Guided Medicine or Big Brother: A Thought Experiment

Self-tracking devices have been lauded as the potential solution to filling in the gaps in traditional clinical data collection.  Oftentimes, measurements in the doctor’s office are not truly indicative of the patient’s everyday behavior and lifestyle; patients may experience white coat syndrome, or increased anxiety in the presence of the doctor.  Automatic self-tracking in everyday living may provide more accurate data because the data is collected in more natural settings.

One of the goals of self-tracking is to model and predict human behavior.  This sounds quite promising; however, how does this automated self-tracking actually come about?  Would we want our personal handheld devices to predict our next moves?  And what a fascinating thought experiment it would be to have our phones, these inanimate devices, give us life suggestions.  But oh wait, they do.

Google Now carefully watches its users’ every interaction to improve its efficacy.  It can predict where you will go judging by your past behavior.  It can detect that on Wednesdays, you like to get a Grande green tea frappe at Starbucks before your Russian literature class, and sometimes, when you’re having a particularly packed week, you treat yourself and venture into the bold Venti end of the spectrum.  While Google Now has the potential to notify you if there is a promotion on green tea frappes, it may suggest another drink perhaps, and as a subtle suggestion, a drink with fewer calories and a lower fat content.

Photo Credit: clipandfollow.com

Popular Science awarded Google Now as the 2012 “Innovation of the Year” for its potential to serve as an “intelligent personal assistant.”  It can infer your age bracket from your recent searches and tailor advertisements to your curated predilections.  For your mother, it can suggest her favorite hair dyes or jewelry boutiques, but what if one day following her sixtieth birthday, it begins suggesting cholesterol medicine and life insurance?  While this teeters on the edge of being mildly insensitive, it may regrettably be a sensible recommendation.

But it doesn’t stop there.  Google Now has a minute-by-minute map of your life.  Not only can it suggest nearby attractions and events, but it can also summarize your daily physical activity.  Given your latest late-night food adventures, it could now suggest restaurants with healthier vegetarian options.  It could also suggest a route that requires more physical exertion (to make up for that discreet donut run that you thought went undetected), and in your hurry, you wouldn’t notice that it was slightly more strenuous, with a steeper incline of about two degrees.

Photo Credit: babble.com

Physicians have the potential to produce mobile health applications that use the same tracking devices as Google Now.  While they have the promise of displaying customized content and advertisements, they can also subtly suggest healthier eats and longer walking routes.  With smartphones constantly linking accounts and contacts, mobile health applications will soon be connected to the information collected by Google Now.  And suddenly, without your conscious awareness, you will be forced to be utterly and irrevocably healthy.

Instant Access to Yourself

With our constant obsession with technological advancements and the fashionable desire to be the first owner of the newest products, we must remember what we already have.  And this isn’t just a banal platitude about being grateful for what we have.  Even though the answers to the world’s problems seem to lie in the continued miniaturization of sensors and further embedded systems, have we forgotten what is already available to us?  Perhaps we should shift the focus from finding the most sophisticated devices to becoming more proficient with what already exists.

In the summer of 2013, I took a psychiatry course at the Geffen School of Medicine at UCLA.  The course had the rather grandiose title: “Personal Brain Management,” yet that was exactly what the physician taught.  It turns out that by having a greater control of what we think and how we think can protect us from a wealth of illnesses.  The only technological advancement I needed to supplement my project was a thermometer, yet that was enough.

Photo Credit: stress-relief-tools.com

My independent project focused on utilizing biofeedback for Mindfulness-Based Stress Reduction (MBSR).  MBSR advocates that practicing mindfulness meditation can help reduce stress and promote greater mental and physical health.  By using a simple stress thermometer, I was able to increase my awareness of my body temperature.  While such a physiological marker may seem to be beyond our control, managing our internal thermostat is surprisingly possible. Roughly speaking, more relaxed states are correlated with increased body temperature, and the thermometer served as a means to quantify these changes.

