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Social Media for Patient Recruitment
Centerwatch/iiBig Forum on
Optimizing Clinical Research Performance
17 October 2013
Mary K.D. D’Rozario
MSCR, CCRP, RAC, CCRA
President / Clinical Research Consultant
Clinical Research Performance, Inc.
mary.drozario@crplink.com
@marydrozario
marydrozario
marykddrozario
1
Outcomes

 Understand changing landscape.
 Understand regulation and legal issues.
 Identify engagement.
 Evaluate the social sales pitch.
 Use tools and channels for social content.

2
Pharma and Social Media:
Changing Landscape

3
2008 – 2012 Change in Social Media Marketing
as Percent of Marketing Spending

•

USA marketing
 9% - 20%

•

Pharma Industry
 4% - 4%

But it is all about to change…

4
Internet Promotion Policy

FDASIA Title XI. Section 1121: Internet Promotion Policy
 Regulation required by July 2014

Not mandated to give clinical research industry any
regulation.
BUT:

Will increase expectations as pharma
becomes social media savvy with product
marketing.
5
Rest of the regulatory landscape… there be
dragons:

•

Social Companies
 Internal and shared communication platforms.

•

Patient Recruitment

•

Communication Deviations, such as:
 Use of personal communication devices.
 Use of personal social media contacts.

•

Everything Else
6
FDA Regulation & Other Legal Issues

*I am not a lawyer. I don’t even play one on
TV.

7
Social Media Advertising Has Special Issues

•

Is your IRB comfortable with social media?

•

Is your lawyer on board?

•

How will you handle replies?
 Text and Route
 Out of business hours

•

How will you protect the information of those with
whom you interact?
 Once you create a health data set, you have HIPAA
responsibilities.

8
Regulatory Compliance: What requires IRB
Review

• No:






Financial or business articles or releases.
“Dear Doctor” letters.
A simple list of the study name.
General disease information or practice information.
Material generated without the practice’s control.
• Patient comments.

• Yes:

 Anything about the practice’s research activities.
 Anything communicating information about a study.
OHRP Guidance on Institutional Review Board Review of Clinical Trial Websites,
20 September 2005
http://www.hhs.gov/ohrp/policy/clinicaltrials.html
9
Regulatory Compliance: Process

•

Submit all posts and reply spreadsheet to IRB.

•

Document all posts and replies.
 What method does your IRB require?
 What method does the sponsor require?

10
Other Legal Issues

• If you host social media…
 …you may have responsibilities as a publisher.

• General liability
 How will you reply to disgruntled or slanderous patients?
 Do you have a staff social media policy?

• FTC .com Guidelines – online advertising compliance
11
It’s All About Engagement

12
Engagement is…

Acknowledging that patients are people first and
meeting them where they live.

13
Social Media is…
Social, with media.
It is not easy.

It is not free.
And…
Not all digital media is social.

14
If you post your own media:

•

Know your audience.
 Your audience are “lurkers”

•

Know what you are saying means.
 To your audience, and to the wider world.

•

Be prepared for replies.

•

Give more than you ask- provide value.

•

Your tips?
15
Some General Principles of Advertising

•

Determine your goal
 Who do you want to reach?
 What do you want them to do?

•

Find your audience





Is your audience segmented?
Which segment is the priority?
Where do they hang out?
Who do they follow?

16
Evaluate the Social Media Sales Pitch

17
Does it integrate with your patient recruitment
and retention plan?
“Social media is an obvious consideration for patient
recruitment -- the patients are already there
discussing their healthcare options, costs, and
concerns. If nothing else, social listening presents a
golden opportunity to learn and apply lessons to trial
messaging. ” – Lani Hashimoto

Does it involve social listening?

18
Is it really social… can it defy Dunbar’s
number?

•

Symbols

•

Signs

•

Rules

•

Culture

Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization: Eclipse your
competition by leveraging social media. New York: McGrawHill
19
“If your community cannot survive in
a bulletin board, it will not survive
anywhere.”
-Scott Wilder, Intuit VP of Communities

Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization: Eclipse your
competition by leveraging social media. New York: McGrawHill
20
Where are the users coming from?

