Expert Healthcare Hackers

(This is a preview of a talk that I am going to give next week at Healthcare::Refactored, with Karen Herzog)

There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like:

“A person adept at solving technical problems in clever and delightful ways”

While the one portrayed by popular culture is what real hackers call “crackers”

“Someone who breaks into other people computers and causes havok on the Internet”

People who aspire to be hackers, like me, resent it when other people use the term in a demeaning and co-opted manner.  Or at least, that is what I used to think. For years, I have had a growing unease about the “split” between these two definitions. The original Hackers at the MIT AI lab did spend time breaking into computer resources… it is not an accident that the word has come to mean two things.. It is from observing e-patients, who I consider to be the hackers of the healthcare world, that I have come to understand a higher level definition that encompasses both of these terms.

Hacking is the act of using clever and delightful technical workarounds to reject the morality embedded default settings embedded in a given system.

This puts “Hacking” more on the footing with “Protesting”. This is why crackers give real Hackers a bad name. While crackers might technically be engaged in Hacking, they are doing so in a base and ethically bankrupt manner. Martin Luther King Jr. certainly deserves the moniker of “protester” and this is not made any less noble because Westboro Baptist Church members are labeled protesters too.

Like protesting, Hacking is all about taking a certain set of ethical issues that are important to you, and then performing an act whose central purpose is to restore ethical balance. People with screwed up ethical compasses will give good protesters and good Hackers a bad name.

I like this broader definition because it really shows that Hacking is not at all limited to technology. It relates to “systems”, as long as the “system” is complex enough to encode moral notions. This means that protesting is really just a special kind of Hacking, in fact we might rename it “public opinion hacking”.

Consider Richard Stallman. Stallman realized when he couldn’t get access to printer control software because of a proprietary license, that the license itself was encoding something he had an ethical problem with. Rather than accept that embedded morality, he created a workaround solution (copyleft licenses) that created an alternative with an embed morality that he could live with. The system that Stallman was hacking was copyright and licensing and the modern Open Source movement is the result of this hack.

The notion that technology and other complex systems can have moral notions embedded is neither new, nor mine and I recommend Lessig’s Code and Other Laws of Cyberspace for a full discussion.

I came to this conclusion as we renamed our “meaningful use” book to “Hacking Healthcare“. David Uhlman (my coauthor) and Andy Oram (my editor) seriously considered “Hacking Healthcare Software”, as an alternative title. But in our discussions it became apparent to us that David and I were really hoping to teach people how to use software to change the Healthcare system itself. The software was merely the type of hack that we were proposing, rather than the system being fixed with the hack.

Any efforts to hack healthcare should be embraced because the default settings on the Healthcare system really suck.

We have too many medical errors. We have overtreatment, undertreatment, fraud and disconnected care. Worse, until very recently, we had incentives that were virtually guaranteed to make these problems worse. These problems are merely symptoms of the wrong set of morals being encoded into the healthcare system.

Which leads me to introduce Karen Herzog to you. Karen makes my efforts to hack healthcare look somewhat childish. Like other, more famous e-patients like e-patient Dave and Regina Holiday, Karen, along with her husband Richard Sachs refused to accept the default settings of the healthcare system when their daughter Sophia was born with a rare genetic disorder. Shortly after Sophia’s birth, Karen and Richard were informed that their daughter disease was incurable and that she was dying.

The default settings for the healthcare system in these circumstances could not have been worse. Karen and Richard were offered occupational therapy, physical therapy, grief counseling and “when she turns blue let us know..” by their doctors in a manner that was obviously code for “we cannot help you, sorry for your situationa but get out of our hair”.  Karen and Richard refused to accept this. They did go home, but rather than allow the healthcare system to “wash their hands” of Sophia they created a garden. This literal garden was the first step in creating a community of care that re-engaged their doctors, who were themselves feeling hopeless and overwhelmed a safe environment to try to make Sophia’s life better and to seek a cure. Like all of the greatest “Hacks” Karen and Richard repurposed simple solution and made it apply to a problem that was regarded as unsolvable. They created a literal space that was so welcoming that it inspired collaboration in a group of clinicians that were not used to collaborating worked beautifully. They found ways to make it obvious that Sophia’s space would not be a deathbed, but a different kind of space altogether.

Eventually Sophia died, but only after receiving care that was orders of magnitude better that what could have been accomplished if Sophia would have been hospitalized full time. Hundred of clinicians, friends and family came together to make Sophias garden into a success, in a collaboration that never could have occured inside the walls of any given healthcare institution.

This success was hard-fought. Together, Sophia, Karen and Richard experienced just about every significant problem that patients and caregivers can have. For each hurdle, Karen and Richard continually refused to accept the “default settings” that the healthcare system offered, by responding with hack after hack.

I am humbled to be speaking opposite Karen. Since Sophia died, Karen and Richard have pivoted their design group into one of the preeminent “Patient UX” shops in the country. They have leveraged their troves of poor experiences with the healthcare system, and their methods of working around them, into a series of fundamental insights about how to improve patient experiences with technology and design. They are my default recommendation for design work in the healthcare space.