With just a crude thermometer in hand, I was able to cultivate my relaxation response (in contrast to the familiar stress response).  At the end of a six-week trial, I found that I was better able to control my body temperature, and I scored significantly lower on a battery of stress measures.  For my project, I did not need a smartphone or the newest Nike product or the most sensitive sensors.  I needed myself and 30 minutes of my day.  And am I really so important that I cannot sacrifice the entirety of 30 minutes to myself?

Photo Credit: clintonpower.com.au

In our constant and desperate search for what is new, let’s not forget that we have instant access to ourselves.  While innovative electronic devices can help us organize data and take measurements, let’s not get carried away with their seemingly whimsical promises.  It is as much our duty to discover and invent as it is to make more effective use of what already exists.  By remembering that the first generation of iPhones was released in 2007, we become aware of the humbling reality that perhaps society can function without a supercomputer in hand.

While simple and sophisticated mobile health applications can encourage patients to become more empowered, decreased reliance on digital technology is in its own right just as empowering.  My project at UCLA showed me that I could become more self-sufficient and cultivate my body’s natural capacity to heal with a minimalist approach to technology use.

Quantified Self vs quantified self

I’ve mentioned a couple of his videos before, but last week, my favorite YouTube channel—PBS Idea Channel (and the host, Mike)—released an episode titled “How Much Can Data Improve Your Health?”

In the video, Mike talks about the Quantified Self: “that data about or from your body, usually gathered by gadgets, will lay bare and inspire you to improve your body-temple-wonderland.” He mentions that as time passes, gadgets not only get smaller, but also closer to—and possibly inside—the body. With the data we get, we can crunch the data and learn interesting things about ourselves. According to Mike, this is what Whitney Erin Boesel uses to differentiate the ideas of “quantified self” in lower case—having and knowing the data–and “Quantified Self” with title case—knowing and using the data. “Practitioners of the latter don’t just self track. They interrogate the experiences, methods, and meaning of their self tracking practices…”

One interesting thing to think about: what IS the population doing with their data?  First, I can talk about this from a personal standpoint. I have two main devices that put me within the Quantified Self spectrum: I have a Nike+ fuel band that tracks motion and a sleep cycle app on my phone that tracks my sleep (side note, I’m experimenting a bit with different apps in the latter to see what kind of information I can get). If we wanted to put me on a continuum for quantified self, I would be unequivocally within the movement (knowledge the movement itself assumed to be a non-issue), but nearer to the “quantified self” end than to the “Quantified Self” pole.

QS spectrum

That’s because, while I have this information, I’m not actually using it to do anything. I’m actually content with just the knowledge. Maybe I’d realize that I need to walk a little more tomorrow, or sleep earlier, but I’m still not doing much with all this data I have. Now, I realize that my team’s project has moved away from self tracking per se, but I still feel that this is interesting to talk about for patients and for what we know about patients tracking their data. Being part of the Quantified Self movement takes a LOT of energy (and the motivation accompanying it). I—and Mike as well—have a sense that people who track healthcare information tend to be part of the quantified self movement because of the effort required to be in the other camp. This isn’t a new idea; I’ve talked about it before. Having people put in effort is hard, it is a barrier to access and for patients, and it is a steep hill on the way to becoming more engaged in healthcare. It should be interesting to do a bit more research and learn if self-tracking itself leads to better outcomes, or if the engagement of the self-tracking has that effect.

Another related issue Mike mentioned was about data, “The objectivity of the information upon which they crunch is only just a shade of such….the transition from data to information is not a net 0 process.” He goes on to mention that the data doesn’t necessarily represent reality: “…the existence of a datum has been independent of consideration of any corresponding ontological truth.” This is more of an issue for our group, but it is one we have already considered and are working on a solution. Essentially, patients can give information, but we have no way of verifying its veracity until they are seen by an actual person (and even then, subjective, qualitative experiences like pain still elude external scrutiny), nor can we be sure that correct data represents that which we want to represent. For example, if a patient used our app that we proposed and with it mentioned that they are feeling pain and there is some discoloration of the knee, the patient’s relevant healthcare professionals—a doctor and/or nurses—would be told that there is some potentially severe problem like an infection. Yet the data could show the same symbols if the patient, say, got a tan and bumped it a few minutes prior.