•

What is the path from life to this community?

•

Would your target patients follow that path?

•

Does the path cross a point where you are
already visible?

21
Tools and Channels for Social Media

(Great for building material for digital media
and traditional advertising too.)

22
The Heathcare Hashtag Project
http://www.symplur.com/healthcare-hashtags/

23
Google Keyword Tool

*Instructions for accessing tool in resources at end of slides.

24
Places to Listen (and possibly message)

25
Familiar Channels

•

YouTube, SlideShare

•

Facebook, Google+

•

Twitter, Pinterest, Tumblr

•

Patient Forums

•

Craigslist

26
Messaging Principles

•

Make it simple.
 One click rule.

•

Give them somewhere to go.
 Website, facebook page, phone number…
 What do you want them to do?

•

Give them a reason to pay attention to you.
 Consistent stream of information.

27
Twitter Case Study: Mayo Clinic

28
Facebook Case Study: MD Anderson

29
Pinterest Case Study: St. Jude Children’s
Research Hospital

30
YouTube Case Study: UNC Hospitals

•

http://www.youtube.com/watch?v=gokYh23d-9w

31
Resources

32
Social Messaging Content – Further Reading
Ann Handley & C.C. Chapman. (2012). Content Rules: How to create
killer blogs, podcasts, videos, ebooks, webinars (and more) that engage
customers and ignite your business (New Rules Social Media Series).
Hoboken, NJ: John Wiley & Sons, Inc.

Robert W. Bly. (2007). The Copywriter’s Handbook: A Step-by-Step Guide
to Writing Copy That Sells. New York, NY: Henry Holt and Company, LLC

Randy Olson. (2009). Don’t Be Such a Scientist: Talking Substance in an
Age of Style. Washington: Island Press

33
Social Media Tools

•

Hootsuite.com

•

Klout.com – free quick-and-dirty measure of
social media impact

34
Social Companies – Further Reading
Mark Fidelman. (2013). Socialized!: How the Most Successful
Businesses Harness the Power of Social. Brookline, MA:
Bibliomotion, Inc.

Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization:
Eclipse your competition by leveraging social media. New York:
McGrawHill

IMB. (2012). IBM executive brief: social business behavior. [Need
to search on google and provide IBM information to access white
paper.

35
Social Media for Advertising – Further Reading
Jennifer Grappone & Gradiva Couzin, (2010). Search Engine Optimization:
An Hour A Day. Indianapolis, IN: Wiley Publishing

There are a ton of good books and a ton of good free information, this just
happens to be one good book I read.

Cami Gearhart, JD. (December 2012). IRB Review of the Use of Social
Media in Research. The Monitor.
Tip: Follow some SEO experts on Twitter
to get advice in manageable chunks.
Oglivy Washington & The Center for Social Impact Communication at
Georgetown University. (November 2010). Using Social Media Platforms
to Amplify Public Health Messages. Published at
http://smexchange.ogilvypr.com/wpcontent/uploads/2010/11/OW_SM_WhitePaper.pdf
36
Google KeyWord Tool (part 1)

•
•
•

•

Have a google account and be signed in.
Go to https://adwords.google.com
If you have not already signed in for adwords, it
will ask you to confirm your location and time
zone. It will then tell you that you can’t buy an ad
until after you give them payment
information. (Don’t worry- you won’t
“accidentally” buy an ad).
Now you will be on the adwords dashboard. On
the green bar click on “tools and analysis” and
then click on “keyword planner.”

