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Hashtag Folksonomy for Cancer Communities on Twitter

Matthew S. Katz, MD

03 Jul 2013 9:08 AM

For two years, I’ve participated in #bcsm, a rich breast cancer and social media community founded on Twitter. It has encouraged me to ask: why not design similar resources for people with other diseases?

Twitter allows real-time interactions. Hashtags allow you to classify tweets, so that they can reach certain audiences. It also permits tweetups, online meetups that can discuss pertinent issues. #bcsm has done this superbly and is enriching for the participating patients, advocates, caregivers, and providers.

This evolution is already happening, but not in an organized way. #btsm has now been created, with a focus on brain tumors. It can happen for other cancers, too. Much of it is patient-driven, but an increasing number of doctors, nurses, hospitals, professional societies, and more are now online as well. But the motives may vary from asking for help to promoting clinical trials, yourself, or products.  

The use of hashtags in social media provide a folksonomy, or user-driven classification, that can be effective in health care if:

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

While applicable to many areas in health care, my expertise is oncology. So I have proposed a cancer hashtag folksonomy (below and on Google Docs) that builds upon the existing success of Twitter cancer communities.

I suggested #lcsm for lung cancer, and it’s off and running with the leadership of advocates and clinicians. Some traction is already underway for #crcsm and #pcsm for colorectal cancer and prostate cancer, respectively.

Because some communities have already developed on Twitter, my proposed system isn’t perfect like the Dewey decimal system. But it may allow some new communities to spring up more easily by providing them with some structure. Thank you to Patricia Anderson at UMichigan for feedback to make it more organized than it was before.

The potential of using Twitter, of course, is that this community is public domain. Some health care professionals and patients may prefer the privacy of other platforms. Caveat Tweeter!

Using these hashtags won’t change the purposes driving people to use social media. Maybe other hashtags will better capture people’s needs. But maybe if we can find each other a little more easily, the support and innovations will come a little faster.

Adult Cancer Folksonomy

 

Hashtag

Disease

Sub-hashtags

Disease subgroup

#adcsm

Adrenal cancer

 

 

#ancsm

Anal cancer

 

 

#bcsm

Breast cancer

#bcher

HER+

 

 

#bcinf

Inflammatory

 

 

#bcma

Male

 

 

#bcmet

Metastatic

 

 

#bcpr

Pregnancy-related

 

 

#bctn

Triple-negative

#blcsm

Bladder cancer

 

 

#btsm

Brain tumors

#btast

Astrocytoma/glioma

 

 

#btgbm

Glioblastoma

 

 

#btlym

CNS lymphoma

 

 

#btmen

Meningioma

 

 

#btodg

Oligodendroglioma

 

 

#btpit

Pituitary

 

 

#btsch

Schwannoma/acoustic neuroma

#crcsm

Colorectal cancer

 

 

#esophca

Esophageal cancer

 

 

#gynca

Gynecologic cancer

#cxca

Cervix

 

 

#ovca

Ovary and fallopian tube

 

 

#utca

Uterus

 

 

#vvca

Vulva and vagina

#hpbcsm

Hepatobiliary (liver, bile duct, gallbladder)

 

 

#hncsm

Head and neck cancer

#hnclh

Larynx, hypopharynx

 

 

#hncnp

Nasopharynx

 

 

#hncoc

Oral cavity (tongue, buccal mucosa, gingiva)

 

 

#hncop

Oropharynx (tonsil, base of tongue, soft palate)

 

 

#hncp

Parathyroid

 

 

#hncsa

Salivary gland

 

 

#hncsi

Paranasal sinus

 

 

#hncth

Thyroid

#krcc

Kidney cancer

 

Renal cell carcinoma

#lcsm

Lung cancer

#lcalk

ALK+ lung cancer

 

 

#lcmes

Mesothelioma

 

 

#lcnsc

Non-small cell

 

 

#lcsmc

Small cell

#lylsm

Lymphoma and leukemia

#lylal

Acute lymphocytic leukemia

 

 

#lylam

Acute myelogenous leukemia

 

 

#lylcl

Chronic lymphocytic leukemia

 

 

#lylcm

Chronic myelogenous leukemia

 

