Instead of a Weapon For Health Care Improvement, Monitoring Becomes Another Battleground

Posted on September 3, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

If you wax enthusiastic about “patient engagement,” or work with health and fitness devices, or want to derive useful data from patient monitoring in the field, or–basically–read this blog for any reason at all, you should check out a recent study in the Journal of Medical Internet Research. It warns about psychological and logistical factors that trip us up when we try to get patients to monitor their vital signs.

The paper has a catchier title than most: “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions (citation: J Med Internet Res 2015;17(8):e202). The paper summarizes results of a qualitative study, focused not on the purposes or benefits of monitoring, but on how patients react to it. The messages from the patients cited are pretty eye-opening.

Doctors and public health officials know very well that most people with chronic conditions suffer from more than one. Just thinking about their meds, visits to the clinic, bills to pay, and the ways the conditions constrain their lives is more than enough effort for most of the patients. And yet on top of that we pile glucose readings, weighings, diet logs, and other measures with joyful assurances that they will lead to improvement in the patients’ lives.

Monitoring can be depressing. You can glibly say that denial and avoidance is worse in the long run, but people need to get on with their lives in the face of debilitating conditions. So it’s not surprising that many patients wait until an acute phase of an illness (feeling faint, for instance) before they use the monitoring devices.

We like to think of data as empowering, and sometimes go even further to say that it introduces objectivity into a field like health that is fraught with wrong impressions. But monitoring does not allow patients to put emotional distance between their egos and their medical problems. Quite the opposite–monitoring raises moral issues that turn patients off. They can easily feel shame or guilt for departing from their diet and exercise regimes. Because the link between behavior and vital signs is often unclear, patients have all the more reason to get frustrated and abandon monitoring.

Data can also get between the patient and doctor, whittling away the trust and empathy that’s so necessary for clinical improvement. Patients get annoyed seeing doctors putting so much stress on the numbers, and perhaps not paying attention to extenuating circumstances or important non-quantitative information reported by the patient.

Still, the study reported successes too. Some patients seem to get into the spirit of living deliberately and taking control of their devices to achieve positive change. It’s not clear from the study what makes these patients succeed.

The authors recommend that we find ways technologies can reduce burdens on patients, not increase them. (Would be nice if technologies acted the same way on clinicians, although this goes unmentioned by the authors). The paper doesn’t offer ways to achieve this desirable outcome, except to automate data capture more effectively. We can imagine some other ways as well.

Perhaps patients could be asked to treat monitoring as a personal research project. How does my glucose go up or down during the hours after a certain kind of meal? Does pulse change after exercise? If you engage patients’ curiosity, they may turn into Quantified Selfers.

Regular messaging has also been shown improve compliance–for instance, in one study about medication adherence and another about appointment scheduling. Messaging should be done intelligently and be tailored to the patient. It may convey the clinician’s concern to the patient reward her for sticking to a monitoring regimen.

The health care field is crying out for more data. To get meaningful data–and meaningful results in health care–it must have more meaning for patients. This is perhaps the leading user experience (UX) challenge in health care.