The document discusses the Michael J. Fox Foundation's use of social media in clinical research and outreach. It provides an overview of the Foundation's mission and research funding. It then discusses how the Foundation uses social media for listening and engagement with patients, community outreach campaigns, and hosting Twitter chats. Appendices provide details on the anatomy of Twitter and best practices for using Twitter.

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THE MICHAEL J. FOX
FOUNDATION FOR
PARKINSON’S
RESEARCH
Use of Social Media in Clinical
Research

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• Listening and Engagement
• Community Outreach
• Appendix
• Anatomy of Twitter
• Question and Answer
AGENDA

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Our Mission
To accelerate the development of improved therapies, and
ultimately a cure, for people living with Parkinson’s disease today.
Vital Stats
» Founded in 2000 by actor Michael J. Fox
» Public charity
» 58,000 donors in 2013
(individuals, corporations, nonprofits)
» No chapters: team of 90 based in NYC
» 1,500 grassroots fundraisers reaching
100,000 supporters worldwide in 2013
» $450 million in research funded to date
» $71 million in research grants funded in 2013
» 1,300 projects funded to date
» 450 active grants in current portfolio
» 30% of funded project are outside of the U.S.
» Fund academics, biotechs and pharma
THE MICHAEL J. FOX FOUNDATION IS
THE WORLD’S LARGEST NONPROFIT
FUNDER OF PARKINSON'S RESEARCH

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PROVIDE OPPORTUNITIES TO
PARTICIPATE IN RESEARCH
Parkinson’s Progression Markers Initiative
$60 million observational study to identify one or more biomarkers of PD progression
» Largest PD biomarker collaboration including MJFF and fifteen industry partners
» Original cohort enrollment complete (423 PD, 196 controls)
» Launched recruitment of 100-subject prodromal cohort in 2013
» Launched recruitment of genetics cohort studying alpha-synuclein and LRRK2 in 2014
Fox Trial Finder
Online clinical trials matching and patient engagement tool
» 27,000+ registered volunteers (75% PD, 25% controls)
» 300 actively recruiting trials at 700+ sites worldwide
» Available to volunteers and researchers worldwide and in five languages
» Active partnerships with leaders in PD research in Austria, Germany, France, Italy and Spain

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Scale outreach to the patient
community
• Educate on need for clinical trial
participants
• Demystify the volunteer experience
• Provide opportunities to participate in
research
• Encourage Fox Trial Finder
registration
• Promote trials through geotargeted
outreach
WHY MJFF USES SOCIAL MEDIA

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LISTENING AND
ENGAGEMENT

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LISTEN TO YOUR COMMUNITY
Identify where your community congregates on social media and listen to what they are saying.
Provide feedback and encouragement where appropriate. Be prepared for negative responses.

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Ask questions, share opportunities and be prepared to provide your community with a platform
to share their experience.
AMPLIFY COMMUNITY EXPERIENCE

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We encouraged this user to take pictures during her trial visit. This post was a result of that
request.
ASK YOUR VOLUNTEERS TO SHARE

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Originally shared on Instagram, we repurposed this photo with our Facebook audience.
REPURPOSE CONTENT

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EXPERIMENT: TRIAL AND ERROR
Not every social initiative we launch is successful. We introduced a hashtag, #TrialsFair, during
our NYC Trials Fair event and only the Foundation contributed tweets.

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COMMUNITY
OUTREACH

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Supporting www.foxtrialfinder.org
• To celebrate Michael J. Fox’s 51st birthday
on June 9, 2012, we asked our Facebook
fans to recruit 5 friends to sign up for Fox
Trial Finder, the Foundation’s clinical trial
online matching tool.
• The campaign ran for 3 days and was
supported by Facebook and Twitter
updates.
MICHAEL J. FOX’S BIRTHDAY

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Cross channel marketing
• Updates supporting the 3-day campaign
were viewed by 128,353 Facebook users
and received a total of 4,899 likes, 534
comments, and 712 shares.
• Facebook and Twitter directed over 1,800
visitors to Fox Trial Finder and led to 185
profiles created
• 65% of registrants had Parkinson’s
disease
MICHAEL J. FOX’S BIRTHDAY

