chesapeake irb & social media
TRANSCRIPT
Copyright 2015 Chesapeake IRB
www.chesapeakeirb.com
Chesapeake IRB
Commentary on Social Media, Patient Compensation
Ellen Kelso, Executive Director Strategic
Development
Powerful Research Tools
● Social media
– Expanded publicity of clinical trial opportunities
– Educate, engage and recognize potential and research current participants
– Better outreach to those hard to reach with traditional methods, such as underserved populations
– Examination of displayed online behaviors and beliefs as part of the participants' daily lives
● Participant compensation
– Justice as reciprocity
Social Media
● Internet-based modes of communication
● Allow users to interact with the medium
– Websites
• Social networking: Facebook, Linked In, Twitter, Research/patient-specific network pages
• Social photo and video-sharing: You Tube
– Blogs, podcasts, and text messages
– Online study tools, e.g., questionnaires, diaries, etc.
– Dissemination of study results
IRB Review Requirements
● Prospective review of the content of study-specific communications before posting. Includes study specific:
– Display or banner ads,
– Rich media (roll-over, scroll, or click through)
– Social network page(s)
– Any blog, blog post, tweet, or text
– Dissemination of post-study results
● Limits ability for spontaneous interactions
– Prepare a cascade of possible interactive messages
IRB Review Requirements
● When participants are asked to submit personal data
– IRB must understand how the researcher will collect and protect confidential information, if applicable
• Note: direct quotes may be identifiable
– Website must explain how the information will and might be used
– Obtain appropriate waivers of consent and/or HIPAA Authorization
Risks
● Inaccurate/misleading promises or information about study participation
● Breach of confidentiality
● Federal and state courts have determined that Facebook users do not have a reasonable expectation of privacy
– Displayed content by profile owners/participants may include health risk behavior information
● For example, sexual behavior and substance use, mental health, and personality characteristics
Review Not Required
● What doesn’t need IRB review
– Study-specific information posted on a website where the format limits information to title, purpose, and study locations
– Educational materials or general informational materials that are not study-specific, e.g., postings or podcasts describing symptoms of an underlying disease
– Study specific publicity intended for general audiences, such as news stories directed toward investors
– Testimonials, videos, links communicated by a 3rd party (e.g., participant posts on Facebook, etc.)
Compensation
● Payment for inconvenience and time spent
● Reimbursement for expenses incurred in connection with their participation in research, including remuneration for lost earnings
● Such compensation and care for damage are not considered inducements
Inducements
● Intended to create legitimate motivation
● Include:
– Benefits of a research study
– Goods, services or money
● Should not be so extensive as cause an individual to ignore or devalue his/her concerns or judgment
Investigator Responsibilities
● Include specific information in your IRB application proposal regarding the cultural/local propriety of any proposed compensation/inducement(s)
● Include information about payment in the informed consent process, including terms
● The risks involved in participation should be acceptable to subjects even in the absence of inducement
Chesapeake IRB
Human Connection >>>Technology Driven
Thank you Ellen Kelso
Executive Director
513-218-9699
www.chesapeakeirb.com
www.irbservices.com www.cirbi.net