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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 ( 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.

A Patient’s Perspective on Accessibility – Carly Medosch

Posted on May 13, 2015 I Written By

The following is a guest blog post by Carly Medosch. You can find more about Carly on her blog and on Twitter @carlyrm.
It seems like every day there is a new use of technology available to assist patients. The just-launched Apple Watch already includes several health and fitness features, and the company shows promise for more scientific breakthroughs with the ResearchKit for iOS. There are smartphone apps and websites for patients to research medication costs, identify pills, and find help from patients with the same diagnosis. Some patients can visit their doctor virtually using telehealth platforms.

This week I have been reading Regina Holliday’s memoir “The Writing on the Wallwhich details her husband, Fred’s, struggle to get appropriate care for his stage IV kidney cancer. In the book, Regina mentions going home from caring and advocating for her husband in the hospital, caring for her two young boys, and then spending hours on the Internet doing health research. Regina Googles words the oncologist says during his quick stop by the room. She uses Facebook and other websites to coordinate support care for her children. She researches medical and legal issues large and small.

You may think that it is great that just a wondrous resource exists, but I am saddened by the fact that this hard working woman, a wife, mother, caregiver, art teacher, and toy store manager, was forced to pull a night shift as a medical researcher. This was precious time that took her away from her dying husband, her young children, and her own important need for proper rest.

I am upset about these things because they have affected me, too. At age 13 I was diagnosed with Crohn’s disease. This year my chronic illness turns 21 years old. I’ve lived far longer as a sick person than a well one. I spend my spare time doing advocacy work supporting patients.

It is endlessly frustrating for me to hear very smart people, with excellent academic pedigrees, and gobs of VC funding, tell me about their exercise app for dogs. Or their plan to let patients research endless information about their doctor’s conflicts of interest. Or a map for patients to find outdoor activities to increase public health.

These are products created by people who do not understand illness. Originally I thought they just didn’t understand chronic illness, the endless parade of doctors, medical appointments, medications, and bills. The piles of paperwork and the endless to do lists, to which we now add the incessant intrusion of electronic alerts.

But these products are not created for the acutely ill, either, not really. Even if you are a perfectly healthy adult a vehicle may strike you as you cross the street. In that example, are you going to research the best doctor, the hospital with the best safety score, the emergency room with the shortest wait time? No. If you are able to do anything, you will try to call 911. Most likely someone else will call for you. You are powerless and all the technology in the world won’t help you.

I believe technology could help us. But I think there’s an image problem. I don’t think it’s seen as sexy to market a product for the chronically ill. Companies are trying to sell an image, and that image is easier to sell if it’s world-class athletes, women in high heels, and health. A product is presented as making regular people feel powerful, in control of their lives and their health. You can use your fitness tracker to become healthier. It will reward you for taking the actions of healthy people. A fitness tracker could easily be tweaked to offer a warning for people that need to limit their steps. Some people with chronic fatigue syndrome are advised to get a small amount of activity – a sweet spot that’s “some” but not “too much.” A fitness tracker could be programmed to encourage more activity up to a point, and then warn the user to slow down as the step count grew too high. But the marketing campaign for that type of product would discourage sales growth.

We are given products and features that are billed as empowering, but seem to translate to just being more work. More items on our endless to do list, more things to squeeze into our maxed-out budgets, less time with the people and activities we love. The products are more sleek and beautiful (which is quite an improvement), but they are rarely designed for people with vision issues, or arthritic hands, or jittery movements. The more we need technology, the harder it is to grasp.

Recently I was struck with a terrible migraine. At home I would go to the clinic across the street, receive an injection, and go home to sleep it off. I would lose the day, but I would only pay about $30 with my insurance. The treatment was in my chart, so although I may not see the same clinician each time, they could easily look up what to administer.

This time I was in Chicago, a city I’d never visited. I took out my smart phone and used Google Maps to see the locations of walk in clinics. Google Maps has a rating feature for businesses and I could see this one has several stars. My vision was blurry, and my body was weak and racked with nausea, but I was able to call one. With some difficulty I asked the wait time and if they did injections for migraines. The voice on the other line asked me if I had the medicine. Of course I didn’t have the medicine! If I had it, why would I go to a clinic? Then they asked what the medicine was called, and that is when my brain decided it had functioned enough. I stammered. I paused. I couldn’t think of the word and I couldn’t think of the other words to explain the confusion was caused from my medical distress. Powerless, I hung up.

I walked to a first aid station in the building and was advised to go to the emergency room. I was assured that the hospital was close and good. The man in the first aid station gave me an ice pack, which I pressed firmly to my head as I staggered out to find a cab.

The world spun and my stomach churned, but eventually I got to the hospital. I arrived to a packed waiting room full of people who looked like they had been there a long time. The care was poor, but it seemed due to overcrowding and underfunding. The staff was kind. I was in the loud, bright waiting room for hours. I’ve received a bill for over $100 from the hospital, and I suspect I will receive another from the physician who eventually saw me.

There was no app to tell me the wait times, but I’m not sure I could have endured the cab ride to a hospital farther away. I could barely use my smart phone to make a call, so there was no way I was going to be able to research facilities, or prices. It was difficult for me to seek help from family and friends, as both light and noise made the pain worse, and anyway I was so far from home.

When people develop technology for patients, they often don’t even consult with a single patient. It is my dream that this not only be completely reversed, but that a variety of symptoms and conditions be considered when developing and testing the product. Can the product be used by a 40 year old healthy man, can it be used by a child with smaller hands, can it be used by a person with poor eyesight, can it be used by someone in severe pain, can it be used quickly in an emergency? Are your product solving actual problems and enhancing life for your customers, no matter their health status?