How do I sum up the HIMSS tornado I lived for three days with my new advocate friends? It is quite difficult, but it’s time that I did it!
Almost four years ago, I decided to act and founded a social enterprise called l’Effet Papillon (The Butterfly Effect) in my home of France. It is dedicated to bringing a greater welfare to patients and their families. Since September 2011, we have organized 20 shows in patient hospital rooms (oncology services) and over 1,000 patients and family members received visits from musicians and storytellers. With the supportive care we provide to hospitals, charities, and socio-medical structures, 500 patients participated in individual or collective sessions.
It is incredible to see the power of this non-medical approach. Less anxiety, less feeling of social isolation, less consumption of antidepressants, and fewer relapses. This idea was born after being a caregiver for 18 months and after being very shocked by the social isolation of patients and family.
After being in contact with Regina Holliday for three years thanks to social media, I became a proud member of The Walking Gallery when she painted my jacket, “Butterflies.” When she suggested I apply for the patient advocate scholarship she created with HIStalk to attend at HIMSS15 in Chicago, I was surprise because I thought I was too small. I applied, thinking I had nothing to lose and that maybe I could be one of the lucky, happy, few patient advocates.
A few weeks after, I learned that I was one of the five winners. When I discovered the four other winners, I was very honored to be a part of this incredible team of rocking ladies. I also noticed that I was the only non-American patient advocate. Me, little social entrepreneur from France who struggled to provide supportive care and greater wellness to people, I’ll attend this huge event. I was thrilled!
For my trip to Chicago, friends and family wanted to be part of this journey, and in a way, they were with me. A friend of mine, Geraldine, took time to help me with the English version of the website. She also coached me for presenting my project. Another friend, Richard, helped me with the English version of the website of l’Effet Papillon. My friend Sonia lent me a beautiful couture dress of her atelier GLM fashion.
I arrived a few days before because I wanted to acclimate myself to the time zone, to the city, and to the language. I was a little bit worried to take part to this event and not to be able to speak like I did in French. HIStalk and Lorre organized everything very well before my arrival. Thanks to FormFast, I had the chance to stay in a very lovely and nice hotel during the event. Sunday evening I met Lorre for the very first time for real at Maggiano’s Little Italy at the HIStalk sponsor event and we met very nice people from Health Catalyst attending HIMSS as vendors.
I arrived at McCormick Place on Monday with the shuttle. Even though I heard it was a big event, I was impressed by the crowd. I searched for the HIStalk booth with a great excitation to meet Regina, Lorre, Jennifer, Amanda, Tami, and Carly. I was searching a lot because HIMSS is so big. Even in the biggest stadium when I went to see my favorite rock bands, I never felt so lost!
Finally, after a little time, I found the HIStalk booth and Regina. She was painting the jacket of Gabriela Wilson, a very nice person who I will meet the day after. Meeting Regina in real life is like meeting someone you waited for a long time. Quickly after this very happy moment, I met Carly, Tami, and Amanda and the team of patient advocates that was there. Sadly at the last minute Kim Witczak, our fifth winner of the scholarship, couldn’t come because of her job.
Monday was the first day of meeting in real with all my Walking Gallery friends and I passed all my day with them. I wanted to take the time to know them, to share our experiences, and to be with them, so I didn’t see a lot of vendors. The Walking Gallery of Healthcare members are so inspiring! You can’t imagine how wonderful and shining they are!
Regina organized a gathering of the members and I met E-Patient Dave for the very first time. I was so happy! It’s thanks to a talk of Dave that I discovered him and Regina. I had the feeling to meet one of my favorite rock stars! And Dave is so nice! He gave me a badge for the Society for Participatory Medicine and proposed me to be a member of this society because they need of the participation of patients to move forward with the care and the treatments of patients. I would love to have the same kind of organization here in France.
Monday night was the HIStalkapalooza event, a VIP event that is the place to be during HIMSS. As a fan of music, I was delighted to go to the House of Blues and share this lovely moment of music and happiness with my friends. For this special occasion, I wore my French couture dress and everyone loved it! I even receive the “Mr. H’S Secret Crush” sash. I think I succeeded to make a good representation of my friend’s work and talent!
Tuesday, we went to visit vendors with Tami. They welcomed us well and I think they were a little surprised to discover patient advocates. Finally, they all told us it was a great idea to have patient advocates in this event. I’m deeply convinced that everyone will take advantage asking patients their needs. How can we imagine being efficient toward the users of the healthcare system while ignoring them?
