As you may have read in last week’s entry, I got hit with a pretty hard cancer diagnosis on January 18, 2011.

Like I said, within one day, I went from eating peanuts and watching the Patriots on TV in symptomless bliss to being told I had a ‘significant number of masses’ on my liver… a tough nut to swallow for sure (sorry, couldn’t resist the pun).

Once we returned to Boston from Vermont, I was admitted through the ER, a 9-hour ordeal… Although they didn’t tell us immediately, my wife and I knew the diagnosis wasn’t good. Over the next few days, all suspicions were confirmed and I was diagnosed with Stage 4 colon cancer with metastasis to my liver. 

Although there were several moments during these first few days where I wanted to bolt out of the hospital to escape my new reality, I have to say there was an ironic peace of mind that finally came with the official diagnosis. With it, I quickly realized I needed to focus on how to begin my journey toward health.

And that journey started right away. My information (e.g. chart) traveled across the hospital VERY quickly – and within 24 hours over half a dozen physicians had read my chart and were collaborating on the best course of treatment. They had seen all the scans, reviewed all the blood work, reviewed my HPI (History of Present Illness) and read the notes left by the staff GI physicians and internist. They huddled up to hatch a plan with two of the finest doctors I will ever know—Dr. R (my medical oncologist) and Dr. T (my surgical oncologist).

My first visit with Dr. R was pragmatic in tone, with a solid injection of hope. 

He explained that my liver was covered with tumors… but added… that his plan was to be extremely aggressive. He would start my treatment with a chemo concoction typically used for pancreatic patients.

Although this course of treatment had only been documented in one study out of Germany for patients with metastatic colon cancer, Dr. R was confident that his plan to hammer me with Fulfurinox (the chemotherapy treatment) would be more efficacious than the standard protocol (Fulfox).

He followed by saying, ‘You’re young, and I know you can take it,’ and explained that his goal was a cure me, not just prolong my life. 

Dr. R showed me scans of my liver and the cellular invaders that were looking to bring me down. I could actually see the cancer in 3 dimensions covering my liver. At that point, I knew that my shot at life required this ridiculously tough chemo concoction.

Without hesitation, we wholeheartedly agreed to move ahead.

I’ve got way too much to live for and I was not going to let a little (or a lot of) pain get in the way. Oh, and another thing, if I didn’t go forward with this chemo, they likely would not have been able to perform the subsequent necessary surgeries to remove the liver tumors and I… well… probably wouldn’t be typing right now!

This first visit with Dr. R was also where the seamlessness of their health information technology (HIT) operations and the benefit of even the more mundane IT integration really began to help me as a patient. He opened up the EMR to show me scans, pathology reports, blood test results and explained all of it – the good, bad and ugly. For example, my CEA (Carcinoembryonic Antigen) levels were through the roof, I had tumors ranging in size from 2 to 8mm with eight (of the nine) located in my liver. The colon tumor (the primary tumor, of which there was one) was less significant – just a bit of cutting and it’d be gone. 

Dr. R explained my situation clearly, but it was the 3D images, viewed from within the EMR, that really helped me understand my situation and eventual progress. I am a visual person and would have lost half of what he said if we had just talked through it. These images were also critical to my own psychological therapy. Throughout the last year, I’ve used visualization exercises to create a positive mental environment to help the tumors shrink. Many arguments can be made as to whether visualization and positive imagery can actually aid in the ‘shrinkage’ of tumors – I wholeheartedly believe it can and it helped to know I was doing my part in the battle.

Further, once a month, my day would begin with scans at 8 a.m. followed by a meeting with Dr. R at 9. The one hour between these two appointments is almost impossible to handle emotionally – it is a grueling hour worrying about endless scenarios: would the scans show that the chemo is shrinking my tumors? Would it be ineffective against my tumor type? What if my tumors were still growing or something new appeared? 

Each minute between appointments seemed like a life-crushing day, but thankfully the wait was limited. One of the most comforting parts of this process was knowing that within minutes of my scans being complete, a very readable version of those images would be available for review within my chart. I can’t explain the duress that is avoided by this interface between the EMR and the medical device. Each time I arrived in Dr. R’s office – those scans were ready.

