Hashtags for Twitter Cancer Communities

Top ten hashtags associated with #cancer

Librarians have been geeking out, or grossing out, over hashtags since they first appeared. Some of the conversation has been about concerns over ‘allowing’ the public to define their own metadata, while much of it has been the flip side of trying to engage the public in generating metadata for library online collections, and thus enriching access and awareness for those collections.

Naturally, the general public simply move forward with creating new hashtags for their own purposes, largely unaware of the conversations and concerns of professionals in the area of metadata. This is as it should be. The idea of a Folksonomy, a.k.a. folk taxonomy, as originated by Thomas Vanderwal centers around the social aspect — real people, real folk, coming up with language that means something to them to describe content that matters to them with ideas that matter to them. Meaning.

I could go on about this for a long time, but today I need to focus on a particular aspect of this dynamic — a shift from folk+taxonomy to folk+ontology. Folkology? Folk ontology? Folktology? A little bit of digging leads me to folktology (non-scholarly) or tagontology (scholarly) as preferred terms for this, both of which are used roughly the same amount.

In social media, one of the greatest strengths has been the power to create community where none existed before, to connect and empower those who may otherwise be isolated. The most prominent examples of this in healthcare have been the emerging communities around chronic conditions (such as diabetes), marginalized communities (such as facial difference and transgendered), and conditions that create isolation as part of the lifestyle or treatment of the condition (such as mobility disorders, many types of cancer, and any condition expected to be fatal).

Taking cancers as an example, there is the immediate problem of the ambiguity of language. In the image at the head of this post, the hashtag #cancer is shown to be most often associated with the Zodiac, not with healthcare. This makes that term itself less useful for healthcare uses.

Symplur Healthcare Hashtag Project 07082013
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/

In the Symplur Healthcare Hashtag Project, a crowdsourced collection of hashtags in health, there are over 2500 hashtags total, with over 100 (n=133 07/08/2013) related to cancer. These range from disease tags, to events, to scheduled chats, and more. When people enter a new tag, they cannot do so anonymously, and the tags are reviewed before being added to the database. The tag donor is also asked to define the tag category at time of submission. Non-event tags must be able to show that they are used by multiple people. All of this makes the quality of the collection superior to most hashtag databases on the web. (I often wish there was something similar for science hashtags, or information technology hashtags, etc. I also often wish that the project content was routinely archived for posterity through a neutral organization, such as a library, but that is another conversation to have.)

The problem? Not one of those 133 hashtags on cancer is the hashtag #cancer. Of course, it would be really messy to try to separate the zodiac hashtags from the health hashtags, so I can understand why it has been avoided. However, this problem of the commonly used hashtag being missing from the database occurs fairly regularly. It is a not unexpected problem with crowdsourced information collections. Here’s another example. According to Symplur, the preferred hashtag for ovarian cancer is #ovariancancer. If you actually prowl around Twitter, there is an enormous variety of tags used, with the most common being #ovca. The #ovca content is not currently being captured, tracked, or archived in the project database. I just this morning submitted the #ovca tag when I noticed it was lacking. Hopefully, it may be active by the time this post goes live, but the content in it would be sparse and would lack history.

Here are the top, ie. most common, cancer hashtags, according to Symplur.

#BCSM; #BladderCancer; #BowelCancer; #BrainCancer; #BreastCancer; #CancerChat; #CancerFreeMe; #CancerSurvivors; #CervicalCancer; #Chemo; #ChildhoodCancer; #ColonCancer; #Leukemia; #LiverCancer; #LungCancer; #Lyphoma; #Melanoma; #Mesothelioma; #OralCancer; #OvarianCancer; #PancreaticCancer; #PediatricCancer; #ProstateCancer; #SkinCancer; #TesticularCancer; #XMRV
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/diseases/

You’ll notice a wide variety of types of tags, with a general approach tending toward long tags that include the full words. In actual practice on Twitter, this is the reverse of standard practice, in which tags are kept short to minimize the number of characters used. Many of these tags, like #OvarianCancer, have shorter alternatives that are also used heavily (ie. #ovca). For breast cancer, both forms appear in the Symplur list: #BreastCancer and #BCSM. #BrCa, however, was missing, just like #OvCa. I submitted it, also.