Unfortunately, I didn’t have the time and the chance to meet the cancer centers who were at HIMSS and I came through a lot of trouble with the WiFi. If some of them read this post, I’ll be happy to have a talk with them on Skype!
Tuesday afternoon was the CGT live interview and I was a little scared about it. As you know, English isn’t my mother tongue. I make a lot of mistakes and it’s very frustrating to not be able to express your thoughts like you can in your native language (French for me). With the help of the two kind interviewers and the support of Tami, I came through safe. I tried to give the voice and the needs of the people who aren’t heard, who are voiceless — the patients. I hope the message is understood and empathized by many.
After the interview, we had another gathering with the walkers. I had the privilege of meeting Kym and Ross Martin, two lovely people who know very well how important support and the well-being are both for patient and caregiver. Kym is a three-time cancer survivor and she is as shiny as the sun. Ross loves music and he founded The American College of Medical Informatimusicology and Ross named me fellow for France! I’m very proud to be part of it when you know how important music in my life and in my work is. That’s how l’Effet Papillon began, with music and the meeting of the French singer Benabar.
When you’re a lucky patient advocate invited thanks to HIStalk patient scholarship, you are invited to very nice events and a lot of people want to talk and share your thoughts about patient’s needs with you. Tuesday evening, we had two events where we were invited. The first was the Speakeasy party organized by Medicity. The second was the social media healthcare leaders in Gino’s. It was very nice and Tami won a Chromebook!
I began Thursday with a session about physician tools for patient engagement and it was very interesting. I learnt that 72 percent of Internet users look online for health information within the past year (2012 survey) and research indicates informed patients are more likely to comply with physician-recommended treatment, more willing to take an active role in their own health, less likely to make unnecessary health visits such as to emergency room, and more likely to have better health outcomes. About the topic patient-centered vs. patient engagement, they told us that patient-centered care is about the actions of the physician and other care providers and patient engagement is about the action of the patient regarding their own care. I have the dream that all physicians share the same goal and so the healthcare system!
Little after, I did a demo of Bliss in a Starbucks for Tami.
After that I had a nice meeting with Bewatec. This company offers multimedia communication solutions for hospitals. I thought it could be interesting for them to see Bliss, the social network of l’Effet Papillon I imagined and designed to answer to the social isolation of sick people. I have to keep in touch with them because we did not have a tablet version for the moment.
Because of the awful WiFi, I heard very late about Carly and the fact that she was in the emergency room of a Chicago hospital. She did so much for the patient advocacy during the event that her body stopped her with a huge migraine. With my daily headaches and the huge migraines I have quite often, I understand very well this kind of problem. When you give a lot and you don’t rest enough, your body stops you. And Carly, as a chronic patient with Crohn’s disease, knows that much more than me.
On the afternoon, I met Medfusion and they did a demo of their portal of portals for me. I’m not used to applications like that and I was surprised to find it quite easy and user friendly. They told me they asked for patients’ thoughts and needs when they were creating their app. The solution manager gave me an invitation code to download the app and try it, but unfortunately it’s not supported by my HTC One mini 2 so I am unable to review it.
At the end of the day, we had the last gathering of The Walking Gallery.
Thanks to HIStalk for this scholarship opportunity at HIMSS, I lived one the very best moments of my life. It was one the most incredible experiences I have had since the beginning of l’Effet Papillon. I met amazing and lovely people, people who inspire the change, people who dare, people who try and a lot of DOERS! With Amanda, Tami, Carly, Regina, Lorre, and Kim (you were there in our thoughts), I found incredible new friends.
I have never been so well received and listened to. In 2011, when people asked me, “Why do you want to create something which doesn’t exist? If a structure dedicated to bring a greater welfare for sick people doesn’t exist, it is because it’s not possible,” at that time, I discovered those crazy people like me are called social entrepreneurs. In 2015, thanks to HIStalk and Regina Holliday, I discovered that I was a patient advocate and a change maker.
One day, I’ll hope to bring wellness and happiness in the US too and I think Bliss could be a lovely way. I met so nice people there! The butterfly wants to fly and bring bliss actions everywhere.
I hope I will have the chance to live again those kind of moments and to attend to other events like that with patient advocates. Don’t forget about Carly’s challenge for HIMSS16: bring at least one patient to each booth!
Again, a huge thanks to Regina Holliday with The Walking Gallery of Healthcare and HIStalk who allowed me to be part of this journey.