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2018-09-27T12:51:42.000Z

A Dummies Guide to @Social_Media in #Myeloma

Sep 27, 2018
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This article is a little different from our usual coverage, but perhaps no less important. I am not an expert in social media, but having worked on the Multiple Myeloma Hub (MM Hub) for 18 months, I have come to realize the value of social media, and in particular Twitter, for disseminating information and sharing ideas. I now read Twitter on a daily basis in order to follow the news in multiple myeloma, to keep in touch with conversations between key opinion leaders, and to ensure I'm not missing any key drug updates or new manuscripts published.  

As part of a new ‘lunch and learn’ initiative at the MM Hub, we visited one of the London (UK) hospitals to speak with hematologists that may benefit from our website. The aim was to tell them about the MM Hub, to find out their views of the website, and to see if what we are doing addresses their needs. One of the take-home messages was that few clinicians are regularly using social media, and if they are, they don’t necessarily know how to leverage its use. I promised one clinician that I’d write a piece about social media in MM focusing on Twitter, so here it is! I’m not suggesting that any of you are dummies, but navigating social media can take some time if you don’t know the basics, so here are some pointers.

Twitter

Most of you will have heard of Twitter, but may not have discovered its value as a means of keeping up-to-date in your field. Twitter allows users to post short, sharp messages, called tweets. It was created by Jack Dorsey, Evan Williams, and Biz Stone in 2006, initially as a means for friends to keep in touch with what each of them was doing, much like texting but more widespread depending on who you were connected with, and it took off rather unexpectedly. 

As science becomes more and more fast-paced, short, sharp messaging is becoming a key way to receive relevant information. For example, a tweet could be the concluding slide from a talk delivered at a congress, along with the take-home message. If you aren’t attending the congress, checking in on Twitter during your lunch break is an easy way to keep up-to-date and ‘on the pulse’.

Here is an example of one of the MM Hub congress posts: @SagarLonialMD presented the case for 2nd generation PIs @COMyCongress, emphasizing that “When defining BEST, OS needs to be the benchmark”. @MM_Hub #mmsm #comy18. Underneath, we posted the concluding slide with his ‘Take Home Messages’. It is of course not a substitute for being there in person but will give followers a feel for what is going on and the key messages being delivered. The key to finding such relevant posts is, of course, the hashtags.

A guide to hashtags

Hashtags are used to label and organize posts so that they can be easily found by your target audience. The key is knowing which hashtags to use and how to sensibly label your own posts. Here are some of the key hashtags in MM that are regularly used:

MM, multiple myeloma

Hashtag

Meaning

Who uses it?

#mmsm

multiple myeloma social media

Most people with a post relevant to MM

#myeloma

 

A lot of people with a post relevant to MM

#multiplemyeloma

 

This is less common than the two above but is still used by some

#bloodcancer

Refers to any of the blood cancers

Used by charities and organizations whose scope is wider and encompasses all the blood cancers

#SOHO18

#ASCO18

#COMY18

#EBMT18

#ASH17

#EHA23

 

Congress specific tags, which usually include either the year it took place or the number of the meeting

For example, EHA was the 23rd meeting, therefore EHA23

These change year on year and may vary, so be sure to check at the start of a meeting

Anyone wanting to find out about a particular conference/congress

For relevant MM posts from a given congress you can search using #mmsm plus the relevant congress hashtag

Hashtags can be placed anywhere within a tweet and should be relevant to the topic, and not overused. There can be a tendency for people to put a hashtag in front of #everything #they #write, but you have to ask yourself if it is a search term that someone might use when trying to find this information. If you use hashtags that are too broad, then users will have to sift through a lot of material before they find your posts. For example, whilst #medicaleducation is technically relevant to the content of the MM Hub posts, it is too general for someone searching for myeloma-specific news, and also the posts would not necessarily add to a conversation aimed specifically at the theme of medical education. It would be different if the tweet was specifically promoting the MM Hub as a medical education provider, the hashtag might then be relevant.

