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Where’s the Humanity in Healthcare?

Posted on September 8, 2016 I Written By

The following is a guest blog post from Snarky Frog. Yes, that’s her real name. Ok. You got us. No, it’s not her real name, but that’s how she wants to be known online. Who are we to judge her if she loves frogs and snark that much?
Snarky Frog
There was a time when I blogged. There was a time when I wrote about living with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome). There was time when I wrote about having a parent who…well…if I were to explain in this piece, I would lose all credibility.

There was time when I thought people would read what I wrote. There was a time when I thought people would care about how my father died (Yes hospital in CT, I do hold you accountable for that).

There was a time when I thought people would care that when I was half conscious after fainting, a nurse took it upon herself to show me what happens to drug users – apparently folks who use drugs have no rights to sexual dignity.

I wasn’t using illegal drugs then and I don’t now. The more you read about POTS patients, the more you read about how strange our symptoms are. I still argue my symptoms don’t matter, the way I was stripped of my humanity did and still does – turns out nobody really agrees with me. Guess you can do whatever you want to drug users (I’ve since learned this again and again via EMTs and others). As it turns out, you can also pretty much do this to patients you think are faking their disease.

There was a time when I blogged about how I couldn’t understand that a patient advocacy org promoted things one day, disagreed with them the next, then went back and forth for years. By the way, what’s still up with that? Will exercise heal me or is it IVIG I need or is it small fiber neuropathy all around? Oh… you need to study more – well hate to tell you patient group, if I need IVIG, exercise won’t save me. Though, it honestly may help.

There was a time in life when I questioned things. There was a time when I wrote. There was a time I cared. I probably still do all of those things but I do all of it less.

Nobody cared what I wrote so I stopped publicly blogging. The things I tried to get folks to care about – I was on my own with. I wrote but my writing was for me. I took my blog pieces down one by one.

By that time my writing abilities were somewhat gone after I had taken a few too many hits to the head. Things became mostly jots on google docs. My posts are now long gone into the ether and even the WayBackMachine can’t find them.

Right now I could write about not having a single doc who knows much about any of my diseases. I could write about having 3 different specialists who each understood different pieces of EDS / POTS leave their practices in the same year. I could write about fighting with hospital billing offices. I could write about how a doctor who played a role in quality affairs at an academic medical center could literally get nowhere with my insurance when he tried to get me some assistance. I could write about the discussions I have had with the insurance co regarding how much my POTS costs them (about 90-100K in 2015, likely to be more this year) and the various suggestions I’ve given them to lower those costs. I could write about how they respond with the fact that none of those suggestions, while cost saving to them, are part of my plan, and as such, are not things they can or will do.

I could write about my grief over a friend. I could write about the things I saw happen to her the one time I visited her in the hospital. I could write about how I wanted to help more but couldn’t.

I could write about system failures. I could write and I could write and I could write some more about how every single part of the system has failed me and has failed my friends. It might not all make sense but I could write. The irony is the thing that matters to me the least is the specific cost yet that’s what people care about.

I care about the fact that my friend died.

I care about my losses as a human being. I care how much of my human dignity I have lost and how much has been taken away from me since I started getting sicker. I care about the fact that I will likely lose my job (days off, their having to worry or perhaps lack of worry about my falling on the job, my requests for accommodations etc.). I care about the fact that I will never be able to do what I wanted to do with my life – PhD, fieldwork – yeah, not a chance.

I care about the fact that I will eventually get so physically injured by a fall, by EMTs, by hospital staff, or other that I will no longer be able to get out of bed. I care about the fact that I will forever wonder whether one of these things will kill me, and if so, when.

I can give you the health care cost numbers but they don’t matter to me. Ask any chronic illness patient for his or her own costs of care and you’ll find the same thing. Once you go past “typical” or “trendy” chronic illnesses, there is no care coordination, there is nobody to turn to for help, and your insurance company, well maybe they’ll pay for something and maybe they won’t. I do wonder, if I were sick and rich would I still be as sick?

