Free EMR Newsletter Want to receive the latest news on EMR, Meaningful Use, ARRA and Healthcare IT sent straight to your email? Join thousands of healthcare pros who subscribe to EMR and EHR for FREE!

Retail Clinics Are Not the Enemy, Inconvenience Is!

Posted on June 16, 2017 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.

Check out this incredible insight that Gabriel Perna shared on Twitter:

What a great insight and something that most of the entrenched healthcare people don’t understand. Retail clinics are not the enemy, inconvenience is.

In many ways, it reminds me of the approach that taxi cabs took to Uber and Lyft. Taxis described them as evil as opposed to understanding why consumers wanted to use Uber and Lyft instead of a taxi cab. If the taxi cab industry would have understood the conveniences that Uber and Lyft provided customers, they could have replicated it and made Uber and Lyft disappear (or at least they could have battled them more effective than they’ve done to date).

Gabriel Perna further describes the issues of retail clinics and AMA’s approach to retail clinics in his article and this excerpt:

There are many reasons for this phenomenon [growth of retail clinics], but more than anything though, retail clinics are convenient and many physician offices are not. Because of this, the AMA shouldn’t be trying to treat the retail clinics as some kind of foreign invader, but rather use their rise to prominence as a way to guide physician practices forward. For instance, getting in to see a doctor shouldn’t be a three-week endeavor, especially when the patient is sick and needs attention immediately. However, that’s what has happened. Personally, I’ve been told “the doctor doesn’t have anything open for at least a month” more times than I can count.

It’s simple supply and demand. If you or your child needs to see someone immediately because of an illness and your doctor’s office can’t take in you for a week, and there happens to be a retail clinic down the street, guess where you’re going? Any hesitations you may have over your care being fragmented, the limited ability of your retail clinic physician, or anything else will go out the window pretty quickly.

I agree completely with the idea that convenience is key. However, what Gabriel doesn’t point out is that the fact that doctors have a 3 week waiting list for patients is why they don’t care about offering convenience to their patients. They have enough patients and so they don’t see why they should change.

You can imagine the taxi cab industry was in a similar position. They had plenty of people using their taxi service. They didn’t see how this new entrant could cause them trouble because they were unsafe and whatever other reasons they rationalized why the new entrant wouldn’t be accepted by the masses. Are we seeing the same thing with retail clinics vs traditional healthcare? I think so. Will it eventually catch up to them? I think so.

What’s even more interesting in healthcare is that retail clinics are just one thing that’s attacking the status quo. Telemedicine is as well. Home health apps and sensors are. AI is. etc etc etc. All of these have the potential to really disrupt the way we consume healthcare.

The question remains: Will traditional healthcare system be disrupted or will they embrace these changes and make them new tools in how they offer care? It took the taxi cab industry years to adapt and build an app that worked like Uber and Lyft. However, it was too late for them. I don’t think it’s too late for healthcare, but it’s getting close.

Finding New Patients for Your Practice

Posted on May 9, 2017 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.

In many practices, one of the biggest challenges they face is finding new patients for their practice. In some ways, technology has helped the situation, but in many ways technology has made this a real challenge for doctors.

Some recent data from Accenture Health provides an interesting look at one element of how patients find a medical practice.

When I saw this number I was shocked that it was so low. In the past, this number has been so much higher since finding a doctor from your health insurance company was the simple, logical way to make sure you were choosing a doctor which would take your insurance. Times are a changing.

When you look at the full report and the graph on how people find doctors, we learn even more:

Coming as no surprise is that highly digital patients leverage social media, internet searches and health websites to find a doctor at a much higher rate than those whom are less digital. However, what’s shocking to me is how much less the highly digital patient trusts the medical professional versus those that are less digital.

Not surprising is that friends and family is one of the most important factors for finding a doctor regardless of digital skills. Of course, it’s worth noting that in many cases, social media is really synonymous with friends and family. Social media is just the next generation of friends and family influence and communication.

What’s important to realize about these charts is that patients are quickly shifting from the less digital to the more digital category. So, 5 years from now we’re going to see a massive shift with how people find doctors. Social media, internet searches, health websites, and online ratings and review sites are going to continue to grow and become more important to practices looking for new patients.

What are you doing to prepare for this future?

Various Medical Practice Model Types

Posted on May 3, 2017 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.

The EHR vendor (and many other services), Kareo, has put out a practice model guide which they call “Practice Models: The ABCs from ACOs to Concierge and Everything in Between.” With this guide they shared this picture that includes various practice models:

When I see an image like this I’m torn on if this is an extremely exciting time for physicians or if it’s a miserable time to be a physician. One thing is clear, times are a changing. The medical practice models of the past are going to be blown up by new models.

Take for example Telemedicine. Can you imagine any healthcare future where telemedicine is not part of that future? I can’t.