When these images dictate your shot at life… this seamless exchange of information is beyond critical. Upon Dr. R’s arrival in the exam room, we would review the scans and quickly know how we’re doing – good or bad. This illustrates one small example, from a patient’s perspective, of how important the seemingly routine aspects of HIT integration are to the people receiving this life-changing information. 

I am proud to know that on some small level, this is my life’s work.

In upcoming blog posts I will share a few more examples of where HIT helped me navigate the choppy emotional waters of this disease. I will also delve into the shortcomings and the promise of HIT, as I consider it from a patient perspective. In the meantime, thank you to everyone—and there were a lot of you—who read the first blog post in this series. I appreciate the kind words and your thoughts on the subject at hand. I will post responses as we move forward and please keep sending thoughts on what you read. Let’s keep talking…

I hope people are watching the news around the Meaningful Use attestation data released by CMS recently, because it is so instructive as to the difference between where we are in health care and where the deliverers of keynotes THINK we are. Since last September, we’ve been publishing our Meaningful Use (MU) dashboard data and as of this week for example, we know that 83% of our Medicare MU doctors have attested to the measures.

But our constraints as a marketplace are at the practical, tactical level. According to our analysis, some 48% of what doctors order does NOT turn into a documented update to the chart within 60 days of that order. And we all know the average EHR makes docs go slower—causing employment by hospitals in large numbers—at large losses to the hospital. And NOW, based on the CMS data, it looks like a large percentage of docs are on track to miss a bloody lay-up of a bonus from the federal government! Do you guys really think we are going to build integrated ACOs that drive down hospitalization?

Pass it on—we are further behind than we think we are, and we need to hold ourselves accountable for PRACTICAL, TACTICAL outcomes before we even talk about grand outcomes like “total quality.” So what do we do? So glad you asked. I hazard three guesses, and you guys can throw in more… or challenge mine:

1. Make a market for health information exchange. Today, HIE is universally used as a NOUN. It’s a thing you buy from Aetna or Lockheed Martin or IBM. In every other information supply chain I know of, people who WANT info PAY others to give that info to them. They pay only when the info is delivered in usable form. This is, of course, not allowed in health care, but it can be. We should get behind legislation that allows for the most rudimentary mechanism for exchange in the history of man.
2. We should all go at-risk for results. Today, when a doc orders something, she doesn’t lose any money (and neither do we) if that order gets lost. Starting in March, we will be at risk for delivering orders to the receivers (labs, pharmacies, specialists, hospitals, etc.), obtaining the result back, matching it against the original order and either closing it or serving it up to the doc for further review. If we do all this, we get a dollar. If we don’t, no dollar. We will be at risk for clinical quality in the tiniest, most practical, tactical way. Alternatively, we can charge a dollar to the receiver if he or she is in our network, because we can send a value-added clean order with documentation… just the way it’s done in every other information supply chain. Very cool.
3. Face it about the cloud! I know I’m conflicted on this one, but going at-risk for results is against my self-interest and I am still doing that for the good of health care, so hear me out. If so many doctors can’t pick up basically free money from the federal government because they can’t get their legacy, software-based IT systems to make even the most fundamental changes to the information they capture and report, what do you think the odds are that these systems will enable going at-risk for a total hip replacement??? Doesn’t plunking a ton of balance sheet down for a single version of software actually orient docs AWAY from changes that would otherwise be good for them? I know some of you are saying, “Yes, but docs are working for hospitals now!” But be honest with yourself. With athenahealth and Google and Amazon KILLING each other to get competent developers, how many of them are going to take jobs customizing legacy software written in MUMPS (Massachusetts General Hospital Utility Multi-Programming System) at their community hospital system??? We all need to take a deep breath and just dump those old systems. I did it myself just this last year. I had a “fully paid up” copy of a legacy financal system. We finally had the courage to bite the bullet and sign up with NetSuite. We literally had a haze cleared out of our lives that we hadn’t even noticed was there. We can change and grow in basic ways, without “investments” and “project teams.” What a relief.