One thing I do know, I’m damned tired of being sick. I’m tired of identifying myself that way and I’m tired of others doing so. I’m also tired of wondering if it’s in my head and tired of having people tell me it is. (And if it is all in my head, then please, by god, someone help me treat that.)

If creating a blog post that delineates each and every expense will help me find a doctor who can help me with whatever the heck is wrong, yes, I will write one. That said, that post would take away a part of me, the part that says humanity matters most and that’s what we should care about.

This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Snarky Frog for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.

Gastroparesis – A Patient Story

Posted on September 2, 2016 I Written By

The following is a guest blog post by Melissa Adams VanHouten. You can read more about her on her Gastroparesis: Fighting for Change website and her blog.
Melissa Adams VanHouten - Gastroparesis
Since being diagnosed with gastroparesis, my life has changed in unimaginable ways – and the medical community, which did not initially recognize my complex needs, left me ill-prepared for these changes.  In February 2014, I was hospitalized with severe pain and vomiting, put through a battery of tests, diagnosed, and sent home with only a brief explanation of my illness. No one prepared me for the seriousness of this condition.  Perhaps they thought I understood, but I did not.

My ordeal began in the ER with blood tests and scans.  When these tests showed nothing of concern, the doctors forced a tube down my nose and pumped my stomach in preparation for an upper endoscopy.  To this day, I have never experienced anything quite so unpleasant and terrifying.  The doctors were kind and warned me that, though necessary, the procedure would be painful.  They did their best to talk me through it, but it was not an experience I ever wish to relive.  In addition to the endoscopy, I was sent for a Gastric Emptying Study (GES) the following day.  This was not a particularly harsh test except for the fact that I was required to keep the food down despite my frequent vomiting episodes.  My situation was not improved by the radiology technician warning me repeatedly and sternly that if I vomited, we would have to repeat the test.  My week was rounded out with more scans, additional blood tests, and a few IV changes.

The good news is that, though the tests were difficult to endure, the nurses and doctors were (for the most part) kind and understanding.  They controlled my pain well, answered my questions when they could, and took reasonable steps to ensure my comfort; however, my stay was not without issues.  There were numerous occasions where I had to ask what medication I was being given and why, and there were a couple of medications that I concluded were unnecessary – such as the “standard treatment” for heartburn, which they assured me everyone who complained of stomach pain received, when I was not experiencing heartburn.  I was also woken up by the blinding overbed light several times during the night, every night, for blood pressure checks and such when I really could have used the rest.  I was discouraged from showering and walking the halls as well, as this seemed to be an inconvenience for the nurses. The biggest issue by far, though, was the coordination of care.  I lost count of how many different medical providers I spoke to, could not understand their various roles in my care, and was required to repeat my “story” every time someone new arrived.  I would have loved to have felt as if everyone working with me was “on the same page.”

Fortunately, at the end of my week’s stay, I did receive a diagnosis.  I am thankful I was diagnosed so quickly, since many in my community spend weeks, months, or even years seeking answers.  What is not quite so fortunate is that, upon my release, I was sent home with very little information regarding my condition and was told simply to follow up with a gastroenterologist in about 6 weeks.  I had no detailed diet plan, no medications to try, and no idea what to expect.

I recall the doctors giving me an overview of gastroparesis.  They told me it was “paralysis of the stomach” and impressed upon me that there was no cure.  I remember them saying I would need to make some dietary changes, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects.  I recall them telling me that in some severe cases, people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes.  Mostly, though, I remember them saying that some would recover almost completely over time and would not experience long-term effects.  Of course, this last statement is what I believed would be the case for me.  After all, I was in good overall health.  Not a big deal.  I would follow a liquids-only diet, work my way up to soft foods and solids, just as they indicated I should, and I would be fine.