I’m still personally torn on concierge practices. I can see why they’re appealing to so many. I love the idea of unlimited primary care and getting insurance out of primary care. However, it’s not clear to me that this idea can scale across the entire healthcare system. Certainly the rich can do it no problem. Can the concierge model work for the middle and lower class? Many fans of concierge tell me it can. I’m still not so sure.

I know a lot of doctors that are part of ACOs. I don’t know very many that are excited by the work ACOs are doing. Most of them just feel like they need to be part of it to understand the future of medicine. They’re not joining ACOs because they think it’s something that shows a lot of promise for their patients.

I’m probably coming off a little more cynical than I am about these shifts. A number of these changes are really exciting to see happening. However, I’m also not blind to the challenges that many of these medical practice models face.

Needless to say, it’s an exciting and challenging time to be in medicine. The structure of how we pay for healthcare is being questioned and new models are being explored. This can be really exciting if you find yourself tracking the right wave. However, if you miss the wave, then you can be stuck out in the middle of the ocean wondering how you missed out.

The Physician – Patient Disconnect

Posted on April 13, 2017 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.

If you’ve been in healthcare for a while, then you know that there’s often a disconnect between patients and healthcare professionals. However, this divide was illustrated pretty sharply in some research that Conduent (previously known as Xerox) put out about the relationship.

Plus, to add to this disconnect, there was an even bigger divide between patients from different ages. In fact, they’re a very heterogeneous group. However, so many healthcare organizations treat them the same.

For a good illustration of these differences, take a second to look at this infographic:

Is Quality Mutually Exclusive with Profitability?

Posted on March 15, 2017 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.

I was browsing through some old notes today from past conferences and stumbled upon a really intriguing question from when I met with Infor back at ANI 2014. Thanks to technology I know that I met with Beth Meyers, Healthcare Industry Strategy Director, and Prakash Kadamba, Director of Healthcare Product Management at Infor. The question I jotted down from our discussion is the title for the blog post:

Is Quality Mutually Exclusive with Profitability?

In most industries, the company with the better quality often wins. There are a few exceptions, but for the most part, quality matters a lot in the choices we make. However, if I dive a little deeper I think that value wins out over quality in many industries as well. You know you have a breakout product which provides amazing quality and amazing value.

Unfortunately, I’m sad to say that this isn’t always the case in healthcare. The reason I think it isn’t the case is that patients don’t have a good way to measure quality and I’m not sure we’ll ever get to where we can measure quality. I’d be excited if we could, but I don’t see it in the foreseeable future. We have vague representations and indicators of quality, but none of them effectively represent quality.

The best measure of quality a patient can see is “I got better.” The irony of this statement is that just because you got better doesn’t mean you got quality care. You might have gotten better based on something other than the care you received.

Back to the original question, I think you can provide amazing quality healthcare and still be profitable. Those two ideas aren’t mutually exclusive. However, I also don’t think that all those doctors providing quality care are going to be profitable. Quality care does not directly determine how profitable your organization will be. What makes the difference then?

The big difference I see is how well an organization is run. How effective is your billing department? How effective is your documentation? Do you have tools that engage patients in their billing and in their care? Have you automated many patient experiences to free up time for your staff to work on the things that matter most?

Those clinics that are profitable and providing quality care are usually the ones that are looking beyond the EHR. They realize where the EHR fits into their larger strategy, but the EHR isn’t their entire strategy. That’s a big shift in mindset for many that were so myopically focused on implementing EHR as they chased after government handouts.

If you know you’re providing high quality care, but you’re not profitable, take a step back and evaluate your business. I’m sure you’ll find a lot of shortcomings on the business side that if you addressed would make you more profitable. Just don’t expect your EHR vendor to give you all the answers. They’re an important piece of the puzzle, but just one piece.

Make Your Medical Practice Website Patient-Friendly

Posted on March 9, 2017 I Written By

The following is a guest blog post by Yasmin Khan from Bonafide.

It’s a sad truth that many websites are simply not effective at being a resource for visitors, including most medical practice and healthcare service websites. The key element to a service-oriented business website is accessibility or ease of use.

Unfortunately, accessibility is the element most lacking in websites for healthcare organizations.

  • The content is written at the graduate school level.
  • There is too much jargon, unfamiliar acronyms, and unfamiliar words.
  • Too much in-depth medical knowledge is required to understand what is presented on the website.

An example of writing above the audience is using the term nosocomial infection instead of the self-explanatory hospital-acquired infection.

Optimizing your website requires you to look at it from the intended user’s point of view and using proven techniques to increase the probability your website will be found. The entire goal of your website is to attract and convert leads into patients.

Below are three areas of optimization you can use to improve your medical practice’s website to be more patient-friendly.

