Ars Electronica – one of the foremost centers for art and technology – honored PatientsLikeMe at their annual festival with the Award of Distinction. The Prix Ars Electronica is one of the most prestigious prizes in the fields of media, technology, animation, and interactive art.
This year, there were a record number of submissions with 4,056 overall. More than 220 online communities were competing in the newest category: Digital Communities. Previous winners in this category include Wikipedia, Free Software Foundation and Akshaya.net.
While PatientsLikeMe has been honored and cited for its innovation in the area of health and medical research, we were thrilled to be recognized directly for our social and artistic value. Central to PatientsLikeMe, and what drew many of us to work here, is our commitment to empower individual patients to become informed, engaged participants in both their own healthcare and in the creation of new scientific knowledge. This prize attests to our contribution in this area.
At PatientsLikeMe, as an inter-disciplinary team of researchers, designers, and engineers, we are building a platform for patients to both share and use health data. Our goal is help patients leverage their own experiences to make good decisions and improve outcomes. As a research scientist here, it is exciting to see how our carefully designed tools engage patients to record, reason with and apply data to inform all types of medical decisions.
So, it was a particular honor for me to be able to travel on behalf of PatientsLikeMe to Ars Electronica in Linz, Austria to accept this award focused on the social and creative value of the online communities for patients. I presented PatientsLikeMe to an international audience and the audio is available as a podcast on their site. Relationships with these new audiences and the resulting discussions help us continue to improve tools for patients to share and leverage data to improve outcomes.
Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online. The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper – “Social Uses of Personal Health Information Within PatientsLikeMe.”
This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health. In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments. What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0” can potentially deliver to the healthcare consumer, and patients are using it. It’s very powerful for others to see how patients are talking with one another about treatment and symptoms experiences (supported by data in their profiles) to achieve better living. This is exactly what can happen when we put “Patients First,” and give them a community to support the right interaction at the right time. Our patient members today feel empowered to take back their health, and this kind of commitment will lead to better research, better healthcare and better quality of life.
- Filed Under: Research
- Tags: data-sharing, health, health 2.0, health data, jeana frost, JMIR, medicine 2.0, mike massagli, patients, PatientsLikeMe, Research, social network, symptoms, treatments