Doctor, Researcher, Design Thinker

This is the blog of Joyce Lee, MD, MPH. I am a physician and researcher and I think a lot about how DESIGN THINKING, EMERGING TECHNOLOGIES, and PARTICIPATORY MEDICINE can improve health outcomes and accelerate research. I am interested in: #whatifhc #designthinking #dataviz #mhealth. Find me at joycelee.me Twitter: @joyclee

[joycelee]

Changing virtual venues

Moving the blog over to https://medium.com/@joyclee. Please watch for subsequent posts there! 

[joycelee]

So all you need is an #iphone and #gchat for a doctor's visit right?

Google just announced that they are piloting a specific health focused service for Helpouts which apparently is a fully HIPAA-compliant system that allows patients to receive telemedicine from clinical providers.  They are currently partnering with One Medical Group, an "experience-focused" medical practice, which allows patients to "request a Helpout, and typically speak with a physician within 20 minutes. It’s recommended for people with cold and flu symptoms, rashes, or simple infections."

I love the idea of medicine finally moving away from the clinic and towards a digital future, and in our health system we are currently exploring ways that we can deliver telemedicine to our patients with diabetes.  But to do this effectively, we have to understand the elements needed for a health visit. One of my students helped me map out this diagram of a diabetes visit and it makes me realize that telemedicine is much more than just communication technology.  For a larger view click here.

How do you measure height, weight, and blood pressure of the kids to make sure that they are growing and developing and are not hypertensive? How do you check their injection sites to make sure they don't have scar tissue affecting absorption of their insulin?  How do you obtain hemoglobin A1c, which is the 3 month measure of glycemia that we usually obtain in clinic to help inform our treatment decisions? And how do we review blood sugars from afar given that most patients walk in with numbers written on a piece of paper?  It's not that simple, even with a number driven disease like diabetes.  I do believe the sky's the limit in digital health, but for right now I don't think the google solution will fly for us. Other options include using designated telemedicine centers, or even delivering co-managed care in partnership with general pediatricians; time will tell as we also try to figure out that horrible tangled web of reimbursement!

[joycelee]

Flipping the Health Services Research Seminar with Twitter 

Check out the Health Services Research seminar that I will be giving at the Child Health Evaluation and Research Unit (CHEAR) Tuesday 11/19 at 10:30EST!  You should attend and checkout why #ihearttwitter!  Scroll down after you hit the link of the microsite to see what we will be talking about.  Send your questions real-time through Twitter using the hashtags #chearhsr #chearsm

[joycelee]

Acetaminophen (Tylenol) overdose: Unavoidable pediatric problem or the consequence of bad design?

Acetaminophen (Brand Name: Tylenol) is a parent’s and pediatrician’s best friend. It is probably the most widely used medication in children, who take it for the nearly universal complaints of fever and pain. There are other medications like ibuprofen (Brand Name: Motrin) that can also alleviate these symptoms but ibuprofen can cause stomach upset, so I often prefer acetaminophen as the first line medication for my kids when they get sick.

Despite that fact that it is so widely used, acetaminophen can be a very dangerous drug that can kill otherwise healthy children and adults. Kudos to Propublica and This American Life for their in-depth series about the dangers of acetaminophen. You MUST read “Use Only as Directed" and "Dose of Confusion" and listen to this compelling audio story, as this information applies to you and your family.

Children and adults who take too much acetaminophen can experience liver toxicity and death, and it is estimated that 150 people in the US die from acetaminophen overdose every year. Unfortunately that is what happened to little Brianna.

What makes acetaminophen so dangerous is that has “a narrow therapeutic index” which means that there is a small margin between a “safe” dose and a “harmful” dose of acetaminophen. T. Miller and Sean Cole discuss this in their podcast:

So with a drug like ibuprofen, Advil, it can cause stomach and gastric problems at the recommended dose. Aspirin, same thing. But it takes a lot of ibuprofen to kill yourself. In fact, there’s not a lot of cases on record of anybody dying from ibuprofen toxicity. In the only case he could find, it took 20 times the recommended dose to kill someone. Same with aspirin. You have to take six or eight times the maximum recommended dose for it to become toxic to your system. With acetaminophen, just twice the maximum safe dose, or even less, taken over several days could possibly get you into serious trouble.

