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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.

Partners Health Care Not to Expand – Can’t We All Just Get Along?

Posted on February 6, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

So the deal is off for the mega-medical conglomerate that dominates Boston’s health care scene. Partners Healthcare, which came so close to buying up several competitors, got slammed by a newly installed attorney general and a judge presiding over the merger decision. So big is Partners in health care–and health care in the Boston market–that this news made the lead headline in the Boston Globe on January 30.

Partners may go ahead with the mergers and face a lawsuit, but my guess is that they’ll sense the trending of the political tides and back away. Everyone understands that dominant health care providers tend to raise costs–but what might we have lost in preventing the merger?
Read more..

Are Limited Networks Necessary to Reduce Health Care Costs?

Posted on September 10, 2014 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Among the dirty words most hated by health care consumers–such as “capitation” and “insufficient medical necessity”–a special anxiety infuses the term “out-of-network.” Everybody harbors the fear that the world-famous specialist who can provide a miracle cure for a rare disease he or she may unexpectedly suffer from will be unavailable due to insurance limitations. So it’s worth asking whether limited networks save money, and whether they improve or degrade health care.
Read more..

Will Telemedicine Really Lower Costs?

Posted on May 21, 2014 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 talking with the mobile health lead at one of the large telcom providers recently and we had a good discussion about telemedicine and its possible impact for good or bad on healthcare. She asked a really good question, “Will telemedicine lower the cost of healthcare or just add new touch points?

The translation to that question is whether telemedicine will replace other healthcare costs or if it will just create new healthcare costs that never existed before. I should say that her feeling was that telemedicine would end up lowering costs, but the question is well worth asking. In fact, even if the answer is that telemedicine will lower healthcare costs, there are many on the payer side of the equation that aren’t as confident.

The reality is that a telemedicine visit likely could raise costs. The idea of having to uproot yourself, go to the doctors office, wait in the waiting room, wait in the exam room, etc is a really big deterrent that stops many of us from going to the doctors. The idea that I could click on a link and see a doctor from the comfort of my own home with no wait times (or at least I’m waiting at home where I can get other things done) will definitely cause us to see the doctor more often.

This means that the real question isn’t whether telemedicine will increase the number of visits to the doctor (and more visits equals more costs). Let’s assume that we do see the doctor more often in a telemedicine enabled world. This then begs the question of whether these extra visits will reduce the long term costs of healthcare.

Using our assumptions above, it suggests that we’ll visit the doctor earlier under telemedicine than we would today. Could these early visits catch a disease earlier? Could these early visits avoid a hospitalization or other expensive healthcare cost? Could early treatment of an issue prevent someone from having a visit (or dozens of visits) later? Looking at it from a different angle, can telemedicine make a doctor more efficient?

This impact won’t likely happen immediately, but is the long term hope of what telemedicine can become and how it could lower healthcare costs. I personally lean towards telemedicine being able to realize these goals. Although, we won’t know until we figure out the way to reimburse a doctor for a telemedicine visit. Not to mention overcoming the physician licensing issues with telemedicine. Each of those will happen though and then we’ll really know if telemedicine lowers the costs of healthcare or not.

Medical Bills, Patient Portal Insight and HIT Friends in Need

Posted on August 15, 2013 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.

HIT Friends Support a Great Cause
Blogging and social networking are of course great drivers of information and thought leadership, and they can also be very effective in spreading the word of friends in need. I found out through these avenues about the healthcare challenges of three-year-old Little James, recently diagnosed with a brain tumor, and the fundraising efforts of Todd Stein at Amendola Communications to alleviate the burden of his mounting medical bills. You can read about his healthcare challenges here. Prayers and donations are immediate needs. I wonder if any organization out there might step up and match donations.

