Ask HN: Have you ever heard of users demonstrating against software?

Secondary to the question, but I live right by the Epic campus and use the Epic MyChart platform to communicate with the University of Wisconsin health system. It is phenomenal as a patient; I can handle all billing, message any doctor I've seen, view test results as soon as they're uploaded, etc. Recently I saw the results of some bloodwork in the ER before the nurses had time to come and tell me about it. (The UI/UX is awful, though.)

I look at the screens of the medical staff when I'm in the office and I can see why they don't like Epic; bad UI/UX and they definitely reorder and rearrange common menus when there's a big update. For overworked medical staff it's got to be a nightmare.

There must be a middle ground. I never want to go back to a healthcare system where I don't have something like Epic, but also it would be nice to have a platform with a more stable, simple design philosophy.

electriccatblan · 3 years ago

Disclaimer: My Epic experience is around a decade old.

I never saw a riot, but I definitely saw providers who hated Epic when it was installed. As in people literally screaming at the top of their lungs at IT nerds. I saw a few contributing factors:

1. Epic supports making all the technically-mandatory-but-not-mandatory-if-you're-in-a-hurry data actually mandatory, so providers have more typing and less ability to just get stuff done when needed (which minimizes agency).

2. Related to above, Epic will make the updates for any new regulation, which increases the amount of data providers need to collect.

3. The customizability of the Epic UI and workflows for each type of visit was completely insane; many permutations of steps in a visit had to be supported which meant a huge maintenance surface with ok coverage rather than an opinionated workflow for each visit that could be optimized and improved over time.

rsynnott · 3 years ago

> The customizability of the Epic UI and workflows for each type of visit was completely insane

Ah, Lotus Notes Syndrome.

emmelaich · 3 years ago

Interesting, because I think enforcing an opinionated workflow would be a similar mistake to enforcing mandatory requirements.

There should be some flexibility in both.

PubliusMI · 3 years ago

>technically-mandatory-but-not-mandatory-if-you're-in-a-hurry

an1sotropy · 3 years ago

I agree that my healthcare interactions have been improved by Epic. But Epic has no motivation to keep improving, because they control most [1] of the US medical records, and once a hospital is a client, its practically impossible for the hospital to also try a competitor's record management system (medical records are not unique in the enormous cost of switching between systems). So even while we can be glad for mychart we will suffer the increasing downsides of Epic's practical monopoly, without even knowing how much better it could be.

[1] https://www.forbes.com/sites/katiejennings/2021/04/08/billio...

etiam · 3 years ago

Now proceed to imagine that software being shoehorned into a healthcare system where many aspects of the US healthcare system are impossible to fill out at the care provider side, because they don't exist in the society model. (Let's be honest, you guys have opted for a model which have several very distinctive features in an international comparison).

And I'd be surprised if the Norwegians didn't already have the positive aspect on the patient side in whatever this is now supposed to replace.

quijoteuniv · 3 years ago

yes, the patient side already exist here as far as I know. Helseplatform use their endpoints. The integration is mostly for the hospital, pre-ER and city health services. The pre-ER or LegeVakt (Scandinavian system you call/go if you need assistance but is not life threatning) has been using it for a few months and service level is now so bad that they have apologised in the newspapers. The city that has been sold this system had a wishful thought that all the doctors practices (and all Norway) was also going to use it. This is simply not going to happen now. However the "city" used so much money on this that they refuse to hear the health personel and insist on going further with the project without improving the system. Apparently Epic selling points was something like "It is not going to happen what happened in Denmark" Maybe some Danish people can iluminate on what happened there.

semi-extrinsic · 3 years ago

There are a couple of use cases that the new platform is solving, that were not straight-forward in the old system. Primarily the fact that your GP/family doctor and the hospital system did not have access to a common set of health records, they had to send specific requests for copies back and forth. As an example, when you're pregnant you get this special paper booklet where all your information gets recorded by GP/ultrasound/midwife/etc., and when you go to give birth you have to bring this booklet and give it to the midwife so they can see your pregnancy-related health records.