I have been watching what e-patients like Karen and Richard are able to accomplish for years and I have come to realize that in many ways, they are far more deserving of the honorific of “Hacker” than the bozos who deface websites to make political points. In much the same way that the recognition that MLK Jr was a protester, makes it embarrassing that we have to label the Westboro church members with the same label.

Like the original Hackers who built the Internet and the first computers, e-patients are blazing a trail through the healthcare system. Decades from now we will look back on this class of patient and realize that they remade healthcare by simply refusing to accept the aspects of the healthcare system that typically suck. In the future, when the new norm for doctors is respect patients enough to actually let them finish sentences, we will have this generation of e-patients to thank. Much the same way that we recognize that our iPhones and Androids would not be possible without the pioneering Hackers of the *nix community.

Karen and I will be doing a “dueling keynote” at Health::Refactored, asking each other difficult questions about the state of the art in design and technology in healthcare. I hope that the audience will learn some tidbits from me about how to work with software to help fix healthcare, but I think I have made my case that Karen will be the real healthcare Hacker on the stage.



How to change the world over the weekend

I love hackathons.

I love winning them. I love competing in them. I love winning them.  I love judging them. I also love not losing them.

This weekend, I am acting as a mentor to the first Health 2.0 hackathon in Houston Texas. As far as I know (which is not that far, really) this is the first hackathon in Houston to be focused exclusively on healthcare. Serving as a mentor rather than having the opportunity to directly win might seem counter intuitive, given how competitive I am. But I have had complaints about being a “professional” Health IT expert entering these contests, and as one of the organizers of the event, I do not want to be seen as unfair. This was a hard decision to me because in most cases, if I have to choose between winning and being unfair, I choose winning.. but my Houston Health 2.0 co-conspirators prevailed upon me this time…

I do well in hackathons because I know how to avoid the number one pitfall in healthcare hackathons: It is too tempting to make toys.

To really rock a Healthcare Hackathon you have to have a real strategy to build something that will make a difference, but something that you can still prototype in two days. Here are general thought strategies that have worked for me:

  • Have you carefull searched the web for someone implementing your first-blush idea? The android iphone app stores? Your idea is probably not original?
  • Rather than focus on original “ideas” to find “original problems”, clinician partners on your team are critical for this perspective!
  • Seek problems where there is no money to made solving them. Problems that already have money already have attention, it is hard to do original work in those spaces!
  • Only a few doctors are enlightened enough to pay attention to the hacking approach. How can we multiply the impact of a very few doctors?
  • Most patients are not e-patients, they are reactive and unwilling or unable to change their own healthcare behaviors. How can we minimize what each patient must do, but still have an impact?
  • Are there patient pain points so strong that we can rely on at least a few highly motivated beta testers?
  • How can we leverage the cloud, even with HIPAA limitations?
  • How can we crowd-source effectively, ensuring that every participant is evenly and instantly rewarded for contributions? How can we make crowdsourcing fun?
  • How can we leverage pre-existing Open Source code or APIs? Stand on the shoulders of giants… Hello! Obvious!!
  • How can I flesh out my team at a hackathon by pitching to clinical, educational, design, art or video collaborators?
  • If a programming task is hard for me, can I find a geek that can do in a few minutes what it would take a whole week for me to learn?
  • Getting a good idea is easy. Getting a good idea that is small enough for me to finish in two days is hard. How do I trim all the fat?

Here are some ideas that I will be pitching to participants to this weekends hacking contest. If I can find geeks with the required programming skill-sets and the team to ensure that they have the clinical and design backup that they need, I think these are all doable in two days.

Big Data on medical students:

Medical students are the only ones who understand the problems in medical school. I have designed a hack that will allow us to use big data on them directly to discover and fix the issues with our process for making doctors. I think this will require a team who can code in cross-platform Java… but a web-platform programmer could be tolerated in a pinch. SQLlite experience is a plus.

Better medical wikis

Only Wikipedia has the critical mass to sustain itself, so the only way to make a medical Wikipedia is to do it inside Wikipedia. But how do we ensure that the medical parts of Wikipedia are accurate enough for clinicians and experts, but simple enough for the average patient to find them useful. I think I have found a way to use the Wikipedia API’s to dramatically improve the quality of Wikipedia articles on health issues, but I will need a team who knows how to either build a chrome or firefox module…. are perhaps super fancy JavaScript bookmarklet

Cross the channels at health conferences

Every healthcare conference has a back channel, and in my experience at healthcare conferences, many of the real experts are in the crowd tweeting. Conversely the people who line up to ask questions at a microphone are unvetted, a tragic portion of those who ask questions are actually pitching their own projects, or exercising an obsession, or asking a stupid question (and yes… there is such a thing as a stupid question… or at least there are many morons who feel comfortable wasting my time with questions). I am pretty sure it will require something like Node or Pythons Twisted, but I think we can use Twitter to hack health conference Q&A for the better….