Speaking of Medical Bills
On a lighter note (sort of), I laughed out loud when I saw an explanation of benefits for my recent surgical procedure.

savings

Thankfully, I do not truly owe anywhere near that amount due to insurance coverage. I shudder to think how the uninsured pay for life-saving procedures they can’t afford. Yes, hospitals can work out monthly payment plans for anyone, but if an extra $50 a month means less gas in the tank to drive your kids to school … I now find myself tediously combing over statements from the hospital and explanation of benefit statements from my insurance company to make sure they match up.

More Healthcare Cost Transparency News
A company called Change Healthcare is getting into the cost transparency game, having just secured $15 million in funding to further develop its Transparency Messenger product, which, according to the company, compiles health plan and claims data to devise algorithms that determine cost of service. It then uses health plan holders’ or employees’ demographic information and personal preferences for care to look for savings.

Customer Service in Healthcare
In contrast to the financial distress that comes with unexpected medical procedures, I must share with you a thank you note from my surgical team. While I appreciate the gesture, I’m wondering if they’ve charged me for it!

thankyou

All kidding aside, this gesture highlights the increasing importance providers are placing on customer service. To learn more, check out “Why Customer Service Matters in the Healthcare Industry,” by James Merlino, MD, of the Cleveland Clinic.

Patient Portal
I haven’t yet logged back into my patient portal – thankfully having no need to right now. My last doctor’s visit prompted me to ask if I could access my latest pathology report via the portal. My doctor sidestepped the question and promptly presented me with a paper copy, which will likely be a good thing, as he and my dermatologist don’t seem set up to share patient information electronically. That seems to be a provider choice, and not necessarily due to poor portal design.

Speaking of patient portals, I highly recommend you take a look at Dr. Michael Koriwchak recent blog over at WiredEMRDoctor.com. “My First Year with a Patient Portal” gives us patients a better idea of what works and what doesn’t from the practice perspective.

Healthcare Costs Hit Home

Posted on July 26, 2013 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.

I attended my first #HCLDR tweetchat recently, enticed by the topic of healthcare price transparency and a recent diagnosis that will soon send me in for outpatient surgery. Needless to say, my interest in the cost of healthcare services has intensified. While I do have insurance, that’s not to say that the expense will be tolerable. I have asked for every office involved to give me detailed explanations of what my estimated charges will be, how they arrived at those figures, how those figures might change, and what my percentage of those charges will be based on my insurance plan. And then I asked everyone to explain everything again. Luckily, I had the time and the resources to keep asking questions.

I even called another facility in the area to see if their estimates were competitive. That led me down another rabbit hole of inquiry. To truly know what you’ll pay for at a hospital, you not only have to take into account the hospital’s estimate, but also know that you’ll likely also receive a bill from the surgeon, lab, anesthesiologist, and pretty much any other –ologist you come into contact with – all of whom are likely contracted with the hospital, rather than its full-time employees. There was even a sign to this effect when I went in for my pre-op. No wonder patients feel so bewildered and slightly intimidated when faced with the cost of treatment.

Where does the money go? Who gets paid what for which service? If the hospital’s chargemaster says this, but writes down 50% of it due to contract with a payer, then what is the procedure’s true value? I was quoted $18,000 for one procedure, which was then whittled down to just over $3,000 after contract pricing and insurance plans were taken into account. That seems a little off to me. Was there ever a time when a hospital charged a patient what a procedure was worth? And what about patients that can’t afford care? I was candidly told by a hospital employee that sometimes those that don’t have coverage end up paying less than those that do. I’ve never been good at math, but to me, this just doesn’t add up.

I’m not the only one who has questions when it comes to healthcare price transparency. I’ve listed below some of my favorite tweets from the #HCLDR chat, and hope that you’ll find them pertinent to whatever healthcare situation you might find yourself in. (Special thanks to #HCLDR co-founder Colin Hung for Storifying the chat, thus providing me with screenshots of the tweets below. You can view the full Storify story here.)

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Healthcare vs Sickcare, MU Undermines EHR Usability, and Kaiser Monkey Game

Posted on July 15, 2013 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.