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Best Practices
• Be social
• Use social concepts and contests,
like “Caption this:”
• Talk like your audience: No jargon
• Share updates on your progress and
thank your community
MICHAEL J. FOX’S BIRTHDAY

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Hosted December 2013 with Forbes
journalist Matthew Herper
• Featured representatives
from NINDS, Alzheimer’s Prevention Initiative,
the Institute for Neurological Disorders (IND),
and experts from The Michael J. Fox
Foundation Clinical Trial Strategy team.
• 93 individuals shared 626 tweets around the
subject of clinical trial recruitment and
generated 4,511,504 impressions.
• The chat trended in the United States. A trend
on Twitter refers to a hashtag-driven topic that
is immediately popular at a particular time.
TWITTER CHAT: #FOXCHAT

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Best practices
• Select a moderator who is not only
knowledgeable but has a large audience
• Prepare 8 – 10 questions in advance, give your
audience 2 – 4 minutes to respond to each
question or topic
• Prior to scheduling and promoting your chat,
identify influential community members and
make sure they can participate
• Promote your chat outside of Twitter, share on
your website and email lists
• Use the last 5 minutes of the chat for
participants to share materials and self promote
their work.
TWITTER CHAT: #FOXCHAT

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G-PPMI outreach to Jewish
Communities
• Networks we identified:
• Mommy bloggers
• Community centers
• Meetup.com groups
• ShulLists
• Best Practices
• Make it easy for folks to help
• Draft social copy
• Track their activity
• Use tracked links or forms
• Build a relationship
• Report back on progress and
impact
• Thank them for their help!
FIND BLOGGERS AND INFLUENCERS

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APPENDIX

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• Twitter is a real-time information network
that connects you to the latest stories,
ideas, opinions and news about what you
find interesting
• At the heart of Twitter are small bursts of
information called Tweets.
• Each Tweet is 140 characters long
WHAT IS TWITTER?

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ANATOMY OF TWITTER: DESKTOP
TIMELINE
News feed or timeline
Write a post
Write a post
Suggestions on
accounts to follow

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ANATOMY OF TWITTER: MOBILE
TIMELINE
News feed or timeline
Write a post

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ANATOMY OF TWITTER: A TWEET
User name and Twitter Handle
Time stamp and date posted
1-button to retweet a
message with comment
Favorite a tweet to demonstrate that
you like it, you think it is funny, you
agree with the sentiment or to
bookmark it for easy access

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ANATOMY OF TWITTER: HASHTAG
The # symbol, called a hashtag, is used to mark keywords
or topics in a Tweet. It was created organically by Twitter
users as a way to categorize messages.

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ANATOMY OF A TWEET: RETWEET
RT = Retweet.
The source of the original
tweet.
Link preview

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ANATOMY OF A TWEET: MODIFIED
RETWEET MT = Modified Tweet. The
original tweet has been
edited to fit 140 characters
and/or meaning.
The author’s initials. Used often on
accounts that are managed by a team.

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Only people who follow @MichaelJFoxOrg and @Overjoyed4life will see this tweet.
ANATOMY OF A TWEET: @REPLY

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When starting tweets with a @UserName, place a period before the name to ensure it displays
in your followers timeline.
ANATOMY OF A TWEET: .@MENTION

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• Twitter’s search function will highlight
relevant accounts and match based on
keywords
• Search [Keyword] and “Twitter” on Google
to quickly identify user accounts
ANATOMY OF TWITTER: SEARCH

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Follow Brian Fiske, VP of Research Operations at The Foundation: @bkfiske
• Choose a simple username
• Select a clear hi-res photo
• To include in your bio:
• Job title, @[Twitter handle of
employer]
• Interests (Bio, Chemistry, Running)
• Link to your LinkedIn profile or
professional bio
• You can include. But don’t feel obligated:
• Tweets do not reflect my employer
• RTs are not endorsements
GET STARTED: REGISTER

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You don’t have to tweet
For example, my dad, @SkiChas, uses Twitter as a news source. He doesn’t tweet, but he
follows accounts that offer relevant information, like the ski report.
• Follow relevant accounts:
• Media
• Patient communities
• Industry peers
• Regulatory organizations
• Thought leaders
• When you’re ready to start tweeting:
• Respond to comments with your
own opinion or ask questions
GET STARTED: FOLLOW ALONG