You see the problem? Problems, actually. Part of it is discovery of the terms used, part of it is the actual terms used, and part of it is the community working to ‘manage’ creation, use, and adoption of the terms. Enter @SubatomicDoc, a.k.a. Dr. Matthew Katz. Matthew is a radiation oncologist who has been active in a couple different Twitter cancer communities, most notably #BCSM (which he adopted) and #LCSM (which he initiated). #BCSM stands for breast cancer social media, and #LCSM stands for lung cancer social media. The process of coming up with a better hashtag for lung cancer, gathering a community around it, and developing traction and adoption, got him thinking. What about other cancers?

Matthew sent me a direct message last week about this. He’d been thinking, and had created a rough draft of what he is calling a folksonomy, but which is really more of an ontology, uh, folktology or tag-ontology. We went back and forth several times, thinking about metadata design, automated sorting in computers, common usage, structuring subconcepts, distinguishing proposed tags from currently used tags in other domains, and various other ideas of how to best structure these in a way that would be useful, practical, and true to the concepts and communities. Matthew released the initial draft at the ASCO site last week, with a substantial model integrating proposed and existing Twitter hashtags around cancer experiences and communities.

Matthew S. Katz, MD. Hashtag Folksonomy for Cancer Communities on Twitter. ASCO Connection: 03 Jul 2013 9:08 AM http://connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx

Since then there has been a lot of reaction, with people asking for MORE. Frankly, that is not a reaction I think either of us expected. There are refinements and extensions evolving from the communities. It is becoming a richer and broader conversation. I’d like to see more medical librarians engage with this. I am no metadata specialist, and would love to see someone get interested who is more expert than I am with metadata.

One of the extensions that was proposed through Twitter conversations around this is the idea of secondary tags to connect common cancer issues with specific cancer communities. I’d roughed out a list of some of those issues for my book chapter for online cancer resources and search strategies, back in the MLA Guide.

CAM, biopsy, staging, caregiving, home care, chemotherapy, cancer medications, side effects, clinical trials, fatigue, new diagnosis, nutrition, diet, pain, prevention, lifestyle, second opinions, sexuality, survival, and talking about cancer to different audiences.
MLA Guide: Free Samples: Sample Chapters: Volume Two: Diseases and Disorders: Part IV: Cancers, by P. F. Anderson http://www-personal.umich.edu/~pfa/mlaguide/free/cancers.html#issues

One of the ideas Matthew is talking about is how to come up with a strategy for creating new hashtags that would open this up to others, what are the criteria or best practices for creating new hashtags. I did some thinking on this for my Enriching Scholarship workshop on Twitter Hashtags for Science.

Twitter Hashtags

Twitter hashtags mindmap: http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson

I should make a separate post about the model I developed for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:


LUDDITE Model for Hashtag Creation

These overlap in many key points with Matthew’s criteria in his ASCO post, however he includes critical points of working specifically for cancer and healthcare communities.

“It is disease-based;
It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
It is designed to make information more easily accessible;
It is unique enough to be distinguished from other topics online;
Brevity is key to allow more content/conversation, especially with Twitter.”

So, that’s as far as we’ve gotten, but we’d love YOU to join the conversation and thoughts around this. Please put comments about the hashtag model at Matthew’s post, and comments about the process here. Thank you so much!

UPDATE July 15, 2013.

An important followup post from Matthew (@subatomicdoc) is now up.

Cancer Hashtags: High Time or Half-Baked?
Matthew S. Katz, MD
15 Jul 2013 10:09 AM http://connection.asco.org/Commentary/Article/ID/3599/Cancer-Hashtags-High-Time-or-Half-Baked.aspx

18 responses to “Hashtags for Twitter Cancer Communities

  1. Patricia, thanks so much for writing such a thoughtful post and explaining so much more than what I wrote. I hadn’t expected that my post on ASCO would resonate, but I’m glad that it did.

