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Social Media the New Tool in Clinical Trial?
Dr. Salina Abdul Aziz. MREC Chairperson
pressureUA/iStock
Social Media
•Social media is a computer-based technology that
facilitates the sharing of ideas, thoughts, and information
through the building of virtual networks and communities.
Photo Courtesy of https://smallbiztrends.com/2016/05/popular-social-media-sites.html
Types of Social Media
1. Social Networks - Connect with
people
•Examples: Facebook, LinkedIn
2. Bookmarking Sites - Discover,
save, and share new content
•Examples: Pinterest, Flipboard,
Diggs
3. Consumer review networks
Examples: Yelp, Zomato, TripAdvisor
4. Media Sharing - Share photos,
videos, and other media
• Examples: Pinterest, YouTube,
Vimeo
5. Microblogging
• Examples: Twitter, Facebook
6. Blog comments and forums
-Publish content online
Digital Clinical Trial
•Virtual Clinical Trial (VCT): decentralized trials that are fully
virtually enabled with digital tools and devices, requiring no
face-to-face patient to researcher/PI interaction. Medical
devices, eClinical solutions, and video visits are commonly
deployed to facilitate VCTs.
•Hybrid Clinical Trial (HCT): When researchers conduct clinical
trials while deploying strategies from both CCT and DCT
methodologies to enroll, monitor, and collect data from
patients.
Elements of Digital
Clinical Trial
Digital Recruitment and
Retention
Digital Data Health
Collection
Data Analytics
Reports/ Publications
Digital Clinical Trial
Inan, O.T., Tenaerts, P., Prindiville, S.A. et al. Digitizing clinical trials. npj Digit. Med. 3, 101 (2020).
https://doi.org/10.1038/s41746-020-0302-y
Recruitment
• Barriers to recruitment include lack of awareness,
strictness of eligibility, and practical concerns,
including travel distance and financial costs.
• Social media is emerging as a promising way to
identify and recruit potential participants for clinical
trials and other forms of human subjects research
(Gearhart 2015)
Gearhart J. Clinical Trial Recruitment Using Social Media is Growing. Quorum Review Institution Bulletin. 2015;5(1e)
Do The Research Before Implementing
Social Media Campaign
• Where are people with certain conditions tending to
congregate?
• How big are these communities and how many are
there?
• What are their main concerns?
• Are there key voices / influencers?
• How are patients providing support to one another?
Advantages of using social media
for patient recruitment
1. Wide reach: its low cost and ability to reach a diverse and broad
audience, social media can be a cost-effective approach. A 2016
Pew survey found that 79% of internet users (68% of all U.S.
adults) use Facebook. while smaller shares of users access Twitter
(24%), Pinterest (31%), Instagram (32%) or LinkedIn (29%). Thus,
recruitment via social media can reach a much larger audience
than by posting flyers locally.
2. 24/7 Recruitment: Social media may enable researchers to reach
participants on weekends/holidays or other times outside of the
common work hours. Given the ubiquity of social media,
recruitment can continue even when the recruiting staff has gone
home and the clinics are closed.
Advantages of using social media
for patient recruitment
3. Targeted ads: to recruit ‘hard to reach’ groups that cannot be easily
accessed through traditional methods. Example adolescents and
young adults. All social media platforms (including online advertising
through Google AdWords) offer targeting on the basis of specific
demographic characteristics (e.g., age, gender, race, geographical
locations), or lifestyle of health conditions through keywords.
4. Efficiency: Social media can be much less time-intensive compared to
traditional methods of recruitment. Reduce recruitment time by
allowing clinical research teams to identify and engage with people in
specific demographic groups who would be more relevant subjects for
their particular clinical trials
Social Media
• Social media sites – Facebook, Twitter,
Instagram, LinkedIn, and other similar
online spaces
• Offer various platforms for connecting and
sharing interests and information, while
allowing users to maintain physical
separation and a degree of anonymity
Ethical Considerations &
Confidentiality
• Breach of patient confidentiality during the clinical trial
• The more public a social media venue is—that is, the
fewer restrictions there are on who may join, and the
easier it is for one to join without providing personal or
identifying information—the less of a reasonable
expectation of privacy users of the site have, and the less
of an obligation investigators have to proactively disclose
their presence.
Personal Data Protection Act, 2010
(Act 709)
Follow the Rules of Advertising
• Advertisements should meet the same Institutional
Review Board approval rules as required for
traditional advertising.
• And the type and format of social and digital media
affects how trial sponsors should present their
information to the IRB.
Digital Health Data Collection
• Self-Tracking.
•Mobile devices can allow individuals to collect
self-recorded quantitative (e.g. blood pressure) and
qualitative data (e.g. mood) during the clinical trial that can
be subsequently shared to patient online communities on
social media platforms.
•This not only provide a supportive environment for the
individuals within the trials for the same disease and trial,
but also provide researchers with real-time data and
insight into benefits and problems with the treatment
provided.
Dissemination of Research
•Research is about producing new
information, and social media offers unique
opportunities to present new content.
•ResearchGate is a popular academic social
media outlet.
•It provides scientists with a forum to share
and discuss their research as well as find
collaborators
•If you share your research on your personal
account, then the only people that will see it
are those whom you connect with
Changing landscape of
Clinical Research since
COVID-19 pandemic
Disclaimer
•This slide was prepared for the Webinar Series Demystifying
Clinical Trials & COVID-19 Updates session on 28th July 2021,
by Dr. Salina Abdul Aziz, MREC Chairperson Malaysia.
•This is intended to share within healthcare professionals, not
for public.
•Kindly acknowledge “Clinical Updates in COVID-19
http://www.nih.gov.my/covid-19” should you plan to share
the information obtained from this slide with your
colleagues.
