Related Experiment Video
Updated: Jul 9, 2025
06:31
Author Spotlight: Insight Into Innovations in Spinal Cord Injury Research
Published on: January 19, 2024
2.0K
Perspectives on Data Sharing in Persons With Spinal Cord Injury
Freda M Warner1, Bobo Tong1, Jessie McDougall1,2
1International Collaboration on Repair Discoveries (ICORD), Blusson Spinal Cord Centre, University of British Columbia, Vancouver, British Columbia, Canada.
Neurotrauma Reports
|November 29, 2023
Summary
Individuals with spinal cord injury (SCI) generally support open data sharing for research, believing benefits outweigh risks. They expressed concerns about data security and marketing use but see themselves as trustworthy partners in advancing scientific discovery.
Area of Science:
- Clinical Research
- Data Science
- Rehabilitation Medicine
Background:
- Open data sharing in clinical research enhances transparency and scientific discovery.
- Risks include participant identification and potential stigmatization.
- Participant perspectives are crucial for developing effective open data-sharing policies.
Purpose of the Study:
- To determine perspectives on data sharing among individuals with spinal cord injury (SCI).
- To identify risks, benefits, and data types participants are most willing to share.
- To examine predictors of willingness to share data.
Main Methods:
- A survey was developed and disseminated to individuals with SCI in the United States and Canada.
- Data were collected from 232 participants, many with prior research experience and living with SCI for over 5 years.
- Dissemination occurred through various channels, including a community partner.
Main Results:
- Most participants believed the benefits of data sharing outweighed the negatives.
- Individuals with SCI were perceived as the most trustworthy partners for data sharing.
- Primary concerns included information theft and potential marketing use by companies.
- General support for data sharing for research purposes was observed.
Conclusions:
- Individuals with SCI are generally supportive of open data sharing for research.
- Informed consent processes in clinical trials should address open data sharing to acknowledge participant contributions.
- Addressing concerns about data security and misuse is important for policy development.
