Conversations that matter

This year I was fortunate enough to be asked to moderate a panel at Stanford Medicine X. The panel was called “Ah-Ha! moments in mental health and chronic disease management,” and I used the moment to shine a light on the similarities between patient communities regardless of age and diagnosis. The room for our panel was packed, and had standing room only. Each of the panelists – Mark Freeman, Danielle Edges, Ally Ferlito, and Sarah Kucharski – nailed their responses to questions and so clearly articulated the importance of mental health both in their own lives and in the lives of others within their patient communities.

standing-room

We saved time for a few questions at the end, and Christopher Snider pulled one from the live Twitter audience who was tuning in. We also had a physician remind the room how there is simply a lack of training related to patient mental health. His reminder didn’t present as an attack on the panel, but rather as words of empathy and a pleading apology to panelists after hearing how systems have failed and continue to fail some of them. As a follow up to his statement, I reminded everyone in the room how there were several Student Leadership Program attendees present for this session. Hopefully these students – future pharmacists, physicians, and researchers, took away a better understanding of the patient experience. Those attending the conference within the Student Leadership Program (SLP) blossomed, many receiving offers for funding their venture ideas, connecting with physicians for mentorship, and successfully networking amongst other guests. As an SLP Advisor, I felt like a proud parent! It was an honor to help coordinate the SLP program, and to improve upon accessibility efforts. It’s exciting to know that I was one of the youngest people there with very few undergraduate students, yet still tasked with the responsibility and respected for expertise, whether that be as a patient or student. And to think that two years ago I was apprehensive about applying to the program. This just shows that age, degrees, and professional qualifications cannot be substituted for life experience.

Just like last year, I met more people than I can count. But, out of everyone, Elizabeth Jameson stood out as the clear frontrunner as the person who I was supposed to meet. She was a part of the ePatient program as well, and I was immediately drawn to her. Liz was too. elizabethI think that we all had an instant connection. I found one of Elizabeth’s cards on the ground, and can swear that I have come across her artwork somewhere else before. While my admiration of her work certainly opened up the conversation, I believe that we were meant to meet for other reasons. You can see some of her pieces here. Elizabeth specializes in the intersection of art and science, and has secondary progressive Multiple Sclerosis. She and her artist assistant Catherine Monahon have created some incredible pieces over the years, all of which center around her own brain scans, similar to the ones that I have created in the past. I think that Elizabeth’s artwork speaks to the power of the patient voice, and also the reclaiming of one’s condition in a world so focused on fixing and medicating upon diagnosis. Her work is featured in permanent art collections at places like the National Institutes of Health, Stanford University, Yale University, and the Center for Brain Science at Harvard University, and I can only hope that one day we can collaborate on a piece of artwork together.

Friends and conversations had at 2015’s conference have translated into opportunities for 2016-2017, too. I’ll post that update later this month.

Disclosure: This post is one of several as a part of the Stanford Medicine X ePatient Scholar Program – Engagement Track, for which I receive financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

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MedX Phoenix Pop Up

It happened. The first ever Stanford Medicine X Phoenix Pop Up took place on April 16th, 2016. SHOW TIME graphic!We were lucky enough to have Executive Board Member Gilles Frydman travel to join us and deliver the opening remarks, as well as document all that took place through his camera lens.

While we weren’t able to share a link to the livestream due to technical difficulties, we had some recording help from ARKHumanity, and two of the talks were recorded and are linked to later in this post below.

We were fortunate enough to have incredible exhibitors from around the valley join us, each of which brought displays that attendees were able to interact with. These displays not only started conversations, but allowed for attendees to ask ourselves and each other questions prior to the evening’s talks like: What if this were me? What if this were my child? Do I need this service?Screen Shot 2016-05-03 at 12.21.35 AM

The program kicked off with Danielle Edges sharing her family’s story that answered those very questions as she told us about her daughter’s reality of navigating life with Heterotaxy Syndrome. Her words and photos shook us all to the core as she read her letter titled, “Dear Heterotaxy.”

