with only one or two points of data during the visit and the provider may prescribe treatment for hypertension. However, if I am keeping a record of my BP and know that I have a history of low blood pressure then, I may choose not to take the prescribed medication.”
I myself have been wearing a Fitbit to track my steps and heart rate for a better understanding of my own wellbeing. Doing this inspired me to start capturing my food intake. I’ve got an app where I log every meal. The amount of data I can collect about myself is greater than the data my doctor will ever collect on me. Even if you’re going to your doctor every month, you still have the ability to gather significantly more information yourself at home.
Interoperability still remains an issue. Increasingly we have apps and devices to capture our data and, there’s a lot of us that would like to have all my data sent to one repository. I may want to change my apps or I may update my devices in time and if all my data’s in one place, it’s not that big of a deal to change my apps.
“There are a lot of people out there today with activity monitors and consumer medical devices, but that data is not currently being used in the clinical context,” “Why is that? That’s because there is no structured reporting of that data. Physicians don’t want to take a lot of data in without using it properly.”
PGHD on its own can be a valuable source of information, but ideally it should be combined with EMR data. When this is done providers have a more complete, of the overall picture of the patient. We are still struggling on how to capture and use of PGHD. Some of the struggle, may be due to a lack of standardized data and best practices for implementing PGHD into the clinical workflow. Ideally we need a system in place where patients can monitor their vitals and transmit that data through their phone and securely transmit that data to their electronic medical record. That kind of mechanism is very valuable.