#pctgr

@MichaelJFoxOrg

THE MICHAEL J. FOX FOUNDATION FOR PARKINSON’S RESEARCH

Use of Social Media in Clinical Research

#pctgr

@MichaelJFoxOrg 2

• Listening and Engagement

• Community Outreach

• Appendix

• Anatomy of Twitter

• Question and Answer

AGENDA

#pctgr

@MichaelJFoxOrg 3

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

#pctgr

@MichaelJFoxOrg 4

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

#pctgr

@MichaelJFoxOrg 5

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

#pctgr

@MichaelJFoxOrg

LISTENING AND ENGAGEMENT

#pctgr

@MichaelJFoxOrg 7

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.

#pctgr

@MichaelJFoxOrg 8

Ask questions, share opportunities and be prepared to provide your community with a platform

to share their experience.

AMPLIFY COMMUNITY EXPERIENCE

#pctgr

@MichaelJFoxOrg 9

We encouraged this user to take pictures during her trial visit. This post was a result of that

request.

ASK YOUR VOLUNTEERS TO SHARE

#pctgr

@MichaelJFoxOrg 10

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

REPURPOSE CONTENT

#pctgr

@MichaelJFoxOrg 11

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.

#pctgr

@MichaelJFoxOrg

COMMUNITY OUTREACH

#pctgr

@MichaelJFoxOrg 13

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

#pctgr

@MichaelJFoxOrg 14

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

#pctgr

@MichaelJFoxOrg 15

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

#pctgr

@MichaelJFoxOrg 16

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

#pctgr

@MichaelJFoxOrg 17

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

#pctgr

@MichaelJFoxOrg 18

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

#pctgr

@MichaelJFoxOrg

APPENDIX

#pctgr

@MichaelJFoxOrg 20

• 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?

#pctgr

@MichaelJFoxOrg 21

ANATOMY OF TWITTER: DESKTOP

TIMELINE

News feed or timeline

Write a post

Write a post

Suggestions on

accounts to follow

#pctgr

@MichaelJFoxOrg 22 22

ANATOMY OF TWITTER: MOBILE

TIMELINE

News feed or timeline

Write a post

#pctgr

@MichaelJFoxOrg 23

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

#pctgr

@MichaelJFoxOrg 24

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.

#pctgr

@MichaelJFoxOrg 25

ANATOMY OF A TWEET: RETWEET

RT = Retweet.

The source of the original

tweet.

Link preview

#pctgr

@MichaelJFoxOrg 26

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.

#pctgr

@MichaelJFoxOrg 27

Only people who follow @MichaelJFoxOrg and @Overjoyed4life will see this tweet.

ANATOMY OF A TWEET: @REPLY

#pctgr

@MichaelJFoxOrg 28

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

#pctgr

@MichaelJFoxOrg 29

• 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

#pctgr

@MichaelJFoxOrg 30

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

#pctgr

@MichaelJFoxOrg 31

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