 

#lylhc

Hairy cell leukemia

 

 

#lylhd

Hodgkin disease

 

 

#lylnh

Non-Hodgkin

 

 

     #lylnhdb

Diffuse large B cell

 

 

     #lylnhf

Follicular

 

 

     #lylmm

Multiple myeloma

 

 

     #lylnhmz

Marginal zone (MALT)

#melnm

Melanoma

 

 

#pancsm

Pancreatic cancer

 

 

#pcsm

Prostate cancer

 

 

#srcma

Sarcoma

#srcb

Bone sarcoma

 

 

#srcst

Soft tissue sarcoma

#stomca

Stomach cancer

 

 

#testca

Testicular cancer

 

 

#thymca

Thymoma and thymic carcinoma

 

 

 

Proposed 7/1/2013 by Matthew Katz, MD a.k.a @subatomicdoc

Comments

Number of Comments: 25
Michael A. Thompson, MD, PhD

Wednesday, July 03, 2013 11:16 AM

Matt -

This is great!

I've seen some of this evolving on Twtter, but didn't realize you and others were driving the structure. This should help patients, advocacy groups, and physicians channel their energies.
I suspect others will mine these publicly accessible information sources for opinions as well.
(Nothing wrong with that -- it's all public).

I will check out #lylmm for Multiple Myeloma.
I hadn't used that before. I would suggest it not be classified under Non-Hodgkin (#lylnh) lymphoma but as a separate category. Also, could group it together or separate from amyloidosis -- eg #lylamy (since #lylam taken).

I'll look at some of these and potentially interact more via email so I don't eat up all of the commentary here.
Thanks for doing this.

Mike
 
Matthew S. Katz, MD

Wednesday, July 03, 2013 11:42 AM

Thanks for taking time to read it and for the suggestions, Mike.  Serendipidty brought me to #bcsm and it's been very rewarding to participate.  I'd thought of it a while ago, and it seems to be ripe for takeoff.

Users determine what works, so a proposed architecture may not last.  But shorthand nomenclature may help people who are isolated find each other easier. Like Field of Dreams:  "If you build it, they will come".

Thanks again for taking time to respond!
Best, Matt
 
Don S. Dizon, MD, FACP

Wednesday, July 03, 2013 2:46 PM

Hi Matt- an excellent list and I support this wholeheartedly! Already participating on #lcsm with with others, especially @LungCancerFaces, but love the notion of communities of similar interested thinkers, advocates, and patients. Kudos, DSD
Elaine Schattner

Wednesday, July 03, 2013 5:56 PM

Thanks for putting this list together, Matt. So needed!

I suspect that the broader, "easier" categories will prove most useful for patients, caregivers and others. Maybe for doctors, too.

Best, Elaine 
Matthew S. Katz, MD

Wednesday, July 03, 2013 11:40 PM

Don and Elaine, thank you for your feedback.  I do see value in helping support these communities and provide some possible loose hierarchy.  Elaine, I would agree most patients will be fine with broad categories.  However, some people with a less common disease variant may have a unique enough cancer experience (e.g. ALK+ lung cancer or male breast cancer) for which a separate hashtag would provide isolated patients a way to come together.

This elimination of isolation can be dysfunctional, such as pro-ana / #thinspiration for anorexia nervosa.  But harnessed well with responsible community leadership, I think hashtags may be a way to promote healthier behaviors, patient empowerment and curate quality content for patients, healthcare professionals and other stakeholders.

Thanks again, Matt 
Blonde Ambition

Saturday, July 06, 2013 2:59 AM

Matt, this is a great piece. I tweeted this earlier, but there are resources that have slowly evoloved on Twitter attempting to better organize and promote the plethora of chats that have developed. The newest (and in my opinion, the most comprehensive one) is @TheChatDiary (hasthag #TheChatDiary). http://www.thechatdiary.com/

This site has organized chats not only by category, but also offers a global schedule of dates and times. Moderators (and/or participants) are encouraged to register their chats on this platform and others -- similar to a TV viewing schedule. #BCSM is already part of this. If you know the moderators of the other chats you listed, perhaps you can make them aware of this resource so they can have their chats listed as well. I'm pretty sure there is a 'medical' category, but perhaps they can even create an additional sub-category for cancers.

