This “#TalkHITwithCTG” series is brought to you by our partner CTG Health Solutions (CTGHS) and the episodes were broadcast live in CTGHS’s booth at the The HIMSS15 Annual Conference and Exhibition. The interviews were recorded and will be published on a regular basis on intrepidNow Healthcare. Bookmark this page to follow along with Patient Advocates, CIOs, CEOs and other thought leaders from health systems across the country. Also, read more about why CTGHS is the trusted advisor to over 600 health systems and providers.
Melanie Peron – @HISTalk Patient Advocate Scholarship Winner
Melanie joined us to tell us why it was important to her to win the @HISTalk Scholarship, what she hoped to accomplish at #HIMSS15 and to educate us about The Butterfly Effect.
We discuss the following with Melanie on this episode:
- How her experience supporting her spouse in his battle with Leukemia inspired her to create The Butterfly Effect.
- The services provided by The Butterfly Effect
- The French Singer Bénabar wrote a song called “l’effet papillon” ( “the Butterfly effect”) in 2008. Melanie reached out to Benabar and asked him to visit her husband in the hospital, he agreed and created “the Butterfly effect” for her husband and the other patients in treatment at the time.
- Research done by The Butterfly Effect
- Why she advocates, what frustrates her the most.
About Melanie and The Butterfly Effect Melanie Peron lives Paris, France and is the founder of The Butterfly Effect. In September 2011, she decided to make a career transition and create the Butterfly Effect after her personal experience as a patient supporter for her companion. During this time she discovered the social exclusion and all the difficulties that families and patients have to face. She deeply believes that little actions can bring great consequences and that is why she chose the name, The Butterfly Effect. The idea was to bring sweet moments for patients and families and allow people to live normal moments in difficult times.The Butterfly Effect has several missions : providing supportive care (art therapy, aesthetics, relaxation therapy, writing workshop), a 3D social network application (Bliss), cultural action (shows in patients’ bedrooms) and research (evaluation of the supportive care and the quality of patients lives).
CTGHS was inspired to create a special “series” of interviews on Patient Advocacy including ePatient Dave, Regina Holliday and the HISTalk Patient Advocate Scholarship winners (funded by CTGHS). We learned so much from them, were inspired by them, and look forward to supporting each of them in their advocacy going forward.
- Dave deBronkart – @ePatientDave – The Original Patient Advocate
- Regina Holliday – @ReginaHolliday – Founding Artist, #TheWalkingGallery
- Amanda Greene – @LALupusLady – @HISTalk Patient Advocate Scholarship Winner
- Carly Medosch – @CarlyRM – @HISTalk Patient Advocate Scholarship Winner
- Melanie Peron – @leffet_papillon – @HISTalk Patient Advocate Scholarship Winner
- Tami Rich – @BostonHeartMom – @HISTalk Patient Advocate Scholarship Winner
You’re listening to Intrepid Healthcare’s exclusive coverage of the HIMSS Annual Conference and Exhibition. Welcome to HIMSS 15 direct from Chicago. Our coverage is brought to you by CTG Health Solutions. Your trusted advisor for healthcare IT advisory, and consulting services. And now, here are your hosts, Joe Lavelle and Rayanne Thorne.
Joe: Welcome to this special episode of Intrepid Healthcare. Live from the HIMSS 15 Exhibition floor in Chicago. I’m your host Joe Lavelle, and I’m really excited to bring you Talk HIT with CTG with my friend and co-host, Rayanne Thorne from our remote studio right here in the CTG Health Solutions booth. Rayanne, let’s give a quick shout-out to CTG Health Solutions.
Rayanne: Sure thing Joe. It’s been a pleasure for us to be here at HIMSS 15, partnering with CTG Health Solutions. They have such a great reputation with contributing and giving back to their clients. But guess what, they are also a great employer and they have been recently recognized by Modern Healthcare as a great place to work, both in 2013 and 2014. To learn more about how you can work at CTG, please go to CTG.com/careers.
Joe: We’re going to get right to it today. Today we’re joined by Melanie Peron and Tami Rich. They are two of the five HIS Talk Patient Advocate Scholarship winners sponsored by, non-other than our friends at CTG. Melanie, Tami, welcome to the show.
Tami: Thank you.
Rayanne: Thank you for being here.
Joe: Good deal, we’ll start with Tami, why don’t you tell us, for the audience, a little bit about your background and how you became a patient advocate.
Tami: I got my start in the past, in my childhood and youth, with my grandparents. Caring for them and even working in nursing homes and so forth. But when my son was born in 1993 he was diagnosed, when he was three days old, with complex heart defects. So that started us on a journey that has been a very long one, and has had ups and downs. But on a very positive note, he’s now a senior in college about to graduate, doing very, very well.
And I quite working for about ten years to care for him when he was at his sickest, and be his full-time case manager at the bedside.
Rayanne: Wow, that’s a life mission right there, mother and patient advocate.
Joe: Talk about super user in the healthcare.
Rayanne: That’s right. Very aware, very much aware.
Joe: Melanie tell us about your background and how you became a patient advocate.
