Why Keep Good Work Secret?

Recently, I wrote the following opinion piece for another venue - I thought I'd share it here with you, as you too might find it interesting. Although I refer specifically to San Diego, I think you'll see that the concept applies far more broadly. The case studies I mention are taken from my book "Computers and Society - Computing For Good".

(For fun, I'm challenging you to figure out why I'm including this particular picture)

People are cynical about the social value technology has for society. As part of my research into socially beneficial computing, I ask random people what the phrase “computers and society” means to them. Respondents invariably start referring to problems: people get hurt, people are screwed over, all types of disasters can happen. Occasionally, people provide specific examples but most of the time they say vague things about how computers dehumanize society. Prodded to think about where computing is being used to benefit society, they pause, and most commonly refer to the One Laptop Per Child initiative or perhaps make a vague reference to philanthropy in “developing countries”.  They think about large software companies that have “extra money” to spend on “side activities”. The evidence is clear: on a gut level, public perception associates computing, and technology driven business in general, with causing harm. People believe there is no business case for using computers to make the world a better place.

Yet, my research has also shown that a wide range of organizations across the country are better able to do business when they focus on the unique role computing can play in helping people or the environment. Not just hi-tech companies either. I studied several dozen organizations that achieved dramatic improvements in executing their core mission by leveraging computing for the public good.

There are many ways to both benefit the public and support your mission with computing. One approach is to take advantage of state of the art advances in computer hardware and software. For example, the Children’sHospital of Philadelphia started with an industry standard PACS for storing and managing their digital images. Unfortunately, the proprietary system did not deal effectively with the demands of modern complex healthcare data. Nurses and doctors who want to spend their time on patient care found themselves having to spend time on wasteful and expensive activities such as manually retrieving digital images.  After implementing a Vendor Neutral Archive, the hospital was able to more efficiently store and retrieve images and to achieve significant cost savings. Stakeholders such as doctors and radiologists were pleased. Most importantly, patient care was improved because imaging data became more rapidly and reliably available, greatly reducing instances of patients “getting the run-around”. The hospital’s already world-renowned reputation for excellence in children’s medical care increased even more. 

A second approach uses distributed computing such that experts can combine forces and make discoveries no single person or institution could make alone. For example, in another healthcare project, a team of interdisciplinary neonatologists, known as The Children’s Hospitals Neonatal Consortium (CHNC), is collaborating with The Child Health Corporation ofAmerica, based in Kansas City, to develop a national database to identify and share best practice recommendations for rare, life threatening conditions. Although still early in the development cycle, the CHNC initiative has already fostered important discussions between member hospitals about how to collect and study data in compliance with federal healthcare reform mandates. When fully implemented, the project will facilitate tracking and trending of individual and patient data, and establish benchmarking standards for quality care across the United States. Physicians and their patients in rural or otherwise isolated hospitals will share in the benefits of cutting edge health informatics research. 

You don’t have to be a large organization to benefit from using computers for social good. As demonstrated by the Sea Turtle Conservancy (STC), based in Gainesville, Florida, social networking can be a powerful way for a small organization to gain more power and influence. With a staff of fewer than 20 people, the STC is trying to reach a world-wide audience about the importance of saving sea turtles. By enhancing, and in some cases replacing, traditional labor intensive outreach methods with a strategic use of social media, they get their message out where it really counts. For example, when the Deep Horizon Oil Spill occurred, state and federal agencies asked for STC assistance, knowing the group was a source of reliable, accurate information about sea turtles and that they had an effective social media presence. The agencies kept the STC in the loop about many activities and the group subsequently played an important role in voicing the positive aspects of the disaster response. Significantly, the STC increased their membership even during the recent recession.

Surprisingly, most organizations I studied did not advertise their computing accomplishments. Yet publicizing your use of computers for the public good can be a valuable selling point. Here in San Diego, where our industry focus is heavily weighted towards biotechnology and medical care, we have a unique opportunity to be on the leading edge of social responsibility and computing. Competitive advantage will follow. San Diego businesses use cutting edge digital technology, are making life saving new discoveries all the time, and provide state of the art services. Putting the spotlight on how you use computing to benefit society will surprise your audience and cause them to see you in a whole new light.