Okay, those are mine… what are yours?

On Jan. 5^th, we issued a press release about the positive advisory opinion we received from the HHS Office of the Inspector General (OIG) on our athenaCoordinator service pricing. Insiders have observed that it is different from other OIG advisory opinions on referral management arrangements because it enables transaction-based pricing for value-added health information exchange. 

This is an opinion that was sent to athenahealth and only applies directly to athenahealth. However, it was made public, so many in the industry (mostly lawyers!) will look at it for guidance on other health information exchange (HIE) arrangements on which they may be advising clients.

There is a lot of legal language in the opinion, which can make it a little difficult to understand exactly what athenahealth plans to do with its athenaCoordinator service. Some commentary I’ve seen in the blogosphere and elsewhere has mistakenly referred to our service as a “private HIE.”

It’s not.

For starters, athenaCoordinator is cloud-based and it’s a service that provides order transmission, insurance pre-certification and patient registration among physicians, hospitals and other care nodes. It’s intended to eliminate the errors and redundancies that can impede the flow of care in our health system. When you travel through the care chain, you should be a known entity at each stop and not someone who has to re-establish your identity and health information with each iteration.

As for how athenaCoordinator is not a private HIE, let me try to cut through the legalese (as well as a General Counsel can reasonably do) and explain why athenahealth’s plans are innovative and different. 

1. Everybody is welcome – One of the big problems with the effectiveness of HIE is that HIE systems, both public and private, are typically open to only limited regions or markets. With public HIE, this is a result of governance and funding—they tend to be focused on specified regions and the administrative and technical barriers to sharing useful information limits their reach. Private HIE is typically and intentionally targeted within specified health systems or regions based on business considerations. The ultimate intent of athenaCoordinator is to make the data exchange services available to anyone in any market in the United States. We believe that widespread participation results in a stronger network, leading to better information quality and therefore better care coordination.

2. It’s sustainable – Rather than relying on the largesse of public or private grant funders or donors, the transaction-based pricing enables a sustainable market for health information exchange.

3. Information is “on demand” – The idea is that users will pay for valuable information, what they want, when they want it and that they will pay fair value for it. The model de-emphasizes complex legal or administrative structures. Subscription is simple. athenaNet will serve up the information in a usable format. If it’s not eminently usable, customers won’t pay for it!

I will be candid. Effective nationwide HIE is a tough nut to crack. A lot of smart people have been working on HIE for years under more traditional models and most such models have failed.

Many are skeptical these arrangements can succeed. Yet most in the industry acknowledge the immensely powerful benefits of nationwide HIE.

So what makes us think that the athenaCoordinator model will work? It already does work to a large extent through the services offered by athenaCoordinator, known as Proxsys, LLC prior to our acquisition—including care coordination services to hospitals, ambulatory surgery centers (ASCs), and imaging centers. The changes planned by athenahealth for the athenaCoordinator service will expand these services and multiply the value of HIE by leveraging the demographic and clinical data of clients who subscribe to our EMR service, athenaClinicals.

Leveraging the other athenahealth services will enable more streamlined workflows and powerful reporting. This supports care coordination and more effective participation in payment programs that provide incentives for demonstrating adherence to care protocols. Of course non-athenahealth clients will be able to send to subscribing receivers as well. They will realize many of the benefits and their participation will strengthen the network power that enables better coordination.

We are heartened by the OIG’s policy approach that’s reflected in the advisory opinion. It recognizes the potential of free market approaches to accelerate the development of sustainable HIE in conjunction with government programs to support HIE and the use of EMR.

Will it work? Here at athenahealth, we know we’re creating an offering that tackles key barriers to effective, widespread HIE. We are trying to eliminate the silo-ing of information and create an economically sustainable model to exchange only valuable information when and as demanded. We also hope that our continuing engagement in the dynamic health regulatory environment stimulates more innovative models to solve these and other problems.   