The calculus of pain

In healthcare we have policies that help to ensure that “drug seekers” are unable to access excessive amounts of opioid pain killers. Assuming we define “denying a patient pain medications as a positive”, then these policies are “high sensitivity”  (has few false negatives). Said another way, they have been shown to reduce the number of deaths from medication overdoses in those states that apply them. But good policies are also “high specificity” (has few false positives). In this case, a “false positive” is to deny a patient who has legitimate untreatable-without-opioid pain access to effective pain control. The debate is mostly rhetoric here, with law-enforcement and organizations who represent pain patients both resorting to rhetoric  because there is no way to accurately measure false positives. But what if we could create a dynamic visualization that estimated false positives from the data that we do have? Essentially, we could create a “calculus of pain” diagram that both sides could ‘agree’ on, but use differently. As you might expect, this ‘rhetoric negation GUI’ will require extensive D3/javascript expertise.

Simple games for fitness

I am interested in creating tools that use Geocoding and QR codes together to motivate health. I need IOS and/or Android developers for this one.

Twitter plus epatients

Lastly I am interested in the ways that e-patients tend to favor twitter and I might be interested in developing an e-patient specific twitter tool. Need to code in a web-friendly language.

Quantified Self device hacking tools

The QS community very clearly needs a specific tool that I have gotten alot of requests for. You must know either hardware interfacing (usually C or C++ for usb drivers etc) or web authentication (OAuth et al)

Do something awesome using Natural Language Interfaces.

One of the API sponsors for this hackathon is Ask Ziggy which is essentially a “Siri as an API” for app developers. Its a clever idea and there are lots of possible uses here… no specific technical requirements other than to us this API.

Do something awesome with DocGraph

This is of course, our own data set.. and you can read about it at the main DocGraph site.

Do these sound vague enough?

I hope these are pretty vague ideas. I intentionally am leaving out the critical “how” part of each idea!

I hope this list is enough to spark some interest and get developers to attend this conference. I will not be the only one pitching ideas, and teams attending with pre-baked ideas typically do well at these kinds of events. Still if you want to use my ideas, and hear me explain how to do them and why they will work then you need to meet my specific criteria. First, you must be willing to develop  in the open, and under Open Source licenses. I am giving you a hackathon winning idea for no money. (and I am fairly certain, given that I have judged more health 2.0 contests than anyone else) Even if you do not win the contest, these ideas are so good that I will probably be able to make you fairly famous in the Health IT and Health 2.0 communities.

By working on my ideas you kind of hedge against losing at all. If you are able to pull of the projects, then I will give you credit publically for your awesomeness, which is valuable to anyone looking to make a name. For this valuable insurance service,  I need to be able to start from where you left off if you decide to abandon the project after the hackathon… That means github and the FOSS license of your choice (I like the AGPL)

You also -must- have the skillset that I require for a given project for me to give you the details on a project. I cannot have my best ideas just “out there” for people to run off with!! I am pretty sure that I have at least one project for every kind of developer that I can think of listed above. If I could do all of these ideas myself with my programming skill set.. guess what… I would have already done them or I would save them so that I could win some other hackathon! Each of these projects leverages a very specific hack of some kind. Either hacking hardware interfaces, user expectations, software design, data levers or something like. After I describe the “how” of each project there will be an “aha/wow” moment, when you think “We didn’t I think to do that?” (Note I felt this way after seeing IFTTT for the first time). If I am handing you a “wow” world-changing hack then I have to know that you will make us both look awesome when you pull off the hack. Don’t worry if you do not have a specific skillset I define here. I have lots of other ideas based on what you are good at! This especially applies to designers and other artistic types and to clinicians!! All of these projects could use clinical/design help!!

If you have not signed up yet, then I would get over to the signup page now. So far, every Houston Health 2.0 event has sold out so far, and we expect this one too as well. I have some pretty awesome project proposals but I can tell you now that these will just be a few of the awesome ideas that we are bringing to the table for this Hackathon. Most importantly, if you already have a project in mind, then you will be able to find a team to help you hack on your project! All you need is alot of motivation, a little skill and a willingness to collaborate. Or even just one of those three would do…

Looking forward to seeing you there!!






ePatient HIMSS 2012 Badge


I am happy to announce with psuedo-permission from the Society for Participatory Medicine (by which I mean that they have not asked me not to do this) a Twitter badge for HIMSS 2012.

There are a handful of the epatients who are attending this years HIMSS (alas, I am not among them) and they have agreed to play a game to help get to know the e-patients. Those who complete the game get to have a digital version of the epatient badge for HIMSS12.

The game is simple. Each of the following e-patients have given me a riddle that they will answer for you either over Twitter, or in person. Plus I have given each of the e-patients attending the conference a super secret code word. That means that you have to either figure out the riddle on your own, use the riddle as an excuse to introduce yourself to each epatient over twitter, and you have to find and post a picture of yourself wearing the S4PM badge!

Then I will generate a digital badge for you that you can use on your twitter background, or any you can use in any other website where you can post an image.  The digital badge will have your twitter username written on it, to prove absolutely that you have earned the badge.

This badge will be issued only for people who complete this puzzle during HIMSS. We might issue different epatient badges in the future, but this one will never be issued again. This is truly a once in a lifetime opportunity. Everyone you know will be jealous of the small graphics file that you acquire here. Truly, your completion of this puzzle will be a story that you can relate to your grandchildren (to put them to sleep).