Hope this helps (and yes, this is my pseudonym). ; )
Matthew S. Katz, MD

Saturday, July 06, 2013 6:44 AM

Blonde Ambition, thank you so much for sharing The Chat Diary, I will check it out.  It's very helpful to have resources to recommend.  My experience with Symplur's Healthcare Hashtags has been good so far. For chats both sites seems to have good value and others may exist.

My post was really about trying to develop a nomenclature, or shorthand marker, that facilitated information sharing and community in addition to real-time meetings/chats/tweetups.  I've been surprised and humbled by the positive response, and I've already come up with some ideas for improvements.

What I haven't had a chance to do yet is explain some of the potential risks that also go with the benefits.  Social media is a communication tool, it can be used well or poorly.  My hope is that developing the hashtags is piece of the broader goal of personal empowerment for patients, caregivers, healthcare professionals, researchers, and others. So by itself, cancer hashtags aren't enough.

Thanks for taking time to comment, and have a great weekend.
Best, Matt 
Lucio Nobile

Saturday, July 06, 2013 11:39 AM

very useful. the one on bladder cancer doesn't work for me. I was interested on looking for opinion regarding the last manuscript on concurrent MMC and RT in bladder ca
Deanna Attai

Sunday, July 07, 2013 10:53 PM

Great post, Matt. None of us thought that when Jody Schoger and Alicia Staley founded #BCSM 2 years ago that it would grow to such a dynamic and supportive community - one that includes patients AND physicians working together and learning from each other. I'm proud to be a part of that (as a co-moderator) and am happy to see other disease groups follow. Your last point about risks and benefits is a good one - we've been fortunate that the #BCSM community does a good job at policing itself. Jody and Alicia set out to develop a community that was supportive but also evidence-based, and the regular input of physicians like you helps keep the group on track. As more patients are looking for health information on-line, it's important for physicians to be a part of the discussion.
Matthew S. Katz, MD

Sunday, July 07, 2013 11:03 PM

Thanks, Deanna.  I agree that you couldn't predict #bcsm's success at the time.  You, Jody, Alicia have done a great job moderating, and the community itself is generally very respectful and supportive.  I'm not sure whether it will manifest in the same way for people with different types of disease.  The cancer experience can be so different, the dynamics may not be the same.

But it's worth a shot to build a roadmap that permits other cancer communities to grow for support, empowerment and decreased isolation.  I've already started making changes to the outline above to account for the thoughtful feedback I'm getting.  Thanks again Deanna for everything you're doing with #bcsm, it's great to be able to participate.
Best, Matt 
Eve Harris

Monday, July 08, 2013 4:16 PM

Thank you, Matt! How important is this? Well, I'm a patient advocate & have only "met" most of you in the context of social media. But I'm confident in your professionalism and dedication based on your participation and stature there. 

The cancer patients I work with have only their age cohort - AYA - in common, not their diagnoses. How might we accomodate their need for a conversation about fertility preservation and other life-stage-relevant issues?
Matthew S. Katz, MD

Monday, July 08, 2013 8:32 PM

Eve, thank you so much for your kind words.  I've gained more than I've contributed via social media, from you and so many others.  This idea came to me after seeing the positive interactions of so many real leaders online that I thought it would be a shame not to share a broader concept that might help others still without a voice. AYA is an important group to consider and may cross some diagnosis-related boundaries.  However, it also bridges into the arena of legal issues.  Social media consist of various communications tools, Twitter being a very public one.  For AYA patients younger than 18, there may be specific legal and ethical considerations.  Until that's clear I'm hesitant to advocate for using Twitter for younger AYA patients.  I would defer to pediatric oncology specialists on that count.  For young adults 18 and over, fertility preservation and many other issues come into play.  This group is the most prominent adult group facing a broader issue for older adults as well: survivorship care. I have come up with some ways to address disease-status relevant issues, including 'NED'/survivorship. For those with more expertise with AYA cancer patients than I, if there is value in a young adult 'channel' I'd propose #yacsm for 18+.  If someone can clarify the potential issues around encouraging adolescent or younger cancer patients, I have some ideas but development depends upon guidance. Thanks again Eve! Matt
Michael A. Thompson, MD, PhD

Tuesday, July 09, 2013 10:58 AM

Myelodysplastic syndrome (MDS) - roll in with AML hashtag or just use #MDS (as I just did in a tweet)?

