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Matthew Katz

Discussion  - 
 
Hi folks:
It's been a while, but I wanted to give you the preliminary data for the hashtag project.

From April 2011 through the end of June 2015, there were 762,103 tweets by 117,064 user accounts using the cancer tag ontology. The most active had live chats.

Thank you to +Audun Utengen +Patricia Anderson +Mike Thompson +Deanna Attai +Claire J +Don S. Dizon as coauthors for the article, and to +Lee Aase +Mike Fisch +Thomas Lee +Robert Miller as collaborators and coauthors on the ASCO poster.

And thank you to everyone who finds the tags valuable and uses them. Any suggestions and feedback is welcome as I'm sure it will continue to evolve.


This study highlights the usefulness of agreement on disease-specific hashtags for effective online communication about cancer care.
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Matthew Katz

Guidelines for New Hashtags  - 
 
+Matthew Zachary  of Stupid Cancer and Emily Drake have started using #ayasm  for adolescents and young adults with cancer.  This fits well, but three questions:
1.  Does the AYA apply only to cancer? Is it used for other diseases?
2.  What are the issues to consider vis-a-vis minors's health on Twitter?
3.  If it's OK for AYA, should we adopt #pdcsm  for pediatric malignancies?
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After further discussion ultimately #ayacsm was adopted. Thank you +Emily Drake and +Matthew Zachary!
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Matthew Katz

Discussion  - 
 
Exciting news! +Symplur has created a page to host the tags we've proposed.  Given how much attention Symplur gets around its healthcare hashtag project, +Patricia Anderson and I are both hopeful it will bring more discussion and debate.
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Matthew Katz

Discussion  - 
 
#gyncsm  is off to a great start.  Thanks to +Dee Sparacio and Christina Lizaso for great organization and effort to launch. We had a lot of well known folks on Twitter including  +AnneMarie Ciccarella join Wednesday night.  44 Participants, 453 tweets.  More analytics from Symplur here:
Top Influencers Analytics and Stats for #GynCSM from time period Saturday 9th November 06:00 PM to Saturday 9th November 07:15 PM (Pacific Time)
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Thanks +Matthew Katz  for being so supportive and for sharing your expertise by writing our Tweet disclaimer. I looking forward to many more lively and informative chats.  
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Matthew Katz

Discussion  - 
 
#gyncsm  plans to go live next Wednesday, 9PM EST.  I wrote this tweet disclaimer and it's been adopted.  
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Matthew Katz

Discussion  - 
 
OK, here is an updated list of the hashtags proposed. Good news - MD Anderson and the American Society for Clinical Oncology have adopted, and thanks to Mike Fisch I'll be discussing it with the Southwestern Oncology Group [a clinical trials group] in October.
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All very exciting! 
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With facebook's adoption of hashtags, we need to be ready to establish these hashtags there from the onset.  In the context of brain tumors, I've already begun using #BTSM.  The trick is to get people started with the preferred hashtags so that they don't have to be migrated later.  For example, twitter uses #BrainTumor in addition to #BTSM.

The only real problem I see with this project is that the hashtags do not lead to an intuitive understand of the topic such that the casual observer looking for information about brain tumors may not ever think to look under #BTSM.
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Lou, thanks for joining. I agree -- one of the challenges is determining how to give people access to non-intuitive hashtags.  I have a solution to that.  But my concern is making something scalable before we've made sure it's a good thing to expand widely.
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Matthew Katz

Proposed Hashtags  - 
 
#ovca  is already established for ovarian cancer, so I thought I'd try to make other gynecologic malignancies similar:

#cxca  = cervix cancer
#utca  = uterine cancer
#vvca  = vaginal and vulvar cancer

#utca  won't work great, there seems to be a lot of conversation in ?Hungarian or Finnish using it.  Any thoughts?
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10 comments
 
Seems to have been of interest to NOCC, SGO, and individual patients and docs. Someone spontaneously set up #gyncsm Twitter account!
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Matthew Katz

Discussion  - 
 
So let's start with hashtags that are more general and allow community building.  Model is #bcsm  with idea being that for other types of malignancies a similar hashtag can promote community.   My original ASCO post I've updated based upon feedback, but here's an outline.

What works, what's missing?
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Matthew Katz

Guidelines for New Hashtags  - 
 
I'm not sure whether it's right to base an ontology on a grass-roots tag, but given the success of #bcsm  I think it may resonate well with patients, and #hcsm  has already set the stage for use.

