Patient Engagement And Outcomes Improvement from the Patient’s Perspective

As someone who has worked in healthcare IT for the last 15 years, I have spent a lot of time thinking and talking with clients about the importance of driving patient engagement. Still, there’s nothing like a first-hand encounter with the healthcare system to test one’s beliefs and generate a deeper understanding of what it is we’re really trying to do with all this technology we’re implementing.

I came away with two conclusions. The first was yes, what we’re doing on a technical level makes sense as a means to improve the quality of care. The second was, in the end, it isn’t the technology that solves the problems; the technology is merely an enabler. It’s having people engaged at a deep level that provides the real solutions.

This particular episode started with some breathing difficulties that landed me in the emergency department (ED) at my local hospital. It was created by my chronic asthma coupled with pneumonia and a couple of respiratory infections thrown in for good measure. It was serious enough for me to end up as an inpatient for a little more than half a day.

Of course, being in healthcare IT, I wanted to understand more about what was happening and what the physicians and nurses who were tending to me were doing about it, so I started observing what they were measuring to judge my condition.

Two closely monitored parameters were my pulse (originally too fast) and oxygen saturation (originally too low). It occurred to me that I could monitor both of those parameters at home with devices that totaled less than a $100. I didn’t know if my measurements would have any value to my primary care physician (PCP), with whom I would be having a follow-up visit in a few days, but I thought it would be worth a try.

Once I was discharged, I purchased a spirometer and began checking my lung volume and oxygen levels religiously for the next 10 days, along with occasional pulse and temperature readings. Like a good technologist, I recorded those readings in a spreadsheet and built a chart to visualize my condition from day to day – similar to the approach Health Catalyst takes to analyze population health data, but on an individual scale.

spirotmetry readings

Spirometry readings over a one-month period showing my lung volume at exhalation (minimum) and inhalation (maximum).

I brought the chart with me on my next visit to my PCP, showed him the results, and asked if the data was at all helpful. It was, he agreed, and then he suggested I also record how I felt subjectively each day. In a very simple way we were now engaged in closed-loop analytics. I provided data, he provided feedback on that data, and together we made adjustments in the data gathering and output. That turned out to be a very valuable addition to my personal analytics measures.

Oxygen pulse

Pulse oximeter readings over a one-month period showing the volume of oxygen saturation in my blood.

During this extended episode, I felt good some days and not so good on other days. At times, I felt my symptoms worsening, and wondered whether I should go back to the ED or urgent care. In looking at my data, which I now understood, I could see that while my pulse may have been higher than normal and my asthma was causing issues, my oxygen saturation was fine and I didn’t have a fever.

At one point when my symptoms were worsening, I did a telephone consultation with the on-call physician who triaged my condition. This allowed me to forego a visit to the ED or urgent care, which is good because I have a high deductible on my health insurance (i.e., I have a lot of incentive to keep my care at the ambulatory level).

The longer I took these measurements, the more I understood, and the more I understood, the better decisions I was able to make. Yet despite the best efforts of myself and the physicians, the episode dragged out for six weeks. I did end up in the ED a couple more times, the last with a pulse of 145. It turned out I had a slow-growing bacterial infection. Looking back on the data, it made sense.

When I first went in, I was given antibiotics, but they were stopped shortly thereafter and my condition worsened. Physicians these days are reluctant to use antibiotics when they’re not absolutely needed because of concerns about creating increasingly resistant bacterial strains. Retrospectively, it was easy to see that, shortly after stopping the antibiotics, my condition worsened. When the third ED doctor put me back on them to see what would happen, my condition improved immediately.

Had I known to use my homegrown data that way, I might have saved myself some problems. Although the population averages can be valuable, the data generated by an individual can show more quickly and clearly where to make exceptions.

The Bigger Picture

This encounter with the healthcare system brought home some valuable points and reinforced some others.