37
Google KeyWord Tool (part 2)

•

•

•

Click on the first choice “search for keyword and
ad group ideas”.
Under “your product or service” try a keyword. It
doesn’t have to be a product or service, just any
keyword someone might use that gets to you. I
did “career coach” for an example. Only do one
term at a time- you get WAY more than enough to
think about with each term.
You will see a list of similar “keyword ideas” and
“ad group ideas” on two tabs. Two columns in the
middle are how often someone searches that
word and a word “high, medium, low” for how
many other websites use that word.
38
Questions

39

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Social Media for Patient Recruitment

  • 1. Social Media for Patient Recruitment Centerwatch/iiBig Forum on Optimizing Clinical Research Performance 17 October 2013 Mary K.D. D’Rozario MSCR, CCRP, RAC, CCRA President / Clinical Research Consultant Clinical Research Performance, Inc. mary.drozario@crplink.com @marydrozario marydrozario marykddrozario 1
  • 2. Outcomes  Understand changing landscape.  Understand regulation and legal issues.  Identify engagement.  Evaluate the social sales pitch.  Use tools and channels for social content. 2
  • 3. Pharma and Social Media: Changing Landscape 3
  • 4. 2008 – 2012 Change in Social Media Marketing as Percent of Marketing Spending • USA marketing  9% - 20% • Pharma Industry  4% - 4% But it is all about to change… 4
  • 5. Internet Promotion Policy FDASIA Title XI. Section 1121: Internet Promotion Policy  Regulation required by July 2014 Not mandated to give clinical research industry any regulation. BUT: Will increase expectations as pharma becomes social media savvy with product marketing. 5
  • 6. Rest of the regulatory landscape… there be dragons: • Social Companies  Internal and shared communication platforms. • Patient Recruitment • Communication Deviations, such as:  Use of personal communication devices.  Use of personal social media contacts. • Everything Else 6
  • 7. FDA Regulation & Other Legal Issues *I am not a lawyer. I don’t even play one on TV. 7
  • 8. Social Media Advertising Has Special Issues • Is your IRB comfortable with social media? • Is your lawyer on board? • How will you handle replies?  Text and Route  Out of business hours • How will you protect the information of those with whom you interact?  Once you create a health data set, you have HIPAA responsibilities. 8
  • 9. Regulatory Compliance: What requires IRB Review • No:      Financial or business articles or releases. “Dear Doctor” letters. A simple list of the study name. General disease information or practice information. Material generated without the practice’s control. • Patient comments. • Yes:  Anything about the practice’s research activities.  Anything communicating information about a study. OHRP Guidance on Institutional Review Board Review of Clinical Trial Websites, 20 September 2005 http://www.hhs.gov/ohrp/policy/clinicaltrials.html 9
  • 10. Regulatory Compliance: Process • Submit all posts and reply spreadsheet to IRB. • Document all posts and replies.  What method does your IRB require?  What method does the sponsor require? 10
  • 11. Other Legal Issues • If you host social media…  …you may have responsibilities as a publisher. • General liability  How will you reply to disgruntled or slanderous patients?  Do you have a staff social media policy? • FTC .com Guidelines – online advertising compliance 11
  • 12. It’s All About Engagement 12
  • 13. Engagement is… Acknowledging that patients are people first and meeting them where they live. 13
  • 14. Social Media is… Social, with media. It is not easy. It is not free. And… Not all digital media is social. 14
  • 15. If you post your own media: • Know your audience.  Your audience are “lurkers” • Know what you are saying means.  To your audience, and to the wider world. • Be prepared for replies. • Give more than you ask- provide value. • Your tips? 15
  • 16. Some General Principles of Advertising • Determine your goal  Who do you want to reach?  What do you want them to do? • Find your audience     Is your audience segmented? Which segment is the priority? Where do they hang out? Who do they follow? 16
  • 17. Evaluate the Social Media Sales Pitch 17
  • 18. Does it integrate with your patient recruitment and retention plan? “Social media is an obvious consideration for patient recruitment -- the patients are already there discussing their healthcare options, costs, and concerns. If nothing else, social listening presents a golden opportunity to learn and apply lessons to trial messaging. ” – Lani Hashimoto Does it involve social listening? 18