But it did not happen that way.  I went home believing I would continue to improve; instead, my condition deteriorated.  Within a couple of days, I started vomiting again and could barely keep down liquids.  The attacks of pain worsened, and I became so weak that I honestly could not lift my head up.  I told my family goodbye.  I truly believed I would die.  I could not get in quickly to see my new gastroenterologist, and I had no idea what to do.  I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications the hospital doctors had mentioned.  He agreed, but because of FDA restrictions and requirements associated with my particular medication, it was two horrendous weeks before I could begin taking it.  These were without a doubt the longest two weeks of my life.

Since starting the medication, I have stopped vomiting (for the most part) and can now function well enough to make it through the day, but I still cannot eat without pain.  It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts, and it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back.  I have experienced levels of fatigue I previously thought impossible, endured unfathomable pain, and come to realize the horrors of hunger and malnutrition.  I had no idea I would face this.  The doctors did not impress on me that this was a serious, chronic illness, and they left me in the dark as to how to cope with my illness should it not resolve itself, as I had believed it would upon leaving the hospital.

I am thankful I now have a physician who is willing to listen to my concerns and partner with me in evaluating treatment options.  Though there are few treatments available for gastroparesis, my doctor seems to genuinely care and refuses to give up on me.  That means the world to a person in my circumstances.  My experience differs from many in the gastroparesis community.  Unlike me, they remain lost and confused, as I was immediately after diagnosis.  They never find that competent, compassionate doctor.  These are the people for whom I advocate.  I hope that eventually we are able to establish a healthcare system that meets the needs of all.  We need better care, better treatments, and a medical community that comprehends our needs.

This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Melissa for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.

Time To Build EHRs That Address Human Complexity

Posted on September 1, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

As things stand in our world, caring for patients generally falls into two broad categories: treating the body and its innumerable mysteries, and caring for practicalities of the patient’s mental and social health. The two are interrelated, of course, but often they’re treated independently, as if each existed in a separate world.

But we know that this is a false dichotomy. People don’t go from being patients at one point and human beings later, and treating them that way can fail or even cause them harm. At every point, they’re people living in a complex world which may overwhelm their capacity for getting good healthcare. Their values, social networks, resources (or lack thereof), education and mental health status are just a few of the many dimensions that influence a patient’s overall functioning in the world.

This isn’t a new idea. As Frances Peabody noted in a 1927 lecture to Harvard Medical School students, “the secret of the care of the patient is in caring for the patient,” by understanding how a patient’s personal and emotional circumstances influence their health status. It’s a concept that needs revisiting, particularly given that the automation of care seems likely to further alienate doctors from patients.

Given how seldom physicians have a chance to address patients’ life circumstances, and how important it is that medicine returns to this approach, it was good to see the The Journal of the American Medical Association weigh in on the issue.

In the Viewpoint piece, entitled “Evolutionary Pressures on the Electronic Health Record: Caring for Complexity,” the authors contend that next-generation EHRs will need to do much more to help physicians address an increasingly complex patient mix.  They suggest that rising patient complexity – due to issues such as co-occurring chronic and rare diseases, organ transplantation and artificial devices – are changing the practice of medicine. Meanwhile, they point out, patients’ personal experience of illness and the social context in which they live are still important considerations.

But EHRs aren’t developing the capacity to meet these needs, they note:

The evolution of EHRs has not kept pace with technology widely used to track, synthesize, and visualize information in many other domains of modern life. While clinicians can calculate a patient’s likelihood of future myocardial infarction, risk of osteoporotic fracture, and odds of developing certain cancers, most systems do not integrate these tools in a way that supports tailored treatment decisions based on an individual’s unique characteristics.