Do you have any thoughts on HIE and care coordination? If so, send in a comment and let’s start a discussion…

It was late Sunday afternoon one year ago and I was in Vermont with my family, watching a Patriots game on TV and eating peanuts.

I ate a lot of peanuts.

The next day, Martin Luther King Jr. Day, I felt terrible. I thought it was the peanuts. I was in so much pain that I ended up at the nearest hospital, in Brattleboro.

I arrived late on that Monday afternoon and the team there conducted several tests – ultrasound of abdomen, chest X-ray, EKG, the usual. Before they got to a series of GI tests, they did an ultrasound and spotted something on my liver.

They saw a “significant number of masses on it,” to quote my nurse. She convinced me that I should quickly—like as soon as it’s light again outside—go to a Boston hospital and get a full battery of tests. Ultimately, she said, you will want to line up with an oncologist as soon as possible.

We drove home from Vermont that night comforted by… nothing. Fear, anxiety and an unfathomable feeling of despair blanketed the car. My wife and I were in shock. I was 39… Our two kids (ages 7 and 4) sat in the backseat asking repeatedly what was wrong. We weren’t ready to talk, so we said nothing.

By the end of that week, I knew my life would never be the same.

I have worked in the HIT space for almost 17 years. I’m 40 now, and I’ve spent most of my post-college career thinking about EMRs and the value that they bring to physicians and patients.

In support of athenahealth’s mission, I’ve spent countless days with physicians, nurses and administrators walking through “clinical scenarios” in an attempt to explain the promise of an EMR. Often, this traditionally skeptical group would forgive my awkward clinical examples tenuously linked by clinical relevance, and then they’d ponder… Why? Why would I spend my money on this? What value does it bring to my hospital, my physicians, my nurses, my patients?

During these conversations, many physicians brought up relevant concerns about the ‘value proposition’ that HIT vendors posit – clinical efficiency, better outcomes, a rock-solid ROI, etc…

It is a complicated conversation. It takes great skill to translate the capabilities of an EMR (in the case of athenahealth, a cloud-based EMR service) into real value for the physician, the health care organization and their patients.

Well, many aspects of that conversation—for me—are no longer difficult at all.

On January 18, 2011, I was diagnosed with Stage 4 colon cancer with metastases to my liver (8 “honking” tumors in all – 9, if you include the colon). The conversations relating to EMR technology and their value, conversations that were once theoretical, became all too real.

As I continue my fight today, I’d like to share my experiences in future blog posts about the practical realities versus the promise of the EMR – and information technology more broadly.

I’ll get into this more, but just know that there are absurd examples that clearly illustrate the shortcomings of current technology. There are examples that illustrate where it operates with extreme efficiency and other areas where HIT can fundamentally change health care in the US – but hasn’t. It becomes a question of collaboration and execution.

As I enter month 12 of my treatment, I am incredibly optimistic about our industry and the potential that is stored within the brains of the people who define and move it. We are SO early in our lifecycle as a group of competitive companies, but the opportunity for fundamental health care improvement dictates that we move… collaboratively and quickly.

As I dive into my experience in future posts, it is important to note that I am receiving my care at a major teaching institution in Boston. One can debate whether this implies better technology, systems of operation and care. I can say, assuredly, that my care has been world-class. The physicians and nurses who have cared for me through this brutal process have been nothing short of miraculous—all of them. I won’t mention them by name, but I wish I could.

There’s a lot more to share but in the meantime, please feel free to offer your thoughts. Do you have a similar experience you’d like to share? Send in a comment and we can get a conversation started. Thanks for reading…

We have a lot to look forward to this year. We’re going to Las Vegas for the HIMSS convention in February, the data on Meaningful Use keeps flowing and our annual User Conference is coming up fast in April. (Registration starts Jan. 16.)

In the next few weeks we’ll also roll out exciting new changes to our social media channels and we’re pulling the levers to launch us into the upper reaches of the Twittersphere.

But first, there’s Facebook. We’ve been ramping it up over the past few months and here it is…

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