e-patient | Medical Futures Lab

Feb 28 2014

Looking Into ePatient Outlets: PatientsLikeMe

As a continuation of my first blog post discussing CrowdMed as a possible ePatient outlet, defining the movement with a community of curious patients and a medically educated crowd base, this time I will focus on PatientsLikeMe to provide a different approach.

PatientsLikeMe is a free public website that provides a patient, clinician, or caretaker to register and provide, receive, and share health information. Users are able to input symptoms, medications, and treatments to find people undergoing similar medical situations. Communication is facilitated through both a forum type infrastructure and user comments.

Individuals are able to search the information database for not only patients with similar symptoms, but also for a wide range of medications and treatment opportunities for a particular condition. Treatments can be searched based on frequency of use amongst patients, user rating, efficiency, and side effects. In addition to medical and pharmacological solutions, users can browse through dietary, physical activity, or mindfulness treatments suitable for their personal needs.

In addition to acquiring a wide range of helpful information, the website allows people to track their health and invite others (doctors, family, friends, etc.) to their “care team” and share the status of their health. The tracking information can be easily be shared with those not on the website through an easy print format which the individual can choose to print or email to someone else.

The website automatically stores the shared health history to a database to match the user up with pertinent clinical trials or be used for research.

Different from CrowdMed, this ePatient outlet is geared towards personalizing one’s involvement in sharing and receiving health information. The website is structured so that all information provided by other users is easy to understand even with low health literacy.

PatientsLikeMe is very attractive in that everything from health tracking to research can all be done under one website. With the ease of having access to variety of resources in one spot, the site is able to lower some effort barriers that may restrain patients from transitioning into ePatients.

This ePatient outlet definitely highlights the empowered definition of the entire ePatient movement, giving the individual full control over their involvement in how their personal health information gets used and how they themselves act to provide for others within the virtual community. Involved users are not only free to educate themselves with healthcare options that can easily be discussed with a physician, they are, in addition, given the chance to take their health into their own hands with clinical trials and nonmedical treatments such as wellness exercises and stress management.

If CrowdMed is a helpful resource for finding answers under the ideology of “power in number”, PatientsLikeMe is the example of self-driven medicine with an interface chosen by the user’s preferences. This is a great illustration of patient empowerment, as patient empowerment is not only choosing what to be involved in, but choosing the threshold of involvement as well.

Feb 17 2014

Culture, e-patient, Education, Health, Medicine, Technology

5 Lessons from the Quantified Self Movement

When it comes to health, we often go through the motions, blissfully unaware of ourselves. We imagine that we cannot manage our health; when we get sick, it’s not our fault. We complain that our friends gave us the virus and that our classmates are the vectors of disease. Rarely do we accept the responsibility of sickness. That would be a display of weakness, and we don’t have the time to address our health. Just give us a pill, so that we can get back to work. We have school, we have jobs.

Hopefully, that passage elicited some cringes. Its message is not foreign, and unfortunately, we tend to extrapolate our American grab-and-go philosophy to health. We believe that we are far too busy to appreciate our health, and we only begin to pay attention to health when we are already sick. Wouldn’t it make more sense to nurture health while we are healthy? Why wait until it is too late?

Photo Credit: funnyjunk.com

The Quantified Self Movement (QSM) has its roots in health and wellness improvement. The idea is to promote self-knowledge through self-tracking. As Mark Moschel eloquently states, we are “taking control of something conventional wisdom has told us is not ours to understand.” We can effectively incorporate technology into our daily lives to track what is important to us. With the inception of mobile health technologies, health measurements are becoming readily available at all times.

Today, we have devices that make the Fitbit and Nike+ seem archaic. With the Cardiio iPhone application, we can detect heart rate and respiratory motion through an iPhone camera. By using Eulerian video magnification developed by MIT, these unattached sensors have accuracies comparable to hospital-grade monitors. Apple also recently patented a new model of their iconic earphones that can detect blood oxygenation levels, heart rate, and body temperature, while you casually listen to music.

