Christine Bienvenu and I have known each other for several years. Our respective involvement in patient engagement and healthcare social media has always provided fulfilling moments of collaboration. We both serve currently on the board of the Geneva-based Patient Empowerment Foundation, was founded by Andrew Schorr and we’ll both be in Malta for eHealthWeek. So, it was a great pleasure for us to catch up through this interview.
Denise Silber: Christine Bienvenu, tell us how you got started in healthcare social media.
CB: I was always geeky. Before social media had begun, I was using forums for my hobbies fifteen years ago. Then in 2008, when I was looking for a diagnosis for my son, I started reading online about his condition, and saw how helpful it was to do so. Two years later in 2010, I was using the web in regard to my own diagnosis.
DS: And the information you found online led you to create your own content.
CB: Yes, whether for my son’s diagnosis or for myself, I wanted to create a platform like the one I wished I had been able to use. When you get a diagnosis that is life changing, and you have to realign your whole life, it is daunting. You do not know where to start and I found no source of practical, localized information. We need, for example, to know about insurance, about the laws, about local associations. So I decided to create a digital place where someone living in French-speaking Switzerland can find everything they need, for the two diagnoses with which I had to deal. For the Asperger community, I created a Facebook and a Twitter presence. For Seinplement Romande, I created both a website and a social media presence.
DS: What similarities and differences have you observed in the two communities?
CB: Both communities are active in sharing in private Facebook groups. But Aspi Romandie is more active. Families get very involved when there is a child with Asperger. And also, in Switzerland, cancer is still too stigmatizing. So people leave the community when in remission. And the moderator has to be more involved and do the sharing.
DS: And after creating these communities, you went on to establish new professional activities in healthcare social media.
CB: Yes, I was “discovered” on Twitter by Franck Schneider from the Geneva University Hospitals (HUG). He suggested I apply to speak at Doctors 2.0 & You. At the time, I did not even know that opportunities existed to come and speak about my experience. I was a nervous wreck for my first talk, as you recall, and now I really enjoy giving talks.
DS: Yes, you were the first ePatient who had approached us at Doctors 2.0 & You, from Switzerland, and now you are also teaching healthcare social media to others.
CB: Yes, as people saw my online presence and heard about my talks, I was asked to participate in different new projects. The Swiss hospitals needed someone to teach healthcare social media classes to healthcare professionals in university settings in Switzerland. I did this in Geneva and Lausanne for three institutions, HUG, CHUV, and the PMU. I also hope that we will create classes for patients in the near future.
DS: I know you are looking forward to speaking at eHealth Week in Malta.
CB: Yes, it is an incredible opportunity to come to this event, which is new for me. I will be speaking about “Working with and not for patients.” Professional and patient need to meet in the middle in a constructive relationship. Patients should learn how to be ready as a patient, to take advantage of a consultation and professionals should provide an environment that respects the patient’s time as well.
Thanks Christine. We are all looking forward to hearing more in Malta!