Pat Pataranutaporn shared his reason for being a part of the ARKHumanity team, a project derived from Hack4Humanity that bridges the gap between people in crisis and mental health professionals. ARKHumanity utilizes algorithms and key word filtering to listen for suicidal messages within public data on Twitter, and triages to create an outreach interface. Prior to the creation of ARKHumanity, a call for help on social media might go unanswered. Now, that call for help will be answered and can utilize proactive outreach to prevent suicide. They recently collaborated with Arizona State University and Teen Lifeline to conduct research that yielded the findings of 2.6 million tweets that matched suicidal keywords in two weeks time. Wow.

Omron Blauo gave us insight into the work he’s doing in Ghana with Telescrypts, which seeks to bridge health access gaps in remote, low resource communities by providing healthcare workers with data storage tools that innovate their current examination system. In order to do this, Blauo and his team created a durable and long lasting wearable device that records pulse, heart rate, temperature, respirations, and oxygen saturations all of which synch to an app and secure platform on a mobile device, collecting data stored in a cloud without needing wifi. This use of telemedicine pays close attention to cultural and environmental needs, something that wearable devices related to healthcare often do not.

Richard Filley spoke on the topics of doctors, drones and disruption in healthcare. He made connections between aviation and healthcare, and brought up barriers to disruption like regulation from the FAA and the FDA – the ideas of those from outside the profession. These barriers and ideas ultimately got the audience to ask ourselves: When is healthcare’s drone going to land?

Stacey Lihn delivered the keynote and shared her experience as a mom and advocate, as well as founding and being the President of Sisters by Heart, a volunteer organization that provides support, education, and empowerment to families affected by Hypoplastic Left Heart Syndrome from initial diagnosis and beyond by connecting moms across the country. Lihn taught us how moms are literally and figuratively sitting at the table to improve patient outcomes. She also reminded us that not all care centers are created equal, and that if we want to see improvements in patient care, oftentimes we, the patients and caregivers, are the ones who need to do something to make that change. Because of Lihn’s work as the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Parent Lead, NPC-QIC Transparency Workgroup Co-Lead, and NPC-QIC Mortality Workgroup Member, Sisters by Heart is partnered with NPC-QIC to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. Lihn also serves as a Public Member of the American Board of Pediatrics Foundation, and this level of parent and caregiver engagement is not to be taken lightly.

The closing panel, which consisted of Stacey Lihn, Richard Filley, and Ram Polur had varying perspective that included the caregiver, entrepreneur, and technologist viewpoints. Asking them questions as the moderator was interesting because each of their experiences led to clear expectations for healthcare settings and interactions amongst patients and providers related to trust, respect, and communication.

My personal highlight of the night was getting to learn about the Cardiac 3D Print Lab at the Phoenix Children’s Hospital (PCH). Each heart takes between 3 hours (small) and 5 hours (big) to print. The Cardiac 3D Print Lab teams up with a group called Heart Effect for Screen Shot 2016-05-02 at 7.58.44 PMeducation and emotional support purposes with families after the models have been printed to prepare them for their upcoming surgeries. They also told me how the 3D print lab over at PCH is working with Child Life and the brain tumor patients to print replicas of their brain tumors so that the kids can work through their emotions during treatment. Some kids throw their tumors off of the hospital roof, others smash it with a hammer, and some, similar to our MedX friend Steven Keating, keep theirs!

As soon as the event was over attendees started asking when the next pop up was taking place, if it was going to become an annual event, etc. This event would not have been possible without the help of Danielle on the ground, and the MedX team in Palo Alto. I knew that it was possible to bring a taste of MedX to local communities through having watched livestreams of previous MedX pop ups, but now I have a whole new appreciation for the work that goes into it. If you enjoyed this pop up, you haven’t seen anything yet. Nothing can truly prepare you for the conference itself. For those of you who had your first MedX exposure through this event..I know you want more. See you in September!

Even More MedX Access

Whenever I would hear or think about the Stanford Medicine X conference over the past couple of years, I would imagine the MedX piano music playing, the announcer saying my name, and me walking on stage. It was my “dream big” goal. Well, it just happened in real life.