Melanie: In 2007 my long-partnership was diagnosed from leukemia. At this time I was a librarian. And for 18 months, I supported in the hospital during all of his treatments, chemotherapy, radiation therapy, and bone marrow transplant. And after that I became a patient advocate after his death.
Rayanne: I’m so sorry about your loss. But it’s a contribution to patient advocacy to have you carry on, maybe a little bit of his legacy by deciding to be a voice for patients. So how did you make that decision? What was it that drove you to say, “I can help. I can make a different.”
Melanie: During all the 18 months of supporting him, I was very shocked by the social isolation of patients and families. And I didn’t find organizations, things to help patients and families, as well as allowed to. So it became as a reaction because I was so angry and depressed from his death. And I decided to help other patients and families. And now it became an action, and we do a lot of cool stuff to families and patients.
Joe: Tell us about some of that cool stuff.
Melanie: For example, we provide supportive care like writing workshops, music therapy, health therapy, social aspects. And we created a social network called Bliss for providing communication and escape for patients who are in the sterile rooms, very isolated. We also organize shows to the hospital, and musicians enter into the patient bedrooms.
Joe: What’s the name of the program that you creates?
Melanie: l’effet papillon, the Butterfly Effect in English.
Rayanne: The Butterfly Effect, I love that. So if anybody doesn’t know what the butterfly effect, it’s an idea, a theory, that the flap of a butterfly’s wing one side of the world can have impact on the other side of the world. It’s kind of chaos theory that we have impact on everything. One little movement can have impact on the whole world.
Melanie: That’s the point. And this story, in March 2009, my husband was very, very sick and a little depressed. And it was very awful for me and all of the family. So I decided to organize a surprise for him. And I contacted a very famous singer in France who had a show near the hospital. And I asked him to visit us. I didn’t believe for one moment that it was possible to come visit us, and he came. He came, and the singer is Bénabar, and he has a song, which is l’effet papillon. And when he came to the hospital with one musician, he brought the butterfly effect.
And all the patients were looking at me, I was very elated. And everyone was talking about this amazing surprise and this amazing man coming. And no one talked anymore about their illness and the side effects. But just talked about his visit. And it was very new at the moment because there are no surprises for others with cancer. There is for children, but not for adults. So it was very, very nice. And all the healthcare teams were very happy because they may think about other things. And it brings non-medical communication.
Rayanne: That’s wonderful. What a wonderful butterfly effect right, from the visit. So how do you want to carry forward this mission? What are you doing to make sure that that message continues on? That you see a good thing coming from changing some of the communication patterns that happen in hospitals, that happen with patients, in particular those who are facing maybe some very tragic…
Melanie: It’s a battle every day, seriously. Because we have a magical healthcare system in France, but I think a lot of people didn’t realize all the difficulties that patients and families have to face. Because they feel very lonely, they feel like they don’t exist, and they feel only like a file number and not like a human being. And this is my struggle, to consider them like human beings and to bring them nice things and sweet moments to escape from the disease and to have some projects.
And we also do research because we want to asset the benefits bringing from the patients. And we just finished a pilot study in January. We studied 14 women during six months. And we brought them social aesthetics, relaxation therapy, and the social network, which is called Bliss. And each week, during six months, they had individual sessions and we assessed the quality of life of patients, and their healthcare concerns. Because I studied a lot of papers about this supportive care, and patients with this accompaniment have less anxiety, of less relapse, and they have less consumption of anti-depressants. And the turnaround of the healthcare teams are lower. And the results are still compelling, but the patients told us, “Thank you a lot for this accompaniment because we felt lonely. We can have non-medical communication with healthcare teams and our families. And we can talk about other things. And we laughed a lot during this period.”
And now those ladies are in remission, and a month ago, I organized a surprise for them and we went to a show for this French singer. And I met him six years later, and six year earlier I was a supporter, I was with my husband. And six years after, to have met her again with those patients, with sparling eyes, we were very happy to share a fabulous moment. And it was just awesome because those things are moving forward. And there’s a lot of things to do because it’s quite difficult to do what I do, because we need help from the healthcare systems, from the physicians. Because they have to promote this from the charities also. And it’s quite important to have the support of famous people. And to be helped with funds too because other stuff cost and we want to work with people who are paid for their work because they are professionals.
So it’s quite difficult, but little but little, things are moving forward.
Rayanne: Great work.
Joe: Melanie, do you have plans to expand the Butterfly Effect geography wise?
Melanie: I’ve got a lot of plans.
Joe: That’s great.
Melanie: And I’ve got a lot of ideas. And one of my goals is to bring several…Butterfly Effect in Paris, Butterfly Effect here.
Rayanne: Yeah so groups, charters, regions.
Melanie: The Butterfly Effect in the US would be just awesome because with our social network, you can have homepages in French and in English. And it works like texting, except you can talk, like in Skype. And this is unique world, you are a butterfly and you can find and meet your friends in this world and escape for a while. So I’d love to put Bliss in the US portals.
Rayanne: That would be wonderful. You live in France. And you came for this event?
Rayanne: So tell us about that process. Applying for the scholarship, and coming to be a part of HIMSS 15.