I’ve known about this danger for a long time, since tylenol poisoning is a staple of the medical school and pediatric curriculum, and there’s a chart in the Harriet Lane Handbook of Pediatrics that describes when to use the antidote N-acetylcysteine, which was developed to counteract the toxicity of a Tylenol overdose. However, given my recent personal revelations regarding the poor design of the Epipen Jr., and my new perspective as a designer, I am just flabbergasted and disappointed that Tylenol overdose is treated as a common pediatric problem, as if it were some naturally occurring disease over which we have no control.

Stay tuned for the next post, in which we will talk about design flaws leading to acetaminophen injury and death.

[joycelee]

Distinguishing the Hype from Reality in Mobile Health

“Dear New York Times, please don’t serve us infomercial articles”

When you read the above tweet stream, you would think that HealthTap, a social network of doctors to whom patients can pose questions, is the next blockbuster drug of the century. The tweets link to this article in the esteemed New York Times:

Here is how the article starts:

While most start-ups feverishly track figures like the total number of users, Ron Gutman, the founder and chief executive of the health information start-up, HealthTap, is more interested in a different data point. This week, the start-up heard from its 10,000th user who said the site saved her life.

Which coincidentally reads just like the advertising that company is sending to my inbox:

And look, in the last few days since the the article was published, they've saved another 182 lives and prominently display this on their website!

I am a physician researcher with specific training in biostatistics and epidemiology who studies health outcomes. I am also a technology enthusiast and I co-direct a mobile technology program for managing chronic diseases. I believe that mobile technology has great promise for making a difference in the lives of individuals with chronic disease, but we have to use real evidence to understand the impact.

I don’t see anywhere how HealthTap recorded or evaluated or defined how a “life was saved”. So much important health research is performed and never even gets the light of day in such an esteemed publication, yet we take some tech founder’s claims about health as a given? Let’s not forget that he obviously has an economic interest in touting his app’s effectiveness, and from what I can tell he doesn’t have any experience in assessing health outcomes.

Dear New York Times, I am an avid subscriber and reader of your esteemed publication. But please, do some fact checking. I would think that stories related to health (even if they are in the technology section) would be more carefully vetted for their accuracy. It is folly to give some founder’s claims about health outcomes equivalence to scientists and researchers who spend years and lots of resources and effort trying to assess whether a technology does really save lives. You should be providing objective reporting on new health technology service, not some sycophantic tech blog piece that is afraid to offend a popular Silicon Valley startup. I also posted a brief comment here and there are other comments which reveal a very different narrative of the company here, not to mention the fact that they tend to dabble in hyperbole as a practice. 

[joycelee]

My Office as a Reflection of my Transformation from Doctor to Designer

I came back from sabbatical with the traditional hierarchical medical office: files, books and bookshelves, a large desk which takes up over half the office, a tiny little whiteboard on the door that was hardly used, and not a lot of room for collaborators.  So I did a little bit of remodeling to change the space that I work and change the nature of my work.  I got rid of pictures, bookshelves, and papers, turned the desk into one long table that now fits 4-6 people, and painted both walls with whiteboard paint so that as a team, my collaborators and I can ideate and create new prototypes and systems! B did a little bit of decorating for me as well, true to his design skills! (I think we need to work on getting that n into "design thiking"!)

[joycelee]

Blame and Burden: Is Hand-washing the Responsibility of the Patient, or the Health Care System?