Social Media the New Tool in Clinical Trial?

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Social Media the New Tool in Clinical Trial?

  • 1. Social Media the New Tool in Clinical Trial? Dr. Salina Abdul Aziz. MREC Chairperson pressureUA/iStock
  • 2. Social Media •Social media is a computer-based technology that facilitates the sharing of ideas, thoughts, and information through the building of virtual networks and communities. Photo Courtesy of https://smallbiztrends.com/2016/05/popular-social-media-sites.html
  • 3. Types of Social Media 1. Social Networks - Connect with people •Examples: Facebook, LinkedIn 2. Bookmarking Sites - Discover, save, and share new content •Examples: Pinterest, Flipboard, Diggs 3. Consumer review networks Examples: Yelp, Zomato, TripAdvisor 4. Media Sharing - Share photos, videos, and other media • Examples: Pinterest, YouTube, Vimeo 5. Microblogging • Examples: Twitter, Facebook 6. Blog comments and forums -Publish content online
  • 4.
  • 5. Digital Clinical Trial •Virtual Clinical Trial (VCT): decentralized trials that are fully virtually enabled with digital tools and devices, requiring no face-to-face patient to researcher/PI interaction. Medical devices, eClinical solutions, and video visits are commonly deployed to facilitate VCTs. •Hybrid Clinical Trial (HCT): When researchers conduct clinical trials while deploying strategies from both CCT and DCT methodologies to enroll, monitor, and collect data from patients.
  • 6. Elements of Digital Clinical Trial Digital Recruitment and Retention Digital Data Health Collection Data Analytics Reports/ Publications
  • 7. Digital Clinical Trial Inan, O.T., Tenaerts, P., Prindiville, S.A. et al. Digitizing clinical trials. npj Digit. Med. 3, 101 (2020). https://doi.org/10.1038/s41746-020-0302-y
  • 8. Recruitment • Barriers to recruitment include lack of awareness, strictness of eligibility, and practical concerns, including travel distance and financial costs. • Social media is emerging as a promising way to identify and recruit potential participants for clinical trials and other forms of human subjects research (Gearhart 2015) Gearhart J. Clinical Trial Recruitment Using Social Media is Growing. Quorum Review Institution Bulletin. 2015;5(1e)
  • 9. Do The Research Before Implementing Social Media Campaign • Where are people with certain conditions tending to congregate? • How big are these communities and how many are there? • What are their main concerns? • Are there key voices / influencers? • How are patients providing support to one another?
  • 10. Advantages of using social media for patient recruitment 1. Wide reach: its low cost and ability to reach a diverse and broad audience, social media can be a cost-effective approach. A 2016 Pew survey found that 79% of internet users (68% of all U.S. adults) use Facebook. while smaller shares of users access Twitter (24%), Pinterest (31%), Instagram (32%) or LinkedIn (29%). Thus, recruitment via social media can reach a much larger audience than by posting flyers locally. 2. 24/7 Recruitment: Social media may enable researchers to reach participants on weekends/holidays or other times outside of the common work hours. Given the ubiquity of social media, recruitment can continue even when the recruiting staff has gone home and the clinics are closed.
  • 11. Advantages of using social media for patient recruitment 3. Targeted ads: to recruit ‘hard to reach’ groups that cannot be easily accessed through traditional methods. Example adolescents and young adults. All social media platforms (including online advertising through Google AdWords) offer targeting on the basis of specific demographic characteristics (e.g., age, gender, race, geographical locations), or lifestyle of health conditions through keywords. 4. Efficiency: Social media can be much less time-intensive compared to traditional methods of recruitment. Reduce recruitment time by allowing clinical research teams to identify and engage with people in specific demographic groups who would be more relevant subjects for their particular clinical trials
  • 12. Social Media • Social media sites – Facebook, Twitter, Instagram, LinkedIn, and other similar online spaces • Offer various platforms for connecting and sharing interests and information, while allowing users to maintain physical separation and a degree of anonymity
  • 13. Ethical Considerations & Confidentiality • Breach of patient confidentiality during the clinical trial • The more public a social media venue is—that is, the fewer restrictions there are on who may join, and the easier it is for one to join without providing personal or identifying information—the less of a reasonable expectation of privacy users of the site have, and the less of an obligation investigators have to proactively disclose their presence.
  • 14. Personal Data Protection Act, 2010 (Act 709)
  • 15. Follow the Rules of Advertising • Advertisements should meet the same Institutional Review Board approval rules as required for traditional advertising. • And the type and format of social and digital media affects how trial sponsors should present their information to the IRB.
  • 16. Digital Health Data Collection • Self-Tracking. •Mobile devices can allow individuals to collect self-recorded quantitative (e.g. blood pressure) and qualitative data (e.g. mood) during the clinical trial that can be subsequently shared to patient online communities on social media platforms. •This not only provide a supportive environment for the individuals within the trials for the same disease and trial, but also provide researchers with real-time data and insight into benefits and problems with the treatment provided.
  • 17. Dissemination of Research •Research is about producing new information, and social media offers unique opportunities to present new content. •ResearchGate is a popular academic social media outlet. •It provides scientists with a forum to share and discuss their research as well as find collaborators •If you share your research on your personal account, then the only people that will see it are those whom you connect with
  • 18. Changing landscape of Clinical Research since COVID-19 pandemic
  • 19. Disclaimer •This slide was prepared for the Webinar Series Demystifying Clinical Trials & COVID-19 Updates session on 28th July 2021, by Dr. Salina Abdul Aziz, MREC Chairperson Malaysia. •This is intended to share within healthcare professionals, not for public. •Kindly acknowledge “Clinical Updates in COVID-19 http://www.nih.gov.my/covid-19” should you plan to share the information obtained from this slide with your colleagues.