    Twitter will not be the right channel for many to get information about cancer, but for those who decide to try it would be nice if there were something to reference or to find your way more easily to the right people and organizations.

    I’m sure my initial salvo can be improved by with the help of information sciences experts, cancer specialists, patients, advocates, caregivers, and more. To quote the eternal Bob the Builder: “Can we build it? Yes we can!”


    • You are such a gem! I was honored that you asked me thoughts on this project as it evolved. It is truly rewarding to see it taking shape and moving forward. Really! The point with hashtags is that they extend the conversation and collect it across many channels. It won’t be just Twitter, but also Google Plus, Flickr, and who knows where else? It is also a useful and worthwhile effort if it does nothing more than get a few people to think more deeply about tagging, how and why we do it. I just found these two posts on the history of hashtags, which are rather interesting.

      The Hashtag Is About to Roll Out to a Billion People, and This One Guy Invented It: http://www.theatlantic.com/technology/archive/2013/06/the-hashtag-is-about-to-roll-out-to-a-billion-people-and-this-one-guy-invented-it/276811/

      Stowe Boyd: The First Time I Saw a Hashtag: http://stoweboyd.com/post/52447334415/the-first-time-i-saw-a-hashtag

      I find it astonishing, from my perspective, that hashtags have been around for such a short period of time, since as a librarian I’ve been thinking about things like hashtags for many decades. Hashtags have a utility and flexibility that is very gratifying.

      I agree about the benefits of more voices and a broader range of experiences! Here’s hoping some more folk chime in.


  2. Great meaty thinky post. Thank for so much to learn and consider.


  3. It is a wonderful goal to try to bring some structure to hashtags for cancer, but there will always be issues, some of which are unexpected. For me, finding that the vast majority tagged with cancer relate to the zodiac instead of the disease was a surprise, Another surprise is that #BrainTumorThursday (which fails miserably the “L” component of LUDDITE) has been spelled with an added “u” in the UK and Australia (#BrainTumourThursday).

    Speaking of LUDDITE, balancing Length. Distinct, and Decipherable can be tough. #BCSM meets the first two, but fails the last.

    I could ramble on forever, but want to put the hashtags I often use out there: #BrainTumor, #BrainCancer, #BTSM (brain tumor social media), and #BrainTumorThursday.

    Finally, a “for what its worth” comment: a twitter search for #BrainTumor will also pick up tweets with the words “brain tumor.”


    • Hi, TumorWarrior!

      If you go to the Mindmeister mindmap, you’ll see on the righthand side that I actually used Brain Tumor as one of my examples! Yes, I try to teach students to pay attention to alternate spellings of words, and include that in the “unpacked” version of LUDDITE.

      LUDDITE is not intended to be a prescription, but rather a kind of a checklist of issues to consider in creating and selecting hashtags. Your note about BCSM and decipherability, for example, is very dependent on the intended community. In the HCSM community, we’ve grown accustomed to the “SM” at the end of our healthcare tags. The SM officially stands for “social media”, but that doesn’t always make sense. I am uncomfortable with the idea of always attached SM as an indicator that “Oh, we are talking on Twitter now, and isn’t that different?” Me, I have really mixed feelings about it. Matthew likes it. Adding the SM does, however, aid with the distinctiveness. So, it’s balancing the factors in making the choice.

      Regarding how Twitter search handles the hashtags? That has changed over time, and I expect it to change again. They are not clear about it, and it isn’t handled the same way in Twitter search as it is in the API. That means that other tools to search, display, or archive tweets may or may not include the spelled out words.



      • I’ve continued thinking about all the information Patricia has shared, and I’m trying to sort out the suggestions I’ve gotten. I also appreciate learning more about the proposal I made (incorrectly mind you) not being a folksonomy but either a folkontology or tagontology. This has been a remarkable learning experience for me.

        I agree with Tumor Warrior that the tags are not immediately decipherable. And Patricia’s point is a good one that using -sm doesn’t necessarily make sense. But both of those issues can be remedied by education and training. Social media are communications tools; there are certain terms we can learn if it serves a need. I haven’t figured out all aspects of my cell phone but I know enough to understand some abbreviations necessary to making it work.