Existing EHRs aren’t designed to help physicians use predictive analytics to deliver preventative care or services to targeted individuals either, they note. Nor are they helping clinicians to learn from past cases in a systematic manner, the piece says:

When a 55-year-old woman of Asian heritage presents to her physician with asthma and new-onset moderate hypertension, it would be helpful for an EHR system to find a personalized cohort of patients (based on key similarities or by using population data weighted by specific patient characteristics) to suggest a course of action based on how those patients responded to certain antihypertensive medication classes, thus providing practice-based evidence when randomized trial evidence is lacking.

The JAMA authors also take EHR vendors to task for doing nothing to capture social and behavioral data (otherwise known as “social determinants of health”)  which could have a big impact on health outcomes and treatment responses:

In this world of patient portals and electronic tablets, it should be possible to collect from individuals key information about their environment and unique stressors – at home or in the workplace – in the medical record. What is the story of the individual?  The most sophisticated computerized algorithms, if limited to medical data, may underestimate a patient’s risk (eg, through ignorance about neighborhood dangers contributing to sedentary behavior and poor nutrition) or recommend suboptimal treatment (eg, escalating asthma medications for symptoms triggered by second-hand smoke).

If EHRs evolve successfully to embrace such factors – and move away from their origins in billing support – physicians may spend much less time with them in the future. In fact, the authors speak lovingly of a future in which “deimplementing the EHR” becomes a trend, and care no longer revolves around a computer. This may not happen anytime soon.

Still, perhaps we can speak of “rehumanizing the EHR” with information that address the whole, complex person. A rehumanized EHR that Francis Perkins would use, were he alive today, is something physicians should demand.

E-patient Update: Remote Monitoring Leaves Me Out of The Loop

Posted on May 24, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

As some readers may recall, I don’t just write about digital health deployment — I live it. To be specific, my occasional heart arrhythmia (Afib) is being tracked remotely by device implanted in my chest near my heart. My cardiac electrophysiologist implanted the Medtronic device – a “loop recorder” roughly the size of a cigarette lighter though flatter — during a cardiac ablation procedure.

The setup works like this:

  • The implanted device tracks my heart rhythm, recording any events that fit criteria programmed into it. (Side note: It’s made entirely of plastic, which means I need not fear MRIs. Neat, huh?)
  • The center also includes a bedside station which comes with a removable, mouse shaped object that I can place on my chest to record any incidents that concern me. I can also record events in real time, when I’m on the road, using a smaller device that fits on my key ring.
  • Whether I record any perceived episodes or not, the bedside station downloads whatever information is stored in the loop recorder at midnight each night, then transmits it to the cardiac electrophysiologist’s office.
  • The next day, a tech reviews the records. If any unusual events show up, the tech notifies the doctor, who reaches out to me if need be.

Now, don’t get me wrong, this is all very cool. And these devices have benefited me already, just a month into their use. For example, one evening last week I was experiencing some uncomfortable palpitations, and wondered whether I had reason for concern. So I called the cardiac electrophysiologist’s after-hours service and got a call back from the on-call physician.

When she and I spoke, her first response was to send me to my local hospital. But once I informed her that the device was tracking my heart rhythms, she accessed them and determined that I was only experiencing mild tachycardia. That was certainly a relief.

No access for patients

That being said, it bugs me that I have no direct access to this information myself. Don’t get me wrong, I understand that interacting with heart rhythm data is complicated. Certainly, I can’t do as much in response to that information as I could if the device were, say, tracking my blood glucose levels.

That being said, my feeling is that I would benefit from knowing more about how my heart is working, or failing to work appropriately in the grand scheme of things, even if I can’t interpret the raw data of the device produces. For example, it would be great if I could view a chart that showed, say, week by week when events occurred and what time they took place.

Of course, I don’t know whether having this data would have any concrete impact on my life. But that being said, it bothers me that such remote monitoring schemes don’t have their core an assumption that patients don’t need this information. I’d argue that Medtronic and its peers should be thinking of ways to loop patients in any time their data is being collected in an outpatient setting. Don’t we have an app for that, and if not, why?