He concludes by noting that the mass produced consumer products that we buy to track health data are often not to emphasize effectiveness in using the consumer’s own data, but rather to compare and compete with other people or with some “fitness ideal” that holds a standard towards which one should be working, because body competition is the focus of a lot of things in our world. Yet, they both allow us to learn more about ourselves, and thus act more effectively in the world.

Wearing a White Coat and Carrying an ipad

I recently had a conversation with my friend who is a first year medical student and I made a comment about his new iPad. He began to tell me that his medical school requires that every new student purchase an iPad, a policy that is becoming a norm at medical schools around the nation. While most hospitals don’t allow electronic medical records to be viewed on an iPad, there are many useful mobile applications for medical students or doctors to use when they are making rounds or studying. Here are three that are especially popular or newly created:

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source: techvibes.com

  • Epocrates- Probably the most popular and well-known app used by medical professionals. It allows medical professionals to look up most drugs, and view the correct dosage amounts for children and adults. It also allows shows side effects and harmful interactions with other drugs. It has been used to replace the physician’s desk reference book.
  • Touch Surgery- This is a relatively new app designed to help surgeons in training to learn the steps of an operation. It was created to help make up for the hours of surgical residents being cut, which means less time in the operating room practicing needed skills. The app is also designed to improve patient safety and to give medical students and surgical residents a boost of confidence before trying the procedure on a patient. 
  • Up To Date- This app has an abundance of reference information that physicians can look up when trying to make a treatment decision. It is often used to look up innovative treatment approaches that physicians report have been successful in the past, when normal treatment options aren’t working.

These new apps, especially Epocrates and Up To Date, have the potential to make medical training less about memorizing thousands of pieces information and instead place a larger emphasis on understanding. Instead of essentially having medical training turn physician’s into walking computers, physicians now have the ability to carry around unlimited information with them on a tablet.

The increasing use of mobile apps is inevitable in the future of medical care, so the question becomes to what extent should physicians rely on these applications. A trusting patient-physician relationship often stems from the belief that our doctor has much more knowledge about our condition then us, but perhaps this view is becoming outdated. As information is readily available online, it is reasonable to assume that a patient could be more informed about their condition then their doctor. Medical training needs to change to accommodate this shifting relationship, with a greater emphasis on understanding a patient’s needs and trying to incorporate them into a treatment plan. It needs to not only teach physicians information, but also how to find needed information. However, we must stay wary of becoming too dependent on these applications, and not focus our time looking at a screen instead of the patient.

Workarounds

Stanford Medicine’s MedX Live is a phenomenal venue for public dialogue on healthcare innovation. Recently, MedX Live invited IDEO Health and Wellness Director Dennis Boyle to discuss design thinking in medicine. The talk (video here) is worth viewing in its entirety; Boyle brings a seasoned experience and a forward-thinking vision that offer exceptional insight for aspiring health innovators.

What resonated most strongly, for me, was Boyle’s advice to the Stanford students in attendance: pay attention to workarounds as opportunities for impactful design. In many ways, this mindset captures perfectly what we’re doing in the Medical Media Arts Lab: observing workflows, identifying opportunities, and developing human centered solutions.

Workarounds are a fantastic concept for design thinking in healthcare, because anyone who’s ever stepped into a hospital knows too well how much happens at the margins of the clinical workflow.

In the Cardiovascular ICU, workarounds happen every day. Before rounds, fellows record the salient features of a patient’s electronic record onto scraps of paper. They use these notes to present patients and make annotations, then go back to the EMR to make edits and document a plan of care after rounds. We realized that this two-hour digital-analog-digital exercise could be avoided if EMRs were re-designed to align with clinical needs. We realized that if we could design a platform for streamlining, analyzing, and relaying clinical data, we could make technology that worked for physicians, and not against them.

