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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?

What Are You Doing for #NHIT Week? Does It Matter?

Posted on September 15, 2014 I Written By

John Lynn is the Founder of the 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 and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Today is the official start of National Healthcare IT Week (#NHITWeek). Do you have any plans for #NHITWeek? Are you doing anything special? I personally don’t have any huge plans, but I do have one post for #NHITWeek that I hope people will enjoy. Watch for that coming later this week on one of the Healthcare Scene blogs.

If you want a full run down of official #NHITWeek activities, EHR Intelligence has put that together. HIMSS seems to be the real driver behind the week from what I can tell. I’ve never been to Washington during #NHIT Week, so maybe that’s why I haven’t ever seen the impact of the week. I guess I’m skeptical about what it really accomplishes.

What I have enjoyed is following the #NHITWeek hashtag on Twitter. There’s a lot of activity on the hashtag. You just have to filter through the #NHITWeek fluff and marketing. From the looks of Regina Holliday’s tweet, there are quite a few people attending the event she’s attending:

Plus, you get to see other craziness like this QR code connected to Casey Quinlan’s health record that she had tattooed on her chest:

Not to mention, you get links to great resources like this one from Steve Sisko:

I think that Steve has the right spirit for what #NHITWeek is for me. It’s about connecting people in the space. It’s always great when we can share the work that’s being done across the spectrum of health IT. I’m always amazed at how many people are working so hard day in and day out to make healthcare IT work.

The Walking Gallery of Healthcare

Posted on June 3, 2014 I Written By

John Lynn is the Founder of the 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 and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I saw this Walking Gallery picture at Health Datapalooza and I wondered how many of my readers knew about the work that Regina Holliday started with the Walking Gallery. I don’t think I’d ever written about it before.

I was trying to find a way to give readers an understanding of the Walking Gallery, how it works and why they’re doing it. I found this video which does a great job of doing all of that:

The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

Always fun to see someone from the Walking Gallery at the conferences. At one point I asked Regina what it takes for someone to become part of the Walking Gallery. As I recall, she said that you had to be worthy and have a story. I imagine I’d need a jacket as well ;-). One day I hope to have one of my own.

#HIMSS14 Highlights: Enthusiasm for Patient Engagement

Posted on March 7, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

Patient engagement solutions abounded at HIMSS14, though their levels of sophistication varied. Like many other commentators, I felt this was a big jump in interest over last year. It will be interesting to see if this level sustains into 2015, and how the same products will mature come HIMSS15 in Chicago.

The theme of engagement was heard most loudly in several educational sessions I attended. I was happy to pre-register for an Orion Health / ePatient Dave event; and make time at the last minute to attend a live demo of the new Blue Button Connector, and a brief presentation by Regina Holliday, founder of the Walking Gallery.

I believe ePatient Dave (aka Dave deBronkart) has been at this awhile, but the Orion Health lunch and learn I attended was my first opportunity to hear him tell his story live. And what a compelling story it was! It certainly resonated with the audience of about 75, and I couldn’t help but wonder why he wasn’t up on stage in a “From the Top” session. The theme that ran throughout his presentation and audience questions was the need for online patient communities, and the subsequent need for providers to let their patients know about them. Websites like and were brought up as interesting resources.


I headed from there to the exhibit hall, where HIMSS had set up a very nice learning gallery, complete with comfy chairs, swivel desktops and a nice presentation area. Lygeia Ricciardi spent a good 20 minutes going through the new Blue Button Connector website, which you can find here: While not a true, live demo, she did offer several screenshots, and was very forthcoming about the ONC’s plans and goals for the site. Apparently they see it as almost a marketing tool, similar to the Energy Star label you see on just about every appliance these days. The Blue Button symbol will hopefully come to be recognized as an endorsement of easy access to patient data. She was frank in saying that it’s not a panacea, but will be a powerful tool in the hands of consumers, and developers who choose to take advantage of its open source code and bake it into their own apps.


