social media in clinical research 101215
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The heart and science of medicine.
UVMHealth.org/MedCenter
Using Social Media to Attract Study Participants
Alexandra Tursi, Social Media [email protected]
Social Media & Health Care
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How many American adults use social networking sites?
A. 43%B. 51%C. 74%D. 95%
Question #1
Answer: C.
74% of adults use any social networking sites. 85% of adults visit a social media site once per week. In fact, 1 in 6 minutes spent online is on Facebook.
Source: Pew Research Center’s Internet & American Life Project
Answer #1
How many people search for health information online?
A. 20%B. 40%C. 60%D. 80%
Question #2
Answer: D.
• 80% of people search for health information online. • 1 in 3 adults go online to figure out a medical condition.• 34% have read someone else’s commentary or
experience about a health or medical issue online.• 18% have gone online to find others who might have
health concerns similar to theirs.
Source: Google, Pew Internet and American Life Project
Answer #2
What are people looking for when they search for health information online?
A. Second opinion from another doctorB. How to cope with a chronic conditionC. Clinical trials informationD. Information to choose a hospital, doctor or medical
facilityE. All of the above
Question #3
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• 300,000 members
• 2,300+ conditions
• 50+ published research studies
• 25 million data points about disease
Patients socializing
Answer: E.
• 42% with chronic condition seek help. • 41% use it to choose a specific doctor.• “Clinical research” is one of the most-searched terms on the Internet.• People who follow hospitals on social media also want
• Updates on treatments, procedures, and technology• Healthcare tips and information• Understanding of the hospital experience• Connect and learn from current and former patients• A forum to ask a question and connect with doctors
Source: PwC HRI Social Media Consumer Survey 2012.
Answer #3
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Clinical Trials
People are also looking for…
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• ClinicalTrials.gov• WHO International Clinical
Trials Registry• Center for Information and
Study on Clinical Research Participation
• Clinical trial recruitment sites:– ClinicalConnection– TrialReach– EmergingMed– CureLauncher– Cure Forward– CureClick
Online Resources
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Custom Websites
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“Patients with rare diseases tend to find one another and connect because they are searching for information and
support,” says Mayo Clinic’s Marysia Tweet, M.D. “Studies of rare diseases often are underfunded, and people with
these conditions are quite motivated.”
Finding Patients with Rare Diseases
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A New Approach
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• 1.3 billion users on Facebook• 400 million users on Instagram• 400 million users on LinkedIn• 316 million users on Twitter
Social Media Reach
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Social media ecosystem
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Changing media environment
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Change in US ad spend
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The place to be!
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Fears and uncertainties abound…
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Myth RealityRegulations prohibit use of social media. No regulations or case laws that govern what media
may be used to reach subjects.The target demographic needs to be under 50 years old.
Digital media reaches all age groups! 71% of those 50-64 look online for health information.
The new digital and social media are expensive. Digital, social, and mobile media are more cost-effective than mass media. Many options!
The new media are only appropriate for North America.
The world is online. Only prohibition are countries where direct-to-patient solicitation is not allowed.
Digital media cannot be contextually or geographically targeted.
Digital media is among the most targeted media available. You can get granular!
Online patient communities are not representative of disease sufferers..
Studies show that they are in fact representative.
Digital media only means banner ads tied to keyword searches.
Any initiative that can be managed via traditional media can be accomplished online.
Myth-busting
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“…any recruitment of or advertising to research subjects through social media must still comply with applicable FDA regulations related to human subject research. This means adherence to 21 CFR §56 as explained in the FDA’s longstanding document titled, ‘Recruiting Study Subjects – Information Sheet, Guidance for Institutional Review Boards and Clinical Investigators.” This also means that some forms of social media, such as Twitter, may not be appropriate to advertise certain clinical trials that require the dissemination of more complex information.”
Source: Internet/Social Media Platforms with Character Space Limitations – Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices
FDA draft guidance
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How you can use a digital approach
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Integrated Approach
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1. Audit digital and social channels to find your target audience online.
2. Monitor existing online conversations on the disease area of interest (e.g., Healthcare Hashtag Project).
3. Identify what patients are talking about and how they are talking about it – “patient speak.”
4. Map your messages to the audience and channels.5. Pinpoint influencers who could help raise awareness.6. Develop creative concepts for messaging and imagery.
Strategy Development
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1. Drive traffic to a trial website or landing page– Place social ads on the sites and social media platforms that
your target audience frequents
2. Partner with advocacy groups and patient communities, Facebook pages/groups, and other online resources
3. Engage influencers, opinion leaders, and ambassadors to raise awareness
Campaign Implementation
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How we are doing it
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Social Media Plan for “Fecal Microbiota Transplant in the Treatment of Ulcerative Colitis.”
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Goal & Tactic
• Recruit 20 people clinical trial for “Fecal Microbiota Transplant in the Treatment of Ulcerative Colitis.”
• Build the funnel via social media.
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Social Media & Web Tactics
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• Create online sign-up form and landing page – all social media will drive to this landing page.
• Homepage web slider• Link to new landing page
from Crohn’s disease section
Web
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• Blog (medcenterblog.uvmhealth.org) • Facebook (/theuniversityofvermontmedicalcenter)• Twitter (/uvmmedcenter)• Google+ (/theuniversityofvermontmedicalcenter)
Social Media Channels
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• Blog article about the trial– Include link to online sign-up for, or embed form into blog. – Promote blog article via Facebook, Twitter, and Google+.
• Guest blog on ThePowerofPoop.com.• Guest e-news article with Crohn’s & Colitis Foundation.• Outreach to key bloggers and web resources.
Blog
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• Published two status updates (blog article and landing page) about the trial.
• Paid: Facebook Ads campaign to include Boosted Posts
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• Embedded sign-up form as Facebook app
• Reached out to Facebook Groups related to Crohn’s and Colitis
• Reached out to Facebook Page for Crohn’s and Colitis Foundation and The Power of Poop.
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• Published multiple tweets linking to the blog article and landing page.
• Reached out to Twitter users related to Crohn’s and Colitis
• Reached out to Twitter accounts for Crohn’s and Colitis Foundation and The Power of Poop.
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• Published two status updates (blog article and landing page) about the trial.
Google+
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• 120 people have completed the online questionnaire.
Results to date
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Q&A
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• FDA Draft Guidance on Social Media• Tufts CSDD Impact Report• Clinical Trials 2.0: Reinventing Research for the Social A
ge
Resources