Photo Credit: cardiio.tumblr.com

Given these available technologies used by the members of the Quantified Self Movement, we learn several lessons:

1) It is possible to be engaged. If Cardiio can detect your heart rate while you are holding your phone in front of you, you are hardly deviating from your typical daily behavior.

2) Make time for your health. It’s truly fascinating that health is treated so nonchalantly, as if we have more than one life and can suddenly resurrect ourselves from preventable illnesses and death.

3) If it is possible to track health while healthy, it is certainly possible to track health while sick. Arguably, unhealthy patients have a greater incentive to track their health because they want to get better.

4) If self-tracking devices can take measurements automatically, there is no excuse of being too busy. You are going through the motions of everyday life while these recordings are happening.

5) These communities are vibrant and alive. You won’t be alone, and you can become engaged before you become a patient. We can even imagine QSM members as healthy patients practicing preventative medicine.

So join us. There are meetups around the globe, and registration is just a click away. You can even join us here in Houston. See you there!

Feb 15 2014

Design, e-patient

You think this is a game?

I probably play too many video games. What can I say? They’re fun! Game developers try to make their games more fun (and get more money) by employing a range of psychological techniques that not many people are very aware of. Even early arcade-style games tried to keep kids playing and paying with public leaderboards and unforgiving mechanics. What I mean to show with these examples is that game developers are really good at shaping people’s behaviors.

But let’s talk about healthcare for a moment. Our class just finished with a critique of our projects, and all the groups had really great ideas. I talked with Fred Trotter (@fredtrotter) afterwards, and he mentioned to me that what my group—as well as most of the other groups—is trying to do at its core is to change someone’s behavior.

That’s where the game design ideas came in. Actually, a couple groups already had the idea to try to heal patients by making some sort of game. They were trying to gamify healthcare.

Gamification. There’s a buzzword if I’ve ever seen one. Gamification means to apply game design techniques to non-games for some sort of benefit. Thus far, it seems to have been pretty successful in the fitness area with things like Nike+, Fitocracy, Runkeeper, or Zombies, Run! Unfortunately, this Gamification phenomenon is really new—according to Google Trends, it just popped up around mid to late 2010. As a result, there isn’t a lot of information about how it can be used best in the medical field.

Yes, you include the exclamation.

So what would it take to gamify healthcare? Seems like you could just add a few badges for keeping your blood glucose low or something, right? Well, turns out it’s a lot more complicated than that. People have tried to gamify many things and failed because of inadequate design practices. Enterprise Gamification consultancy is a great resource to learn more about what works and doesn’t, but there seem to be a couple useful tricks and tips.

The general idea is that people tend to have a desire for competition, achievement, and altruism, all of which can be used to drive action. These desires are not mutually exclusive: projects like Foldit have crowdsourced problems by having players compete with each other to earn a high score while simultaneously helping solve protein tertiary structures for research. Other games have RPG-style experience curves, allowing a player to enjoy an initial, gratifying “level-up,” which later takes more time but still holds the promise of some reward. Some use a “variable ratio” reward schedule in giving some sort of reward after a random amount of trials (which sometimes results in addict-like behaviors, read: gambling).

My point in all this is that gamification, while it can be great for changing behaviors, can be hard to do without some knowledge of psychology and sociology. That said, I don’t see it going away any time soon. Quite the opposite; once people know how to use these techniques to their advantage more frequently and in the context of healthcare, I’m sure we will be seeing a more gamified—and healthier—country in no time.

Now if you’ll excuse me, I’ve got to get back to killing marsh rats on my Orc Warrior.

Tagged gamification, gamify, healthcare, patients

Feb 11 2014

1 Comment

Communication, e-patient, Health, Medicine, Technology

Looking into ePatient Outlets: CrowdMed

The ePatient movement promotes individuals become active participators in their overall health and wellbeing. In light of the debate on how to define ePatients, I probed into CrowdMed to see how it approached the concept.

From the very front page of the website, CrowdMed presents its purpose as to solicit the “wisdom of the crowd” to ultimately help solve medical cases. Once registered, the user may decide to post cases, provide answers to cases, or the combination of the two.