Unfortunately, no matter how patients scream and yell about this, I doubt we’ll make much progress until doctors raise their voices too. So if you’re a physician reading this, I hope you’re willing to get involved since patients deserve to know what’s going on with their bodies. And if you have the means to help them know, make it happen!

Blind Woman Enjoys 3D Printed Ultrasound of Her Baby

Posted on May 14, 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.

Since I’ve been focusing on patient stories this week, I thought that I’d share this viral video that I’m sure many of you have seen. If you haven’t seen it, this is the video of a lady who is blind as she gets to touch and feel a 3D printed ultrasound of the shape of her baby. It’s a pretty amazing video and the ladies reaction to it is quite extraordinary.

I love this video because he provided me a new understanding of the challenges people with disabilities can have in their patient experience. However, as a tech junkie, I also totally love how all these technologies could come together in such a tremendously beautiful way. This is why I’m so optimistic about the next 10 years of healthcare. We’re just getting started when it comes to technology improving healthcare.

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?

Comprehensive vs. Complete: Creating a Truly Representative Health Record

Posted on May 12, 2015 I Written By

The following is a guest blog post by Stacey (@coffeemommy), an empowered patient and breast cancer survivor.

According to my EHR, I had breast cancer. And I had two mastectomies and I’m currently on Tamoxifen. If you read a little deeper, you’ll discover I also had a colonoscopy at age 39. It was clean.

According to my EHR from another institution, I had a colonoscopy at age 37 and two polyps were removed. I also had a series of ideopathic headaches. Beyond my verbally sharing this information with my current care team, they would have no record of these activities.

According to my EHR from yet another institution, I had a miscarriage in 2000 and went on to have two full-term healthy deliveries after that. More headaches and migraine medication. Again, these items are not reflected in detail in my current healthcare record.

And there are more health records of mine spread across the country.

Everything in those respective EHRs is accurate but my “electronic health record” is not really a record at all. My EHRs are snippets of time spanning several states of residency and ultimately dating back to a thick paper folder that, as a child, I remember checking out from the ground floor before appointments at the now defunct Wilford Hall Medical Center.

Beyond my memory of surgeries, inoculations and well visits past, I question whether documentation of my early health history really exists at all at this point.

And therefore, the burden of tying the highlights of my health history together for every new health care provider, falls on my shoulders. A doable task but certainly not an easy task in the typical 15 minute visit window.

Electronic health/medical records lack true interoperability and therefore are not comprehensive for most of the population. Teams of no doubt brilliant people are allegedly working on solutions and voices demanding interoperability and advances in the health IT space are loud.

However, even if my EHR were comprehensive tomorrow in the above context, it would still be incomplete. While every physician who treats me has read/write access to the record I, as the very subject of the record, am unable to add my two cents.

And my two cents would add a lot of context.

As an example, for the past 22 months, I have been on Tamoxifen to keep my estrogen-loving breast cancer from recurring. For 21 of those 22 months, I have had random soft-tissue swelling, random bilateral rashes and a face tingling turned numbness that progressed to such a point I was running to a mirror to see if my left side was drooping. Since there is no documentation of these symptoms as a side effect of Tamoxifen, I’ve been told to take Loratadine for swelling and have had two brain MRIs to rule out a tumor.

What my current team struggles to understand is that historically, I am reactive to many things. Soaps, shampoos, penicillin, sulfa drugs, ciprofloxacin, lanolin and a variety of other substances trigger rashes and soft tissue swelling in my body. So, starting on a new drug and having ‘undocumented’ side effects was not an unusual series of events for me.

When I asked to take a half dose and was told, “We don’t have a protocol for that.”

Again, what is missing from my EHR is the history of my taking half doses of many of the drugs I have been prescribed and having therapeutic results. As a child this was never a problem. For the first 22 years of my life, I was considered a US military dependent and the continuity of care, regardless of what base we were stationed at, was solid. The next twenty years has been a scatter shot of services across zip codes, providers and payors.