It is literally a connector. The new website simply allows patients to connect to third parties that may house their medical records, such as payers, pharmacy, labs, physicians or hospitals, immunization registries and health information exchange portals. Knowing I already have a provider that participates in Blue Button via their athenahealth patient portal, I went through the “Physician or Hospital” steps to see how the Connector worked. I didn’t see my physician listed, so I’ll likely send an email to The Connector is in beta right now, and Riccardi mentioned they are very interested in gathering as much user feedback as possible during this process, so I encourage you to check it out and drop them a comment or two.

I was back at the Learning Gallery the next afternoon to hear Regina Holliday of the Walking Gallery speak, and she did not disappoint. Like a preacher that just can’t stay in the pulpit, Regina passionately talked about the power patients have when they come together and demand change. It was my first time hearing her speak live and I was not disappointed. It was a powerful sight to see close to 30 Walking Gallery members stand up at the end of her session and show their jackets. Why they were not on a larger stage in front of a capacity audience is beyond me.


That’s it for my notes from HIMSS. Next up on my conference dance card is the Healthcare IT Marketing and PR Conference, taking place April 7-8 in Las Vegas, and hosted by I hope to see you there!

HIMSS #NHITWeek e-Book

Posted on September 18, 2012 I Written By

John Lynn is the Founder of the 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 and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I was happy to be invited to participate in the HIMSS #NHITWeek e-Book. They just recently posted the HIMSS ProBook (PDF) which includes mine and 17 other health IT experts responses. It’s nice to see my name alongside wonderful health IT pros like Regina Holliday, John Moore, and Eric J. Topol (to name a few). You can find my responses on page 26-27 in the e-book or I’ve posted my responses below.  I kind of got this last minute, so my responses are a bit off the cuff.  I’d love to hear your thoughts or your responses to these questions.

1. How has the conversation about health IT evolved and / or progressed since last year’s National Health IT Week?

With the announcement of meaningful use stage 2, we’re starting to see a real dividing line between those healthcare organizations that plan to show meaningful use of a certified EHR and those organizations that plan to stay far away from it. All but a few smaller hospitals are getting on board with EHR because the EHR incentive money is so large. In smaller practices, many are still afraid that EHR will slow them down, decrease their productivity, and cause them more headache than the value it will provide.

With EHR incentive money dominating the EHR discussions, ACOs are also drawing a lot of attention and discussion in the world of health IT. Everyone seems to realize that if we’re going to make ACOs a reality, then it’s going to take a heavy dose of well implemented health IT. The increase in discussion happening around health data warehouses has really increased and more and more health organizations are trying to find was to pull value out of all the data that’s now being stored in their health IT systems.

Mobile Health is still the wild wild west. Mobile health apps are popping up in every corner of the mobile world. However, we still don’t have any breakout mobile health app superstars which have captivated the imagination of the world. Considering the number of apps, one of them is bound to reach that point soon.

2. What are the major challenges to hospitals and healthcare providers as we move toward a new century of health technology?

I’ve often said that health IT is the great magnifier. Health IT will take the good and make it better, but it will also point out the bad just as easily. What I think the implementation of health IT has done is caused many healthcare organizations wake up to some of the problems they never realized they had. Overcoming much of the built in healthcare problems is going to be the biggest challenge to the implementation of health technology.

Along similar lines, the biggest built in problem in healthcare IT is the walled gardens which create incredibly difficult to access data silos. Much like a President once famously said, “Healthcare, take down your walls.” Unfortunately, there doesn’t seem to be any authority that can make such a strong statement. Breaking down the walls surrounding healthcare data is going to be an almost insurmountable challenge.

One other major challenge we’ll see and we’re starting to see already is how to handle the literal flood of healthcare data. Floods of data will be pointed at health care providers from HIEs, PHR’s, medical devices, genomics, etc. Creating IT systems which process all the data into a digestible format will be key to the future of healthcare.

3. How can we increase adoption and meaningful use of health IT in hospitals and health systems across the U.S.?

I think we need a fundamental change in how we define meaningful use. The current definition of meaningful use might provide benefits to healthcare in general, but I know very few hospitals and health systems that see value in what HITECH has defined as meaningful use.

The hospitals and health systems I talk to see meaningful use of an EHR as improved patient care, improved revenue integrity, and streamlined processes. This is a much different definition of “meaningful” use of EHR. Once EHR vendors achieve this type of meaningful, healthcare won’t know how to live without it.

