NOSH ChartingSystem

A new open source health charting system for doctors.


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Shut out, shut up, and shut down

I’ve been tracking the troubled launch of Healthcare.gov and I was surprised to find some disturbing themes as we learn more about what led to the disaster.  Aside from all the political rhetoric (which I won’t go into here, as I find it irrelevant) and the vague and shallow analysis that is predominant in the mainstream media, I came upon several blog articles that went into some meaningful discussion about why this happened and what can be done to prevent it in the future.

Shut out

One interesting post comes from Clay Johnson, who spent 6 months as a White House Presidential Innovation Fellow, who talks about the procurement process and how federal and state governments complete aversion to risk produces a bidding process that all but nixes out the best and the brightest minds and technological companies at a major cost to the citizens of the country.  A shocking statistic is that more than 90% of projects that cost more than $10 million ends up failing.  In his post, Clay Johnson states that the process is riddled with practices such as these: pre-approved vendor lists,  6,500 pages of regulation, cumbersome business registration processes, and hostile bidding environments.  All of these practices practically ensure that vendors that cater to the government and know how to cut through the red tape (because it’s their specialty, not because they know how to make innovative products) are chosen for new projects, even if the older projects have spectacularly failed.  In my world in clinical medicine, I’ve heard from several government-related officials about IT infrastructure  and implementation disasters (health and human services documentation systems, immunization registries, and even electronic health record systems for county-funded clinics).  I never knew exactly why these disasters kept affecting government-related projects, but now it seems much more plausible that it’s not just pure dumb luck (or the lack thereof).  It’s about the inadvertent shutting out of the best and brightest in an antiquated and mis-guided procurement process.

Shut up

Robert McMillan’s article in Wired, talks about how the open-source code for the front end (the part that people see when they visit Healthcare.gov) was removed from GitHub (where the large majority of open source code, including NOSH, is stored) was one of the few aspects of the website that actually did work as intended.  The GitHub site was also where many people sought answers to why Healthcare.gov was not working as expected.  It became clear through those discussions that it was the backend, which was closed and proprietary, that was at fault but there was no one that could answer for these issues.  So the Centers for Medicare & Medicaid Services simply just shut down the GitHub site.  I personally don’t think this was the right thing to do, especially in the spirit of open source.  Even if one concluded that the problem was found to be a part of the backend, wouldn’t it be helpful for those that are implementing and managing Healthcare.gov to know what other’s think of the problem?   I don’t think anyone really knows what CMS was thinking when they decided to pull their GitHub site, but thankfully, in the spirit of open source, someone forked the code and there is now a new GitHub site with the front end code.  The one thing about open source code is that nothing every dies, even if you want to shove it back in the closet never to be seen again.

Shut down

And where it all seems to fail is this concept that we’re building a contraption that has so many parts that even though only one part of it is open source and the rest is not, it’s just not an open source project.  Period.  Kin Lane writes about how the lack of transparency is the overwhelming flaw  in this project.  A term that describes this is called openwashing

Openwashing in government is spin that deceptively promotes IT projects and policies as “transparent” and “innovative” when actual practices and spending are not.

Open source code is just one aspect of an open process.  And that also includes the procurement process and its lack of open-ness that starts it all.  Imagine an alternate reality where all the synergy of collaboration and energies are spent in a transparent, open process along with open source code.  It’s process as if people mattered, both in the developmental process and in the delivery of services to help people.  Perhaps that is why I’m passionate about open source computing, and in fact, even open source health care, if there is such a thing.  The more we exclude, the more we hurt ourselves.  I feel that the Healthcare.gov is a perfect case study in what happens when you have a process that is non-transparent, exclusionary, and closed-minded.  In effect, shutting out, shutting up, and ultimately leading to a shut down.