Mike 
Matthew S. Katz, MD

Tuesday, July 09, 2013 9:16 PM

I'll be honest - I'm not experienced enough to subclassify hematologic malignancies or related conditions. Dr. Younes had preferred the #lymphoma to #lylsm and in reviewing, I agree that the latter is too broad. 

For MDS, #MDS currently seems to be a happening party on Twitter in English, and a lot of Spanish tweets.  It's probably not unique enough.

Modifying based upon Dr. Younes' point, I'd probably recommend considering #leusm for leukemia, #lymsm for lymphoma.  For MDS, perhaps then would be #leumds. 

But there will be other areas for improvement, I'm sure. And we will need help.  If anyone is interested please feel free to reach me at @subatomicdoc or via my ASCO membership contact information.
 
Matthew S. Katz, MD

Wednesday, July 10, 2013 9:18 AM

For those interested in reading more, Patricia Anderson has written a great post expanding upon the idea.
Eve Harris

Wednesday, July 10, 2013 1:58 PM

Thanks for pointing to @pfanderson! (and thank you, Patricia)

RE: AYA and hashtags I will defer to those who understand taxonomy better than I. Seems like lifestage hashtags, across diagnoses, have a place. As far as the under-18 population their legal considerations extend beyond PHI...hopefully protecting minors is parts of *all* social media best practices.

BTW, while I do advocate that fertility be discussed among survivors and in survivor advocacy settings, the oncology community can serve patients better by operationalizing the understanding that a patient's best options will be *prior to* chemo or other gonadotoxic therapy. #meded
 
Pf Anderson

Monday, July 15, 2013 11:26 AM

Eve, I really like the idea you proposed of including tags for related aspects of a condition. Matthew and I have been talking about this a little via DM. In MEDLINE they handle this by having two types of headings - MeSH headings; subheadings; and limits (which is where the age groups fall). The subheadings are used as qualifiers to the MeSH headings, and may apply across several conditions, rather than being unique to a specific cohort. The limits apply at the search strategy level, but obviously on Twitter hashtag streams can be combined or independent, either way. It seems to me that what we want is a second set of tags to use as condition qualifiers, kind of collapsing the subheading/limit concepts of MEDLINE into this secondary set of tags. I had recommended, as a start, that we develop tags for these concepts: 

biopsy, 
CAM,
caregiving,
chemotherapy,
clinical trials,
communication (talking about cancer at work or with friends & family),
diagnosis,
fatigue,
gender/age (men, women, lgbt, children, aged, etc),
lifestyle,
new diagnosis,
nutrition,
pain,
prevention,
resources,
second opinions,
sexuality,
side effects,
staging,
survival,
terminology

 Other ideas? 
Matthew S. Katz, MD

Monday, July 15, 2013 9:33 PM

These are all excellent potential subtags to determine how to develop.  I've come up with some for disease status, because it could allow a lower barrier for patient education and/or clinical trials access and accrual.

Imagine this:  a newly diagnosed patient with clinically localized prostate cancer wants to know what his options are. He's had a biopsy but wants to learn more before selecting treatment or active surveillance

Hashtag could be #pcclond --> prostate cancer [pc], clinically localized [clo], new diagnosis [nd].

Clinical trials and patient education resources specific to these patients could be tweeted with that hashtag.  Alternative approach:  #pcT2aN0M0nd to use TNM stage instead of clo for more generic clinically localized.  However, the string is longer and may be unneccesarily specific for practical goal.  Keep in mind these tags are meant to facilitate access to good information but shouldn't necessarily reach the point of approximating medical advice. 

A lot to discuss, debate and try to synthesize.  But hopefully a useful approach.