Thus, I present a challenge for every physician, administrator, designer, and patient. Ask yourself the following questions:

  1. What are of workarounds I encounter in my daily routines?
  2. How does the ‘standard’ design fail to encompass my needs?
  3. If functional constraintscost, culture, time, technical expertisewere no object, what would I do differently? What goals would I achieve?
  4. What would have to happen to bring those ideas to light?

Of course, these are uphill challenges. It’s easier to default to the status quo, because “it’s what we’ve always done.” It’s easier to constrain ourselves with “Why not?” than to explore opportunities with “Why?” But if we think critically about our surroundings, if we question our assumptions, and if we take resolute actions towards a creative destruction of the clinical environment, we can transform healthcare and put patients and providers back in control.

*Note: To view the presentation, skip ahead to the 12:05 mark.

Doximity for Patients: A secure environment for patient communication

I have had an idea for a while, but I’m still not sure whether it is something that people need, desire, or would find beneficial. So I’ve decided I’m going to publicly share it on this forum, and see what kind of feedback I can get.

Throughout the semester in class we’ve touched on the subject of authenticity over the internet. It can be very difficult to assess a person’s credibility and authenticity on the web. This is a problem with the internet in general, but it’s an even bigger concern in medicine where information related to health is being shared. How can I be sure this individual’s advice is credible? How do I know this isn’t some company trying to scam me, or an individual who enjoys trolling the internet? It can be hard.

Completely unrelated to that we’ve talked about the disparity between the number of individuals who own smartphones or the number who have internet access and the number of individuals who are actively engaged in their health.

But maybe these two things aren’t unrelated? I have a feeling that there is a relatively large segment of the population that might not be active because they don’t feel safe and secure with both the information they are sharing and the information they are receiving.

So that’s the problem – here’s the idea.

If you are familiar with Doximity (https://www.doximity.com/about) you know they have done an excellent job verifying the credentials of physicians and giving them a portal that they feel secure communicating in. For patients, there are online portals like PatientsLikeMe which are fairly popular, but they don’t have nearly the kind of security that a site like Doximity does.

But what if we combined the two?

Doctors are very familiar with their patients. If we create a patient centered portal that works with Doximity we could use doctors to verify the credentials of patients as true patients.

Here’s how it would work. Suppose I have diabetes; in order to gain access to the secure diabetes portal I would send my doctor the equivalent of a friend request on Facebook asking for permission to access the portal. My doctor would then verify that I am a diabetes patient, and only then would I be able to access the information and share my information over the portal.

While this may seem unnecessary or cumbersome it adds value by creating a portal where each patient knows that the individuals they are communicating with are truly patients concerned about one another, not companies and not trolls. It could also potentially provide doctors with a more secure and private place to communicate broadly with disease communities.

The technology and software for this is easy. But are there people out there that could use this? That’s the tough question. Thoughts?

Taking Heart Transplants to the Next Level…But Should We?

This is so crazy how relevant this is to our project, but I saw this news story shared on my Facebook newsfeed: Link here because I can’t embed the video for some reason.

While we’re working on telling the story of artificial hearts in the Texas Medical Center, at the same time researchers in the Texas Heart Institute right here in Houston are taking heart transplants to the next level. Bypassing even a total artificial heart transplant, they are now using stem cells to manipulate pigs’ hearts into hearts that can work in humans. In the video, you can see so far they have successfully been able to transforms the cells the pig’s heart into a mold of a human heart and the next step is to insert cells inside the heart so that it will properly perform the pumping functions. It was crazy how the reporter was able to hold this modified heart (still white from being grown by stem cells) and squeeze it like it was a toy.

However, the meat of the piece started when the reporter started questioning Dr. Doris Taylor, the head researcher, on the ethical implications of conducting this stem cell research. I was surprised at how quickly Dr. Taylor defended her work, probably because this was a commonly asked and attacked question. Instead of thinking about the lives that may be lost by using stem cells, she reasoned that because she had the ability and the tools able to save lives, even if those tools were stem cells, it would be “morally wrong not to go forward using those tools”.