But we have had for a long time a website called "Helsenorge" where you can log in and access most of your health records. For example during covid this was used to give you PCR test results and that worked flawlessly, you get an SMS notification when you have updates to see.

So a big part of the "why on earth are they using this Epic software" sentiment is the feeling that we would be much better off by extending the Helsenorge system to do what we need. Especially since it's only a small part of the country going with the Epic system, and other parts will run other systems - a legacy of the previous privatisation-trigger-happy government.

There are also a lot of obviously broken things on the end-user side in Epic Mycharts. For one, you cannot change the language in the app, it is tied to your phone system language. So if you're Norwegian but prefer to use Android/iOS in English, you're stuck with poor translations to English that you have to guess-translate back again to Norwegian.

The app needs a new login after 10 minutes of inactivity, and this login is using a semi-complicated Norway-specific MFA called BankID that is run by the banking sector, so the login flow takes about a minute to complete. This means you can't actually get push notifications from the app, since it's never logged in while running in the background. So you get SMS and/or email notifications instead.

There is a lot of cruft related to insurance and billing stuff you have to scroll through in the menus that will never be useful to anyone in this country, and nobody understands why they can't just hide those buttons.

There are three different types of messages you can send - Letter, Question and Message - nobody knows what is the difference and one of them redirects you to the other when you start to compose something.

When you go to view your health records summary, there is a big text box at the top which says "Take care, the results here might be displayed in a mixture of Norwegian and American formats" - they have obviously not learned the lessons of the Mars Climate Orbiter failure. For instance it says "Marital status: Gift" on my summary.

To access my children's health records I had to send Proxy Data Requests for each one, which went through a rather complicated login flow every time. Then after three weeks I got a message from some random person saying I have access, apparently there are some poor souls sitting somewhere and manually verifying that yes, this person is the child of that person, even though that information is already in the Helsenorge database.

All in all it seems that either the Epic system is such a horrible pile of fragile spaghetti code that nobody dares to touch it and adapt it to our use case, or we are simply such a small customer that they can't be arsed to fix our woes.

It kinda feels like when you are using any product from Google or Microsoft, only in this case you're paying Microsoft a couple hundred million to adapt the software to your organization and still have that feeling.

closeparen · 3 years ago

>message any doctor I've seen

Doctors especially hate this part, since they don't get reimbursed for fielding these messages and (unlike scheduled appointments) there's no limit to how many there can be or how quickly they can come.

analog31 · 3 years ago

In every case that I've messaged a doctor through Epic, a nurse replies. I doubt that the doctors are being interrupted at random moments to field these inquiries.

WWLink · 3 years ago

I feel like that's something that should really be accommodated for in the billing/insurance model. It kinda is with HMOs and primary doctors, AFAIK they get paid whether you see them or not. Just not in the PPO model.

(I warn, I know nothing about how it actually works!)

matheusmoreira · 3 years ago

Yeah. These messaging services essentially place doctors on call at zero extra compensation.

kelnos · 3 years ago

Yeah, UCSF here also uses MyChart, and I agree that it's great from the perspective of the power and flexibility it offers me, even if the UX isn't fantastic (frankly, I think it's fine, though could be better).

But, like you, I've also observed medical staff inputting my data during a visit, and it looks terrible, and I've also noticed significant UI changes on occasion. (I've gone in once a month for the past two years for an allergy immunotherapy injection, so I get to see it regularly, and over time.) I've only heard the nurses complain once or twice, but I can kinda tell how they occasionally stumble with the UI, and it all just seems completely unavoidably bad. A little user research would go a long way, but I imagine the cost of switching to another system (if there even are that many good options) is so high that a hospital might ignore staff complaints anyway, so the company is not incentivized to spend time and money to make things better.

actually_a_dog · 3 years ago

Medical staff don't like Epic because it's the kind of software that's sold to administrators, but used by providers. Guess who has the most sway in things like what features are included and how much effort gets invested into making the UX good?

bearjaws · 3 years ago

Bingo, Epic has probably the most in depth sales team, they know everything about your organization and YOU before even starting the call.

They will smooch, take to dinner, do whatever it takes to bribe the head of office staff. Then once they're in the door they convince you to hire 5-10 of their 'Epic Engineers' and charge you $500+ an hour for the honor.