4. What advice would you give to the next generation of health IT leaders and their role in improving our healthcare system through advancement of IT?

My advice is that “when you’re a hammer, everything looks like a nail.” To make the comparison, just because you’re an IT leader doesn’t mean that IT is always the solution. Sometimes the solution is to fix the process first. Applying IT to bad processes just makes things worse. Be thoughtful in when and where you implement health IT. IT has tremendous potential, but only when applied the right way to the right problems.

5. What’s one thing the general public should know about health IT that they do not already, and what’s an easy way for them to get involved?

I believe the general public doesn’t realize the power they yield. Patient demand is likely the most powerful force in healthcare. If enough patients requested online patient scheduling, we’d see more doctors providing online patient scheduling. If more patients demanded e-visits, we’d see more e-visits. Patients need to stop accepting the current method of care delivery and start caring more about the healthcare services they receive.

6. What’s one health technology you are most excited about?

I’m absolutely fascinated with non-obtrusive health monitoring devices. It’s amazing how much health data can be collected with a simple cell phone camera. Everything from pulse, blood pressure, and cholesterol can potentially be monitored with a digital camera. Plus, we’re just at the beginning of the health monitoring that will occur using a person’s cell phone.

7. Fill in the blank. Health IT is _________________
Health IT is integral to the future of healthcare.

Those were my responses. You can find the other 17 responses to these questions in the HIMSS ProBook (PDF).

EMR Security, Afghanistan EMR, and Regina Holliday EMR Video

Posted on August 26, 2012 I Written By

John Lynn is the Founder of the 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 and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Time once again for our roundup of interesting tweets from around the EMR twittersphere. We really go around the world with one of these tweets. Hopefully you find them useful and interesting.

I don’t think most of you know that I’m also working on a redesign of my websites. It’s still got a little ways to go, but I think it’s coming together nicely. It’s going to add some features I’ve wanted for a while and make the design look a lot better. I’ve had the current design for more than 6 years, so it was time. One of the best features of the new website is Twitter embeds. I can’t wait!

Without further ado, a few EMR and health IT tweets with some of my own commentary:

I always love when people talk about the huge EMR security risk. When you look at the breach list and the healthcare data security issues, EMR barely shows up. There are so many other security issues with medical practices that are much more vulnerable. Not that we should give EMR security a pass, but EMR security is likely one of the most secure things in a medical office. So, this is good advice.

I always love to hear how the military uses EMR. They use EMR in some of the most challenging places imaginable. I think we can learn a lot from their experiences.

I think this is a really interesting contest by ONC. I’m looking forward to see more of the videos that are created. My fear is that most of the videos will be EHR companies that push their power EMR users to make something. We’ll see how it turns out.

A Rosa Parks for EMRs

Posted on May 7, 2012 I Written By

Priya Ramachandran is a Maryland based freelance writer. In a former life, she wrote software code and managed Sarbanes Oxley related audits for IT departments. She now enjoys writing about healthcare, science and technology.

From the Healthcare blog, this week there’s a super interesting post on Regina Holliday, a widow turned patient rights advocate.

First some background about Holliday: She’s a widow with young kids, her husband Fred died after weeks of suffering from from cancer. She is now taking her patients’ rights advocacy before the American Heart Association by protesting the lag in how soon patients can see their medical records. Holliday’s personal experiences inform her protest.

From the post:

When [Hollidays] sought access to [Fred’s] electronic medical record, the hospital responded by saying “we must wait 21 days and pay 73 cents per page to see the story of his care. Then they told us we could go home to die.”

Per Meaningful Use Stage 1 guidelines, patient records must be made available within 4 days. Holliday is asking for access within 24 hours. American Hospital Association (AHA) in all its wisdom is asking for 30 day lag.

The one issue I don’t see addressed either by Holliday nor by Michael Millenson in his post is the question of cost. Who will bear the cost of making records available immediately? Will it roll downhill to the patient, or become a shared cost between patient and provider? Still I hope Holliday succeeds, it is a radical idea worth pondering over.