Provide Relevant, Well-Written Content, and Attractively Presented Content

Does your present website look just like the brochure at your front desk? If so, you are not leveraging the power of your website. You have at your fingers a tool that can be designed to appeal to a wide variety of information needs that is easily navigated.

Every piece of content on your website should be targeted to your ideal patient profile. You must also have content that speaks to each segment of the patient journey, written in the patient’s language and at their level of education.

Your content should be written to no more than the 11th-grade level to be accessible to most of your visitors. Communicate urgency without scaring or pressuring the reader. Above all, do not patronize.

Create clear calls to action to guide people where you want them to go and provide something of value that encourages them to share their contact information to obtain it.

Practice Search Engine Optimization (SEO)

You need to address two areas of SEO:

  • On-page: refers to everything within the website
  • Off-page: refers to SEO opportunities, not on your website

On-page SEO refers to the building and optimization of your website.

  • Indexable content, including images, videos, and plug-ins
  • Crawl-able link structures
  • Search engine friendly URL structures
  • Optimized pages, title tags, and meta-descriptions

Avoid duplicate content to avoid being penalized by Google and other search engines. Each page of your website should have unique content that adds value to the user while achieving a clear marketing goal for your practice.

Off-page SEO includes ways to attract attention to your website through link-building, sharing and promoting content, and optimizing for local and mobile search.

Building quality links is the first principle of successful SEO. The key is to build quality links, relevant links from authoritative websites, blogs, and other areas of the web back to your site. High-quality links are what Google uses to judge trust and confer higher search engine rankings.

Optimize for Localization

As a geographically based service, you need to optimize for local search. When patients search for a medical practice, they typically add the city name to the search:

Primary Care Physicians in Kansas City

Each of your location pages should be optimized with your city and other identifying information such as the name of the medical center your office is in.

If your website is not responsive, meaning it will display appropriately regardless of the device, you need to convert it. Mobile devices have blanketed the globe, and most are used to search for local businesses as well as serving as a primary device for online activity.

The mobile version of your site should have:

  • Large, legible fonts
  • A fast load speed
  • Bullet lists and less text
  • Simple navigation with few internal links
  • Fewer images

Don’t lose opportunities because you cannot be found via smartphone or tablet.

A Quick Summary

Your website is your marketing engine. Take full advantage of online technology to develop a patient-friendly website that:

  • Contains relevant, well-written content
  • Is optimized for search engines
  • Has high-quality sites linking to it
  • Is optimized for local search and mobile devices.

Building a medical practice is a business, just like any other. Today’s patients expect to be able to find you online and engage with you when they are ready. Make sure you give them the information they need to put you at the top of their list.

About Yasmin Khan
Yasmin Khan is the marketing manager for Bonafide, a digital marketing agency in Houston, Texas. She loves writing, tweeting, and positive change. She’s all about the big picture and the greater good.

Physician EHR Burnout Infographic

Posted on February 9, 2017 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.

Physician burnout is a hot topic and one that’s not likely to go away anytime soon. There are a lot of elements to physician burnout and I was impressed with how well eMedApps captured the issue of physician burnout in the infographic below.

I think the question of the next decade is going to be, “How do we decrease the administrative tasks the doctors perform?” If we don’t find a satisfactory answer, our healthcare system will be permanently damaged. What’s even scarier is that this seems to be trending worse and not better.

What would you propose to help solve the problem of physician burnout?

Physician EHR Burnout and Administration Tasks - eMedApps

Online Reputation Management: Trending Topic or Industry Shift?

Posted on December 20, 2016 I Written By

The following is a guest blog post by Erica Johansen (@thegr8chalupa).

It seems that in healthcare this year online reputation management has taken center stage in conversations as consumers have a larger voice in the healthcare purchasing experience. Reviews, in particular, provide an interesting intersection point between social media technology and healthcare service. It is no surprise that there is pervasive, and exciting, conversation around this topic across the industry at conferences and online.

During the #HITsm chat on Friday, we had an excellent conversation about the value of online reputation management by physicians and other healthcare providers, and what lessons could be learned from one managing their own reputation online. During our chat, we asked the #HITsm community (as patients) about their behavior leaving and reading reviews as a part of their care selection process, as well as the role that social technology plays today in the patient experience. There were some exceptional insights during our conversation:

1. Should providers be interested in their online reputation? Does it matter? There was a resounding “yes” among attendees that attention should be given to a practice’s online brand.

2. As a patient, have you ever read a review after being referred to, or before selecting, a new physician? Perhaps unsuprisingly, most attendees supported trends in consumer behavior by reading reviews of physicians online.

3. Have you ever written an online review for a healthcare experience? If so, was it generally positive or negative? Suprisingly, the perspective of our attendees suggested that the consumption of reviews was more common than the creation of them. Most folks just won’t review unless they felt compelled by an experience that surpassed,or fell too short, of expectations.