A comprehensive (including all of my past) and complete (including my two cents) would save time, money and headaches. Instead of emailing pictures and bringing a written diary of skin rash and swelling, I could simply upload directly to my own record. Instead of emailing a physician with my side effects and saying, “Please add this event to my record” I could add it myself for no cost to the healthcare system treating me. Patterns could be clearly seen and treatment could be modified appropriately if the situation was warranted. Side effects could more accurately be documented and communicated to other patients as trends were noticed.

The idea of patient reported outcomes being included in the EHR seems incomprehensible to some. I’ve heard, “But you can’t trust patient data” and “Patient supplied data is unreliable.” Really? To me it seems that patients themselves are the only ones who could supply this level of data to enrich the health record. And they have the biggest interest in comprehensive care. And, by the way, providers trust my input when I document my health history on the long sheet of paper on an initial visit – why is my information suddenly invalid as a patient?

To be clear, I’m not asking that patients have the ability to edit or rewrite what the healthcare practice has so diligently recorded. I am simply asking that our record reflect more than the set of symptoms we present with at any given visit. Tracking trends real-time will prevent the dreaded question, “How long has this been going on?” The answer will be front and center.

So as the great minds gather to create the interoperable EHR, please consider the patient voice. Interoperability may allow for a comprehensive record but, until my side of the story is reflected, the documentation will remain incomplete.

My body, my data and my health. Please allow me to participate.

Stacey is a strategy and communications consultant inspired to empower patients and caregivers through collaborative education and community building. Runner. Cyclist. Coffee drinker. Organic gardener. Wife to one. Mom to two. Empowered patient and breast cancer survivor almost two years NED. Connect with her on Twitter @coffeemommy

The Patient Voice

Posted on May 11, 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.

For years I’ve been hearing over and over from various places that we need more of the patient voice in healthcare. These messages have come largely from prominent patient advocates like Regina Holliday and ePatientDave. The Society for Participatory Medicine has also had a strong voice in the fight to include the voice in healthcare and in particular in healthcare IT. While each of these people and organization have compelling stories to share, I’ve wondered if they’re really making the impact they want to achieve.

One problem I’ve seen with this effort is that Regina and ePatientDave are seen over and over and over again at conferences. While it’s great that each of them is advocating for the patient voice to be included in healthcare, I wonder if the healthcare IT community has basically tuned out the message because they’ve heard it over and over and from the same two people. If this was a really massive movement, then why don’t we have dozens or even hundreds of patients that are sharing their stories in prominent places?

I’m sure there are some really compelling reasons why we don’t hear from more patients and not the least of which is that they’re not invited. I don’t think that Regina and ePatientDave really want the lime light. They just want the message they espouse to be heard. So, I wonder if their goal wouldn’t be better served if they started sharing their spotlight with hundreds of other patients. I realize this can be a tricky proposition.

However, I first saw this happening at HIMSS where Regina worked together with HIStalk to have a number of patients attend HIMSS and share the patient voice with the healthcare IT Community. I thought this was a great idea and a really good step forward to diversifying the number of patient voices we hear.

As I’ve thought about this a bit, I decided that I wanted to do more to share the patient voice on my network of blogs as well. So, I decided to reach out to a number of patients and provide them a platform where they can tell their story. In some cases this will be about healthcare IT and how it impacted patients. In other cases it might just be a story about the healthcare system in general. Some will be good. Some will be bad. I told them that my goal was to add a little more of the humanity back into what we think about when we think about healthcare.

I’ve got a couple of these patient stories queued up for this week and hopefully we can make this a monthly (at least) fixture across the network of Healthcare Scene blogs. If you are a patient with a story to share, or know someone who does, we’d love to hear about it on our contact us page. I’m especially interested in hearing stories from lesser known patients. Hopefully we can use this platform to share more of the patient perspective. Be sure to let me know what you think of the patient stories this week.