I noticed in this video how they utilized emotional (ethos) and moral (pathos) appeal to convince the viewer to support the stem cell research. The beginning of the news piece features a young woman who, suffering from a terminal heart disease, waited and eventually received a traditional heart transplant from a dying man. I was kind of confused at first because I thought the news piece was going to be more of this young woman’s story but instead turned into a news story about stem cell research. However, they brought her back at the end of the piece and asked her if she would support someone getting a heart made out of stem cells, and with tears in her eyes, the patient talked about how lucky she was to get a heart and how if it was possible in any way for others in need to get the same she was all for it. Now, I do have my own opinions about whether it’s morally right to conduct stem cell research and I won’t be sharing it here, but to me it was an obvious storytelling tactic to get viewers to sympathize and support stem cell research.

The concept of ethical conduct in research and treatment has been an ongoing issue for the physician. Dr. Akers faced similar concerns and backlash when he performed testing of artificial hearts on animals and in society today the hot topic is the consequences of using stem cells. I am not a medical student, but I have heard that when a student first enters medical school they must recite the Hippocratic Oath that states they will vow to take care of the patient as best they can and do no harm to them. But for the physician (and the government), is the best way possible a solution that involves stem cells and should stem cell research be considered unfairly taking a life from another to save someone else? Or is it indeed is morally wrong not to use whatever means possible to save a person’s life?

The Power of Storytelling

Millais_Boyhood_of_Raleigh

Source: Wikipedia

In Medical Media Arts Lab, we have been encouraged over and over again to consolidate our research and design through the use of stories; so far we have produced storyboards for the problem as a whole and written multiple narratives from the perspective of our problem stakeholders. Before these exercises, I could not clearly see the benefits of storytelling, but I am now very aware of their effectiveness. Witnessing the power of storytelling, I began to cogitate on why they are so potent; With this blog post I’d like to explore some perspectives on the power of representing problems in the form of stories.

The IDEO Human-Centered Design Toolkit directly addresses and prescribes storytelling. Specifically, it recommends storytelling in the step right before materials/solutions are produced. One reason for the use of storytelling is that it the stories give real, human-centered ideas and solutions that are synthesized from research and thought:

“Telling stories is about transforming the stories we heard during research into data and information that we can use to inspire opportunities, ideas and solutions. Stories are framed around real people and their lives, not summaries of information.”

The other reason why they are proponents for this type of storytelling, is that they help solutions designers think in terms of specific events, rather than in general summaries:

“Stories are useful because they are accounts of specific events, not general statements. They provide us with concrete details that help us imagine solutions to particular problems.”

Another interesting perspective is that storytelling is fundamental to being human, and is necessary for human survival. Personally, I can see the motivation for this strain of thought; for me, stories grab my attention, foster empathy, and are easy to process cognitively. For instance, today I attended some presentations from electrical engineering researchers who were describing their ongoing research. It was no surprise to me that the presentations about an ongoing problem that were framed as stories were engaging and had me quite interested, while the other ones that framed the problem via a bland description of the problem had me feeling drowsy. It is the format of a story that somehow makes the problem come to life in a way that feels natural and is captivating.

Whatever the reason for storytelling, I am grateful to have had experiences this semester that have reinforced its strengths. It has helped me already in my classes, and will undoubtedly aid me in the future for problem solving and communication.

 

Principles of Design (abridged)

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Good UI design is KEY

Last time, I discussed why design considerations are fairly important. Now, I want to discuss some of the actual principles in design. Today, I want to discuss some Human-Computer Interaction principles in general, as they are of more general use to everybody. I also want to note the principles involved specifically with mobile apps and mobile health apps, but to remain brief, I will stick to one topic at a time. Honestly, I could probably write pages on this subject: It is important, I began a class on it some time ago, and there is enough material to teach entire courses on the topic (see:  1  and 2 , at Rice.)