To post cases, the user can go through a step-by-step process to provide a variety of information including symptoms, demographics, personal medical history, family medical history, lifestyle, and any other diagnostic or imaging test attachments pertinent to the case.

To make the case more appealing for the pool of users, the uploader is given the option of attaching a cash prize to the case. Once the case has reached a quota of possible diagnoses, the user is notified, and they are able to take this information to their doctors to choose the best solution. The case owner is then required to award that solution provider the monetary prize.

For those who are looking to diagnose rather than provide cases, one is able to search through the cases by keywords or basic sort. The interface also provides a chat function in which the “medical detectives” can communicate with the case presenter for a more open discussion.

From what I have gathered thus far, the ‘e’ for ePatients carries meaning from electronic to engaged to empowered and more depending on the individual user.

CrowdMed absolutely fits the electronic definition, as it allows for easy sharing of medical imaging and lab results via the Internet; however, the engaged and empowered may be more descriptive of the users already equipped with medical education.

The website certainly allows patients to share their case with the public to explore other possible diagnoses, but the case becomes much more meaningful if you already have a background working as a health care provider. Even the most medically literate patients may have difficulty interpreting such information provided.

CrowdMed may not fit into the open forum type ePatient community that I had imagined when first research; however, the site may have opened another interpretation to the ePatient movement. ePatient as not only the web savvy, but the educated.

By patients being able to share and receive feedback from other healthcare providers, the patient is able to bring in information that may assist or even education their personal physician about new possibilities. This may create more cohesion within the physician-patient interaction and thus bring in the patient as a greater stakeholder in his treatment decisions.

For subsequent posts, I would personally like to continue exploring other ePatient outlets. Next, I will specifically focus on PatientsLikeMe to not only give a comparison, but also provide further insight into the interpretations of ‘e’.

CrowdMed (www.crowdmed.com)

Disclosure: I initially got the idea for looking into the website after talking with a friend who works for the company. All the functions discussed in the post was information I obtained after browsing through the website as both an unregistered and registered user. Permission was obtained to publish this post.

Feb 07 2014

1 Comment

Communication, e-patient, Education, Health, Medicine

Leading Patients into the Unknown

The most glaring impediment to scientific progress in medicine is patient enrollment in clinical trials. Adult enrollment is worryingly low and demands an impactful solution. While the current situation of patient involvement in clinical trials is dire, my team is hopeful the solution exists in remedying communication and awareness issues. Undoubtedly, both of which can be aided through the use of burgeoning social media technologies.

When I lay everything out like I just did this problem seems to have an easy solution. Not so. While one can determine that the origin of this issue stems from patient communication with doctors and awareness of clinical trials, one must fully understand why this issue has persisted and no effective solution has yet been implemented. At the end of the day, it is up to the patients to forgo standard of care and take a leap into something they know very little about.

Like any reasonable human being, the patients are reluctant to try something unknown to them. No one wants to be a guinea pig for a clinical trial they know nothing about. What my team will attempt to create is a more transparent and immersive patient experience to increase their involvement in the healing process. Eventually this will accomplish our goal of markedly increasing enrollment in clinical trials.

We already know from research conducted by the Pew Center that patients with chronic conditions are more likely to be online, exploring further treatment options and commentary. From this data it is evident that our target patients are already eager to explore any possible solution. By utilizing a medium of which patients are already well aware we can more effectively educate and familiarize them with the clinical trial process, making the unknown known.

In order to further decode the reasons why a patient should consider clinical trials as a treatment option, it is imperative that we increase collaboration. Increasing patient involvement by providing them the framework to organize and discover clinical trials themselves will surely make them more knowledgeable and possibly be able to incorporate others like them into the process. This sort of self-sufficient growth is the ultimate prize in increasing the awareness of any unfamiliar subject. For us awareness means participation and participation means success.

Medical Futures Lab

Category Archives: e-patient

Looking Into ePatient Outlets: PatientsLikeMe

5 Lessons from the Quantified Self Movement

You think this is a game?

Looking into ePatient Outlets: CrowdMed

Leading Patients into the Unknown

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