About samisophia

I was diagnosed with ulcerative colitis at 14. I was a 2012-13 Scholar for the Patient Advisory Council (PAC) for ImproveCareNow and 2013-15 Co-Chair of the PAC. I have since graduated from college with a major in biochemistry and minor in medical humanities. I am now a first-year medical student.

How to walk a mile.

Early in my medical school experience, a classmate and I discovered we had both been navigating the wild waters of med school with our own separate but similar chronic diseases, silently, without realizing the other was paddling and advocating for change right alongside us. You really never outgrow of the need for mentorship and support; one of the many myths of the pediatric-adult care transition.

We teamed up, connected with another classmate with experience and skill of her own, and founded the Disability Awareness Association to raise awareness and advocate for ourselves, our colleagues, and our future patients with disabilities. We asked ourselves a question: How can we spark discussion in our medical education about life with a disability beyond what our textbooks say?


You go, Kid President!

The response from our student body has been inspiring – and after a few events where students shared stories of their own or loved ones’ experiences of illness, we started to ask a new question: How can we move beyond narrative to help each other imagine experiences beyond our own?

Whereas sympathy involves pity and sorrow for someone else’s “misfortune” (and there is another time and place for it), empathy involves the ability to understand and imagine the feelings of another. Empathy is essential to medical education and to empowering students to create care in real partnership with those who live experiences different from our own. I have had opportunities to build empathy because I was welcomed into the diverse community of patient advocacy in care improvement. My classmates deserve and need the same opportunity, if projects like ICN are to scale and spread in the future.

We dove in head-first, but hesitated when we found data that suggested sympathy, rather than empathy, could result from empathy exercises. Certainly, our goal in hosting an empathy-building workshop would be to instill feelings of respect for our friends, neighbors, colleagues, and future patients in our fellow students. As a person living with IBD, I shudder to think of sharing my experience to an audience response of, “Wow, that sucks!”

With this in mind, my two fearless co-organizers and I felt confident we could find a way to bring empathy exercises into our education in a way that would not only work, but also leave a lasting positive impact.


Though she be but little, she is fierce!

Thanks to the magic of patients and clinicians connecting as colleagues on social media, I was introduced to Walk A Mile Cards: Empathy Exercises for People Who Care.* Empathy Cards were inspired by the card game, “Cards Against Humanity” and developed/prototyped by the T1D, CF, and Kidney Transplant communities in teams comprised of patients, caregivers, physicians, and QI consultants.

Each Empathy Card describes a situation we are asked to imagine, and then asks us how we would feel and/or respond. For some Empathy Cards, behavioral modifications or small activities, but never sympathy, are asked of us.

To quote from the cards’ guidebook:

The purpose of using the empathy cards is to increase the level of understanding and empathy for those who live with this disease/condition. With a more acute understanding of the situations that arise as a result of this condition and the amount of burden experienced by those who live with the condition, designers and clinicians will make more informed decisions as they identify, prioritize and implement the interventions at the care center and system level.

A couple weeks ago, ten students joined together with open minds and hearts to imagine a new normal. We only had five Empathy Cards and twenty minutes, but in that twenty minutes, we questioned how we will act as doctors in situations that challenge our empathy, challenged our preconceptions, and shared personal experiences related to the Empathy Card prompts. It was a vibrant session, and we all walked away to our anatomy lesson wanting more and having internalized the idea that the lives of our patients are (a) worth imagining, (b) worth asking about, and (c) as valuable and as complex as our own if in different ways. Ideally, we will host future events that incorporate both patient and student/clinician facilitators, but we found in our small trial that co-designed Empathy Cards can successfully promote empathy even when used in a relatively homogenous group.


Despite decks only existing for three communities right now, the prompts on the cards are often applicable more universally. This card led to a discussion about power dynamics in medicine. Who is “allowed” to talk when, and why?

If you’re interested in helping create a deck, you can submit your own ideas by visiting the FAQ page of the Walk A Mile Cards website at http://walkamilecards.com. You can also purchase decks for a small donation or download a printable deck for free there.

*This post is not sponsored in any way by Walk A Mile Cards. In fact, you can download their cards for free on their website, or, like me, purchase decks. I just really love how an innovation developed by patients and parents together is influencing my and my friends’ medical education in a powerful way!

Special thanks (in no particular order) to Sophia Thurmond, Karen Zeribi, Erin Moore, Breck Gamel, Michael Seid, George Dellal, and others who very kindly introduced me to Walk A Mile and shared their experiences with me. I am continually thankful to have not only the support of the ImproveCareNow community, but also the ability to learn from and share with those who are working to improve care for other diseases in our sister learning health networks.

What now?

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.

Sometimes it’s fear I won’t make it through. Sometimes it’s worry that my status as a patient-provider will disadvantage me because I choose to disclose it. Sometimes it’s confusion over not really knowing what that title means, or what it should mean, or what it could mean. Sometimes it’s awe that seven years have passed since I sat in a hospital bed and wondered if I could make something out of this D-thing.

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The PAC Tweets #ICNCC15s

A record seven gutsy patient advocates in ICN’s Patient Advisory Council – PAC, “pack” – attended the Community Conference. We tweeted live at #ICNCC15s all the way through – so please check out our feed!!

The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow’s work:

7 Key Drivers of Remission

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