Seriously, this might be a fun way to get to know some new people at HIMSS and to help spark discussions about patient engagement at HIMSS. I wish I could be there in person, but at least I can provide you all with something fun to do while you are there…

You can get the S4PM badges from the Relay Health (#3618) or MedSeek (#1345) booths, or by attending the S4PM Wednesday lunch meetup or one of the following epatient events at HIMSS.

Wednesday – @ReginaHolliday: #Thewalkinggallery meets @ ECollab Forum Wed 2-22 Venetian Sands, Bellini 2102, Level Main/Level 2 6-7:30 pm

Thursday – eCollaboration Forum with a variety of speakers, among them: Brian Ahier and e-patient Dave

Thursday – Engaging Consumers in their Digital Healthcare with Regina Holliday as keynote speaker

Tweet the picture of yourself wearing the badge for bonus credibility, but all I need is the pictures URL as proof.

To play, all you have to do is complete the form below!

Have a good time!!

The e-patient reach

As many of my readers know, I am now regularly blogging on radar.

There, I have written a post called epatients: the hackers of the healthcare world.

It is pretty much a tour of how anyone who is already in the technorati, can become an e-patient. It heavily features the work that I have been doing with the Cautious Patient Foundation, which focuses very much on the information that every patient should know about how to prevent medical errors in the healthcare system.

But it also talks about the core of the e-patient ethos, getting access to data and leveraging it well. Being engaged and involved in your own healthcare. All of these are part of the Cautious Patient concept, and the e-patient concept. It has been very popular with the e-patient community.

Tomorrow, USA Today will be hosting the first version of the classic traveling medical blog summary Grand Rounds at

The fact that USA Today is hosting Grand Rounds is awesome. I have just discovered that my e-patient blog post will be one of the ones covered in the first edition of Grand Rounds hosted at USA Today. I am truly honored and wish I had spent more time removing commas from the article, which are, the, bane, of, my, writing, style.

Seriously, it is an important shift when mainstream media starts to pay better attention to medbloggers, the best of whom produce content that is tremendously valuable for our healthcare system. Even below average writers have something to add, but then… you already know that… because you are reading this!



The Patient Scientist

Over on the Society for Participatory Medicine mailing list we have been discussing the recent Readers Digest blog post titled: 50 things your nurse wont tell you.

You really have to read it before reading this article, this post will only make so much sense without that.

I suggested that part of being an epatient or a perhaps a cautious patient was being able to filter an article like this one as a “patient scientist”. E-patient Dave, as per normal, was not about to let me get away with just that, and asked “So, Fred, does that point (how to filter an article like this) become a P.M. teachable?  And thus bloggable?”

So I figured I should take a moment and eat my own dog-food.

The first thing to note is that the role of the patient scientist is not an authoritative role. But the role of -any- scientist is not an authoritative role. Rather, it is the job of a scientist to be “carefully and productively dubious”. I believe that an engaged patient has an almost greater capacity to pursue this ideal than a doctor. One of a doctors roles is as a scientist, but only one of several roles. Another role for a doctor is to act as an authority, to posit a hypothesis rather than merely questioning. To put forward one particular idea and defend it with expertise and authority. But the patient has the privilege of merely questioning, without ever taking a stand on the idea in question. Ironically, this means that a patient can play the role of a scientist more completely than a doctor.

That might read like something as a contradiction but it isn’t as long as we clearly define science as “the process of productive questioning” and scientist as “the one who productively questions”. In the doctor patient relationship, the patient should be the “theory questioner” and the doctor the “theory maker”, which, in that brief moment, means that the patient is the one in the scientific role.

The irony ends here, of course, because while the doctor is in the “hypothesis making” role, the patient too often fails to properly take the “questioner” role. Further, the doctor is a trained scientist, so in reality the doctor is both putting forward a hypothesis, and also questioning it. Doctors who expose this internal dialogue are rarely paternalistic, because they expect the patient to understand that a diagnosis or a treatment plan are testable hypotheses. That can be pretty difficult for a patient to handle, but facing that uncertainty head-on is the central task of the e-patient. Extending this idea further, we can see that getting a second opinion is really just a special case of the scientific peer review process.

Being a patient scientist is a central part of being an engaged patient.

So how would a patient scientist read the list of 50 things your nurse wont tell you? Lets take a look. I will paraphrase the 50 points into statements that I can evaluate.