On the heels of my talk about design and health care at the 2013 Cusp Conference, I wanted to comment on this article which recently came out in the WSJ. Hand-washing is critical for avoiding the spread of infections acquired in hospitals, but only about half of health care professional comply with hand-washing protocols, despite a variety of different interventions to improve hand-washing rates, including penalties, electronic sensors, and video cameras. @lauralandroWSJ reports that newer interventions are now focused on having the patient ask the health care provider to wash his/her hands.

"Some monitoring systems emphasize patient engagement and sound an electronic alert to remind patients to speak up when a staffer enters the room."

Really? Are we training our patients to be Pavlovian dogs? I am not sure how I would feel if I had to speak after a bell went off.

"The nonprofit Association for Professionals in Infection Control and Epidemiology is kicking off a campaign this month including posters mailed to 15,000 hospitals with tips on how patients can take an active role. It suggests asking staff about hand hygiene and requesting that hospital rooms be cleaned if they appear dirty."

Patients have to first determine whether the room is clean (mind you the bad bugs don’t really make themselves known in an obvious way) and then they have to request one if it’s not? Is it not the right of every patient to have a clean room?

As a “medical designer”, I have written previously about how we blame our patients instead of blaming the design of the health care system. But this takes things to a whole new level. I think it’s a pretty sad state of affairs for the health care system to ask patients to do our job for us. We are getting paid to do supposedly deliver high-quality healthcare, yet we are putting the burden on the patients to protect their own health, and we make them do it for free. Don’t our patients have other things to do, like focus on their illness and recovery? Not to mention the fact that “the white-coat barrier” keeps them from saying anything anyway.

"…one-third of patients surveyed at the University of Pittsburgh Medical Center said they observed doctors failing to wash their hands, but nearly two-thirds said nothing to their doctor about hand hygiene. Most didn’t believe it was their role to do so and said they felt embarrassed or awkward and worried about reprisal."

Let’s stop blaming and overburdening our patients, and let’s start using design thinking to find a truly patient-centered solution to improving this problem.

[joycelee]

This was Not a Medical Conference: CUSP 2013 

I just posted my slides (adapted for the web) from a talk that I gave last week at the 2013 Cusp Conference.  Cusp is a conference about the design of everything.  I was so honored to present at this event given the caliber of speakers in the line-up (just to name a few, a famous LEGO artist, a sword swallower, and Gary Slutkin from CureViolence).  It literally was the most amazing conference I have ever attended in my life!  My talk was about my personal journey from medical doctor to medical "designer" and why I think it is so critical for us as medical professionals to become design thinkers.  Thank you to Dave Mason and the folks at Multiple for an incredible and unforgettable experience! 

[joycelee]

Could Doctors Have Something to Learn from Designers? 

Levels of Empathy for the User (i.e. the Patient) for Designers compared with Doctors.

[joycelee]

Design Thinking for Parents and Kids

School is in session! How should you react to your child’s creations and school work? Here is a #storify that describes a design thinking approach for parents. Thanks to @glentripp and @galileolearning.

[joycelee]

Patient Care: A Design Thinking Problem Every 15 Minutes I had my first clinic today after an entire year of being on sabbatical with no patient care responsibilities. It was a bit harrowing since I had to learn how to use Epic EMR in a rapid fire manner in one afternoon. But it was really exciting and rewarding to see my patients with diabetes and their families. I now view the clinical world with a new perspective as a design thinker. Every visit, every encounter with a patient is a design opportunity waiting to be realized!

[joycelee]

Social Media, a Core Curriculum Topic for Academic Fellowships?

I just saw the call for workshops online for the 2014 Pediatric Academic Societies Meeting, the main US pediatric research meeting. In it they solicit workshops, including ones focused on the American Board of Pediatrics core curriculum for pediatric fellows. Here’s a snapshot of this “core curriculum”. Did anyone else notice the gap in the list? Where’s the topic of social media, that ever pervasive tool that will one day be like waiting room furniture for every doctor?

To bolster support for this topic, does anyone have good examples of uses of social media in academic medicine? Here are some examples but I am looking for other use cases. Please Email or tweet to me with hashtag #acadhcsm.

