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Why US Healthcare sucks and how I’m trying to change it (delian.io)
29 points by MIT_Hacker on Oct 29, 2013 | hide | past | favorite | 33 comments



Totally wrong. The reason the US healthcare system sucks is that it's an oligopoly. Medical schools limit enrollment to limit the supply of doctors thus keeping salaries higher than they otherwise would be. Nurses unionize to drive up their own wages. Insurance companies pile on the paperwork because they can charge you for it. Doctors are incentivized to push more expensive drugs and procedures because they make more money. Drug companies develop drugs that will make them the most money and wine and dine pharmacists and doctors to ply their drugs. Thus those that can pay end up paying more and more. Those that cannot get no coverage at all. Oligopolistic capitalism at its finest. Everyone in the system gets paid off a bit to not rock the boat.


    Nurses unionize to drive up their own wages.
Ah that old canard. Fewer than 20% of RNs are in unions. Those in unions do make more than their non-union counterparts (~$200 more per week [1]), but if you think that's why nurses tend to unionize, you're fairly far from the mark. Especially since real nurses wages haven't increased in the past 10 years.[2]

Imagine that being a programmer required a license from the state in order to practice. Now imagine that if you make a significant error, you lose that license, pretty much ensuring you could never make another dollar in salary as a programmer. Say your work consists of doing week-long projects, with a team of 4 other programmers. Your code must be released weekly and must be bug-free. Now what happens when your boss realizes he could save 40% on costs if he cuts your team from 5 to 3? Or to 2? How likely are you to release bug-free code? That's the situation for nurses.

Adding to that, nursing is one of the most dangerous jobs in the country based on the number of on-the-job injuries and missed-work.[3] Most of these injuries are caused since hospital staffs are being cut, which leads to nurses having to lift, turn, and dress patients without additional help.

Furthermore, nursing care levels are directly correlated with improved patient outcomes, shorter hospital stays, lower mortality, and a number of other positive indicators. [4]

So you have hospital management on one side, who's incentives are to cut pay, cut hours, and cut staff (and frankly, to keep patients longer). And then you have nurses / techs / etc. on the other side, who are more likely to injure themselves, more likely to lose their licenses, and more likely to provide substandard care with those cuts. Do you honestly think unionizing is a bad idea?

[1] Barry Hirsch and David Macpherson, “Union Membership and Earnings Data Book,” The Bureau of National Affairs. Bloomberg. 2012. [2] http://www.ananursespace.org/BlogsMain/BlogViewer/?BlogKey=c... [3] http://www.bls.gov/news.release/osh2.nr0.htm [4] http://www.nejm.org/doi/full/10.1056/NEJMsa012247


IMHO, unions are obviously a counterbalance against management but the truer axiom would be that power corrupts. So just as unfettered power on 'management's side can corrupt so it can on the unions side.


You're the one showing bias here. I never said unions were bad, just that there is collusion across the system because there is so much money to be had. And I include the nurses unions in the lot just as I included every other party in the system. If you haven't noticed, nurses are doing better than most of the rest of the workers whose real wages are actually falling.


I agree. So how do you break such an oligopolistic system? Maybe by introducing the one thing it tries to hide in order to stay alive: radical price transparency. At the very bottom are the patients who search for care and primary care givers, let's include surgery centers for large but rare tickets. If you connect both fundamental entities directly, you create a brutally and publicly transparent market place where competition, innovation and price pressure could force the market to first just slightly shift but eventually see falling costs because some will offer better prices at higher quality. Without such an open platform though, I don't see how any regulation or for that matter functional changes in the technological landscape will make any big impact.


I can't agree more. Coming from socialized medicine countries like New Zealand and Australia this is a no-brainer for me. Medicare (which EVERY Australian gets) sets reasonable rates for almost any procedure. They also give Doctors incentive's to charge these set rates. A doctor can charge what they want, but if they do their patients have to pay out of pocket and go to medicare to get compensated. That means less patients choose those doctors. A doctor that charges the scheduled fees is able to "Bulk Bill" that means that the government will transfer payment directly to the doctor (I am not sure how regularly), which means they are likely to have far more patients and really it keeps everything more convenient (No cash on premises, etc.)