  1. if I say, ‘You have the right to a second opinion,’ that can be code for ‘I don’t like your doctor’
  2. sometimes the doctor won’t order enough pain medication.
  3. the stuff you tell us will probably get repeated (gossip)
  4. Gentler butt-wiping for nicer people.
  5. The nurse might not let you know she is worried.
  6. The nurse might not let you know that you are doing medically stupid things.
  7. If you’re happily texting and laughing I’m not going to believe that your pain is a ten out of ten
  8. The nurse assumes you are underestimating your use of drugs and alcohol.
  9. Nurses head off medical errors
  10. you can’t get admitted unless you’re really sick, and you’ll probably get sent home before you’re really ready
  11. nurses are overwhelmed by red-tape and charting
  12. hospitals are still filthy and full of drug-resistant germs.
  13. went to nursing school because I wanted to be a nurse, not because I wanted to be a doctor and didn’t make it.
  14. Grey’s Anatomy is not reality
  15. I’ll have a dying patient with horrible chest pain who says nothing, because he doesn’t want to bother me. But the guy with the infected toe…
  16. If you abuse the call button, you will get a reputation that can diminish the quality of your care later.
  17. You need to include herbals and other over the counter medications when you are asked about medications.
  18. This is a hospital and not a hotel
  19. This is a hospital and not a hotel
  20. The nurse might have test results but are waiting on a doctor
  21. When you ask me, ‘Have you ever done this before?’ I’ll always say yes. Even if I haven’t
  22. Nurses do not always help nurses
  23. Correcting difficult doctors is difficult creating opportunities for mistakes
  24. Doctors can be willing to blame nurses in a way that steals trust.
  25. If you would be willing to make a formal complaint when things go wrong, consider making a formal compliment when things go right.
  26. Nurses like to see long time patients return once they are healthy
  27. sometimes Nurses can make miracles happen
  28. Make sure you are not ignored when you say important information, even if the provider is looking at your chart.
  29. Never talk to a nurse while she’s getting your medications ready.
  30. Understand the chain of command for complaints and nursing is a demanding job
  31. If the person drawing your blood misses your vein the first time, ask for someone else.
  32. Never let your pain get out of control. Using a scale of zero to ten, with ten being the worst pain you can imagine, start asking for medication when your pain gets to a four. If you let it get really bad, it’s more difficult to get it under control. (one of the few that I did not summarize)
  33. Ask the nurse to wet your bandage or dressing before removal
  34. If you’re going to get blood drawn, drink two or three glasses of water beforehand. If you’re dehydrated, it’s a lot harder for us to find a vein, which means more poking with the needle
  35. Don’t hold your breath when you know we’re about to do something painful, like remove a tube or take the staples out of an incision. Doing that will just make it worse. Take a few deep breaths instead.
  36. don’t go into the hospital in July when the new residents start.
  37. Doctors don’t always tell you everything about your prognosis
  38. Have you washed your hands?
  39. Many doctors seem to have a lack of concern about pain. I’ve seen physicians perform very painful treatments without giving sedatives or pain medicine in advance, so the patient wakes up in agony.
  40. When you’re with someone who is dying, try to get in bed and snuggle with them. Often they feel very alone and just want to be touched. Many times my patients will tell me, ‘I’m living with cancer but dying from lack of affection’.
  41. warm the towels
  42. Sometimes desperate end-of-life measures are more torture than comfort.
  43. Husbands, listen to your wives if they tell you to go to the hospital.
  44. doctors diagnose but nurses heal
  45. If you do not understand what the doctor is telling you, say so
  46. know the next steps for your care.
  47. doctors help you understand whats wrong with you, nurses help you understand that you are still normal.
  48. don’t ask me out on a date.
  49. have a positive attitude
  50. say thank you.

First concept: Patients need Social Skills to get better care?

Ok, so first of all there are alot of things here fall into the category of “its better to be nice to your nurses” and/or “have the right attitude”. Specifically #4 , #15, #16, #18, #19, #25, #41, #48, #49, and #50 are all in this class. All of these are social skill issues. Of course, the recommended approach here is “You catch more flies with honey”, but that is probably not the right synthesis here. In fact that saying is a perfect example of a statement that does not bear scientific scrutiny.

In fact, real social skills does not mean “always be nice”. Social skills include how to complain effectively, how to confront without offending, and how to be gentle while still being insistent. Number 15 is a good example of this. The guy with the chest pain is not complaining enough, the guy with the toe pain is complaining too much. Social skills, at least for a patient, means knowing when being nice is not working, and something else is called for.

So now we have a statement that we can evaluate against evidence: “Do patients with better social skills get better care?”. Everyone who I talk to in medicine indicates that highly functional social skills are absolutely a predictor of good care. A quick review of PubMed shows that it will be difficult to search for something like this. Because searches on “social skills” usually return information about mental health. (i.e. social skills of psychiatric patients) but at least we have distilled a large portion of these points into something that A. we can evaluate scientifically (i.e. search for and consider published evidence) and B. we can engage with. We can discover if better patient social skills leads to better outcomes for patients and, if so, we can evaluate methods for improving our own social skills that might improve the quality of our care.

Part of a scientific consideration of a statement is to evaluate openly the biases of those who are creating statements. One bias is obvious here. This is the largest “grouping” that I could find in the “secrets from nurses” and it clearly shows a “appreciate us” bent. Perhaps, the frequency of this class of suggestion in the list is due to nurses feeling under-appreciated (a common problem) rather than its usefulness to patients. An “agenda” is a common bias in self-reported data. As patient scientists it is important to ferret out sources of bias in data we receive, especially from main stream media. All patient scientists should become comfortable with Wikipedia’s Bias category.

Pain management.

There were several comments regarding the mishandling of pain medication.

#2 suggested that doctors do not always order enough pain medication. #7 indicated that the nurse is going to be judging the validity of your pain reporting, and might find you unbelievable.  #32 gives specific advice regarding controlling pain, specifically, that pain should be controlled before it really gets bad. #39 indicates that Doctors can be cavalier about pain.

