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Patients Designing Their Own Health Care Journey

Posted on October 15, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

All across health care we see examples of patients starting to drive more of their health care decision making. This as all sorts of good and bad consequences, but I think it’s fair to say that this train has already left the station. I think that most of this shift is coming thanks to a massive increase in high deductible plans and easily accessible health information.

As part of the next evolution in patient involvement in their care, I was fascinated to discover patients designing their own health care experience in what they’re calling a d-Patient (a take off of the popular e-Patient). The movement is inspired and led by Katie McCurdy and her story.

The second in the series of D-Patient stories comes from Logan Merriam. Logan has Crohn’s Disease and had been battling this chronic disease for many years when he came to this realization:

I’ve realized that I am the only person who will prioritize the symptoms I care about, and I need to be responsible for solving them. And as it turns out, I’m also the foremost expert on my illness.

He then goes on to describe how he was able to better communicate his health challenges to his doctor:

At one point I was frustrated by a particular medication that was ping-ponging me back and forth between its side effects and my Crohn’s symptoms. I tried, clumsily, to explain the rollercoaster I was experiencing without much success. At the time I was getting my degree in graphic design, so finally I opened Adobe Illustrator, drew a graph of the situation, and emailed my gastroenterologist to show him what I was feeling:
Crohn's Disease Roller Coaster

This image immediately helped his doctors to be on the same page as him and start looking at options to solve his problems. Plus, he says that it forced him to codify and understand the problem himself.

You can go read the rest of his story here, but it leads to Logan designing his own health app called Flaredown including a successful Indiegogo campaign. What great examples of patients deciding not to wait. They’re starting to take control of their health and that’s a great thing. I love patients who are respectfully involved in their health care. The best doctors I know love it too.

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.
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?