At the Connected Health Symposium in Boston I attended a session entitled “The ‘e’ is for Engagement: the Latest Research on the e-Patient Revolution” led by Susannah Fox (@SusannahFox). At this event, Susannah released new patient self tracking research for the first time. The results of her research showed that:
- 60% of adults track their weight, diet, or exercise routines
- 1 in 3 adults track health indicators or symptoms
- 1 in 3 caregivers track their loved ones health indicators or symptoms
- 1 in 3 of those that self track use paper and pencil to self track
- 1 in 5 of those that self track use technology (this matches other research on website visitors using self tracking tools)
Of the most important results in Susannah’s research is this:
- 50% of adults are actually self tracking in their heads
These patients are using methods such as how many stairs they can climb before getting winded, how far away from the closest restroom they are willing to venture, and just how good they are looking in those skinny jeans lately to self track their health. All of this information is stored in the collective memory of patient conscious. Now that’s a data interoperability problem if I have ever seen one.
So, how are we going to create tools and interventions that are as seamless and easy as keeping track in our head? We do this in two ways in my opinion:
- Create technologies that acknowledge and respect the patient experience. With 85% US adult adoption of cellphones (i.e., a self trackers), I believe the answer mostly lies in mobile health. We have the potential to revolutionize the data we collect by creating self tracking tools that are not just another thing patients need to build into their schedule. Instead, we need to utilize the patient user experience to make it easier to complete self tracking tasks these patients are already doing. I recently used an example from the grocery store where my shopping list was fully integrated into the store’s weekly circular where my items were also put in order of the aisle in which those items were placed. Can we make following diabetes or cancer protocol easier for patients to follow? Can we make tracking blood sugar and blood pressure easier to do? Yes, we can.
- Patient Self Tracking Data Collection. Currently two-thirds of self trackers do not share their data with anyone. Of the 1/3 that do share that data, only half say they share that data with their clinician. Why are they not sharing with their clinician? Well, most of these patients simply can’t because there is no mechanism for this data exchange. For example, since my heart and brain don’t communicate very well, I have to take my blood pressure several times per day. It once was the case that upon visiting my doctor she would just ask me “How’s your blood pressure been?” I would have just had to remember, or perhaps show some notes I had written down halfhazardly on my own. Instead, I took initiative. I got a blood pressure cuff that connects to my iPhone. I also have the Cardiio app, which reads my pulse through the iPhone camera. I then send this information to my doctor (though she still has difficulty getting it into Epic). First off, treating patients as manual ETL in this fashion is just not acceptable and certainly doesn’t make it easy to collect self tracking data. Second, there seem to be questions that patients are more willing to ask Dr. Google than they are willing to ask their physician. One example that Susannah mentioned was that for patients living with constant migraine headaches the most common question is, “Am I going to die from this.” This is not, by far, the most common question that clinicians are actually hearing from this same group of patients. Before all else, we need to answer the question “Why are patients willing to ask a blank box on a screen what they are not comfortable asking their clinician?”
Stay tuned for my next post on Observations of Daily Living (ODLs) where I will discuss new methods for the collection of patient generated data.
