a ground zero glance at building the
ﬁrst condition-speciﬁc, collaborative
advocacy Twitter feed
an OrganizedWisdom Health project
JEN MCCABE GORMAN
• Cofounder, NextHealth
• Medical Education Evolution
• Tweet all about it
THE FINE PRINT
CreativeCommons Attribution = but you must attribute: Jen McCabe
Noncommercial-Share Alike 3.0 Gorman, OrganizedWisdom Health,
this means you can share it...(copy, if you alter, transform, or build on this,
distribute and transmit and remix it) MUST distribute under same/similar
for NONCOMMERCIAL purposes
(shared for the greater good people, questions?
don’t you feel all warm and fuzzy?) firstname.lastname@example.org
“WHAT ARE THE BENEFITS OF
SOCIAL MEDIA FOR HEALTH?”
if you’re asking yourself this question, your social
media efforts are destined to fail...
THE RIGHT QUESTION(S)
what are the beneﬁts of a SPECIFIC SOCIAL MEDIA tool/site/service
for the health of MY userbase/audience?
(um, who IS my userbase/audience?)
HOW TO FIND YOUR SOCIAL
Don’t assume you know how users/
consumers are talking about the space
you want to address.
GO FISH! Find out what terms they’re
using, what slang, and how often this
shows up in search! results!
we knew we wanted a depression-oriented initiative, with bipolar
did web searches using 3 keywords: depression, bipolar (BPD), and
major depression (MDD)
searched using Twitter, Facebook, YouTube, Flickr, Google, Google Blog
‘depression’ with most results (2x), bipolar second most ‘popular’
ALSO ASK YOURSELF...
engage across professional forceﬁelds?
how does X social media tool/site/service help connect patients and
or does it connect providers and providers? (Sermo, Ozmosis)
or people who are patients and people who are patients?
(PatientsLikeMe, CureTogether, SugarStats, TuDiabetes)
Health and medical ‘tweets’ (people who use Twitter regularly)
including both providers and patients, are increasingly using Twitter to
converse about illness, injury, treatment, and recovery.
Good opening slide to break
beneﬁts of social media channel
‘gently’ to the rest of your
Be diplomatic when introducing
these channels. No one wants
to feel late to the party.
OUR ‘PREHISTORIC’ STRAGEGY
launch “PolarWisdom” feed (1.15.09) - begin tweeting (Jen+Emily)
announce feed on Twitter (Jen, Unity at personal feeds @jenmccabegorman,
@unitystoakes, and Unity at OW feed @organizedwisdom)
add self-identiﬁed depression, bipolar, psych, mood, health/medical tweets to
looked to recruit external doc; decided to go with our Medical Director
Scott Pearlman, MD
after action review = ask Twitter community for feedback
WHAT WILL IT DO?
“You’ll be able to read the latest doc-reviewed search results
from OrganizedWisdom Health related to depression, but
you’ll also be able to take quizzes and share other resources.”
0-400 followers in less than 8 weeks
NICE TO TWEET YOU.
let’s take a closer look at how
WHAT QUESTIONS DID WE
how many Twitter feeds do we need? (depression, bipolar, MDD)
what content do we use (already available WC?)
how do we get followers/who do we want to follow?
who’s responsible for care and feeding?
how are we gonna do this (process)?
what type of stuff should we be tweeting?
how should we skin it? special design?
how should we make it interesting, authentic, valuable, yadda yadda?
OUR SOCIAL MEDIA SOUL
beneﬁts of using Twitter to connect with our
WHO IS OUR AUDIENCE?
WHAT DO THEY DO?
“our audience is anyone searching for health information. It is self-
segmented by search topic/WC/category. They segment themselves,
but if they are searching they are our audience.”
Quantcast.com for details on current demographics
HEALTH 2.0 = ?
health content = forming partnership, conversation, between patient
and provider, or patient and patient, or provider and provider, or well...
yeah. it’s a community thing
WHAT KIND OF CONTENT?
where is most need for advocacy - light in the tunnel tweeting?
mental illness/mood disorders - stigma
depression does not deﬁne you
TO TWEET OR
NOT TO TWEET....
ﬁrst, we aim to reduce stigma attached to living w/conditions. If
you’re a cancer survivor, you’re celebrated.
If you’re a survivor of a depressive illness, you’re
DEPRESSION IS A PART OF
WHO YOU ARE.