 

Medical Smart Phone Apps Used Smartly

National Public Radio's Science Friday ran a story last week about a new twist on technology and healthcare: the development of medical apps that will interface with your Smart Phone. The idea is that there will be apps that will collect and display data (through various means) that you can read on the cell display. Sleep patterns, nutritional patterns, changes in subtle bodily systems over time.

Most of the conversation focused not on the apps themselves but on the larger picture of what such personalized medical tools mean for the future of medicine.  It is a shame that sometimes the comments seemed to imply that the situation was a zero-sum game. The wisest comments seemed to come from those who pointed out that appropriate use and balance was key. Common sense needs to apply.

The development of medical apps should come as no surprise. Mobile device apps are popping up for just about everything. Interfacing an app with a device such as a wireless headband that transmits brain wave data, or that tracks and analyzes blood sugar levels over the course of the day could be incredibly useful. The application possibilities are enormous.

A large proportion of the population has some form of periodic or regular heart murmur; sometimes so mild that it operates below awareness. Let's say you have such a murmur and it is detected on a routine office visit. Today, if  you and your doctor want to learn more about it, the first thing to do is to make an appointment to go in and get tested with an electrocardiogram. A short office visit, you get to see the graphical readout of your heartbeat. An expensive office visit. Perhaps your heart murmur decides not to put in an appearance during your visit. No useful data. Do you repeat this test at regular intervals hoping to catch the murmur in action?

If you want to know more, with a higher chance of success, you can get outfitted with a harness that you wear around for a day or so while it gathers all sorts of data as you go through your normal routine. Even more expensive and several more office visits. What if after all this you and your doctor determine you have a perfectly normal heart and there is nothing to worry about? Fine, if you had the time and the health insurance to accommodate. A great example where those who have financial resources,  insurance and access, can benefit from superb healthcare technology. The rapidly growing population who do not have these resources lose out.

With current technology an app could be developed that would gather this same data and send it to your Smart Phone. The app would most likely cost less than one office visit. You could then take this data in to see your physician and together discuss its meanings and implications. Findings ways to gather more thorough, personalized and reliable medical data could be a win-win.

Of course, there is all sorts of room for concerns about the dangers of faulty self diagnosis and inappropriate healthcare behavior. These are not concerns new to Smart Phone medical apps; the valid concern has existed as long as we have had online medical websites. Longer. The dangers of self diagnosis from insufficient data and depth of knowledge need to be addressed. However, at least in this situation people would be looking at their own data rather than aggregate data from some remote database. This brings us back to the need for collaboration and balance.

These apps are not going to fundamentally change our current structurally defective healthcare system in the United States. But, used appropriately, with, as the Science Friday guests said, compassion and judgement, apps can provide personally relevant information that is often lacking these days. I also see medical apps as an opportunity for well trained cross disciplinary computing professionals to put their skills to work in a cutting edge way and address some of our most pressing healthcare issues. After all, the app developers will be the ones who decide what to code up. Personalized medical apps have the potential to be empowering.

Computing Technology in My Courtroom

Many people have been asking me about the jury trial I spent most of the last two weeks on. Two weeks of being able to say only "I'm on a jury trial", especially as the trial was pretty intense, was challenging. Interestingly enough, this particular trial was trying out the use of computing technology in a way they hadn't done before so we were guinea pigs. What was most interesting to me was that the technology itself wasn't particularly unusual or radical, but the people in the court were using it for the first time and I got to see how they chose to use it, what worked and didn't work, how it contributed (or not) to the trial process, and how everyone (jurors, judge, lawyers, witnesses, plaintiffs, defendant) reacted to it. There was a tech guy in charge and I wasn't supposed to talk to him (or anyone else). I wanted to find him after the trial was over and pick his brains but he had vanished by the time we were out of deliberations. Too bad.

The trial was a messy complex personal injury lawsuit (now I am allowed to say anything I want). The "facts" were not at all clear. Enormous sums of money were at stake and people's lives on all sides hung in part, in great part, on the credibility of witnesses and the technology they worked with.

A key issue was whether or not one of the plaintiffs had suffered a particular back injury, and what options (surgical or otherwise) were warranted if he had. Spinal injuries are very complex, more than I ever could have imagined. Surgery can involve pulling out all your innards and laying them...somewhere... in order to get access to the spine. Ew. We the jury heard DAYS of testimony from doctors and surgeons about the spine and soft tissue injuries and viewed shot after shot of digital imaging tests including MRIs, X-Rays, Discograms... The courtroom set up a system whereby there was a giant screen TV in front of the jury box; the judge had a monitor, the witness on the stand had a monitor, the plaintiff and lawyer tables had their own monitors and there was a tech guy in the back controlling who could see what and when. Sometimes control was given over to either of the lawyers. Cables ran around across the floor.