  • 19. Is it really social… can it defy Dunbar’s number? • Symbols • Signs • Rules • Culture Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization: Eclipse your competition by leveraging social media. New York: McGrawHill 19
  • 20. “If your community cannot survive in a bulletin board, it will not survive anywhere.” -Scott Wilder, Intuit VP of Communities Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization: Eclipse your competition by leveraging social media. New York: McGrawHill 20
  • 21. Where are the users coming from? • What is the path from life to this community? • Would your target patients follow that path? • Does the path cross a point where you are already visible? 21
  • 22. Tools and Channels for Social Media (Great for building material for digital media and traditional advertising too.) 22
  • 23. The Heathcare Hashtag Project http://www.symplur.com/healthcare-hashtags/ 23
  • 24. Google Keyword Tool *Instructions for accessing tool in resources at end of slides. 24
  • 25. Places to Listen (and possibly message) 25
  • 26. Familiar Channels • YouTube, SlideShare • Facebook, Google+ • Twitter, Pinterest, Tumblr • Patient Forums • Craigslist 26
  • 27. Messaging Principles • Make it simple.  One click rule. • Give them somewhere to go.  Website, facebook page, phone number…  What do you want them to do? • Give them a reason to pay attention to you.  Consistent stream of information. 27
  • 28. Twitter Case Study: Mayo Clinic 28
  • 29. Facebook Case Study: MD Anderson 29
  • 30. Pinterest Case Study: St. Jude Children’s Research Hospital 30
  • 31. YouTube Case Study: UNC Hospitals • http://www.youtube.com/watch?v=gokYh23d-9w 31
  • 33. Social Messaging Content – Further Reading Ann Handley & C.C. Chapman. (2012). Content Rules: How to create killer blogs, podcasts, videos, ebooks, webinars (and more) that engage customers and ignite your business (New Rules Social Media Series). Hoboken, NJ: John Wiley & Sons, Inc. Robert W. Bly. (2007). The Copywriter’s Handbook: A Step-by-Step Guide to Writing Copy That Sells. New York, NY: Henry Holt and Company, LLC Randy Olson. (2009). Don’t Be Such a Scientist: Talking Substance in an Age of Style. Washington: Island Press 33
  • 34. Social Media Tools • Hootsuite.com • Klout.com – free quick-and-dirty measure of social media impact 34
  • 35. Social Companies – Further Reading Mark Fidelman. (2013). Socialized!: How the Most Successful Businesses Harness the Power of Social. Brookline, MA: Bibliomotion, Inc. Gossieaux F. & Moran, E.K. (2010.) The hyper-social organization: Eclipse your competition by leveraging social media. New York: McGrawHill IMB. (2012). IBM executive brief: social business behavior. [Need to search on google and provide IBM information to access white paper. 35
  • 36. Social Media for Advertising – Further Reading Jennifer Grappone & Gradiva Couzin, (2010). Search Engine Optimization: An Hour A Day. Indianapolis, IN: Wiley Publishing There are a ton of good books and a ton of good free information, this just happens to be one good book I read. Cami Gearhart, JD. (December 2012). IRB Review of the Use of Social Media in Research. The Monitor. Tip: Follow some SEO experts on Twitter to get advice in manageable chunks. Oglivy Washington & The Center for Social Impact Communication at Georgetown University. (November 2010). Using Social Media Platforms to Amplify Public Health Messages. Published at http://smexchange.ogilvypr.com/wpcontent/uploads/2010/11/OW_SM_WhitePaper.pdf 36
  • 37. Google KeyWord Tool (part 1) • • • • Have a google account and be signed in. Go to https://adwords.google.com If you have not already signed in for adwords, it will ask you to confirm your location and time zone. It will then tell you that you can’t buy an ad until after you give them payment information. (Don’t worry- you won’t “accidentally” buy an ad). Now you will be on the adwords dashboard. On the green bar click on “tools and analysis” and then click on “keyword planner.” 37
  • 38. Google KeyWord Tool (part 2) • • • Click on the first choice “search for keyword and ad group ideas”. Under “your product or service” try a keyword. It doesn’t have to be a product or service, just any keyword someone might use that gets to you. I did “career coach” for an example. Only do one term at a time- you get WAY more than enough to think about with each term. You will see a list of similar “keyword ideas” and “ad group ideas” on two tabs. Two columns in the middle are how often someone searches that word and a word “high, medium, low” for how many other websites use that word. 38