People are providing more and more data toward their own care. We now have patients, especially those with chronic conditions, contributing towards their health record via interfaces, wearables, and other devices. This is a very different set of data from the clinical data physicians are used to today. Traditionally, we are used to either doctors, nurses, or medical devices giving us reliable data about the patient.
However, in this new world, there are a million flowers of different data types blooming. I like to call that feral data because it’s everywhere, and because of the wide variety of consumer devices. How we manage all this data — and how we tame it — is creating a bit of a conundrum for the healthcare space.
CMIOs and CMOs specifically need to think about the new types of data that are coming. We should be asking questions like the following: How are we going to make all this data useful? How are we going to use the data to our advantage to provide personalized care for individuals by giving that data the right weighting within decision-making?
How Useful Is the Data?
I have a friend with Crohn’s disease who monitors his step count. Over time, he noticed that his stride length had started to get shorter. It was taking more steps than usual for him to get to work, but he was also walking less overall. He went to his doctor and pointed that out. It turned out that he was having a flare-up and had adverse indicators in his blood. My friend pointed out to me that he hadn’t yet felt the flare-up, but his step count told him that he was starting to become unwell.
His story stands out to me as proof that patient-provided data is valuable. I know doctors who say that we have a duty to use all the information that we can safely use. We have a duty to find ways to safely make big data part of the patient ecosystem.
Right now, the information from personal devices is limited to good lifestyle data that can give us an idea of trends for individuals. We probably wouldn’t use that information as it stands to make medical decisions, but it is still quite useful to look inside somebody’s lifestyle.
Concerns with Patient-Derived Data
At this point, most EHRs don’t have the data structures for the full patient set of data. The healthcare industry hasn’t yet thought about what provenance or history we need for that data. We need to know how and under what circumstances that data was collected.
These are details like the type of machine that recorded the information. For example, was the patient using a device that he or she bought from Walgreens, or was it a medical device that was given to the patient? Was it a wearable device like an Apple Watch? And if it was a wearable device, what version of the driver was being used at the time? What software did it run?
In the future, all these questions will be important when deciding how much weight certain data carries. What happens if we find out that there was a bug in some software? What if the data was used in an inappropriate way that could cause clinical risk? Knowing what specific data came from that software would enable us to disregard that data, unless we can find out the circumstances from which the data came.
What Can Be Done?
To start in the right direction, we need to work better with patients and patient groups. This digital relationship is currently happening in cases of chronically ill patients. But I’ve seen that happen only with groups where there’s already a good relationship between the patient and the clinician. We have to be able to industrialize this relationship so that all patients who need to report data back can do so whether or not they know their clinician.
Providers also need to work with their EHR vendors to work out how to use that data safely within the major systems. Together, we could start to define standards and agree on how we’re going to work with that data.
Finding a Shared Space
To really move the needle, healthcare IT vendors need to work with technology manufacturers. There is a huge focus on consumer devices for healthcare and wellness. This trend was very apparent at the January Consumer Electronics Show in Las Vegas. The technology industry is trying to encourage people to collect data. But unless CIOs, CMIOs, and healthcare organizations start moving towards that space as well, we will not know what information we can or cannot use, and we’ll end up not being able to use it at all.
Currently, if you’re from Apple, Google, or Fitbit, you go to the Consumer Electronics Show. If you’re a CMIO, you go to HIMSS or other similar conferences. We need to find a middle ground for both sides to come together and have those discussions. In the future, I can see KLAS being one avenue for bringing these two industries together.
Getting It Right
Right now, we can take steps to store this data alongside our EHR with as much provenance data as we can get. This will help us understand how and where the data is collected. On top of discussions around consumer electronics, we need to have healthcare system-wide conversations or an international conversation about how we regard some of these data types.
If we can get things right, I see big data helping us reduce the burden on the system. If people are using appropriate devices and monitoring at home appropriately, we can reduce the need for regular rote appointments. For instance, a diabetic needs to be seen every six months. But there could be no need for that with home tests. Using home tests, the diabetic would need to be seen only once every year or two.
Providers can get to the point where they don’t have to use many resources. We can manage every patient in the optimal way using the optimal number of resources to assist. I believe that the consumer revolution will be the thing that makes personalized and precision care possible because it will give us enough data to do so. But we’re not quite ready to deal with that data today.
A critical voice in global healthcare IT issues, Rachel Dunscombe is CEO of NHS Digital Academy, and is the Global Lead for KLAS’ Arch Collaborative. Most recently, she was CIO at Salford Royal Group in the U.K., where she still serves as Strategic Digital Advisor. To follow her on Twitter, click here.