Soon you discover that you can never really get rid of those engineers and need to hire your own on staff team... Which you probably could have done with literally any other EMR if you wanted to customize it.

2 years in the medical staff hate life and the front of house staff have costed their business 50-100M in fees.

Alberta found this out the hard way after spending 5 years and 450M+ on Epic. Roughly $100 per person in the province was required to get Epic 'running'. (I am not sure if its been rolled out to all of Alberta?)

colinmhayes · 3 years ago

I have some doctors in my family and they told me that when their system switched to Epic, Epic sent a consultant to sit in their office for months and answer questions because every new user complains about UX.

alchemist1e9 · 3 years ago

Totally agree. Even better is doctors from different providers can likely see your records from each other. It isn’t fool proof but it’s getting pretty good. If a provider doesn’t use Epic then I’ll be looking for a different provider at this point.

permo-w · 3 years ago

I don’t mean this to sound passive aggressive; I’m genuinely unsure: are you using “UI/UX” correctly here? if you’re getting exactly what you want from it, is that not good UX?

Bedon292 · 3 years ago

Its definitely possible for something to work and still suck to use. Just because you can get there eventually doesn't mean the experience of clicking through a dozen menus to find where a button has been moved with this update is a good one.

quacked · 3 years ago

Maybe? I think that the system is poorly designed, but I can still do everything I want to do with a medium level of difficulty in achieving it. MyChart is way better than nothing, but it's not as good as "a good version of MyChart".

Having worked in IT supporing doctors, nurses, scientists, and academics for the last 23 years, in all honesty, it doesn't matter what they would have chosen it would have resulting in a percentage of them complaining. Doctors like change that they control and understand, such as research leading to new treatments and improved patient outcomes. They do NOT like having their workflows challenged, though. They have very specific prescriptive actions that they live by, and again, they only like changing those when it benefits them in some tangible way. EHRs benefit their -institutions- in tangible ways, not them. EHRs benefit billing, administrative, regulatory departments more than they benefit providers... in the eyes of the providers.

I work at an institution made up of components institutions, many of which use their own independent EHR systems. What doctors LIKE are the ones they get used to in their residency, fellowships, and first years in practice. Older doctors coming from paper straight to ANY EHR will struggle without extensive assistance from their support staff. Nurses rarely get support staff, and usually ARE the support staff to a provider in addition to their nursing duties. The overall feeling I get, though, is that most of them that have used Epic like it. Cerner as well. Some others in the institution like Meditech, less so (due to largely archaic interfaces dressed up with some more current UI). But Epic and Cerner are the big players in the game. There are many, many others, and in the end what ends up mattering is the support staff for the EHR both local and vendor. One we use has gone to a lot of off-shore tier 2 and tier 3 support staff lately, and it truly is a struggle in unforeseeable ways (such as terrible telecom infrastructure making it often impossible to communicate with vendor support staff). They are all focused on new customers and growth and then maintaining the customers, and it certainly makes you feel like an afterthought as a standing customer.

akira2501 · 3 years ago

> What doctors LIKE are the ones they get used to in their residency, fellowships, and first years in practice.

From observing a family member implement these systems, I'd say that what doctors like is an administration that's willing to listen to their specific complaints and then get the changes or some subset of them implemented in the system. There's often a fair amount of customization that can even be done at the customer level to achieve this.

Seemingly, too many institutional administrators fall in love with the sales pitch and then are demoralized into acrimony when their doctors don't just automatically feel the same way on the roll out day.

belmarca · 3 years ago

I have also worked in healthcare IT and while user input is obviously essential for building an efficient and useful solution, too much of it can be a kiss of death.

quijoteuniv · 3 years ago

Organizational changes come with resistance in all fields but if your doctor & nurses go out in the streets and say : people is likely going to die because of this, maybe is time to hear out.

conductr · 3 years ago

I can echo this with about as much time in the industry. I've seen it from most angles. As a clinician, they hate change and the software is usually clunky and slower than paper. So they dislike it. As senior management, when we poll nurses, since they have all worked elsewhere recently given turnover is just naturally high, they prefer Epic by a wide margin. But they still complain and need constant training (turnover, implementation specific quirks, and so on). It's very similar to an ERP. It's a large complex application that is pretty expensive and many people will use and nobody will like.