IT DOES NOT DEFINE
WHAT I TWEET
twitter helps reframe healthcare research, news and content in terms of
personal, n=1 context
how does this news/journal article impact me if I have bipolar depression (or
know someone who does?)
what kind of resources are available for caregivers? survivors?
what is the latest research on medication development, clinical trials, and side
how do I advocate for myself by learning more about my condition?
“DEPRESSIVE ILLNESSES ARE OFTEN TREATABLE,
THIS FEED IS ABOUT SELF-FULFILLMENT IN THE FACE
OF DEPRESSION -
ABOUT LIVING WITH THE CONDITION RATHER THAN
WE WANT TO ADVOCATE FOR YOUR PERSONAL AND
DEPRESSIVE DISORDERS ARE MANAGEABLE ILLNESSES
FOR 70-90 PERCENT OF PATIENTS.
IT DOESN’T HAVE TO COMPLETELY TAKE OVER YOUR LIFE.
WE ALSO WANT TO GENERATE DISCUSSION.
YOUR EXPERIENCES CAN BE GENERATIVE FOR OTHERS.
WE WANT THIS COMMUNITY TO SUPPORT
LIFE GOALS THAT INTEGRATE A
TREATMENT-CENTRIC, RATHER THAN AN
YOU CAN ALSO
BY SENDING A DM TO
OUR GUIDES WILL HAND CRAFT A SEARCH RESULT
BASED ON YOUR SPECIFIC NEED.
AFTER IT’S APPROVED BY OUR MEDICAL TEAM, WE’LL
PUBLISH IT ON @POLARWISDOM.
CONVERSATIONAL ASPECTS OF LIVING
WITH DEPRESSION USING TWITTER,
A COMMUNITY FORUM FOR PERSONAL
UPDATES WHICH SUPPORTS RECOGNITION
OF THE CATHARTIC EFFECTS OF
TALKING (AND TWEETING) ABOUT LIVING
OUR TWITTER APPROACH MIRRORS
THE CLINICAL APPROACH
“BRIEF SOLUTION ORIENTED”
FOCUSED ON WHAT YOU CAN DO NOW
MAKE YOUR LIFE BETTER. Consider real-world, brick and
mortar care when designing your
social media strategy.
Our Twitterfeed @polarwisdom
approach (and all our
TwitterWisdom accounts in fact)
are based on ACTUAL CLINICAL
TREATMENT MODALITIES in
Depression tends to be an episodic,
isolated illness, with signiﬁcant time
Twitter is a 'safe' at-will forum to share
personal, subjective information about
living well with depression.
It's experiential narrative, shared, in
short, soundbite format.
Journaling, for example, may feel to
intense for someone in the throes of
mania. A tweet, however, is easy to ﬁre
IN OTHER WORDS...
if tweeting about something you’re dealing with helps you get
through the day, @polarwisdom wants to help you do that.
WAIT A MINUTE...
this would work for more than just the BPD community, right?
TwitterWisdom is an internal initiative, composed of
various condition-speciﬁc accounts, to use ‘real time’
social media tool Twitter.com to promote healthy living
by populating a daily tweetstream with news, links, commentary,
quizzes, quotes, research, and WisdomCards
Although Twitter.com may seem like a very broad-
spectrum qualitative tool, OrganizedWisdom is a
very metrics-oriented organization.
Our ROWE (all-virtual) work environment means
our team is used to communicating very
effectively using social media and web-based
This isn't just a “feel-good, slap up some content”
feed - we have developed quantitative
performance metrics for TwitterWisdom.
2 TYPES OF CONTENT
WHERE TO GET FODDER
INTERNAL (hot!): quizzes, slideshows, FAQs
EXTERNAL: Event - staff member attending? livetweeting?
EXTERNAL: Blogs (also internal)
EXTERNAL: Tweeted links
EXTERNAL: News/current events
5S THEORY OF
skip = move on to next one
• The 5s Theory of Content
March 2009 by Rajesh Setty,
quot;Life Beyond Codequot; blog.
scan = look for highlights, move on
• You want to hit the spread -
where people are touched quot;so
much they voluntarily spread it
stop = thank you for triggering thinking!
save = and revisit + times in the future
spread = share it for you
HOW DO WE TRAIN THE
TwitterWisdom FAQs (mission, goals, process) V1.0, 2.0 - composed
by Jen McCabe Gorman
Twitter101 Class (open to anyone in the organization)
Editorial Calendar review, discussion (monthly phone call, real-time
ATM chats as needed, PlanHQ)
‘teaching moments’ using Google chat, Twitter, Bitly
internal team strategy chat; best practices, examples
Weekly topics that are broad-themed (BPD
and pregnancy) are combined with weekly
features (for example, Monday’s recurring
“things you always wanted to know about” =
Then we pull content from internal and
external sources to generate conversation.