Sometimes they wanted all of us to see a Discogram image for example (a somewhat controversial procedure where they stick 8 inch long needles into your spine and ask if it hurts). Other times they wanted all of us to watch a 3D MRI or a simple document display (usually of endless spreadsheets of mind numbing medical or financial data). The images were pretty interesting actually, especially as I have done research into digital image use in medicine and now got to see it put to use in a legal setting. Other times they wanted the witness to see something along with the judge and lawyers but not the jury. Basically, pick your combination, and at some point in the trial any given subset of people were supposed to see it.

Sounds easy right? By the end of the trial they more or less had it down. Here are some interesting highlights of their learning curve from a usability perspective in the juror box.

The giant TV was on a stand about 6 feet high. Hard to move, trailed a long cable and had to be shoved around the room without tripping over other cables. One of the lawyers tripped on a cable early on. (not badly, but it threw him momentarily off stride). The TV blocked some of the jury from seeing the witnesses (not good) and blocked the judge from seeing some of the jurors (not good). We paused while they figured out where to best put the TV. The lawyers and judge could not see what displayed on the juror TV without walking around in front of it. This led to some early significant "oops" moments. For example, one witness was looking at his screen (along with the lawyers and judge at theirs) describing in great detail something about the spine and we jurors were completely in the dark about what was being referred to. Eventually they figured this out and some time was taken to figure out why the connection wasn't working. We started over again.

In another case, the plaintiffs' lawyer thought we were all looking at some emotionally laden photographs the witness was describing, however we couldn't see them. There were quite a few photographs and it went on a while. It turned out that our not being able to see the photographs was a good thing because the lawyer hadn't requested and obtained permission to show them as exhibits (not good). Near the end one picture momentarily flashed on the screen. Our generally genial judge looked rather annoyed when all this came to light moments later. A backroom huddle between the judge and the lawyers took place and I suspect some strong words were exchanged.  In the end we saw none of the photographs and ignored the one we had seen. Had we been shown all those photos which were eventually ruled as inadmissible I suspect there would have been some truly severe backroom lecturing by the judge. As it was, both lawyers were pissed off from what I could tell from their faces, though nary another word was spoken on the matter.

Then there was the witness whose monitor on the stand stopped working and was asked to come down to the big TV. He stood smack in front of it, back to the audience (ever had a teacher do that? :) and had to be gently and repeatedly asked by the lawyer to move out of the way so we could see what he was talking about. The lawyer actually helped him move at one point.

One time the judge's monitor stopped working and they tried to swap it out with the witness monitor which was a few feet away. The cord wasn't long enough. Our very cheerful and friendly judge disappeared under his bench - one moment he was there and the next moment  he was gone. I had glanced away at the tech guy and when I looked back - no judge. Huh? Moments later he popped up, in black robe, happily holding a cable and cheerfully announcing he had figured it out. It was an amusing moment in another wise not at all happy trial situation. We appreciated every rare light moment that came our way.

There was the first tech guy (not the one referred to above) who fell asleep sitting at his little table at the back of the courtroom. The lawyers had been in the habit of requesting him to do something without turning around and it was only when there was no response that we all noticed the poor guy snoozing. Probably bored to tears by all the talk of the T4, L4-L5 spinal disks, protuding jelly globs of spinal material, endless lists of complicated drugs that I had never heard of (and hope to heck never to have to take after hearing about their side effects) and the gorey details of spinal disk replacement vs. disk fusion vs. inserting tubes around the spine full of pain medication....(there was more but I'll stop). After that we got the second tech guy.

I was pleasantly impressed with the grace and patience with which all the court personnel handled the technical experiment. It must have interfered with their usual mode of doing business and caused them to do some cognitive context switching when they least wanted to. From a juror perspective I wonder how they conducted such a trial before? All those complex digital images, some rotating and zooming. The computing setup was very effective in presenting the information under discussion and made it quite clear why there was lack of medical agreement on various procedures and possible outcomes. One variable at least was made less abstract and easier to evaluate in our deliberations.