On another point, I think that a serious problem is Tort Law. Unfortunately it's such a complicated debate I don't think it could ever be resolved in the US. I personally believe the New Zealand government has this perfect with the ACA (http://en.wikipedia.org/wiki/Accident_Compensation_Corporati...). While it is still possible to pursue a civil suit against someone, in the case of a car accident for example. No lawyer is going to do this pro-bono. You have the right to claim medical and loss of work directly from the ACA, therefore the likelihood of a New Zealand judge awarding a large claim would require some serious negligence by the other driver and even then the cost of pursuing that would not be worth the risk. After all, a "normal" person would be satisfied with being medically taken care of and having any loss of income recovered. This will not sit well with those that feel "SOMEONE SHOULD PAY FOR THIS! AND THIS IS THE PAY DAY I'VE BEEN WAITING FOR"


I think if you really boil it down the most fundamental problem with medicine in the USA is there are no prices. There is no functioning market for products and services because everything is structured to insulate customers up-front from prices.

Everybody gets charged differently. Everybody ends up paying different amounts for the same thing. The numbers on bills seem to come out of an after the fact lottery ball mixer.

Probably the best reform would have been to eliminate the tax deductibility of insurance benefits. A much larger fraction of people would choose high deductible plans and be price sensitive shoppers, imposing some market discipline on the system. But of course obamacare is a move in exactly the opposite direction.


Couldn't agree more. Dr. Keith Smith describes your suggestion actually as the "Obamacare Paradox". He thinks that the ACA unintentionally created a situation where premiums and deductibles sky-rocket. It's unlikely that they designed it that way, probably hoping the subsidies would sugercoat the insurance prices or in the worst event increase pressure towards a single payer system. However, as it stands, it seems that quite a lot of people esp. in the middle class won't be able to afford the kind of insurance offered on the insurance exchange. They will HAVE to find local doctors that offer concierge memberships (very affordable) and cover themselves with a catastrophic insurance or none - because, in effect, the monthly premiums are too high, so that they take away the money people actually NEED to pay for medical situations for their kids/families.


Go back one item in his posts, to http://delian.io/an-apology-to-president-reif-and-the-mit-co...

"..."

I can't imagine trusting this guy, or anyone willing to work with him, with ... anything, let alone implicit and explicit access to medical information, until he presumably grows up a bit a decade or two from now.


That's pretty harsh. It seems like it was a relatively harmless prank that he didn't even intend and immediately regretted. I don't understand why you judge that so harshly or why you immediately dismiss his work based on it.


Having learned more (see the additions to my reply to his reply), I wasn't even vaguely harsh enough. He should have done some jail time (a few weeks, a misdemeanor is enough), and if he reapplies to get back into MIT I hope the Dean he has to talk to doesn't go softhearted absent a major attitude adjustment that has yet to occur a solid half year later.

Of course, I'm also one of those members of the MIT community who believe Aaron Swartz should have done some serious time in Club Fed (> a year, i.e. felony), am not in the least swayed by his exit from a mess entirely of his own making ("If you aren't willing to do the time, don't do the crime.", incalculably stupid for someone who suffered from depression), and am rather perturbed by all those taking the side of a criminal again MIT to the point of committing even more crimes against the community, like this one.

To answer the rest of your points, it comes down to character, and his actions and most especially his responses afterwords conclusively demonstrate he isn't worthy of the trust which is required for this sort of access to people's health information.

I don't "dismiss his work" so much as "don't trust him or anyone of such poor judgement to work with him" with a service handling sensitive stuff.


Ahhh. The past always burns. You live and you learn.


You know, some of us never had to learn from that sort of experience not to do seriously damaging things, especially when the potential for damage is so obviously high, and the activity is entirely optional.