This might seem a little self serving since I sent this tweet in reply to Georg Margelis’ comment. It’s a really good question though and one I’ve been starting to think about recently. I’ve often heard that the really sick people are the ones that cost healthcare so much money. My question is whether keeping them healthy just delays the costs or whether keeping them healthy actually costs less money long term.


This is such an important topic. I’ve been commenting more and more on this subject. I’ve wondered if a usable EHR can be created that satisfies MU. I imagine it depends on how you define usable.


This is a pretty cool Monkey game from Kaiser. Although, the real value in this article is better understanding some of the approaches that Kaiser is taking to healthcare. So many people salivate over working with Kaiser. It’s good to understand what they are and aren’t looking for if you’re looking for that relationship.

Healthcare Cost Transparency: Let the Revolution Begin

Posted on July 12, 2013 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.

I’m a big fan of historical fiction, and just finished up “Madame Tussaud: A Novel of the French Revolutionby Michelle Moran. I’ve read many fictional and non-fictional accounts of that time period, but the depiction of the French citizenry’s dissatisfaction with the monarchy and just about everything else in their society struck a particular chord with me this time around. I don’t think I go too far in saying there is just a hint of their discontent brewing in the world healthcare consumers. While consumers and patients haven’t quite reached the level of hysteria the likes of Robespierre or Marat did centuries ago, there now seems to be a societal voice given to a need – I’d go so far as to say a right – to know the true costs of medical services before and after they are supplied.

And I wonder if the government’s push towards electronic medical records and more coordinated care isn’t halfway to blame. Easily accessible information, such as patient health data and doctor’s notes that can now be placed directly in patients’ hands has made us all wonder, “If I can understand the reasoning behind my doctor’s directives, why can’t I understand the reasoning behind the cost of that care?”

I mentioned last week my discontent with the way I was approached by my hospital to pay for labor and delivery services shortly after my daughter’s birth. It was no surprise to me then to come across “American Way of Birth, Costliest in the World,” a well-written article in the New York Times chronicling a number of mothers’ similar frustrations with healthcare costs, billing and payment. In these days and times, I could not imagine trying to navigate the financial part of pregnancy, labor and delivery without insurance coverage. And it saddens me that for all the money that we spend in this area of healthcare, our infant and maternal mortality rates are nothing to be proud of.

But I digress. My true point this week is that there is a growing movement by consumers to demand transparency into healthcare costs – ideally before treatment is given, but most definitely after it is received. Providers should be able to explain services line item by line item, and consumers should be able to compare the costs of those services provider by provider, hospital by hospital. I’m confident we’ll get there, as this movement only seems to be growing. There’s an interesting timeline that has occurred:

March 4 – Time Magazine publishes Steven Brill’s oft-referenced article “Bitter Pill: Why Medical Bills are Killing Us,” perhaps kicking off CMS’ attempts to bring greater transparency to healthcare costs

May 7 – CMS releases new open dataset to shed light on hospital pricing variations

May 8 – Mainstream press, such as The Washington Post, publish lengthy online articles complete with data visualizations to assist consumers in understanding the vast differences between what hospitals charge Medicare for their services.

May 15 – CMS releases state and national averages a week after The Washington Post article, aggregating the data for comparison on the state level.

June 3 – CMS releases another wave of data, including average estimated submitted charges for 30 types of hospital outpatient procedures; information on Medicare spending and utilization at the county, state and hospital-referral region; and the prevalence of certain chronic conditions among Medicare beneficiaries.

July 5 – The Center for Studying Health System Change releases study on “Geographic Variations in the Cost of Treating Condition-Specific Episodes of Care among Medicare Patients” showing that geographic variations in Medicare medical treatment costs can differ among episodes of care for certain conditions and not only across but within regions.

How will all this play out in the coming years? Will consumers continue and increasingly demand to know what healthcare will cost them? Will private payers offer up this same type of information sooner rather than later? Should this knowledge be a right, rather than a privilege? What do you think? Let me know via the comments section below.

