Communication | Medical Futures Lab

Feb 11 2014

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.

Feb 07 2014

Communication, Health, Story, Technology

Team Mara

She loved bowling, softball, and fishing. She worked at a local bank. “I got this” was her motto. But 21-year old Mara Krysiak of Superior, Wisconsin, was born with hypertrophic cardiomyopathy, a “genetic mutation in which the heart muscle becomes abnormally thick” and battled for her life each day as she got older and was unable to participate in sports or daily activities.

She had her first heart transplant on Nov. 24, 2012. But almost a full year after her transplant, Mara’s new heart failed. That’s when her doctors turned to the SynCardia Total Artificial Heart implant. According to the company’s website, it’s intended to sustain life until a suitable donor heart is available. She became the second person to receive an artificial heart implant at Children’s Hospital of Wisconsin in Milwaukee on Nov. 11. However, a few months later, she developed a blood infection that led to complications and excessive fluid buildup in her lungs. On January 13, 2014, Mara passed away.

But what is amazing the is incredible support Mara and her family have received not just from her local community, but the 939 members of her Facebook group “Team Mara” throughout Mara’s time in treatment. Over the years, family members and friends filled the page with photos, videos, and photos of Mara living life and remaining smiling and radiant despite her condition. The group was also a platform to encourage its members to become organ donors and spread awareness about heart disease. Yet, the most touching are the messages from the significant amount of members who have never even met her.

“Thanks for educating me on being a registered donor instead of just checking it on my drivers license. Received my certificate today!!! I never met Mara, but WOW what love there is for her. She was very important to a friend of mine and that is how I became part of Team Mara.”

Scroll down the page and from her passing you will not only find messages of condolence but you will also see dozens of photos people uploaded of their certificate of organ donation registration in memory of Mara. Her life ended prematurely but her story will save many lives through the gift of organ donation from Mara’s supporters.

This is just another example of how social and collaborative media can make an impact and even inspire change in ways that traditional health media have been less effective. It also demonstrates the power of a story, in this case, a real-life story that was unfolding as time went on. Many of the people who joined this Facebook group probably have never met Mara in their lives but who were changed by following Mara’s life over the past few years. For Mara’s family, they hope this kind of publicity will inspire their followers to not just be passive, but to take action by donating to support research and becoming registered organ donors for the future of others who need a healthy heart.

How can we use inspirations like “Team Mara” to educate, impact, and encourage media consumers to take a more active role about health issues?

Feb 05 2014

Communication, Design, Health, Medicine, Technology

We Define the Medium

If you’ve ever been poked on Facebook and wondered what it meant, this essay from Slate raises some interesting insights.

Over the years, the “poke” has taken on varied meanings in diverse contexts: a hello between acquaintances, a romantic gesture from an admirer, a discreet signal in the collegiate hookup scene. And, as Wickman writes, that’s exactly as Facebook intended it:

“When we created the poke, we thought it would be cool to have a feature without any specific purpose,” Facebook said. “People interpret the poke in many different ways, and we encourage you to come up with your own meanings.”

But this is about more than teenage culture and social trends; it’s a powerful reminder that, in the Digital Age, we are the true architects of the online platforms we inhabit.

Social media platforms give us the ability to write on others’ walls, to share messages in 140-character installments, to send ephemeral photographs. But we’re the ones who decide what those social interactions mean. We’re the ones who give life to the medium, establish a vision for it, and really define its purpose.

Twitter users, for one, are witness to this social evolution. What started out as a stream of consciousness and a minute-to-minute narration of our lived experiences has now become a digital hub for creation, curation, and conversation. Now, every academic conference and grand rounds presentation simultaneously takes place online. Formerly voiceless patients congregate online to self-advocate share their experiences. Physicians and scholars can bypass the traditional gatekeepers of content to shape the public health dialogue.

Jack, Biz, and co. didn’t do that. We did. And that means the opportunity—and challenge—to create channels for meaningful health dialogue is on us.

In recent weeks, as “Medical Media Arts Lab” has examined Stuart Hall’s Encoding-Decoding, we’ve discussed how social contexts influence the ways users decode the meanings that content creators (intend to) convey in their work. Facebook’s “poke” feature takes that a step further. When Facebook introduced a feature without an encoded meaning, it left a vacuum for users themselves to spontaneously construct that meaning. The social experiment of the titular Social Network speaks to the power we have to assemble social networks and build shared cultures. We can, and should, apply that power to digital health communication.

Today, the critical conversations about medicine and healthcare are happening not inside the walls of the clinic, but on the open frontiers of the Internet. With every new social media platform, ask, how is this an opportunity to transform medicine? How can we leverage these tools to engage patients, to connect with clinicians, to aggregate and critically evaluate information? It’s up to us to think bold and innovate big. In the 21st century, we have the power to define the medium and give it purpose, and our only barriers are our own perceptions of our limitations.

This post has been modified from the original version, available here.

Jul 12 2013

Art, Communication, Design, Education, Electronic Medical Record, Prototyping, Story

Transmedia Hackathon @ OEDK!

Earlier this week the Medical Futures Lab parachuted into Matthew Wettergreen’s class in the Oshman Engineering Design Kitchen at Rice University to run a two-day transmedia hackathon inside a summer engineering design course. Our goal: explore how the visual and narrative representation of problems shapes our ability to find solutions to those problems. Students engaged in a series of experiments using different communication and representational tools to develop their understanding of how the form of representation for a problem shapes the way we analyze and solve that problem. By exploring with different tools, students saw different dimensions of their problems, which included doctor-patient communication about a variety of complex subjects, including risks & benefits of genome sequencing, end-of-life conversations, and talking about socially uncomfortable topics.

Peter Killoran started things off with a narrative medicine + EMR re-design warm-up exercise, routed through two classics: IOM’s To Err is Human (1999) and Edward Tufte’s Visual Display of Quantitative Information (1992). We spent a lot of time talking about the role of storytelling in design, and then these incredible students went about prototyping (in about 90 minutes) consumer-facing EHRs that could also be useful to clinicians. The beauty of the non-expert approach was definitely on display, as these young creatives weren’t hampered by all the restrictive protocol (HIPPA, can you hear me?) and instead could concentrate on the core message: get the patient’s story into the EMR.

Later in the day, Allison Hunter ran the group through some eye-opening visual arts exercises in flow-charts and mood-boards. The next morning, I launched the group into a session on doing things with words. We did exercises on metaphor, simile, and analogy, both textual and visual. We also worked on point-of-view as a critical dimension of design. After a final session on storyboarding with Allison, students were tasked with a problem to solve using a set of tools (written, visual, moving image, audio), and at the end of the hackathon they presented their experience of experimenting and identifying which tool best helped them develop a solution to the problem.

This was a laboratory designed to generate ideas and strategy for the Medical Media Arts Hub, and my big take-homes included affirmation (again) that collaboration across difference is truly critical to engineering design, to medical problem-solving, and to tackling the wicked problems of the world; that art+engineering+storytelling is the answer to many problems; and that listening to future users’ needs is everything. Mind-expanding experience, and fun to boot. Next time, we’re taking it public, so stay tuned – we’ll be seeking local “wicked problems” to tackle soon!

Medical Futures Lab

Category Archives: Communication

Looking into ePatient Outlets: CrowdMed

Leading Patients into the Unknown

Team Mara

We Define the Medium

Transmedia Hackathon @ OEDK!

Follow Medical Futures Lab