Scoundreller · 3 years ago

> One we use has gone to a lot of off-shore tier 2 and tier 3 support staff lately

Does the company name begin with an A, before and after?

matheusmoreira · 3 years ago

> What doctors LIKE are the ones they get used to in their residency, fellowships, and first years in practice.

"Like" is too strong a word here. People simply get used to these terrible systems. They learn how to work around the annoyances. They come to tolerate them as facts of life that they have no control over.

soared · 3 years ago

Old school RuneScape is an mmorpg where each game update goes to a vote, and if it doesn’t get 75% approval the updates are not worked on by devs and don’t get released. The community feels a strong ownership and connection over the game. So much so that when the development company (Jagex) makes a wrong decision, it’s common for users to “riot” in game. They go to a specific world, at a specific town, place down specific items, and chant.

While not rioting in real life, it feels familiar.

Wiki article about an example with a video. Occurred prior to the voting system, but still occurs even 15 years later https://runescape.wiki/w/Pay_to_PK_Riot

exar0815 · 3 years ago

Having been part of multiple gaming communities where the game was destroyed by the developers with updates the community told them would not work, were bad for the gameplay or just plain out of scope (not wrt to monetization, just gameplay elements or mechanics) and them pushing on, mostly either ridiculing, ignoring or even insulting said players, this sounds like a dream. Results were basically the same. The death of 90% of the enthusiast community in mere months.

kaetemi · 3 years ago

Sounds very familiar.

DiggyJohnson · 3 years ago

I’m writing a book about Why We Play RuneScape, and the evolution of democratic updates is one of my favorite topics.

Dead Comment

armchairhacker · 3 years ago

Usually I hear bad things about Jagex, I’m surprised they have a system in OSR where they don’t make changes without user approval

xboxnolifes · 3 years ago

As a current player, I feel a lot of the bad things talked about Jagex are more on the management side rather than the development side. Most of the known OSRS devs and community staff are held in pretty high regard, and my limited interaction with the RS3 community suggest some of the same. The most regular complaints are about how many microtransactions are in RS3, how poorly the devs are paid (though, that's also the video game industry as a whole), and specific events that seem to be very much streamlined through by management and then later patched up after community backlash.

Some changes do get into the game without player approval. The idea behind them is that some changes are necessary for the long-term integrity of the game (in-game economy, gear balancing, etc). They are always controversial.

Macha · 3 years ago

OSR exists to to serve their legacy userbase it feels like, who are older and therefore more likely to purchase subscriptions (so they feel it's worthwhile from a business POV) but also more likely to be put off by the level of microtransactions they wanted to put in RS3. So after some very vocal criticism, the "by vote only" system was basically put in because it was the only way what became the OSR community could trust them.

bsagdiyev · 3 years ago

Interesting way of doing it. I haven't played official RuneScape in a while but glad to see some input is taken by the devs.

Game I learned to code on/with, writing java bots around 2001 time frame. Involved in the big dupe, fun times. May need to see how much has changed.

codetrotter · 3 years ago

> While not rioting in real life, it feels familiar.

The Ultima Online postmortem session from GDC 2018 has some similar stories about in-game protests. The stories in said session are quite entertaining, and there is a lot of other interesting information too in the session. The whole thing is worth a watch.

https://youtu.be/lnnsDi7Sxq0

cynusx · 3 years ago

wait, you're telling me Runescape is still alive?

midasz · 3 years ago

Yeah, at least Old School Runescape gets weekly updates. It's apparently bigger than something like Elder Scrolls Online. Community is also really active, with an open-source client (https://runelite.net) and one of the best game wiki's I've ever seen (https://osrs.wiki).