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Love Will Tear Us Apart, Health Care Edition

In recent weeks, there have been some interesting articles that seek to explain the problems of the US health care system.  For example, in David Borstein’s opinion piece in the NY Times, “Who Will Heal the Doctors?”, Mr. Borstein talks eloquently about physician burnout and the aims of the Healer’s Art, a medical school course meant to help doctors and students rediscover and reconnect to the meaning of their work.  In his piece, the concept of the “McDonaldization” of medicine as the source of physician burnout first appeared.  And conceptually, it seems to be another analogy to “CorpMed”, or Corporatized Medicine.  Dr. Wes opines that the source of burn out is not just from the “McDonaldization” of medicine, but rather from “growing hostile dependency patients have towards their doctors.”  He cites several comments from Mr. Borstein’s article that appears to support his claim, as well as some disturbing  trends that he has observed.  And in one sentence, Dr. Wes encapsulates everything that is wrong with our health care system today.

So when we spotlight doctor burnout, or, say, the lack of patient safety in hospitals without acknowledging the realities health care workers face like looming staffing shortages and pay cuts, we risk fanning the flames of narcissistic rage against the very caregivers whom we depend on the most – the very caregivers who are striving to do more with less, check boxes while still looking in the patient’s eyes, meet productivity ratios, all while working in a highly litigious environment.

While I understand the basis of this concern, I think we should take a step back and realize that this uneasy feeling is the end result when patients and doctors are intentionally wedged and divided by forces that place us in opposition to each other.  I’ve spoken about this here where I talk about some of these forces, and how I was a victim of the system here.  When I talk about these forces, I am talking about a system of health care that is built in such a way where doctors and patients are not allowed to see eye to eye.  This is a system, intentionally or otherwise, which thrives on and encourages the fragmentation of health care.  This is a system that is built from the foundation and belief that health care dollars are infinite when in fact all of our resources are structurally finite.  The system is accepted by doctors and patients as an acceptable normal.  But yet, I think we all must feel in some way that something isn’t quite right here.   We are all culpable in this situation, because it is our status quo, it feels comfortable, and perhaps it is the system that was promoted many years ago by our previous generations.  But doing nothing about it may end up with our health care becoming a victim of itself, to the detriment of everyone involved.  Ian Curtis of Joy Division eerily summarized how this whole situation could be playing out between doctors and patients…

When routine bites hard,
And ambitions are low.
And resentment rides high,
But emotions won’t grow.
And we’re changing our ways,
Taking different roads.

Love, love will tear us apart again.

Contrary to the status quo, I see a vision of health care that could be dramatically different, where doctors can be of direct service to their patients again.  Some doctors have chosen to move towards a direct pay model as a stick in the eye to the current health care system where primary care physicians are undervalued and underutilized.  I applaud their efforts and I think there are patients that resonate with these different and highly engaged models of healthcare.  Other communities have embraced a type of  healthcare that focuses on lifestyle changes, focusing on mindfulness, and a holistic view of health care that aims to reconnect the healers even though these types of treatments may not financially rewarded well.  Nevertheless, it is an important step, and it is further evidence that we are, as a population, are looking for a better model of the doctor and patient relationship.  I believe that health information technology is also not immune to these types of disruptions, however small they may be at this time.   This is why I feel that using  technology that aims to bridge the digital divide between health care providers and between doctors and patients is the next step towards the goal of improving the doctor and patient relationship, if done thoughtfully.  To me, an open-source health care software movement, where proprietary, locked-in technology and high cost goes out the window, is the best way to achieve this goal.

To me, the first step towards doctor and patient cooperation starts with regaining ownership of health care data.  Right now, the data is increasing in the hands of agents that encourage our current health care system, where data and analytics aim to improve the bottom line, and not necessarily for the general well-being and health of our communities.  This is where the “McDonaldization” of health care will have met its ultimate Orwellian goal, where the health care providers will no longer enjoy the art of practicing medicine, and patients will be defined as widgets and data points rather than real people with diversity,  experience, cultures, and backgrounds.  It’s not too late, but if this is not the vision you hope for in our health care system, you are not alone.  Let’s start engaging, talking, and unleash our desire to change our health care for the better.

One action that you can take today is to support my open source project.  This is a community-based effort.  We need to start somewhere.  There are only 5 days left to go on my Indiegogo campaign!  Let’s do it!