21098991513_f5a4530e7c_o (2)As I took the stage, everything that I had envisioned over the past several years fell into place. I got to address hundreds of healthcare’s most impactful individuals, and spread a message that three years ago I could have never imagined I would give, and said words that I never would have imagined saying publically. My friends, being the cheerleaders that they are, hosted a viewing party on campus.

A spectacular video of me filmed this summer played right before I took the stage, and I couldn’t be happier with how it turned out.

Taking the stage was one of those moments that I will never forget. The lights hit, and I just started talking. I had a message to share, and I did it. I used to be the kid in class who started crying in front of everyone whenever I had to give a presentation, regardless of the topic. I once cried through a presentation of a poem about bunnies. I had to take a summer speech class for school in order to try and get over my fear of public speaking. From the feedback shared on Twitter, the audience needed to hear what I had to say at MedX much more than that class needed to hear about a poem about bunnies.

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Talking to and meeting people that I had connected with via Twitter over the past several years at the conference itself was absolutely fantastic. I got to catch up with old friends like Alicia Staley from #BCSM Chats whom I had met a few years prior but hadn’t seen since, and meet and check out Dana Lewis‘ from #HCSM Chats artificial pancreas up close and personal. Connecting with Tom and Audun from Symplur face-to-face was great as well, because their efforts have been instrumental in the upkeep of #BTSM Chats, and all Tweetchats, really, over the past couple of years. Most importantly, Liz and I were able to reunite for some #BTSM bonding, which is something that we rarely get to do. The other ePatients in attendance were all incredible, and each story was more awe-inspiring than the next. Never have I ever heard caregivers advocate so hard on behalf of their children than at this conference, and never have I been around so many other people with chronic illnesses like me, but at the same time who are still so different. Each ePatient was so well versed in their conditions, and I’ve never seen that in an entire a group of people before. Every single one of us knew how to fiercely advocate for ourselves, and it was fascinating to watch take place. This rarity is another breed of patients. We’re paving the way for future patients to come. The healthcare providers, researchers, and technologists who I had the privilege of speaking with exceeded my expectations of their understanding of patient-centered care, Drs. Roni Zeiger and David Rosenman in particular.

When I returned to Arizona, I had finals to prepare for. Oh right, college. I’m not one of those international scientists who was presenting at the conference too, am I? Nope. I still have a few degrees to go if I want to get on their level. Processing what had just happened was something that was going to have to wait another week or two. I came back, took my exams, and did a Tiger Woods victory dance that I had not caught the MedX bug that everyone else seems to have gotten. Then again, I am an honorary doctor after participating in the doctor-patient simulation lab, so I could have prescribed myself some antibiotics if I needed them, right?

My undergrad friends were amazed at this opportunity that I was afforded. They wanted to know how they could get involved. How might we make MedX more accessible to undergraduate college students? How might we turn a private event, something that requires funds outside of a college-student’s budget, into something that students could gain access to, in-person? What would that look like? Would it be through more pop-up events? Would it be through student-curated events on campus?

These students are highly motivated pre-med and pre-health students who, in their own words, say that attending MedX would be “the dream.” MedX was once “the dream” for me, but then it became my reality. I gained access as a patient. Sometimes having a brain tumor comes in handy, I suppose. These other students want access too, but they don’t have brain tumors, and they can’t apply to the ePatient program. Emily Kramer-Golinkoff said during a panel that many patients are literally dying while they wait for research to improve, her included. This is the reality. These students would do almost anything to be at this conference. They are energized and motivated to be a part of this conference that will hopefully be a catalyst to keep Emily alive. They want to be a part of this shift in medicine. They want to learn from patients, and they want access to this conference. They want a seat at the table. Watching online isn’t enough for these students anymore. They want to talk to the patients, and they want to talk to the rest of the speakers. Twitter can start conversations, but they say that it isn’t enough. They want to debate the ethics of research protocols, and they want to challenge how doctor-patient interactions are taking place. They want to bring up issues that they see aren’t being addressed by physicians they are interning and volunteering with, and their ideas are just as valuable as mine. Undergraduate students want to be involved, and they don’t want to have to wait until they can afford to attend the conference as future physicians. They don’t want to wait, because Cystic Fibrosis won’t wait, and because no other illness will wait, either. Some students might be under the legal drinking age, but they aren’t too young to know that they want to change healthcare. They might even be the ones to do it.