My proposal is to designate hashtags ending in -sm as "open channels" that permit all stakeholders to converse in an open forum.  It would be for a general disease category, flexible enough to promote community even though not everyone's experience is the same.

These open channels may attract clinicians to engage understanding that this open channel is for conversation, learning, advocacy and general support.  Tweetups may or may not develop, that takes a critical mass and come with some caveats.  
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19 comments
 
This. This: "each one was stupider then the next because the pitch was all about technology and not healthcare problems solutions outcomes." And this is why we need MANY voices and perspectives collaborating on challenges and solutions, like the TEDMED great challenges. This is why Cochrane asks that systematic review teams have a e-patient on the teams, to help serve as a bridge, bringing insights from patients to clinicians and researchers, and bringing quality clinical information to patient advocates and communities. 
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About this community

This project evolved from a post by Matthew Katz at the American Society for Clinical Oncology. Matthew's vision: "We are dedicated to the proposition that all people have a right to quality health care. To that end, we want to develop and organize hashtags to promote better cancer care for patients, caregivers, healthcare professionals and all with a stake in easing the global burden of illness and suffering. We hope that this will be a rich, dynamic project. Collaborators are welcome!"
 
I thought that the topic of our next Tweetchat might interest this crowd. It's about searching online for health information post-diagnosis. Feb 2nd, here's the link.
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Dee Sparacio's profile photoPatricia Anderson's profile photoJohn Novack's profile photo
2 comments
 
Marked my calendar.
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Matthew Katz

Discussion  - 
 
Many thanks to Mike Craycraft for adopting and advocating for use of #tscsm  for testicular care.
#tscsm is a testicular cancer hashtag that will allow for easily searchable information regarding testicular cancer posts on social media platforms
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Matthew Katz

Discussion  - 
 
One of the planned things we added for the #gyncsm  tweetchat was designing a disclaimer for participants since it does involve some risks as well as benefits.  Any suggestions for improvement? Do you think it's necessary?
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Great disclaimer...helpful and informative
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Matthew Katz

Discussion  - 
 
I came across this article while learning more about hashtags.  +Chris Messina is credited with developing the idea.  
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Patricia F Anderson
owner

Guidelines for New Hashtags  - 
 
I should make a separate full-length post about the model I developed as a kind of checklist for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:

Length
Unique
Distinct
Decipherable
Indelible
Time
Enterprise

Image: http://www.flickr.com/photos/rosefirerising/9241639772/

Twitter hashtags mindmap: http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson
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Just entering this discussion, I bring the French experience which is quiet limited, because French patients are little used to acronyms. Anyway, we started last year to put the #PPE (paroles de patient expert = expert patient worlds) in our tweets ans this hashtag is largely diffused in the cancer community. 
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11 comments
 
I thibk that It 's probably easier to use an hashtag bcms and add fr... In France cs doesn't mean nothing for patients. The problem is that French patients aren't on twitter. They are afraid of this sm and already spend a lot if time on FB, blogs... They preferred Facebook where there are a lot of little communities of women who speak and support themselves daily. So how could we convince them to join us ? I suppose that the chat must be in French, once a month and with subjects who interest the women. (Hormonotherapy, reconstruction, sexuality ...). 
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Matthew Katz

Guidelines for New Hashtags  - 
 
As we develop these, an important consideration is access barriers due to language. Maybe we can look at French, Spanish as trial languages for common diseases like breast and lung cancer? Thoughts?
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A related challenge is same topic, same language, different time zone. I'd propose adoption of the #hcsm model for general 'big tent' hashtags. 
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Matthew Katz

Proposed Hashtags  - 
 
The following hashtags are already in use and seem to be working to promote community-building:
#bcsm  = breast cancer and social media
#btsm  = brain tumor and social media
#lcsm  = lung cancer and social media
#pcsm  = prostate cancer and social media
#ovca  = ovarian cancer
#mmsm  = multiple myeloma
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3 comments
 
Yep :) Hard to believe it wasn't in Symplur yet, but there you go - we have to take responsibility for ensuring the archives of the tags we use. 
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Matthew Katz

Discussion  - 
 
I would suggest that we consider health in accordance with the World Health Organization's definition:  "Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."  

More at the link below for the WHO's constitutional preamble.
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Matthew Katz

Discussion  - 
 
The basis of the project should be grounded in the right ethical framework.  Here is what I've diagrammed to date.  Thoughts?
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8 comments
 
All right, here is the updated version: http://imgur.com/dyzQyeu 
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