Can Access to Prior Test Results Reduce Healthcare Costs?

Posted on March 12, 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.

Quick True or False question to brighten your day: If you switched doctors and your new doctor had access to your previous x-rays and lab tests, you’d probably not need to re-do your tests again.

If you answered true, great, you’re far more optimistic than what this study in Health Affairs reveals about doctors’ test-ordering propensities. According to the study (which BTW I haven’t fully read yet, having read only the abstract and the write-up about the study in the Health Affairs blog), doctors who had access to prior tests and images – tended to order more tests, not fewer, contrary to what one would expect.

One of the big reasons why EMRs are being so heavily touted from the government downwards is because they’re expected to reduce redundancies and save costs. Except that they might not.

Here’s a rundown of the study, based on what I read in the abstract as well as blog entry:
– The study analyzed 28,741 patient visits to 1,187 doctors offices in 2008.
– Access to computerized imaging results was associated with a 40-70% higher chance of a test being re-ordered. Access to such tests was not necessarily through an EHR.
– The presence of an EHR was not the key factor affecting the results found by the study. Rather it was the access to prior test results which was the determining factor. According to the blog post, “Physicians without such access ordered imaging in 12.9 percent of visits, while physicians with access ordered imaging in 18.0 percent of visits.”
– Also according to the blog, specialists tended to order additional imaging tests compared with primary care physicians. There were also gender differences with women receiving more tests than men.
– It’s not clear why. The blog quotes a researcher as surmising that perhaps if you make something easier to do, people will tend to do them more often, presumably referring to the ease with which a test can viewed, and later ordered from an EHR.

Of course I’m interested in knowing more about what’s going on and more importantly why.

– The finding about specialists might even make sense if the study had delved into how sick the population visiting the specialists was. Specialists typically see patients after they’ve been seen by a PCP, and maybe they’re seeing a sicker population on average.

– I also want to know more about the quality of images and how easily they can be accessed by the physicians across various. If my hospital or practice uses Vendor A’s EMR and I’ve been allowed to view Patient B’s records on Vendor X’s EHR, maybe I will just order a new test to get the same data into my own system.

– I’m also wondering what the insurance company’s take on all this is. I’ve not had much experience with imaging and tests and the like, touch wood, so this is a genuine doubt, no matter how stupid it sounds to you readers. I get a test done today, and a month later a different physician orders the same test, will my insurance company refuse to cough up for my second test?

Interesting study, nevertheless. Go check it out here or here.

Costs of Healthcare, Benefits of Healthcare IT and Health Tracking at #chs11

Posted on October 21, 2011 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.

Seems like people really liked my tweets from yesterday at the Connected Health Symposium. So, I thought I’d do it again today. Here’s some of the interesting tweets I saw and wrote during the Connected Health Symposium.


The cost of healthcare was a major theme throughout the entire conference. I agree completely that as patients start to pay more of their healthcare, they need more information and make better decisions.


I found this really interesting. Twitter (and even this blog) doesn’t quite capture the irony of the statement. Basically, Dr. Tippets from Verizon really highlights how if we did IT right in healthcare we have the potential of saving lives and live longer. Both noble goals.


I think Blumenthal might have actually said Healthcare IT instead of EHR, but there’s a lot of overlap in this. I agree with Blumenthal that the media and even blogs like mine love to write about the negative more than the positive. It makes for a compelling headline. Maybe the people behind the good research studies need to promote themselves more too.


This kind of hit me on multiple levels. First, I found it interesting that 15% are tracking their weight and exercise. Is that too low? It’s probably the highest level of any other healthcare data tracking app. I wonder where the rest of the apps stand. The second thing that hit me was the fact that doctors aren’t using this data. Finding some way to make it easy and useful for doctors to use all this collected information is going to be a challenging, but important next step. I’ll be interested to see how EHR companies work through the process of taking that data and integrating it into their EHR software. It won’t be easy, but I believe patients will love this type of integration. Plus, it would encourage many others to start using these medical devices.