  1. There is definite value in at-home monitoring of patients with certain conditions. Taking readings in the hospital or in a PCP’s office is important. But it’s still only a snapshot. If the goal is to reduce preventable admissions and shorten lengths of stay, gathering key data on a daily—or more frequent—basis can help show trends and shed light on the cause-and-effect of various treatments. If patients are engaged enough in their own health to gather this information, whether manually or through wearables, and physicians are engaged enough in their patients’ outcomes to look at that data, we can do a much better job of prescribing treatments and measuring their effectiveness.
  1. This sort of information-gathering in the home doesn’t require the use of expensive equipment or extraordinary effort. I used a spreadsheet, but could just as easily have used a piece of paper and a pen to record those readings and write how I felt. Every day there are more smartphone apps being developed that can be used to track all sorts of health information.All it takes is a patient who cares enough about his or her own health to record it some way, and a physician who is willing to look at it.
  1. It’s possible to shift the patient-physician relationship from the “paternal” model where the physician is all-knowing and the patient is a passive participant, to one where both sides work actively together. That came home to me during my interactions with my first PCP.When I saw him prior to landing in the hospital he wasn’t very engaged. He didn’t do any labs to get a sense of my overall health; he just asked a few perfunctory questions, gave me a quick inspection, and sent me on my way. Then this incident occurred and I realized it could have been prevented.

My new PCP not only took the time to review the data I’d gathered but also took great care to listen to my questions and provide explanations of what was likely to happen next. He even pulled out his old med school anatomy book to show me. My health was clearly important to him.

Engagement isn’t about technologies such as portals or emails. It’s about relationships, i.e., what can I do to help you help me? Relationships drive engagement, and engagement drives outcomes. As a society, if the patient is willing to do these things, and the physician is willing to offer the guidance and look at the information that’s generated, we can greatly accelerate our ability to transform healthcare. This, in the end, is what all these technological innovations are about.

Small Improvements Lead to Bigger Ones

Intermountain Healthcare’s Dr. Brent James says you shouldn’t build a system until you know what you’re building. In other words, technology isn’t the solution, it just enables the solution to work better. First, though, you must have a solution. That’s the point that often gets lost.

We often get caught up in trying to tackle all of healthcare’s challenges, or focusing only on core measures. But that approach can prevent us from making smaller improvements that lead to big ones.

To illustrate this point, in technology development there are two competing methodologies – Waterfall and Agile. With Waterfall, you’re looking for the big bang. There’s a lot of planning, documentation, and development that occurs until you’re finally ready for the grand rollout – a process that can take years. Then the software finally gets deployed and you discover that all the core assumptions have changed because of changes in regulations or our knowledge of the human body, or some other factor, and it’s back to the drawing board.

With Agile, instead of doing all that up-front work at a comprehensive level, you do a little bit of focused work, test it in the field, review the results, and make adjustments. This continuous cycle of implementation and improvement allows organizations to bring solutions to their users faster and adjust quickly to the ever-changing needs of healthcare.

It is also the driving force behind Health Catalyst’s Late-Binding™ enterprise data warehouse (EDW). Rather than requiring all data and rules to be defined up front, our approach allows it to happen as needed, making the data more flexible—and thus more useful—at the point where it is being consumed.

So it should be with driving engagement. Rather than attempting to tackle it all at once and develop the final answer, it makes sense to start small and then build out from there. Patients becoming engaged enough to take a few simple readings, or wear a simple device that does it for them, can drive huge changes in the way healthcare is administered down the road.

Extending Through All Dimensions of Engagement

My personal journey was about my relationship with my physicians and how I was able to help them help me. But the principles can be applied to all the dimensions of engagement.

For example, executives who are engaged ensure the strategic focus of the organization is on the things that matter, and that the entire executive team is focused on the same things rather than fighting one another to achieve their individual goals. On the supply chain side, when I go to a hospital, I marvel at the robots that package pills and help prevent adverse reactions as a result of improved processes.

The key is the organization at every level is striving to get to the same place and is focused on the next steps to get there. It’s a great way to do things.

Positive Outcome

In case you wondering, several weeks after this episode, while I wasn’t quite out of the woods, I was well on my way. I was feeling much better and confident that I’d soon be back to my optimal level of health.

Almost as important, I feel my little experiment was a success. It not only helped me help my physicians, it also helped me confirm that the approach Health Catalyst is taking to patient engagement, and to the use of technology generally, is spot on.


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