Health | Medical Futures Lab

Feb 07 2014

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.

Feb 05 2014

e-patient, Health

Reasons NOT to be an e-patient

An e-patient is a new, modern type of patient that participates more fully in his or her healthcare than patients of era past. Our society is actually so connected with the internet now that it might be impossible to escape. This, in turn, allows patients to get more information about their conditions and healthcare options than ever before. You can easily see why we use e-patient, almost like the word e-mail. However, here, the “e” happens to mean a lot of things: empowered, engaged, enabled, equipped, expert (to name a few).

Here’s a TEDx presentation by a very active guy in the epatient movement: “epatient” Dave deBronkart.

He talks about how he was diagnosed with a terminal cancer, and was able to find other patients and, subsequently, a treatment that saved his life. Being an epatient seems like a great, even obvious idea. Why wouldn’t someone want to take charge of their own health and improve possible recovery? Under the video people can freely comment, and while the comments are almost completely positive, it seems not everybody was pleased. They point of a couple reasons why being an epatient is bad.

The data is nearly inaccessible for the public because it is formatted in a consumer-unfriendly way. The raw data cannot be read on your standard operating system (due to HIPAA regulations) and will not be decoded (because it provides the software produces with a source of revenue—a subscription from the healthcare facility).
Even with that data, patients don’t know how to interpret it correctly. For example, A trend in weight loss gain could be due to eating better—like the doctor said—or to a medicine with a weight loss side effect. That same weight loss could be natural due to changes in diet (a ketogenic diet, for example, often causes a very fast initial weight drop due to loss of muscle glycogen) or abnormal due to some other problem (cancer, poor reaction to a drug).
They also don’t have the information to act on it correctly. For example, many patients don’t know much about antibiotics. They don’t work on viral infections, and bacteria can grow immunity to it, which is why taking a full course of antibiotics is important.
Where the patient gets that information is also important. Informative sites like Wikipedia or even WebMD often have some errors (mostly of omission), while forums may have advice from other people who don’t know what they’re talking about.
Finally, it’s hard!

“So Obi,” you may ask, “you told me e-patients are great! Why are you now telling me reasons to not be an e-patient?” My response: “Read the end of the post!” I don’t mean to say that these reasons should discourage anyone from remaining or becoming an e-patient. I mean the opposite: the stronger the e-patient community is, as a whole, the better off everyone’s healthcare becomes. The effects of incorrect or omitted information are minimized passively, while the patients themselves can affect regulations preventing their access to information.

In order to get more people to become epatients, you have to first learn why they don’t want to become epatients, and then remove those fears, one way or another. By listing these fears about this new movement, we can bring the relevant issues up to the public eye, and hopefully solve them.

-Obi

May 24 2013

Art, Design, Education, Health, Humanities, Story

Angelina Jolie: Teaching Medicine through Literature

Guest post by Olivia Banner

I’ve been thinking a lot about Angelina Jolie’s New York Times op-ed (“My Medical Choice”) because I include a section on breast cancer when I teach Literature and Medicine for pre-med students. In her piece, Jolie reveals that she underwent a double mastectomy after testing for the BRCA1 gene; she had reconstruction and implants too.

In my class, we read poet Audre Lorde’s Cancer Journals: she too underwent a double mastectomy but had no follow-up surgeries, and she criticizes the assumption that every woman will immediately want reconstructive work and implants. Lorde recounts a visit by a health care worker, who assumed Lorde would want implants and who encouraged Lorde – for the sake of her emotional heatlh – to get them. Lorde refuses the treatment, and she is very clear that within that encouragement lurks a culture that values women according to their desirability, and that assumes a woman’s emotional health will be influenced by how well she fits into cultural norms for appearance. Lorde’s story often surprises my students: many of them too assume all post-mastectomy women must want implants.

It is especially interesting to hear students respond to the health care worker’s visit, as they come to terms with what this scene reveals: many medical professionals have internalized this way of valuing women, and such encouragement reinforces cultural expectations for bodies, without actually addressing real health concerns (such as the high rate of complications after reconstruction and implant surgeries).

Many people called Jolie’s revelation brave: for some people there was bravery in undergoing the arduous surgeries themselves; for other people, it was brave of a woman whose career depends partly on her breasts to reveal that she’d had them removed. Yet perhaps the even braver choice would have been, like Lorde, to refuse reconstructive surgery and implants. To what extent, I wonder, did Jolie’s physicians encourage her this decision? This may seem a silly question — again, after all, her career has been built on her physical attributes. But it’s an important question for women generally. (A follow-up article in the New York Times stated that in fact many women feel pressured by physicians to get larger implants.

One of the issues I ask students to examine throughout our Literature and Medicine course is whether certain assumptions that we’re socialized into — assumptions regarding norms of appearance and behavior — might make it hard for them, once they’re physicians, to see the alternatives to standard treatments that patients might wish to pursue.

We examine how people make art out of their post-mastectomy bodies, through chest tattooing and other visual works, so that students can consider other ways to conceive what makes a body beautiful. What else should we be looking at?

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