I have been surprised and a bit overwhelmed by the strong positive response to my recent post suggesting that hashtags be used to facilitate cancer communities online. I’m excited, but I have to question: Should we promote and develop cancer hashtags right now?
There is real potential value in creating a hashtag metadata system for patient and professional education, project and resource collaboration, research trials accrual, advocacy, and more. Further, this system could be scalable to provide people with cancer the needed support and learning beyond the usual range of influence with pamphlets and flyers. Language and Internet access will be the limits, not geography.
Based upon the strong positive feedback, both here on ASCOconnection.org and on Twitter, there is a clear hunger for something to lower the barriers so more people can participate to improve cancer care and treatment.
But my proposal is only the beginning. Patricia Anderson, at the University of Michigan, wrote an excellent post about the proper nomenclature, and I have a deeper understanding now of what I had been thinking about. Tomas Vander Wal, who created the term “folksonomy,” has also been helpful in understanding that my proposal is different.
To start, what I originally called a “folksonomy” is a “folktology,” also known in academia as a “tag ongology.” My idea is a blend of user-driven dynamic tagging with a domain ontology, which provides structured concepts around the topic of health sciences, in this case cancer. It’s more top-down—but based upon tags created by regular people—and an attempt to create an intelligible semantic system that other people can use for different health conditions.
What else don’t I know? A lot, but it’s learnable. With good collaborators, creating a tool to help cancer patients with hashtags is eminently doable. But it’s not ready for prime time.
Social media are communications tools; they can be used well or poorly. Lowering the barriers to improving cancer care would be great. But patients and health care professionals should be aware of the risks and benefits of using Twitter, Facebook, or other online platforms before extrapolating from the apparent success of #bcsm.
It may be high time to organize a system, but rather than promote a half-baked system, we need the right ingredients:
1. Principles. Social media should facilitate healing and support in cancer care rather than being seen as good unto itself.
2. Focus. The purpose of this project is to promote health and well-being, not “fight” cancer.
3. Collaborate. Assemble a multidisciplinary team to develop a draft design. We have already made good progress on this front.
4. Research. Review the existing medical literature on social media in cancer care for relevant information.
5. Design. Rather than just building a set of hashtags, I’m leaning toward some educational process to best inform people about what they’re about to use. But we will crowdsource it and see what develops.
6. Open the conversation. I’d love your comments on this post. We will also be feeling out interest from others I know online. For those on Twitter, we will use #hlthtop [health tag ontology project] so feel free to give us suggestions along the way.
What other ingredients do we need? Please tell me. It’s fine if the idea is half-baked now, but we need your help to ensure that the end result doesn’t leave a bad taste.