Most general design principle information actually comes from psychological principles dealing with perception, attention, and memory. We use these higher level functions to interact in the world and with our devices, so they must take them into account. In An Introduction to Human Factors Engineering, as pulled from Wikipedia, Christopher Wickens et al. defined 13 principles of display design, which can be readily used in mobile app design as well as in designing other things, as they mostly deal with the higher level cognitive abilities I just mentioned.  They can divided into a few subgroups, of which I shall talk about instead of the actual principles, because that would take too long. If you’re interested though, take a look at the above link.

Perceptual Principles

These principles revolve around the idea that, as people, we can only perceive reality in certain ways, and design needs to accommodate for that. The size of the display we have is limited (iPhone or Android or other smartphone screens), and they must be readable to the majority of the patients, many of whom are old and are losing eyesight. Alternatively, we can remove as much text as possible and use symbolic stand-ins and videos. One of the principles, redundancy gain, is rather useful, as it suggests that by presenting a signal more than once, even in different physical forms, the client will understand it better.

Mental Model Principles

We have past experience with the way the world is organized, so going into an app or other resource, we have some idea about how they are supposed to work. This is one of the large reasons why testing a project with a designed interface with a small sample size is good: the developers are likely to be tech-savvy, and if their population does not have the same expertise, ideas that seem simple to the devs will be difficult for the users.

I'm using twice, but its so relevant!

I’m using twice, but its so relevant!

Principles Based on Attention

A display will have the client divide their attention into multiple areas. The distance between areas should be minimized to reduce the small but certainly present cognitive load that results from the distance between elements in a display. Using multiple resources to present information helps here too.

Memory Principles

Generally, we want to reduce the amount of memory clients have to spend trying to make an application function. We can do that by “piggybacking” on their existing knowledge (as I mentioned earlier), by predicting actions for them (e.g. pulling up a list of what exercises they will need to do that day), and by being consistent across displays.

The Face-up side is not immediately obvious. Not good design, at least to us

The Face-up side is not immediately obvious. Not good design, at least to us

The design strategies themselves, of course go much deeper than that, but as Wickens et al. proved, one could write an entire book on the matter. These considerations, however, will certainly be useful in app design.

A Vital Change

Google recently announced a project in which they plan to develop contact lenses that measure a person’s blood glucose level. The project is very much in the early stages of development but it indicates the potential for furthering involvement of technology in healthcare. It is imperative that the healthcare industry supports technological innovations such as this that will improve patient care. Technology must be viewed in the same way as medication in how beneficial it can be to global health.

Google describes the project as a potential game changer for diabetes treatment. The function of the contact lens is to measure glucose levels in tears, thereby making it easier for diabetes patients to determine their blood glucose level. At the moment, a patient must draw his or her blood which can be a difficult and painful process. What ends up happening is that patients fail to regularly check their blood as often as they should and develop further complications as a result. How the data from the lens is made known to the patient is not currently established. Some have suggested a series of blinking lights in the lens that notify the wearer when it is time to take insulin. Another approach is to somehow transmit the data to the user’s smartphone where it is displayed in an application and stored on a secure Google server. In the latter solution it would also be possible to send this stored information to the patient’s physician, providing them with updates on the patient’s progress and insulin usage. A cutting-edge solution to treat diabetes more effectively is vital considering it is one of the fastest growing diseases in the world.

 

In this modern age of technology and rapid development of new and exciting products that better quality of life the healthcare industry must be more open and supportive of innovation in patient care. Not to say that it is currently averse to the prospect but there exists a lot of red tape and inefficiencies that slow progress. The industry must be willing to adapt as quickly as the rest of the economy in order to realize vital improvements that will help patients today. The laggard mentality and outdated ideals prevalent in the healthcare system must adapt to the current culture of innovation and ubiquitous use of high-tech devices. This will ensure projects such as the Google contact lenses become tangible products.

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