All in all that is four entries on issues surrounding pain control, but with very divergent perspectives on the problem. It should be noted that at least two comments focus on the fact that doctors sometimes fail to effectively control pain. So is pain management a problem in hospitals? The evidence is easier to find here: The Joint Commission, an non-profit hospital accreditation organization, has made pain management part of its accreditation  and education process. The joint commission is an evidence-based organization, which means that if it is focused on pain management, it is because it -is- a problem. I could dig deeper, into the research that the Joint Commission is using to drive its policies… but this is enough for now.

What is the take away lesson for e-patients?

If you are in so much pain that you cannot fall asleep, then your pain is not controlled. This rule applies even if you do not feel like you need to sleep right now. Its not about being tired, it is about anchoring your pain score around something objective. If I say “my pain is a 5″ and you say “my pain is a 7″ it is difficult to accurately compare those, or to determine from the number if the pain is under control. Whether or not you could fail asleep is a much much better measure. Too painful to sleep = too painful.

But understanding what pain levels are not tolerable is not enough. A patient must understand how to go about getting pain relief form the system. As the nurses suggest, sometimes the doctors simply do not care. Sometimes the ball gets dropped for other reasons, orders get shuffled, or medication orders do not go through. You might be suffering pain because someone has lost their sense of empathy, but it could be just as easily because a workflow is broken. As an e-patient, it should not matter why the pain is not being treated, you simply need to understand what you need to do to change the situation. Dr. Oliver has written lots about this, but the take-aways that I remember are.

  • Someone needs to be keeping a journal of events in the hospital.
  • This person should probably not be the patient. If you are in the hospital, you are probably so sick that you cannot discharge this responsibility yourself.
  • Which is one of several reasons that patients should not be left in the hospital alone.
  • The journal should include records of when pain medication is requested, as well as the time, medication name and dose when pain medication is delivered.

Pain control is something that Dr. Oliver writes about, which is where I am getting this short-hand advice. Dr. Oliver is my boss at the Cautious Patient Foundation and we regard failures in pain management as medical errors. As a result this is an area that I am concerned with as a technologist, and this is a core area that we educate about.


So I hope I have demonstrated, a little, how I think a patient scientist should react to anecdotes like the ones collected by Readers Digest. Treating them as “true” is a mistake, there are complex issues underneath, but it is possible to use them to start a critical thinking process that can lead to positive results.

I would also be interested in answering the following questions from the texts:

  • “Is there evidence that patient reputations (i.e. between nursing shifts) can lead to poor care?”
  • “What end of life issues are not typically being discussed by nurses? what damage can this cause to me as a patient?”
  • “How tolerant should I be as an e-patient with poor blood drawing skills? Can proper hydration be used to address this problem?”
  • “Are there higher medical error rates in July?”

All of these can be posed as a hypothesis, and approached scientifically by a patient.

I think it would be interesting to see some of these questions approached by other patient scientists. If you decide to blog about one of these, do send me a link.


Practical collaborative document writing for patient communities


I have a lot of experience with collaborative document writing, and now, in my role with Cautious Patient Foundation, I have been providing technical help to several patient communities. I helped write the security standards for the NWHIN Direct project and I am currently working with the e-patient/QS community to create a document detailing Doctor friendly Quants and Quant friendly Doctors.

My advice is pretty simple:

  • Use a forum, either a facebook thread or a mailing list to determine who the primary authors should be, and what the general content of the document should be.
  • If you have several authors, use Google Docs or a Wiki for initial document creation. If you are writing alone, use whatever you want as your initial author tool.
  • Once you and your co-authors feel OK about the resulting document, copy it over to, and allow your entire community to comment on it. (For Geeks: Co-ment is the successor to the stet project which was used to coordinate comments on the GPLv3.) There is a free version of co-ment but the service is cheap and probably worth it. It allows a community to comment on specific parts of a document, and it will automatically generate a “heat-map” of the more controversial parts of the document.  These are the areas that you will need to spend time with, ensuring that you have blessing of your community.
  • When the comments stop coming in, the document is done.
  • Keep your document as short and concise as possible. All of us operating in the various patient communities are short on time, and by keeping what you are asking us to read short, you are respecting that.

The insight here is that while a wiki makes it easy to update and maintain documents, they are not always the right tool for building consensus in a community. What you want is to have your documents reflect the will of your community at large, rather than the will of the most obsessive wiki-editor in your community.

Hope this helps.


Sharks, Bees and Privacy


I am happy to announce that my new article on healthcare privacy and interoperability has been accepted in the Journal of Participatory Medicine.

I am not against privacy in healthcare, but I am against the notion that privacy concerns should trump issues relating to good healthcare.

You can read the full article here:


A patient by any other name

Recently two communities have been discussing a pretty basic question. What should we call the artist formerly known as “patient”?

The two communities are the e-patient community and the “patients” in the patient safety movement, specifically those that met at the last IHI meeting.

But why would we want to call patients anything other than “patients”?
The word patient has some negative connotations. Indeed, the Websters dictionary entry has exactly two definitions of the word patient as a noun.