As a passing note, I want to comment that this experience, in spite of the time it took up and the emotional stress it induced for all the jurors (we compared notes extensively afterwards) was absolutely worth it. My perspective on our trial system has risen significantly - everyone took it very seriously, worked hard together and we did our very best in deliberations. It was a fair process. If you haven't been on a jury trial I suggest you take advantage of it when given the opportunity.

Zen and the Art of CT Scan Investigation

"Because we put emphasis on some particular point, we always have trouble. We should accept things just as they are". (Zen Mind, Beginner's Mind p. 120)

Yesterday I described my "plan" for learning first hand about the digital imaging equipment I have been studying for one of my projects. My plan turned out to be easier said than done - this was definitely not Grey's Anatomy. The staff were politely but determinedly cycling people in and out of the CT room as fast as they possibly could. Before I even had my bag picked up off the counter and had found my necklace they had wheeled the next guy in.

My attempts to be politely inquisitive met with only modest success. I started with a simple question "Is it blue?" Ok, probably not quite so inane (I hope), but the idea was to ask a very friendly and innocent sounding question (although a real question) about whether or not the contrast IV liquid was colored. How else might one get contrast? I was imagining all these colorful images on the imaging machines, because I have seen so many of them in my research. Very high resolution pictures of multicolored body parts with swoops and curves. Sometimes rotatable in 3D and able to be zoomed in and out and entered and exited in fly-by mode. So I figured blue was a likely color, not occurring naturally in the body - at least as far as I know.

The tech looked at me like I was a bit loony and I had to explain that I wanted to know how this liquid was going to provide the contrast to enable the CT scan to better read my head. I said I had an interest in digital imaging equipment in medicine - now trying another approach. She still wasn't interested in my line of inquiry. Eventually I managed to get the information that no, it was not colored, it worked by expanding the blood vessels so that they would stand out better. By the time I had gotten that far I had been jabbed and was being injected and she was out of there. So much for asking about the CT machine. It was 4:45 pm on a Friday and they probably just wanted to go home.

When I first walked in the room I had realized the people (at least 3) sitting behind the glass wall were back there to protect themselves from the radiation I was about to get blasted with and it was going to be impossible to ask them about their viewing equipment and software or to ask to see my scan. Rats. Foiled again.

However, another opportunity presented itself. Shortly after the first tech left, another one came in and said he was there to check the IV because sometimes it didn't ... do something or other right. Whatever it was, it sounded a bit fishy to me. Anyway, he was a bit more talkative and didn't give me any funny looks. He stood there for a minute or two seeming to stare at nothing much and suddenly ...  I started getting really warm and it felt like liquid was flowing all over starting at shoulder level and migrating all the way down to my toes. Not only that, it felt like a lot of liquid was pooling in all sorts of strange places. So I said "What is it doing?" And he asked if I was getting warm, said that was normal, did I feel ok otherwise and that's all he said. He continued staring calmly at apparently nothing for another few moments. So I  contemplated warmness and expanding blood vessels and wondered if I'd soon be leaking out of previously unknown pores. Then they told me (for the second time) I had to close my eyes. Darn it. No more watching what was going on.

Not long after, a bit of whirring and movement later, we were finished. The second guy came back and told me he had also been out there to make sure I didn't start vomiting! Now that explained all the questions about food and drug allergies and the "no eating for 4 hours prior" requirement and why he had so quietly stood there and asked me ever so casually if I felt ok!

"When we inhale the air comes into the inner world, when we exhale the air goes to the outer world...actually there is just one world...our throat is like a swinging door" (p. 29)

So while I felt like I might be developing new porousness I also concentrated on not moving my head because I had been told that if I moved my head or opened my eyes we'd have to do it all over again (meaning I get zapped with lots more x-rays). This was a hard task being the patient/researcher!

More so because I have a head cold and my sinuses are blocked and my nose wants to run and I periodically want to sneeze and...you know...all those things that go with having a nasty head cold and are exaggerated when lying on your back where it can all congeal into one gloppy spot in your head.

So I breathed...in...out...in......out......do not sniffle......in.......out.....do not worry about what is going on in your nose.... or the back of your throat...in...out... zen. Getting into the zen of it all. Or as Spock would have said "I became one with the CT machine". In goes the breath, out goes the breath.