Pf Anderson

Monday, July 15, 2013 9:56 PM

Oh, dear, I'm afraid that I didn't explain this very well. The usage you've described might backfire. Let me try again with your excellent example. A hashtag like #pcclond would probably not gather a community around it, but would describe that individual, or a couple others. I was thinking more of daisychaining hashtags, each of which would be descriptive for that concept. Perhaps more like #pcsm #clinloc #newdx ? I'm sure there are probably common elements to the experience of a new diagnosis across different types of cancer. The daisychaining approach would open the door to conversations across boundaries, allowing other people to track #newdx and provide support for each other, even with different cancers. Kind of like in PUBMED, if you search ("prostate cancer" AND "clinically localized" AND "new diagnosis") you find nothing, the combination limits discovery. A hashtag that combines all three concepts into one would essentially do the same thing - isolate, rather than connect. Daisychaining hashtags would be more similar (muddying the example here) to combining concepts with a boolean OR instead of AND. I hope this makes more sense? 
Matthew S. Katz, MD

Monday, July 15, 2013 11:59 PM

Patricia, this is why I love these conversations. I had the idea of the #bcsm , #pcsm being an 'open channel' for community, but I can now also see the daisychain of tags helping disseminate ideas and broaden community.  I really like the idea of a PubMed analogy.

I think what I ust commented upon above is and example more of 'narrowcasting' for a clinically relevant purpose.  In the case I gave, perhaps community isn't the goal, it's highly focused relevant educational content or access to trials that matters. I had envisioned something that started broadly and got very specific...like the Dewey decimal system, only patient-centered to specific clinical circumstances for a specific disease.

Most important is to ensure that any developed system helps people.  That's why we need more people's input, both clinicians and patients, and others.  Ideally this project is open, transparent and will amble toward becoming a practical tool on open social networks.  
Colleen Young

Tuesday, July 16, 2013 10:36 AM

This is a fantastic initiative and conversation. 

One key element that has not yet been mentioned is the importance of the community manager. Deanna Attai points out that founders of #bcsm - Jody Schroger, Alicia Stales and Deanna - could not foresee the incredible magnitude of the community. However, all 3 can attest to the work involved in starting and maintaining such a community. Merely establishing a hashtag does not build community as Patricia mentioned earlier.

To help understand, the effort and methodology for building community, I have written several articles. Here are a couple that may be of interest:



I recently joined the ELLICSR team at the Princess Margaret Cancer Centre. ELLICSR is the Health, Wellness, & Cancer Survivorship Centre at the Princess Margaret, University Health Network in Toronto, Canada. We would welcome the opportunity to help establish and build cancer communities on Twitter.
Michael A. Thompson, MD, PhD

Tuesday, July 16, 2013 10:46 AM

Doesn't the "daisy chaining" concept eat up too many characters in Twitter?
eg #pcsm #clinloc #newdx

A positive to using things like #lymphoma or #LungCancer is that it is obvious to casual observers as well as those highly involved in those online communities.

I think this has been one of the most active discussions on ASCO Connection -- and offline on Twitter and other forums. Strong work Matt. Part of the philosophical questions involve lumping vs. splitting and the technical limitations of the Twitter character count. 

Part of the solution may be "pushing" the conversation off character limited micro-blogging sites (Twitter) to more expansive forums including open and curated/moderated content (eg, FAQ's and common links) -- current examples might include Cancer.Net, ASCO forums, LinkedIn, HealthTap, etc. As well as forums that don't yet exist.

Mike 
Pf Anderson

Tuesday, July 16, 2013 11:59 AM

@Matthew, "narrowcasting". What a perfect way to describe that alternate purpose! I do know people who use 'narrowcast' or unique unused hashtags for personal purposes, usually to create a small private collection for personal use. I do this when preparing for some presentations, to collect core thoughts or resource exclusive to that event. It makes sense, but then the question is, if someone wants to narrowcast, why use a standardized set of terms? 

@Colleen, yes, Matthew and I have gone back and forth around the topic of community managers and moderators. Thomas Vanderwal also spoke with us a bit about this and related concepts — the importance of the tags arising FROM the community, not being targeted AT the community. What makes this project(?) so exciting is the way both patient communities and provider communities have expressed interest in collaborating to develop a concise set of shared tags for common conversations. I don't know if anything will come of it, but the conversation itself is valuable. 