Twitter handles of key influencers in myeloma

Once you have set up your Twitter account, choosing who to follow is also important. Following charities, companies, and big institutes that have clinicians and researchers in your field would be a good start, along with individuals who are known ‘influencers’ in the field, relevant news sites, and key journals. This way, your daily ‘feed’ of tweets will have predominantly relevant information. Then, to avoid reading about what someone’s new kitten has been called, you, of course, filter your feed using relevant hashtags.

Every user has their own unique twitter handle (starting with @) which enables users to keep track of posts from certain individuals, companies, or institutes. There are some very active users in the multiple myeloma arena who are useful to follow. Below is a table of ‘key influencers’ in MM social media, based on Symplur statistics of the top 10 most mentioned and most prolific tweeters (data is based on the use of #mmsm and #myeloma and is not given in any particular order).

MM, multiple myeloma

Twitter Handle

Who? (text is taken from the Twitter profile)

@MM_Hub

The MM Hub is an online educational resource run in collaboration with the European School of Haematology.

@myelomacrowd

A patient-driven community for multiple myeloma patients, survivors, and caregivers.

@mtmdphd

Mike Thompson

Researcher at @Aurora_Cancer Member: @ASCO @ASH_Hematology @Doximity. #mmsm, #lymsm, #NCORP, #FCOI = https://coi.asco.org/share/RBB-TT6R/Michael … Thompson

@AuclairDan

Daniel Auclair

Cancer researcher, #genomics, #precisionmedicine, #myeloma, #mmsm, country boy and animal lover.

@Transplant_Doc

Muzaffar Qazilbash

Stem Cell Transplant physician and clinical researcher at MD Anderson Cancer Center; special interest in myeloma. Opinions expressed are my own

@IreneGhobrial

Irene Ghobrial

Physician-scientist in multiple myeloma at @DanaFarber/@BrighamWomens Hematologic Oncology Treatment Center. Tweets are my own & not medical advice

@DrOlaLandgren

 

Ola Landgren

MRD negativity associated with prolonged progression-free survival regardless of treatment (RVD with vs. without transplant), cytogenetic risk profile, or ISS stage  #mmsm @IMFmyeloma @theMMRF @myelomacrowd @sloan_kettering

@MyelomaTeacher

 

Patient Advocate

Advocate, Ambassador & Mentor, Patient Services Volunteer, @Ash_hematology Speaker, Myeloma Survivor, IRB Member

@VincentRK

 

Vincent Rajkumar

Edward W & Betty Knight Scripps Professor, Mayo Clinic; Editor, Blood Cancer J; Assoc Editor, Mayo Clin Proceedings; No Financial COI http://tinyurl.com/houbsqb

@Myeloma_Doc

Robert Z. Orlowski

Director of Myeloma Section at MD Anderson Cancer Center; Translational researcher who hates myeloma. Tweets are my own. Retweets ≠ endorsements.

@SparkCures

The Easiest Way to Find #MultipleMyeloma #ClinicalTrials

@managingmyeloma

Managing Myeloma is a comprehensive educational initiative for clinicians seeking current and emerging information, tools and resources on multiple myeloma.

@VJHemOnc

Video Journal of Hematological Oncology strives to provide trusted information to improve knowledge of hematological cancers #hemeonc #leusm #lymsm #mdssm #MMSM

@MyelomaUK

Myeloma UK is the only organization in the UK dealing exclusively with the #bloodcancer myeloma.

@IMFmyeloma

Global. Dedicated to improving the quality of life of myeloma patients while working toward prevention

#mpatientmyeloma

A weekly internet radio interview show tracking the thought leaders driving the latest innovations in multiple #myeloma research. #epatient

I hope this helps those of you deciding whether ‘to tweet or not to tweet?’ You could always give it a go and see where it takes you!

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