[joycelee]

Parents, #leanin for your daughters!

As a woman in medicine, I am well aware of lower rates of participation for females in the scientific fields like medicine, life/computing sciences, or engineering. As a result, I am a big advocate of encouraging young women in STEAM (Science, Technology, Engineering, Art & Design, and Math). (You can read more about STEAM here). I think early exposure decreases the fear factor and builds confidence in kids, so that science/”making”/building just becomes second nature to them.

So when I took my son to Lego camp this summer, I was shocked to find that 19 or 20 kids in the class were boys. Mind you, we were living in the heart of Silicon Valley where it seems that every other person works in the tech industry or is some kind of engineer. Why would’t there be more girls there? I asked the teachers if it was always like this, and they said, yes, and then mentioned that the occasional girl who did participate seemed to be dragged there by her brother.

The kids in his class were relatively young, 5-7 years, which is an age at which kids don’t have a lot of decision making capacity. For example, I didn’t really ask my son for his opinion about what camps to attend this year; I arbitrarily decided on camps that I thought would be good for him and that worked for our family schedule.

Parents, it’s our responsibility to #leanin for our girls, so that they can reach their full potential in STEAM. When my daughter is ready, I plan to send her to Lego, Knex, and mobile application programming camp, following in the footsteps of her brother (and with the hope of one day hiring her to design some #mhealth apps for me ☺ ).

Icons by John Trillana, Noun Project

[joycelee]

The Rise of the Retail Clinic and What it Means for Redesigning Healthcare

A new paper was published in JAMA Pediatrics recently, about the use of retail clinics by parents of children.  In a survey of parents with 19 pediatric practices, close to one quarter of parents reported using retail clinics for pediatric care. 

Interestingly, close to half of visits to retail clinics occurred between 8 AM and 4 PM on weekdays or 8 AM and noon on the weekend, hours that pediatrician’s offices are typically open!

When asked, parents reported these reasons for seeing the retail clinic:

More convenient hours (36.6%),

ŸLack of availability of office appointments (25.2%)

ŸNot wanting to bother the pediatrician after hours (15.4%)

ŸThey thought the problem was not serious enough (13.0%)

Kids were usually seen for acute upper respiratory tract illnesses (sore throat, 34.3%; ear infection, 26.2%; and colds or flu, 19.2%) and physicals (13.1%).

Ok I have to be honest; traditionally, retail clinics have been the nemesis of the pediatrician.  We complain about how they deal only with the easiest cases, and how they erode the medical home and continuity of care.  (Stories abound, for example, about the kid who sees multiple providers for “viral illness”.  Only after 3 different health care encounters with 3 different providers does the kid end up getting diagnosed with diabetes, but lands in an intensive care unit because of the delay.) 

But let’s think about what we can and must learn from this. 

We’ve lived in a provider centric world for a long time. Parents and families came to us; we didn’t have to come to them.  It was our schedules, and our lifestyle, to which they had to accommodate.

Maybe we should consider the possibility that parents as consumers are quite savvy.  They went to the retail clinic for simple problems that they knew might be easily fixed in a quick visit (i.e. antibiotics for strep throat).  They know that doctors are busy people and didn't want to inconvenience the physician after hours.  If they thought the problem was more serious, they might have chosen to see the pediatrician and not the retail clinic.  And let's be honest, if you knew as a parent that you could schedule an appointment within minutes and be in and out in less than an hour, wouldn't you be tempted to take that option, instead of waiting for an afternoon appointment that requires you to keep the kid out of school until then, breaks up the rest of your day, and keeps you from getting your work done? 

Medicine is changing and so are the expectations of our patients and families. How can we redesign the medical system to make a more frictionless system to better serve our patients?  

Check out this nice commentary by Edward Schor, MD, as well. 

Noun project Icons by Luis Prado and OCHA AVMU. 

[joycelee]

What does a cute little octocat have to do with medical research?