1 a : an individual awaiting or under medical care and treatment
b : the recipient of any of various personal services
2 : one that is acted upon

It does indeed seem that a historical definition of the word directly implies passiveness. The second definition is particularly problematic, but even the notion that a patient is one that “waits” for care in the first definition is contrary to the participatory and proactive ideals of both of these groups.

But we should not pretend. “Patients” are in fact very often passive.
If we define the leaders of these communities as “fully engaged patients” then what is typical in “patients” is not merely “not fully engaged” but “not at all engaged”.  Paternalism in medicine is not just a problem in the attitudes of doctors, but for many “patients” as well. In fact the word “patient”, with its passive context,  is probably the right meaning for most people.

So both of these communities have been talking about two problems here at once, and conflating them frequently.

First we have a problem that patients are frequently passive and even when they are engaged they are not effective because they are not typically well-equipped. This problem can be summarized as “Lack of patient engagement”.

But then we also have the problem of how to describe a person who is successfully taking a proactive, engaged and effective role in their own healthcare.

I think it is a mistake to conflate these problems. If we are going to be asking doctors to change their behaviors and/or perspectives we need to be clear whether we are asking them to change the way they relate to a typical patient, even when that patient may be entirely passive, or whether we are asking doctors to recognize that “patients” in our communities are moving beyond the passive role and expect to be treated differently. When we discuss whether we should keep the old name, “patients” or create a new name, we need to be clear if we are talking about something new for everyone, or just those that embrace a new ethos and responsibility. Are we debating a name for “everyone” or a name for “us”?

Given that distinction, we can more clearly discuss the various terms that we are suggesting. Here are some of the alternative words that have come up in our groups:

The term consumers emphasizes that as “patients” we are having an economic transaction. All patients, both passive and proactive are obviously consumers. The notion here is that by referring to market forces and discussing things in business terms, that we might bring competition into play. The fundamental problem with this notion of bringing a market to bear in healthcare is that fair markets only exist when there is information parity. Consumer reports, for instance, serves to provide information parity in the automobile market, as does Kelly Blue Book. Both the relative performance, and the current average price of any automobile are generally known both the buyer and seller of automobiles. But when we talk about patients as consumers, they have dramatically reduced information regarding both the price and the quality of the services that a doctor provides. Do not get me wrong, I think these problems are solvable and as a result the “consumerism” movement within healthcare has value, but it would be silly to simply pretend that by calling a patient a consumer we can ensure that they are actually playing this role in economic terms. So the notion that patients -are- consumers is pretty weak, but the notion that they -should be- consumers is a great idea. The consumers union has important healthcare efforts that should be supported and embraced.

The second term is client. The benefit of this term is that it emphasizes that the person under care is providing payment for care and should be treated with respect as a result. The term client has very different meanings in different professional relationships. We certainly would not equate the relationships  lawyers, prostitutes, hair dressers and mental professional with their “clients”. The word is quite flexible. This can be both a strength and a weakness. Moreover, it is often not strictly true. At least one definition of client is “someone who pays for goods or services” and often the “patient” is not actually the one paying for care. Sometimes parents or children pay, sometimes society or the government pays and at least usually, a third party is actually “payed” by the patient for care, and that third party then pays the clinician. One could argue that many of the woes in our healthcare system are the result from treating insurance companies as the clients to the detriment of both the patients and the doctors.

The term patient 2.0, like health 2.0 refers to the iterative improvement that we have seen in technology. Health 2.0 itself was a controversial term when it was created, both described as being both the application of web 2.0 technologies to healthcare (the Holt definition) and the fundamental rethinking of healthcare itself (the Shreeve definition). Since those debates, both definitions have held up well. If we accept a “Shreeve” style definition of Patient 2.0, then we label our efforts as a natural successor and a fundamental improvement at the same time. Unfortunately many will hear a “Holt” style definition and assume that Patient 2.0 means patients who like to use software, which misses the point entirely.

This problem is shared with the term e-patient. To the initiated the “e” in e-patient stands for “empowered” or perhaps several “e” words like “empowered”/”engaged”/”enabled”/”educated”. But reporters and other bloggers constantly refer to the parallel of “e-mail”, assuming that the “e” means “electronic”. Again the notion that an e-patient is a patient who e-mails misses the point entirely. However, e-patient does have very strong brand, mostly due to its very popular blog and the wonderful white-paper. It is one of the most recognized terms in our larger movement. Empatient has been suggested as a dis-ambiguous improvement on e-patient, one that is not subject to confusion. It also is a play on words with impatient, (which I find delightful, because I am a word-geek).

Patient expert has been suggested as an acknowledgment that patient’s can often be very informed about their disease and conditions. But this term is also controversial; if a patient truly had the required health expertise, then there would often be no need for a doctor. Doctors, as experts, might resent this term, because it makes an implication that is clearly false… that both the doctor and the patients are experts in healthcare. Of course one could argue that the right term should be expert patient. Rather than suggesting that a patient “has healthcare expertise” which might be insulting, this arrangement implies that a person has become an expert, at being a patient. Hopefully this would not be as insulting to doctors and probably be a more accurate description. Of course the problem here is that people might be told “expert patient” and presume that it means “patient expert”.In this same vein a notion of a licensed patient, has been proposed, but it unclear what specifically licensed might mean.

