A European Patient Advocate Speaks Out
(Editor’s Note: Christine Bienvenu is on the Board of Trustees of our sister organization in Switzerland, the Patient Empowerment Foundation)
In hindsight, I can honestly say that my ePatient advocacy started in 2008, when my eldest son was diagnosed with Asperger’s Syndrome. With Switzerland rather behind (at the time) in its knowledge about – and treatment of – Asperger’s, I could only find information and communities online that was based in North America. With absolutely nothing like it available here in Switzerland, I decided to create an online platform; today, we are some 300 members who care, share, and support. Our son is thriving in the mainstream schooling system, thanks to our advocating, as parents, for him.
In 2010, my world imploded when four words were uttered: “Triple-Negative breast cancer” (TNBC). Within a year, I’d had 6 rounds of aggressive chemo and a double mastectomy. As for my son, I became my own advocate in TNBC, reading, researching, and asking questions, connecting online with breast cancer patient communities in North America.
There was nothing like it here in French-speaking Switzerland. Health Care Social Media (HCSM)? Unheard of. Patients as partners? Nope. Online patient communities? Way too virtual. While indeed outstanding, the Swiss healthcare system today is highly paternalistic.
So there I was, trying to come to terms with my triple-negative diagnosis, with no local online community to connect with, yet wanting to be able to make empowered, well-informed decisions, and desperately hungry for support from patient peers and access to quality content.
Social Media and Online Community Expert
Time and treatments marched on. With it, my passion and interest in digital health, HCSM, and patient empowerment grew exponentially – so much so that I became a certified Social Media and Online Community Expert. My thesis involved creating a social media ecosystem with multiple channels (blog, Facebook group & page, Twitter account & LinkedIn page) that would concentrate all breast cancer-related information for French-speaking Switzerland into one easily-accessible space, open 24/7…
A few good girlie brainstorming sessions later, “Seinplement Romande(s)” was born. For those who don’t speak French, “sein” means “breast”. “Simplement” means “simply”. Melding the two, I created “Seinplement”, playing on the notion of the breast and simplicity. The word “Romand(e)s” is a nod to the French-speaking Swiss. As soon as it was launched, the platform took off. Today, members from a number of French-speaking countries are able to connect.
Two weeks before I was due to defend my thesis, I found out I had relapsed. Let my cancer get in the way of earning my diploma?? I.Think.Not. I defended my thesis. And then tackled another 15 rounds of chemo and 28 rounds of radiotherapy. The cancer was knocked into remission by year-end.
HCSM Patient Expert
During my treatments, I focused on promoting patient advocacy and empowerment through social media, connecting with the communities I had founded, meeting ePatient Dave deBronkart and volunteering to translate his “Let Patients Help!” book into French (“Impliquons les Patients”, available on Amazon), attending classes, speaking at international conferences (including the digital health conference, “Doctors 2.0 & You” in Paris in June 2014 and June 2015), and meeting with medical professionals keen on empowering today’s patient. In the meantime, I’ve been hired as Health Care Social Media (HCSM) Patient Expert by both the Geneva University hospital and the Lausanne outpatient university clinic.
On this journey, I’ve seen the importance of having an open-minded, communicative medical team. Last spring, I changed my entire medical team. Trust me: Not easy here, where respect for the “White Coat” is both deeply ingrained and rarely challenged. As hard as it was to do, that very change may have just saved my life…
Access to Clinical Trials
This past July, I yet again relapsed. This time, my new oncologist is young, dynamic, open to participative medicine and shared decision-making. She’s also a researcher. The advantage? Access to clinical trials. In fact, she had the wisdom to do a biopsy to see if my Triple Negative status had changed, and indeed it has: I am now HER2 positive.
Thanks to her discovery, I can benefit from a more targeted treatment plan – something I wouldn’t have had access to if I had still be considered a Triple Negative patient. Only Time will tell. I’ve only just begun my treatments. What I do know, though, is that I will do everything in my power to keep up with advocating for patient empowerment.