Disclosure: As a part of the Stanford Medicine X ePatient Scholar Program, I received financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

Gearing Up

In two weeks, I’ll be at Stanford University for the Health Care Innovation Summit, immediately followed by Stanford Medicine X.

My goals here are to gain as much knowledge from as many different attendees as possible. I want it all. I’ll be live tweeting throughout the entire conference in order to share what I’m learning with the rest of the online advocacy community. I’ll be especially concerned with psychosocial issues and environmental psychology between individuals and their physical settings. I want to know what physicians, researchers, and technologists have to say about patients and their medical environments, ie. the realms of control, privacy and social interaction, personal space, and comfort and safety. When I say control, I really mean the lack of control that patients have in a typical medical context. What does patient disempowerment mean, and how can we modify that experience to improve it?

What are patients and health care teams doing to combat loneliness, helplessness, and boredom in the hospital? Those are all things that I experienced during my stays in the hospital, and those are all challenges that I will work to address as a Child Life Specialist in the future. I’m curious to see how suggestions for adult patients might transfer over into the pediatric realm, because these are problems for chronic patients of all ages. I have the patient perspective, but what do physicians see as cooperative care? What do they see as the best involvement of nonmedical participants? Clearly our visions aren’t the same, or else we wouldn’t still be on different pages. So what are their ideas, and how can we turn us vs. them into a “we”?

I’ll be giving my talk about self-identity, gender, and their impact on whole-person health as part of the Medicine X core Misconceptions and Misperceptions theme at 4:10pm PST on September 25th. I encourage you all to use the hashtag #MedXgender when tweeting about my talk leading up to, during, and afterwards to keep everyone in the loop of the same conversation. My talk will be directly followed by the Misconceptions and Misperceptions panel, which will run for an hour. I am very excited to be joined by four fascinating individuals as other participants, as well as an experienced moderator. I’ve always found these panels to be interesting in the previous years that I’ve followed Med X, as they give panel participants a forum to discuss experiences, share opinions, and to collaborate in real-time in front of an audience. These panels are also where I’ve seen Twitter light up the most during sessions, inciting some of the most meaningful dialogue online, sometimes even facilitating Oprah “ah-ha” moments for those tuning in from home. And, who doesn’t love Oprah?

Stanford Medicine X 2015 ePatient Delegate – that’s me

I am proud to announce that I have been named a Stanford Medicine X 2015 ePatient Delegate! Stanford Medicine X is a patient-centered conference that explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The Medicine X community unites all healthcare stakeholders – patients, providers, researchers, and technologists – in a year-round program of online events and classes at Stanford University, culminating in an annual conference at the Stanford University School of Medicine in the Fall. I am eager to be a part of this program because I want there to be more neurological representation, specifically brain tumors and epilepsy, in this emerging healthcare conversation and arena.

Not only is this a tremendous honor, but it is also an example of how advocating for, and creating your own health community can open incredible doors. When I started blogging and tweeting about my health experiences a few years ago, I didn’t envision #BTSM (brain tumor social media) Chats. When Liz and I created #BTSM Chats 2.5 years ago, I knew it would have an impact on an individual level, at least for the two of us, and hopefully for a few others. But now, we have the opportunity to reach people on a global level more than ever before.

There are three tracks for Medicine X ePatient Scholars, each of them with their brief and respective descriptions below.

Engagement & Producer Track: Share with others knowledge gained at Medicine X, and produce original content via social media while at the conference and after.

Presenter Track: Use your patient voice to help share and spread knowledge to educate and inspire others by speaking at the conference.

Design Track: Work with a designer from IDEO to brainstorm and create a solution to a self-identified problem using the collective knowledge and creativity of a team of fellow conference attendees in one day prior to the 3 day conference.