@Michael, you bring up several intersting points. Regarding character count, yes, daisychaining WILL take more characters than the alternatives. The point is the way the conversations work and the way the technology currently manages hashtags. The boolean AND/OR dynamic, opening and closing conversations. Each tag is essentially a channel of its own. Some tools allow us to search by tag combinations, which then creates a new "channel" without needing a unique tag just for that topic. It simplifies the process of expanding and narrowing search. 

For example, in Twitter, I can search #bcsm 
https://twitter.com/search?q=%23bcsm&src=typd

I can search #bcsm and #brca
https://twitter.com/search?q=%23bcsm%20%23brca&src=typd

I can search #bcsm and #support
https://twitter.com/search?q=%23bcsm%20%23support&src=typd

Or I can search #brca and #support
https://twitter.com/search?q=%23brca%20%23support&src=typd

Or I can search #cancer and #support
https://twitter.com/search?q=%23cancer%20%23support&src=typd

What I find in each of those streams is very different. If I'm not finding what I seek with one term, I can mix and math with others. This is also a model that is currently in standard practice throughout Twitter and social media in general, the idea of combining tags to create unique concepts, as well as being similar to MEDLINE search structures. There are benefits and drawbacks to both approaches. With Matthew's description of narrowcasting, I'm thinking we might want two different sets  of 'tags' for broadcast and narrowcast functions, with the narrowcast terms being shorter. The problem with short tags when not combined is that they are rarely unique and tend to generate a confusing amalgamation of strange tweets on diverse and unrelated topics. 

Going back to the prostate cancer example, frankly, I can imaging a clinician including "clinically localized" as a concept, but I can't see many patients understanding the significance or attempting to build a conversation around it. I can easily imagine a patient combining a condition tag with a new diagnosis tag. Indeed, poking around, I just found an example (and as far as I knew, #newdx was a new tag).

#bcsm #newdx
https://twitter.com/search?q=%23bcsm%20%23newdx&src=typd
 
I suspect that as this evolves, we may find certain tags to be initially primarily of interest to clinicians, and thus less useful in open public communication spaces like Twitter. It may not make sense at this time to focus on tags for explicitly or exclusively clinical topics, at least not until the docs in the conversation feel they need them. Or, an alternative view, having such tags pre-established may ATTRACT clinicians to the social spaces for conversations. I don't know. It could go either way. I was pleasantly surprised to find that "clinically localized" is actually used quite a bit in Twitter, just not as a tag. 

https://twitter.com/search?q=clinically%20localized&src=typd

The nice thing about hashtags is that they ARE useful in a variety of spaces, far beyond Twitter. Hashtags can be used to aggregate conversations across many platforms. Matthew told me a vision he has of websites for the top level hashtags, with background information and live content fed from across the web. This wouldn't necessarily just be Twitter posts, but Flickr images, Google+ posts, Youtube videos, and more. So having a tag ontology actually supports your idea of pushing the conversation out, and (obviously) you and Matthew seem to be thinking along parallel lines. Perhaps existing web sites on specific conditions might agree to partner with the #hlthtop project to sponsor or host content for/from a specific high level tag. 

PS. Matthew and I have started to use the #hlthtop tag to gather conversation around this. Mostly just because it makes it easier for us. #HLTHTOP = Health Tag Ontology Project  
Matthew S. Katz, MD

Sunday, September 15, 2013 9:58 PM

The HLTHOP project continues to develop.  There is now a gynecologic cancer chat underway using #gyncsm .  After listening to others online and ongoing coversations, here is an updated list of the active hashtags.
Matthew S. Katz, MD

Thursday, January 30, 2014 9:22 AM

Since September, the idea of hashtags has evolved further.  It's now listed on Symplur, which aggregates a lot of health hashtags, as the Cancer Tag Ontology.

Some advocates requested adding #ayacsm for AYA oncology, and we have.  There is now a #gyncsm (gynecological cancer) chat/community on Twitter and increasing conversation around #crcsm (colorectal).  If you want to be more involved in developing these kinds of communities let me know and I can likely find some similarly minded people.
Thanks, Matt 

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