People like you give "hackers" and at least the newer generations of MIT undergraduates a bad name.

ADDED: Your fellow members of the MIT community aren't too impressed with all this including your apology: http://tech.mit.edu/V133/N13/fakeemail.html?comments#comment...

AND MORE ADDED: And now reading them, you did this during "hell week" (midterms)? Were you even still a student then???

FINAL ADDITION: can you show us the slightest evidence you've learned anything but "Don't get caught next time" (assuming the speculation that this was more a PR stunt than anything else per some of the comments in The Tech is false)?

Disclosures: I'm class of 1983 and have close non-academic ties to Course 6.


Delian - love the initiative!

There are a few basic assumptions underlying your vision that may be useful to flush out further (I can tell you that, from similar experience, what you are going to bump in to is a fundamental lack of desire from the majority of the system to see change).

1. You are betting that Obamacare will actually drive the system towards "accountable" care -- we are a long way off from this unfortunately. I won't rehash it all here, but many ACOs are turning back from the model: http://www.hhnmag.com/hhnmag/HHNDaily/HHNDailyDisplay.dhtml?...

2. You are betting that patient engagement in their own health will be high, particularly for the high cost, at risk patients. This has been historically proven not to be the case. High touch intervention + technology works (i.e. take a look at the Diabetes Prevention Programs now being run digitally by organizations such as Omada) but technology by itself has had a pretty low hit rate with driving meaningful patient engagement for the at risk populations. For some reading on the challenges of adherence, check out: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661624/

I really do think we need more people working on these problems, so keep at it, and if I can help at all please let me know!

(drop me a line at andrei@humanapi.co)


> You are betting that patient engagement in their own health will be high, particularly for the high cost, at risk patients. This has been historically proven not to be the case.

The commonest reason for transplanted organ failure is that the patient isn't compliant with medication.

This happens in UK (free surgery, free meds) and US (expensive surgery, expensive meds).

It's weird.


I've worked in the Health IT space for 15 years and agree with you that it's a mess. But your POC site doesn't really show anything or explain how you're going to solve the problems you described. How is this information shared with physicians? How is it made available when a patient shows up to the Emergency Dept? All of the information you displayed should be condensed to one page. What is the point of knowing if a patient missed their meds three weeks ago? You can't berate a 75 year old for missing their meds. What you're recording isn't as useful as you think.

The problem population today is elderly patients with chronic conditions, either landing them in the hospital constantly or requiring regular visits to specialists, labs and pharmacies. This population does not use smart phones. So the burden is on the physicians and hospitals to track the information and coordinate care.

The whole idea of Accountable Care Organizations (What you described as "The New Model") is to coordinate care. ACOs are pilot projects, most just barely starting up. So the reality is only a fraction of the population in the US will be affected by these organizations. The big workflow change is really for the nurses who gather the information, not the physicians. The goal of ACOs is to improve outcomes. ACOs receive bonuses if the can improve outcomes for the same cost or less that is being paid for the same population today.

Also as a FYI, everything you described as Obamacare (ACOs / EHRs) was actually developed and funded in 2009 by ARRA, not last year in the ACA / Obamacare.


Although I agree that EHRs largely suck, it is not the elephant in the room. From a technology perspective, if you really want to fundamentally change healthcare then you have to tackle diagnosis. For the majority of illness and disease, we still do not have a good set of technologies that diagnose accurately, quickly, and cheaply. Instead a physician makes an educated guess based on symptoms and sometimes on tests. Tests which give clues but rarely a definitive answer.

I don't know what the answer is, but I know that the sooner we take the "art" out of medicine, the sooner healthcare will get a lot better.


For those that haven't seen or read Paul Graham's bit on ongoing diagnosis: http://www.paulgraham.com/ambitious.html (#7)

Or if you prefer to watch it from 2012's PyCon: https://www.youtube.com/watch?v=R9ITLdmfdLI#t=1587


Maybe an app to diagnose malign melanoma Galaxy Zoo-style? :-)


Interestingly enough, the picture you showed is of VISTA used in the VA hospitals, which is generally considered to be the most usable EHR by clinicians. An ignominious honor, perhaps, but it's worth consideration. 60% of doctors know how to use it, since most doctors do some type of rounds through a VA hospital since it's the largest medical system in the United States.

