Patricia Anderson (@pfanderson) and I started discussing an idea of organizing hashtags for cancer care about two weeks ago. I wrote up an initial post for the American Society of Clinical Oncology, and the positive response has been remarkable. But we wanted to share with the Mayo community as well.
The idea to organize is based around the success of the #bcsm [breast cancer social media] community on Twitter, which now has developed into a real resource for support and advocacy. In addition, it has attracted physicians to participate. Wouldn't it be great if similar resources were available for other cancer patients?
To Patricia's and my surprise, since that first post there has been support from all types of stakeholders: patients, clinicians, patient organizations, professional societies, and more. Patricia has a great explanation beyond my initial idea. And we're not close to having "the answer". But maybe the time is right for hashtag evolution to be embedded with meaning in a different way than before.
We're calling it the health tag ontology project. A tag ontology is a structured system, more 'top-down' than 'bottom-up'. While the conventional wisdom would suggest the latter works better in social media, for certain areas where there is a hunger for reliable content, support, and resources a top-down approach that's responsive and collaborative might work.
In my opinion, this kind of system might work best if it is patient-centered, disease-specific and open source for flexible development. If there's a way we can use hashtags to attract clinicians to get online and interact with each other and with patients, it's worth a try. But we want to listen first before proposing anything definitive.
What do you think? We'd love to hear your ideas here.
Tags: Patient Involvement