SECRET SAUCE =
D (data gathering) = reading email, scanning news %
P (processing) = ﬁnding relevant link %
S (synthesis) = reading the article, thinking about who’s interested
in this research, where to post it, do I need it %
Pick a link from your
R (redistribution) = tweet the link %
• email inbox (say
MEDPAGE). Here’s DPSR in
action...where do you
think you should spend
the most and least time?
DPSR PROCESS SPECIFICS =
select content area (internal/external); Ex = WisdomCard
post link to target WisdomCard using Bitly - shorten, ‘sandwich’ with
post follow up comment relating to why WisdomCard is important
(weekly editorial issue? hot news? twitter convo?)
try to ﬁnd news that supports, questions WisdomCard
tweet news links (1-10) using Bitly
HOW TO ASSESS UTILITY =
QUICK & DIRTY
if of interest to one of your followers (synthesis), include @name
and comment (cc)
use TwitterSearch keywords for WisdomCard terms to ﬁnd tweets
who may like related tweetstream (follow, address as above)
BEST PRACTICE = QUANT
Dell makes 1M using Twitter...in 18 mos
Blendtees “Will It Blend?” YouTube campaign drives 5x increase in
EBM is all about
How could a health
organization do any
Without quant support
you make a weak cases.
BENCHMARKS AND PAA
PAA = pre action assessment (military)
obvious stats = ‘public face’ - Facebook fans, Twitter followers if you
got ‘em, Digg links, existing web trafﬁc/pageviews
cloudy stats = your ‘kimono’ - SEO rankings, CrunchBase, referrals,
customer satisfaction, other biz data
ROI/benchmarks = what are you using now? pageviews? unique
visitors? Goog analytics?
Passive ‘monitoring’ of
Twitter - failboat. But if
you must learn the ropes
silently, please do have a
plan in place to
participate. You’ll be shut
out by signing up and not
IF YOU’RE INTIMIDATED...
default to tweetstream ‘lurking’
OPEN GOWN =
HOW WE SHARE DATA
• ﬁrst weekly team strategy • alsoselected quotes, events,
call of the month ‘highlights,’ star followers
EVERYONE gets update on
• ALL ITEMS housed in
public, ‘available to all’
primary staff member working docs hosted in
responsible for cloud (Google docs)
• anyonecan contribute,
shares followers, DMs, RTs,
anyone can take notes, see
exec team feedback
BUT HOW MUCH DOES IT
COST OF DOING BUSINESS:
@organizedwisdom we consider social media participation a cost of
doing business (part of my job description)
daily COBD line - organizational goal (1/4) = ‘Trafﬁc & Engagement’
one primary staffer, support from 3 others (per feed)
Ok. I’m sold. I’ll put a
team member in charge
of t weeting for our org.
But how do I measure her
WANNA TAKE A PEEK
BUT HOW DO YOU
Using what you
track, manage what
We track pageviews
using Bitly.com and
pageviews/visitor(a) x visitors/tweet(b) x tweets/month(c)
Without ret weets and
conversations, it’s just
about slamming your feed
We’re working to lower
our ratio of t weets/
responses from 10:1 to 3:1.
NOT JUST ABOUT PAGEVIEWS.
go for link-love via RTs
EASY KEYWORD TRACKING
Twittersearch/Summize = daily. Org name, staff member(s), org
Google Insights for search = monthly, prior to team call, creating
Google Trends/Analytics = useful for combo terms, phrases
NOM NOM NOM
http://twitter.com/ow_mental_healt (mental health)
• We’re also trying
automated ‘s treaming’
update feeds that
autopopulate when new
• subject-area WCs are
published. Shocker -
these aren’t nearly as
popular; more like
http://twitter.com/ow_womens_health (womens health)
BUT HOW WILL IT FEED OUR
Roi. Roi. Roi.
THE REVENUE QUESTION
We won't be supporting bits or bytes of
'paid' content or ads on @polarwisdom
(yet) - although we havenʼt ruled this
Outside companies don't pay me to
how does it make money?