Patient advocate is a term that is well-suited towards those with deep experience being patients, who are engaged with helping others who are being overwhelmed by just becoming patients. This has some overlap with the ‘advocate’ relationship that a lawyer might have.  Patient activist is a good term for those who attempt to speak for larger groups of patients at once.  The problem with these terms is that it very accurately describes certain individuals in our communities, but fails to capture the ethos that we would hope to instill in everyone who receives healthcare.

In the quantified self movement, which overlaps with the n=1 movement, they often refer to themselves as #quants. This movement is focused on collecting data on oneself in order to achieve a deeper understanding of ones own health and wellness.

A clear trend with these terms is that they often represent terms that are 100% appropriate for a specific subset of our overall movement. We need to have people who specifically attempt to be engaged and proactive patients using software, and patients 2.0 is a great term for that. When we are trying to get healthcare to respond to consumer forces, calling patients consumers is appropriate. Sometimes the “e” in e-patient might really refer to a person who want to be fully engaged… by e-mailing his or her doctor. In a shameless plug I argue that the term cautious patient, coined by Dr. Oliver and the subject of my work at the Cautious Patient Foundation is the right term to use when you are discussing patients who are A. fully engaged  B. educated about patient safety and therefore C. able to take steps, as patients, to avoid medical errors.

But all of these alternatives should be compared with efforts to rehabilitate the original term “patient”.

Over time, the meanings of words in any language changes. Perhaps it is simply time to redefine this word. In many cases, this work has already begun. One of my personal favorites is e-patient dave’s catchphrase “Patient is not a third person word” (not sure if he coined this, or merely popularized it… either way, when I say it, I am quoting Dave.)

Perhaps we just need to re-embody the word patient with a new meaning, one that is more compatible with our movement. One way to do that might be to temporarily use a term like true patient, pure patient or real patient ( perhaps a way to take advantage of the fact that this can be an adverb/adjective as well?)

I want to be clear that I have no specific preferences on what term(s) are most appropriate.  I would not have added something to this post if I thought it was ridiculous, and I am trying to summarize and evaluate positions that I have heard others take on these issues. If I have missed something or been to critical to an idea that you favor, leave me a comment and I will update this post if you are convincing.



Update 12/21/2010:

e-patient dave had the following to say in response:

Hey Fred – when I was in college in the Nixon years, my more radical friends often debated the power of language especially during a revolution. I’m no radical compared to them, nor to some of the more intense people I know in the patient movement, but I agree there’s something to it. Revolutions (race, gender, whatever) involve unshackling, and a lot of shackling lives in language.

I’ve always thought there are two changes in a social revolution: the underlying reality and the language we use to discuss life. There’s a period of intense discomfort during which the reality is shifting and the language no longer fits – just like a bad shoe. People start to see themselves (and others) in the new reality, and they say “That old language isn’t me, no sir!” Others say “It *is* me – I’m the NEW [whatever].” Some take over the old words, even the pejoratives, and take ownership in the new world, as some blacks have done with “nigger.” They assert that that signifies real power – “The Man no longer gets to say. We get to say. The language of your dominance no longer applies.”

I don’t mean to sound like an expert on this because I was no expert, just an observer. My point here is that we in the movement ought to be thinking about where we sit, collectively, on the timeline of transition. Many of us are awakening to our power, just as blacks and women did during their revolutions. Perhaps we should track both issues independently: the reality, and what we call – AND what others hear when they hear our words. Because a social revolution’s not complete until the old meaning’s obsolete.

The only point I would disagree with about this is the notion that Dave is “just an observer” on this issue. Some of the things I have heard him say, esp the ‘third person’ thing, have clearly raised my own awareness about how I discuss patients.

Meeting Patient Safety

Today, I met with a tremendous number of patient safety advocates at IHI. My work with Cautious Patient Foundation centers around patient safety. But I have, up until now, not met very many Patient Safety advocates in person.

That all changed today. I was introduced to forty of them at once.

Frankly, it was heart-wrenching. Credentials for patient advocates in the patient safety community are not M.D., or R.N. or PhD.

Credentials read: lost son to MRSA infection, infected with flesh-eating bacteria due to unsafe surgical conditions, child brain-damaged from new-born jaundice, spouse lost to multiple medical errors.

These people have paid dearly for their credentials. It was moving to hear the introductions, and you can share in the experience. Paul Levy (yes that Paul Levy) diligently tweeted about many of the introductions. That is not the only record kept of this morning. Regina Holliday (yes that Regina Holliday) was doing one of her paintings for the morning. I hope to get some more info on this soon!!

Overall it was a humbling experience. I have been with e-patients before, but often, e-patient stories are uplifting, they have both tragedy and triumph. With these e-patients, the triumph is often that they can talk about their loved one coherently without weeping. Almost everyone, (including me) in the room was probably dealing with mild to severe PTSD in one way or another. Most of us were high functioning, but many of us were still very very angry. And when you heard the details, it was hard to say that bitterness or anger were not entirely appropriate. These people are justifiably furious.

I already have 10 new ideas for good software projects.