Fun fact, JaGex at some point decided they wanted to ban the RuneLite client, riots ensued, and now RuneLite is actually listed on the official website.

humanistbot · 3 years ago

There was a case more than 20 years ago of a similar revolt against a Canadian hospital's automated drug dispensing machine that would only let nurses withdraw the exact dose of medicine a patient needed in a short window around when patient was supposed to take each dose. It was so bad it got written up into an academic article: https://journals.sagepub.com/doi/abs/10.1177/016224390202700...

> they resented features that controlled their time and their autonomy

Of course. Nobody likes being controlled by software. The computer is supposed to obey us, not the other way around. Software controlling humans is a violation of basic human dignity.

zajio1am · 3 years ago

Pretty much same argument could be said against checklists ('paper controlling humans is a violation of basic human dignity'), but it is a thing that consistently improves outcomes in medicine.

In general, it is restricting autonomy in order to improve consistency and quality.

wombatpm · 3 years ago

Computer says No

Deleted Comment

prox · 3 years ago

That reminds of that Star Trek episode “Critical Care” where people only get the resources allowed by an AI overseer. How does this even pass an early review?

dleslie · 3 years ago

The problem with substance abuse, and stealing to sell, was then and remains now a widespread problem in Canada's hospitals.

hotpotamus · 3 years ago

It sounds a bit like the smart contract/DAO thing, doesn't it?

becurious · 3 years ago

Diversion of painkillers is unfortunately a thing and so those are often now in computer controlled cabinets that track dispensing. It’s the right thing to do because if a HCP is doing this they need help.

msbarnett · 3 years ago

Sure. Public servants rally in Ottawa to protest Phoenix payroll system: https://ottawacitizen.com/news/local-news/public-servants-ra...

Highly doubt that this is the only time a Peoplesoft clusterfuck inspired demonstrations, either. Some software is just unbelievably shitty.

3pt14159 · 3 years ago

Also, ArriveCan was frequently mentioned by many in the protests around covid.

From my end: I dislike near-mandatory apps by governments, but I felt like Covid was an exceptional time and at least it is non-mandatory now at the boarder.

h4n1 · 3 years ago

ArriveCAN was quite stupid, but at least it was fairly simple and the mobile app was just a convenient wrapper around the web app. It could have been so much worse.

MisterSandman · 3 years ago

Holy shit. The lady at the end wasn't paid for 7 MONTHS! How the fuck is this legal?

It is broadly speaking not legal. Many lawsuits spiralled out of this. In the broadest settlement, workers were entitled to $2,500 in general damages plus any out-of-pocket costs & losses incurred due to this clusterfuck including "a compensation process for severe impacts such as ruined credit ratings, accumulated interest on loans or credit cards, loss of security clearance due to bankruptcy, mental anguish and trauma, or loss of savings from cashing in investments such as RRSPs to pay debts". There's still other lawsuits ongoing.

smoldesu · 3 years ago

There is the infamous "Windows Refund Day" http://marc.merlins.org/linux/refundday/

drivers99 · 3 years ago

Another one I remember is the protest against Adobe. https://www.eff.org/press/archives/2008/04/21-19

317070 · 3 years ago

Here you go, from a UK protest against a programme for automatically grading students. If I remember correctly, there were street protests across the UK.

https://twitter.com/carolecadwalla/status/129527788941230489...https://www.theguardian.com/education/2021/feb/18/the-studen...

awinter-py · 3 years ago

related, people were pretty angry about covid-era remote exam proctoring / goguardian-style spyware

collegeburner · 3 years ago

there was some pretty serious protesting against honorlock at my school cause it's invasive shady shit nobody should have to use. no actual demonstrations though since a lot was zoom at the time (and also bc signing a petition worked fine).

yassini · 3 years ago

I've seen a few people protesting against GitHub, mostly because they profit of the code that is hosted on there (notably GitHub Copilot) More on that here: https://sfconservancy.org/GiveUpGitHub/ Though this is online.

For real life, people in Germany went to the streets a few times already because of the so-called "Staatstrojaner" (Basically a trojan that they can inject into all devices of someone who is "suspicious" in the governments eyes, they're probably using Pegasus, but I'm not super deep into that topic). Ref: https://netzpolitik.org/2022/protest-so-war-die-erste-demo-g... (There is way more on that though)

smallerdemon · 3 years ago