4. Is there an expectation that providers (individual and/or organizational) respond to social media engagements by patients? Our attendees chimed in that maybe it isn’t so much that there is an expectation, but it could signifantly help a negative review or solidify a positive one.

5. What would a healthcare provider who is exceptional at managing their online reputation look like? Examples? Stellar examples shared illustrated folks that have harnessed the power of social media to augment their patient expierence and brand. For example:

Bonus. What lessons could be learned from managing your personal online reputation that could guide provider reputation management? This question took a different turn than I initially anticipated, however, for the better. Many insights shared included mentions to social platforms and meeting the patients where they are. There is so much opportunity for the next phase of healthcare social media as platforms begin to cater more to feature requests and uses based on consumer trends. (One great example of this is the Buy/Sell feature added to Facebook Groups.)

Additional thoughts? There were some flavorful insights shared during the chat that are worth an honorable mention. Enjoy these as “food for thought” until our next #HITsm chat!

I’d like to say a big “thank you” to all who participated in the last #HITsm chat (and are catching up after the fact)! You can view a recap of these tweets and the entire conversation here.

#HITsm will take a break for the next two weeks over the holidays, but we will resume in 2017 on Friday, January 6th with a headlining host Andy Slavitt (@ASlavitt) and the @CMSGov team (@AislingMcDL, @JessPKahn, @AndreyOstrovsky, @N_Brennan, @LisaBari, and @ThomasNOV).

How IRIS Puts the Real Triple Aim of Healthcare In Action

Posted on November 22, 2016 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.

As I’ve been doing my Fall Healthcare IT Conference tour, I’ve had the chance to meet with hundreds of companies and thousands of people working to improve healthcare. While all this travel takes its toll, I also come away from all of these meetings invigorated by the quality of people and their desire to make healthcare better. That’s true almost across the board.

While most of the solutions I see are an evolution of something I’ve seen before, every once in a while I meet with a company that’s really impacting healthcare in a unique and interesting way. I found just such a case when I met with Patrick Cresson from IRIS – Intelligent Retinal Imaging Systems.

On face value, many might look at IRIS as just another diabetic retinopathy exam that’s been done by ophthalmologists forever. While this is true, what makes IRIS unique is that they have an FDA cleared exam that can be done in the primary care setting as opposed to being referred to an ophthalmologist. As Patrick pointed out to me, of all the diabetic screenings that need to be done for diabetic patients can be done in the primary care setting except for the retinal exam. At least that was the case before IRIS brought those exams to the primary care setting.

A look at the numbers is quite telling. There are 116 million patients with diabetes or pre-diabetes and that number is increasing every day. It’s estimated that 30 million diabetes patients get referred for an eye exam every year and 19 million diabetes patients do not get the annual retinal exam. There are plenty of reasons why this is the case, but it’s not hard to see why this happens. The same thing happens with referrals across healthcare. Diabetic patients that can’t tell any difference in their eyesight are unlikely to keep going back for an annual retinal exam. Who really wants to go to the pain of scheduling an appointment for what doesn’t seem to be an issue? So, they don’t.

The problem with this thinking is that diabetic retinopathy is asymptomatic. The only way to know if you’re heading for trouble is to have a retinal exam. The good news is that early detection can solve the problem and literally save diabetic patients’ eyesight. I know this first hand since it saved my grandfather’s eyesight.

This is the compelling story that IRIS tells as it pushes the retinal exam into the primary care setting where they can ensure patients are getting the early screenings they’ve so often missed in the past. This plays out in the numbers. Over the past 3 years, IRIS has performed 120,000 diabetic retinopathy exams which resulted in 56,000 patients identified with a pathology and 11,600 patients saved from potential blindness.

While this type of early detection can help healthcare organizations HEDIS compliance, I’m intrigued by the way IRIS straddles the fee for service and value based care worlds. I’ve seen very few models that get a primary care provider paid in the fee for service world, but also work to significantly lower the costs of healthcare in a value based care world. However, that’s exactly what you get from IRIS’s early screening exams.

What’s also fascinating to consider about IRIS is ophthalmologists’ response. It’s easy to see how many ophthalmologists could be afraid of diabetic retinal exams being done in the primary care setting and not in the ophthalmologists’ offices. That’s taking business away from them. While this is true, it’s also easy to see how an increase in retinal exams will drive more previously undiagnosed higher acuity exams, surgeries and interventions to ophthalmologists. Every ophthalmologist I know would much rather do a higher acuity surgery than a basic diabetic retinopathy exam. That’s the reality that IRIS creates since it’s an FDA cleared exam for diabetic retinopathy, but it’s only a screening tool for other eye diseases that require a full exam by an ophthalmologist.

Stories like IRIS are why I love blogging about healthcare IT. IRIS is changing healthcare as we know it by reducing healthcare costs, improving the patient experience, and getting doctors paid. That’s the real triple aim of healthcare in action.

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.