Most people I work with in medicine have never heard of Github or are familiar with its cute little octocat.  For the unfamiliar, Github is an online repository, which is an essential tool used by computer programmers to store their programming code.  It has a number of virtues, including giving users the ability to track multiple versions of their code (sort of like remembering all the track changes you ever made to your word document).  This is an essential tool for programmers but its value goes beyond its function as a track changes repository, as it is a site that facilitates open source collaboration, given its “social” features, similar to social networks like Facebook or Twitter, in which you follow the content of others or others follow you.

The most amazing thing about Github is that many individuals post their code (their work, their blood, sweat, and tears) publicly on their github profile.  Individuals will comment on others code, providing valuable input that the owner of the code can use to improve their work.  In addition, individuals can “fork” another person’s code repository, and work directly on the code in their own Github profile to make changes or improvements, sort of like a tag team collaboration. Github is the tool to help facilitate large-scale open source collaboration for the software/web programming world (such as that which lead to the Linux revolution).  By early 2012 there were apparently 1.2 million users hosting over 3.6 million repositories.  Now that’s collaboration to scale.

So again, you may ask, why should physicians or medical researchers care about Github?  Because it can have broader application beyond the software/web programming world, as shown by its use among non programmers, who are currently repurposing Github to advance collaborate in their own respective fields.  They are posting book projects and transcripts of talks on the site, to encourage conversation and collaboration. One user even published his personal DNA information to encourage development of open-source DNA analysis.  It has been suggested that Github could even be used by US citizens to “fork” the law so that they can propose their own amendments to their elected officials. 

How might we use Github to democratize the world of medical research?  As researchers we do so many different activities that we perform in isolation, which forces us to “reinvent the wheel” constantly, from drafting of ethics board applications, to creation of research protocols, to the writing of snippets of statistical code or code for web programs.  We usually share this experience and knowledge in a piecemeal way to just a few individuals who we happen to see on a daily basis.  If we could share all of this information more openly and widely with the community, we could reduce work that is menial and duplicative, which would enable us to accelerate research in much more meaningful ways.  I recognize that not everything we do can be shared online because of health privacy laws (the Health Information Health Insurance Portability and Accountability Act (HIPAA)), but there is so much information that we can share, not only in academia but in industry as well, to facilitate large-scale collaboration towards a common purpose of making a difference in the lives of individuals suffering from disease.

So I have opened my own Github account, and I have posted my first project.  I have also created part one of a “how to” slideshow about github for non-programmers, who want to dive in to the open source movement.  I hope that this represents just the first of many resources and tools and ideas that I might share with the larger community to inspire open-source collaboration in our academic world. 

PS. I want to give special thanks to Ben West for sharing with me his passion for open-source collaboration, introducing me to Eric Raymond’s book, the Cathedral and the Bazaar, and showing me the possibilities of Github.   

Health icon designed by Ocha Avmu

[joycelee]

The most important reason for Diabetes Health Care Providers to be on Social Media

I gave a talk at the American Diabetes Association this year (2013) on social media. I gave the top 10 reasons why providers/researchers should be on social media, and these are the last slides of the talk, which provide the most important reason why diabetes health care providers should be on social media.  

[joycelee]

I believe that social media provides a new and exciting medium for communicating with the public about health and health policy issues.  Therefore, last week I posted my first #storytelling experiment on Twitter about Baby Erik in a series of 68 tweets.  You can check out the Storify here.  This was an unbelievable story about the the herculean effort required on the part of his parents to enroll him in SCHIP, the State Children's Health Insurance Program (SCHIP) in the state of Pennsylvania.  This was an incredible #design #fail on the part of the health care system.  Baby Erik was lucky, as he was healthy and had well-educated parents who had the capacity and will to aggressively navigate the system (in addition, dad studies health economics!).  But the question is: what is happening to other families applying for health coverage, especially those with less education and sicker children? How can the system be redesigned to avoid this perilous journey for every patient?