        For me, the -sm serves the purpose of distinguishing an ‘open channel’ that is fair game for anyone. The foci in #bcsm have been empowerment, support and advocacy. But as a doctor, the -sm tag also indicates a zone in which it’s recognized that this isn’t an office setting, protected or private. The -sm suffix also serves another purpose: encouraging more healthcare professional engagement. It’s also broad enough that participants can’t focus on details of a specific disease, or disease state, that holds interest enough to permit conversation being construed as medical advice. This is an important factor if you want more information sharing and collaboration among clinicians, both with patients and other professionals. I think it’s fair game for inclusion of all stakeholders because it’s public domain. As a starting point, I think including the -sm in the tag is a helpful reminder.

        So how does someone new to Twitter, Tumblr or elsewhere know how to find the right tags? I need to discuss with others but there are ways to do it. Part of the success for a folktology/tagontology will be careful thought, a lot of listening and getting buy-in. Done well, it should be easily shareable and learnable.


      • Ultimately all these questions come down to what Thomas Vanderwal was saying about the importance of what arises in and from the community, what works for individuals, and so forth. Adding -sm makes perfect sense if it has become a community norm and people will know to look for it. Perhaps originally -sm stood for “social media” but that doesn’t have to be true in the future, if it evolves. I like this: “Done well, it should be easily shareable and learnable” plus what you said earlier about being discoverable. Something to remember is that nothing is easy to find at first. That happens through adoption. Getting many voices and communities involved is absolutely the best way for that to happen. So exciting and mind boggling to watch all this!


  4. Pingback: Hashtags for Twitter cancer communities | Health Care Social Media Monitor

  5. Reblogged this on Health Care Social Media Monitor and commented:
    Taking hashtags to the next level. Wonderful article.


  6. There definitely is a lot to think about when trying to find the best hashtags to bring people together on Twitter for a specific place to communicate. Whatever the hashtag, thank you Patricia and Matthew for bringing the importance of finding the best home for people to come together on Twitter when it comes to the very important needs of so many people that need a home to talk about lung cancer. I agree with Marie that you are taking hashtags to the next level.


  7. An important followup post from Matthew (@subatomicdoc) is now up.

    Cancer Hashtags: High Time or Half-Baked?
    Matthew S. Katz, MD
    15 Jul 2013 10:09 AM http://connection.asco.org/Commentary/Article/ID/3599/Cancer-Hashtags-High-Time-or-Half-Baked.aspx


  8. Excellent article as always Patricia. And I’m honored to be following, and will try whatever I can to add- first- if we send one item out for the conversation- where would you like people to start (with this article, G+ open community, etc?)

    Secondly, while this started for Twitter- the taxonomy/folksonomy is the same for all social media. It seems to me it would be of great value to broaden the issue to cover all social media. Once we can begin to find a system (as there has been the Dewey system for years for books) for dividing health information, conversations, communities and resources, we can use that across all social media. In solving the one problem, we could solve it for all mediums without more work.

    Congratulations to Matthew and you! Best, Gail


    • Who knows, Gail? Neither Matt nor I expected this kind of reaction. It was more tossing an idea out. Trust me, I KNOW the “if you build it they will come” model doesn’t work!

      I don’t want, at this time, to take on a project the size and scope of what you describe, but the potential is definitely there. I’m thinking let’s start with cancer, as a major and active community, and see if it actually WORKS. Also, streamline the processes. What words, what doesn’t, what are best practices and lessons learned to make things easier for other groups that want to follow along with this model. So, begin with a trial. 🙂

      The G+ open community (HLTHTOP https://plus.google.com/u/0/communities/115720718880177064725?cfem=1 ) has links back to the main posts on the topic, so that’s probably the best one stop shop for now.



    • Thanks so much, Gail! The Google Plus COmmunity HLTHTOP is probably the best place to start, since the resources are being collected there. https://plus.google.com/communities/115720718880177064725


  9. Pingback: Hashtags for Twitter cancer communities | takeawareness2action

  10. Great post! Helping me to find an audience, as a patient & writer in this super-specialized field.


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