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Online Research Participant Communication: Balancing Benefits and Risks
Luke Gelinas1, Walker Morrell2, Sarah A White3
1IRB chairperson at Advarra and a senior advisor at the Multi-Regional Clinical Trials Center of Brigham & Women's Hospital and Harvard University.
Online communication offers significant benefits for clinical trial participants. This study categorizes these advantages and recommends a balanced approach, focusing on education to manage risks while preserving benefits.
Area of Science:
- Clinical Research
- Digital Health
- Patient Engagement
Background:
- Online communication is crucial for participant interaction in clinical research.
- This communication presents risks to participants and trial integrity.
- The benefits of online communication for participants are often overlooked.
Purpose of the Study:
- To identify and categorize the benefits of online communication for clinical trial participants.
- To argue against overly restrictive measures on online communication.
- To propose a balanced approach for managing risks and benefits.
Main Methods:
- Literature review and synthesis of existing research on online communication in clinical trials.
- Development of a taxonomy to classify participant benefits.
- Formulation of recommendations based on a context-sensitive approach.
Main Results:
- A taxonomy of online communication benefits for participants was established.
- Discouraging or limiting online communication is deemed inadvisable.
- A context-sensitive strategy emphasizing education is proposed.
Conclusions:
- Online communication offers substantial benefits to clinical trial participants.
- Risk mitigation strategies should not eliminate these benefits.
- Education and actionable recommendations can foster safe and beneficial online participant communities.
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