Melanie: It’s just amazing. For me it’s just a dream. I follow and I talk with Regina Holliday for three years now. I discovered her thanks to a conference and to ePatient Dave. And I discovered The Walking Gallery. So I became a member of The Walking Gallery and she decided to organize partnerships. And she told me, “Melanie, it will be nice that you apply.” And I told her, “I’m too small. I’m from France. English is not my mother tongue. I don’t think it will be possible.” She said to me, “Yes, try.”
So I tried, I applied with all my heart and energy. And here I am, for me it’s like just a dream.
Rayanne: Well we’re certainly happy you did. Thank you so much for coming and sharing your message. What frustrates you the most? What do you want to do that you haven’t been able to do?
Melanie: I want to hire people to help me. Because I’m alone and I work with freelancers. But the charges are very expensive in France. So I cannot afford to hire people. So I need maybe philanthropist, investor, people who will help me. And in France, what I’m doing is like pioneer.
All the people say, “Okay it’s awesome. But it’s difficult.” And they don’t want to push the boundaries. Because it’s tough, and the lobbyist of the pharmaceutical labs are very, very strong. And they don’t want me to change things.
Rayanne: No they like the way things are. They do.
Melanie: So I think I need support from famous people, I need funding, and that’s all.
Joe: Well you’ve got a good start with ePatient Dave and Regina.
Rayanne: Yes, yes you do.
Melanie: Yeah I think.
Rayanne: And with the singer in France that’s probably helping raise awareness as well.
Melanie: Yeah, and I’d love to have the support of Muse, the band, because Bliss is inspired by the Muse song. And I’ve been trying to reach them for five years now. Because I want them to do music for my work. And I’ve been invited twice to their concert. But I never met them. And I’d love to meet Angelina Jolie also. Because she does a lot of crazy things from raising cancer awareness.
Rayanne: Yes she does.
Melanie: I think I need international people to help me.
Joe: Aim high.
Rayanne: Yeah, always aim high, always. Never underestimate the power of the word. The power of social, the power of friendship. The power of using a community. And I know that we asked Tami to sit in just in case there was some kind of communication problem, but you’ve done very well.
Melanie: Thank you.
Rayanne: Tami I want to ask you, is there anything that Melanie didn’t get across that you think that you could help deliver her message a little bit more here?
Tami: I just think that to listen to her talk, I was smiling the whole time because it’s so magical to hear, I mean, it’s sad from a sad beginning, she’s sort of like the embodiment of the butterfly effect. She’s having a magical effect here. People keep walking up to her and seeing her painting on her jacket and talking to her. She is delightful and charming. And I feel like I have a sister friend, but we want to keep her here. We want to support the growth of l’effet papillon.
Melanie: And it’s magic to me. Brothers and sisters of patient community. I feel not lonely here with The Walking Gallery members and all the very kind people I’ve met, seriously. I don’t have the same welcome in France. I’m not such heard in France as I am here. And it seems so crazy.
Joe: The systems a little harder to fight it sounds like.
Melanie: It’s just very political in France.
Rayanne: And I see, in your face, a great deal of emotion. Why is that?
Melanie: Because it’s a struggle and I’m very determined to help others. And I feel anger because things are not moving forward as fast as I would like to. And because I see patients every day, and they feel so lonely in their voices. And this, it’s just unbearable for me.
Rayanne: Well you’re giving voice to so many. And you’re doing the right thing. You’re getting the word out, you’re engaging in a community that will help. We certainly will be part of that message, sharing that message. Giving the patient that doesn’t have the voice, a voice. So as you finish your time here at the HIMSS conference, is there anything else that you want to achieve, or see, or do?
Melanie: I’d love to meet people from Larry’s Cancer and <unclear>, the two centers who care about patients with cancer here. Because I looked after their program, and it’s magical for me because they use meditation, they use non-medical stuff, and I’d love to meet them.
Rayanne: That’s great, well hopefully that will happen while you’re here. If folks that are listening want to follow, want to participate, want to be a part of this, be a part of The Butterfly Effect, how can they find you?
Melanie: On Facebook L’effett Papillon and Twitter @Leffet_Papillon. And our website, www.LeffetPapillon.net and we did an English version of the website.
Tami: And can I add that the Twitter site, in English is Leffet_Papillon.
Rayanne: Thank you Tami. Thank you very much. Well it’s been a pleasure to have you.
Joe: Absolute pleasure.
Rayanne: Thank you for joining us on Talk HIT with CTG.
Melanie: Thank you a lot for inviting me.
Joe: All right, that wraps this live broadcast from HIMSS. Again we want a quick thanks to our sponsor CTG Health Solutions Rayanne.
Rayanne: The experience, expertise, and dedication of the people at CTG, it’s unbelievable. Just the fact that they have been a part of the scholarship to bring these folks here. To bring Melanie from France. We’re proud to be a partner to CTG.
Joe: We absolutely are. And on behalf of our guest, Melanie Peron, and my co-host, Rayanne Throne, I’m Joe Lavelle, and Intrepid Health live coverage from Chicago will be right back.
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