• I tweet for myself @jenmccabegorman
and for OrganizedWisdom.com
AGAIN - WRONG QUESTION
Answer = both are vital.
How do you generate
value for users, and for
the company, using a
pop quiz - which is more important...
• social media comm
feed, designed by President and cofounder Unity Stoakes, Medical
Director Scott Pearlman, MD, and Chief Patient Advocate Jen McCabe
Gorman (with team input throughout!) will act as a platform for
content within a supportive online community
we, the company, will collaborate with health and medical
organizations interested in supporting the community oriented feed
BUT HOW WILL PEOPLE
KNOW WHO ‘WE’ ARE?
decided NOT to ‘require’ employees to use personal twitterfeeds, so couldn’t
use the @naming convention
use #owﬁrstname to identify tweets/team member
harnesses existing Twitter convention of using hashtags to identify events,
keywords, etc and track conversations
@polarwisdom tweets = #owjen, #owemily, #ownicole, #owamy, #owscott
team members can CHOOSE to share personal tweetstream if they so desire,
or keep it separate from ‘pro’ tweeting
LAST GASP OF RESISTANCE
but what if somebody says something BAD about us?!
SWALLOW. DIGEST. RESPOND.
so does looking at your org through social media’s collective
Twitter is NOT just for
Health 2.0 type
It’s for patients! It’s for
for any docs in the room...or those who love ‘em
MICHAEL LARA MD=
HOW I USE TWITTER
“I’ve found Twitter to be a useful adjunct to my private practice”
3 categories: info collection, info sharing, DIRECT PATIENT CARE
doc-doc re: non-urgent matters, ofﬁce staff-patient appt. reminders
(gee, that sounds as useful as the Pony Express)
THE GOOD DOC RE: WHAT
NOT TO TWEET
to communicate directly with patients and their families (what??)
to communicate re: ‘urgent’ or ‘timely’ matters (wait, can’t I choose the
channel that reaches me most quickly?)
to answer inquiries re: ‘details about patient care’
BUT WAIT - JOHN SHARP
slideshare presentation “Digital Customer”
healthcare uses for Twitter = “updating families during
procedures” (slide 14/33)
also, “emergency communication”
SO WHO DO WE BELIEVE?
and why does the dichotomy matter?
“EVERYONE SHOULD HAVE A
BASIC UNDERSTANDING OF HOW TWITTER
WORKS. EVERY TEAM MEMBER, FOR EXAMPLE,
SHOULD UNDERSTAND THE DIFFERENCE
BETWEEN A DIRECT
THE PUBLIC TIMELINE.
OUR RULE IS TO TWEET ONLY VIA DIRECT
BUT ASSUME THAT THE
TWEET WILL BE ON THE
The “Grandma Use” Rule=
If you wouldn’t say it out
loud to your
grandmother, or a
patient’s family member,
you probably shouldn’t
t weet it.
TRANSPARENCY ON TWITTER
via the public timeline
Your team MUST know the
risks and beneﬁts of using a
given social media channel.
And your organization
MUST have a coherent
strategy on transparency of
those communicating on
DO NOT ASSUME ANY
TWEETS ARE PRIVATE
DM or no DM...if you remember 2 words about using social
media, remember “public domain.”
“ANOTHER TWITTER TENET IS
UNDERSTANDING HOW/WHEN KEY TEAM
MEMBERS INTEGRATE TWITTER INTO THEIR
DISTRIBUTE TWEETS VIA
TWEETLATER Or schedule them using
I put hour to t weet an
item right onto our
WHO’S LISTENING WHEN
WE’RE OFF DUTY?
people don’t tweet 24.7.
well, cough cough, MOST don’t... We are NOT treating
people on Twitter, nor are
treatment. However, you
should give people access
to a resource that CAN
help treat them (911,
suicide helpline, etc).
After Liz gave this
that same Friday we
started letting t weets
know who was on
‘weekend on call’ and how
to reach us (via email).
LET FOLLOWERS KNOW
YOUR TWITTER SCHEDULE
via @lizscherer - are you present all the time? Tweet 9-5, M-F?
AND THEY ALL LIVED
HEALTHILY EVER AFTER.
not quite. but this should be the goal of social media for health.
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NICE TO TWEET YOU
for more on analyzing efﬁcacy, ROI, and tweetstream/pageview
conversion analysis via TwitterWisdom.