I thought that the safest bet for me to apply to would be the Engagement & Producer Track given my history with social media. I’m on my phone and or laptop all of the time, and my job revolves around social media marketing. It would have made the most sense for me to apply to the Engagement & Producer Track. But, I decided to stretch a little. There are countless sayings about getting out of your comfort zone in order to succeed, so I did. And, the best way for Liz and I to get our ideas across about #BTSM and brain tumors in general together would be to apply to the Presenter Track, together. Unfortunately, Liz was not accepted as a scholar this time around. It is now my responsibility to bring the voices of the brain tumor community with me. I am not the ePatient Delegate, we all are. I hope to gather any type of information that I can throughout the coming year that will answer questions, create solutions, and provide opportunities for community engagement.

Public speaking used to be my biggest fear. There was a presentation I gave for an English class my freshman year of high school where I stood in the front of the room, bawled, and pressed the spacebar to move from one PowerPoint slide to the next for a solid ten minutes. There was a mandatory speech class students in my high school had to take the following year, and I dreaded it. I imagined myself crying during class, and then thrown back into the halls to head to the next class in tears. I was so scared that I found a way to take the class in the summer instead. The class was much smaller, and, the teacher was a cancer survivor. We bonded over advocacy, and I somehow made it through the entire course without crying once. I was amazed, and my friends were too. I definitely felt more comfortable sharing and speaking in her presence with the knowledge that she too had memorized the wallpaper of waiting rooms. I haven’t cried while public speaking in four or five years now, but public speaking does still make me nervous, as it does for most people. I delivered an Ignite talk at ASU last semester, and I was calm, cool, and collected throughout.

When I mentioned this incredible opportunity to my high school friends, the first text message response I received was (direct quote): “AFTER THE WHOLE FRESHMAN ENGLISH AND SUMMER SPEECH CLASS FIASCO? *cries of proud*”

I’ve come a long way since then!

I started to set “long term” goals last April. Applying to Medicine X was one of them. Up until then I was having a hard time allowing myself to think two months in advance, because I was so afraid of what the next MRI would show. Following through with this goal, and snagging an application victory, really speaks to the progress and adjustments that I’ve made. I am starting worry less about what my brain tissue is doing, and as I look into the future, I’m seeing new goals sprout up. Accepting this commitment means that I am actively shifting my lens from solely focusing on my experiences, to focusing on what my experiences means in the context of a bigger picture: the future of participatory medicine.

The Next Step

Stanford Medicine X, otherwise known as MedX, has been on my mind for almost three years now.

The conference unites patients, providers, technologists, and researchers for three jam-packed days of patient advocacy heaven. It’s my understanding that MedX in itself is actually a year-round program of online events and classes at Stanford University that culminate in an annual conference at the Stanford University School of Medicine. I made a reference to MedX last spring in a previous blog post.

I’ve followed the conference via video stream for the past two years, but never applied until this year because I didn’t think that I had the credentials to attend or present. Then, I saw another college student on stage. The student was a blogger and tweeter named Emily, aka Chronic Curve, who has several rare, autoinflammatory diseases. I immediately direct messaged her on Twitter to ask about her experience at MedX once the conference was over. There was only so much that can be discussed via 140 character messaging, and we set up a Google Hangout to talk more. We exchanged stories, and the more we talked, the more I ended up regretting not applying to MedX sooner.

The application consisted of eight, 1,000 character response questions. I may or may not have read the character count as a word count and spent a month crafting eight nearly 1,000 word responses, tried to submit them, and then was horrified to find that I was mistaken. I think that those responses, while they ended up having to be condensed and cut up into a quarter of their original size, were some of the best things I’ve ever written. I’m used to being the “sick person” doing the basic explaining to “healthy people,” and am not usually challenged by other members of health communities to elaborate further. All of that writing and mental strain sent me into a 14-hour sleep stupor to recover when it was all said and done.

There has always been massive arthritis and diabetes representation amongst patient attendees in the past, but I didn’t see any epilepsy or brain tumor representation. Thus, Liz and I applied to present about those two facets of our lives, and how our personal experiences with the two spawned #BTSM chats. We want to talk about building a platform of support and advocacy in the brain tumor community, and how to make a difference in this community where half of us will die three years after diagnosis. Attending and speaking about #BTSM, epilepsy, and brain tumors in general at this event alongside Liz feels like the next step. It just makes sense.