You're right, most EHR UI is bad and it's built upon old technology. It entirely pre-dates the "design era". But, part of the reason for this is that healthcare was one of the first major industries to use IT heavily. What these systems lack in modern design principles, they often make up for in stability and ability to support system flows for larger organizations.

I admire your spirit and I hope that you do make an impact on healthcare. But, it might be wise to try and glean some lessons from the past vs. writing everything off as something that "fucking sucks". You might learn something along the way on your path to making health delivery better.


Thanks for the note about the picture. I knew it didn't look like any remotely recent screen in Epic. I worked for Epic for a couple years circa 2008, and even then it would have looked outdated. Also, at least in Epic, I know there's a huge focus on usability. That doesn't mean they always succeed, but it's not for lack of trying.


This guy is a huge jackass.

http://delian.io/an-apology-to-president-reif-and-the-mit-co...

I wouldn't have anything to do with him or his company.


Not only that but he obviously hasn't heard of begging the question when he says:

3. Jim is released but doesn’t improve his habits and has another heart attack


>> I want to one day build a clinic run without an EHR. All of the personal health data of a patient will be stored on their phone. Each time they come into the office, they’ll give OAuth access to one of our physicians...

I like this idea, but patients vary wildly in responsibility. You'd have to have a plan for those who can't or won't keep track of anything.


I agree. It's the first thing I thought when I read it.

This is a stunningly huge point of failure with a very high probability that any one patient will either: forget their phone, break their phone, not have a phone, have the wrong phone, have no charge on their phone, not know how to use their phone, have an out-dated phone, etc. I think you get the idea.


Something to keep in mind is that many people with the worst health prospects/problems (e.g. Medicare/Medicaid patients) are the least tech-saavy/have the worst access to tech-enabled solutions to addressing their health problems. These patients make up a non-trivial portion of any provider's patient list.

Kudos!


One correction, or whatever.

The fines did not force more doctors to look at EHRs, it forced many like my Doctor and those in his office complex to sell their practices to big Medical conglomerates. So from a complex of multiple independent practices, many decades old, they all sold. Now they are employees of these conglomerates and there is now staff who deals with EHR, they just ask for print outs and fill out forms.

As for Doctors suddenly becoming responsible for managing their customers care, well that will lead to less individual practices as they won't be able to afford those patients who cannot be managed.

Your now a number to be managed. Fortunately for me my Doctor remembers his long term patients. He will be here till they finally force him out.


Your doctor could always get http://drchrono.com. Its practice management/EHRs for ~$100-500/month.

Not affiliated, just a huge fan.


He is spot on about how bad EHR UI's are. We really need some people who know something about user friendly UI's to release a good EHR.


What happens if you are brought in unconscious?

Every so often people come up with this idea of the patients holding their medical information rather than the institutions but they tend to suffer greatly in emergency situations and/or have tortuously complicated hierarchies of trust and security.


Agreed.

EHRs should be centralized, but with extremely tight controls, either managed by a non-profit GSE or a government agency with an extremely high level of accountability.

If you go to any healthcare provider, they can request access using your government ID number (driver's license, etc). If you're conscious, you can approve this request using a two-factor auth notification on your phone (SMS, push, whatever). If you're at the ER and unable to approve the request, they can override the request, but its flagged and its going to need to be justified.

The answer, as always, is complete transparency and accountability.


How do you stop patient's from deleting health information they deem 'not important' or 'too embarrassing'? I think it is important that health professionals keep their own records of patient health.

Although, I do agree software in hospitals is NOT user friendly!


It's going to be hard to effect the "change" so many are seeking when folks continue to confuse and conflate "health", "healthcare", "the healthcare system" and "health insurance."




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