I do have one clear success to report from the original "plan". It was very very easy to ask for a copy of my scan. Back at the front desk I checked off about 3 boxes on a sheet of paper and was told I could either wait 30 minutes or they'd mail it to me. Figuring it would be more than 30 minutes I opted for the mail route. They said it would go out Monday! No one batted an eye at my request! So, hopefully soon, I will have my own digital copy of my head scan.

Wait a minute. Not "hopefully".

"Perhaps". Non-attachment.

A CT Scan as an Opportunity to Get Personal

As those of you know who have been following these postings regularly, I have written frequently about issues related to medicine - from medical informatics to digital imaging. I am working on several projects in this arena and sucking up as much information as I can get. There will be more to come because recently I have been digging into issues related to electronic health records. Fascinating stuff - although reading congressional legislation as officially posted in the Federal Register and elsewhere takes stamina and many lattes.

Tomorrow I am going to conduct a little investigation / experiment because an opportunity fell into my lap. This experiment relates to digital imaging and medical records.

I am going to have a CT scan. Nothing serious (unless they find a screw loose in my head) but they will be injecting me with dye to get a better view of my head - the object of interest. Not one to miss out on an opportunity, I am going to do several things:

I am going to see how much I can talk to the radiology techs about their equipment. Let's hope I get a happy chatty tech.

I am going to see if I can convince them (perhaps by tossing around well placed vocabulary they would not expect your typical patient to have) to let me in on some of their experiences with the imaging and storage systems.

I am going to try and get them to let me look at my scan, although I know from experience that they will clam up completely if I ask any questions about what I'm looking at. Nonetheless I will see how far I can get.

Finally, I am going to ask at the front desk what the procedure is for obtaining a digital copy of my scan. I know that legally my records are mine to ask for. I also know from a few experiences in the past that for some reason it can be very hard to get records. One gets run around in circles and stalled in all sorts of ways. In case any of my current medical personnel are reading this, I rush to note that these previous experiences were at a different medical facility in a different state.

Stay tuned. This could be interesting

Medical Informatics Musing

Not for the first time, I am thinking about the complex world of health care informatics. At the moment I am studying efforts underway to standardize and put into electronic form medical data from personal health records, laboratory and research centers, existing specialized databases and archival hard copy. There are people devoting hundreds of hours to this effort, sometimes on a volunteer basis. And you want to talk about opportunity to do cool things...

Several organizations promote standards for medical terminology and for the most part they are complementary. They have their own histories and apply themselves to different subsets of data. In the United States several federal agencies manage data (in addition to many private and non profit organizations too numerous to list). Examples include the National Library of Medicine, The National Cancer Institute, the Centers for Disease Control and Prevention, The Agency for Healthcare Research and Quality, The Office of the National Coordinator for Health Information Technology. Different data sets, different functions, different structures.  Medical clinicians I have recently spoken to tell me the data gathered, maintained and disseminated by government, non profit and private groups have played an incredibly positive role in improving patient care nationally and internationally.

However, there is still a lot of work to do and much of it hinges around harmonizing data standards and developing the most effective ways to computerize these data as we move forward.

The most widely used international medical terminology set is SNOMED-CT, shorthand for Systemized Nomenclature of Medicine - Clinical Terms. In addition to providing detailed terminology definitions in machine readable form, SNOMED (as it is often called for short) provides a logical structure of relationships between concepts that covers virtually all areas of medicine.

Another large internationally accepted set of medical terminology and structure is LOINC, acronym for Logical Observation Identifiers Names and Codes. The data maintained in LOINC format comes primarily from research labs and is available for use by hospitals, physicians and others.

The third large and highly visible standardization effort is RxNorm, terminology and relationship structure for clinical drugs (to most of us that means prescription drugs) approved for use in the US. As with SNOMED and LOINC, RxNorm defines terms in machine readable format.

These are just the 3 biggest names associated with computerized standardization efforts. And if you think there are a lot of acronyms here, that is just the beginning. I suppose there may be no more acronyms in the medical world than in the computer science world. Just as non computer scientists often find our discussions puzzling and difficult to comprehend, non medical personnel may initially find it eye boggling to wrap their head around medical terminology and standards documents.

I'm in neck deep reading about these standardization efforts right now and it IS fascinating. There is a real coming together of two fields and two worlds here and a huge opportunity for computing and medicine. I am impressed with the enormity of the task needed to bring all these data into harmony with one another. Advances in computing technology and in medicine are each advancing so fast ... cutting edge on both sides.