Speakers
Eric Perakslis, PhD
Chief Science & Digital Officer
Duke Clinical Research Institute
Professor, Department of Population Health Sciences
Chief Research Technology Strategist
Duke University School of Medicine
Andrea Downing
ePatient and Security Researcher
Co-Founder – The Light Collective
Keywords
Data Security, Disinformation, Cyberthreat
Key Points
- Health care and the internet are intertwined. Patients use the internet to search for answers, and researchers use the internet to search for new solutions. The questions are how are you going to play online and how are you going to conduct your research in a way that is most effective and will keep everyone safe? Researchers need to overcome the risks of online tools and increase the benefits.
- Perakslis said his definition of digital health is any time you mix medical information and the internet. There are 5 forces that drive the internet, including surveillance capitalism, attention economy, connectivity, social networks, and personification.
- Case study: The U.K. coroner in the case of Molly Russell, a teenager who committed suicide, determined that she was suffering from a depressive condition, and, based on the sites she was visiting, the algorithms were feeding her very negative images without her request. Should social media for teenagers be regulated like a digital therapeutic, given how addictive they are and the behavior modification.
- The Light Collective is an organization that represents collective rights, interests, and voices of patient communities in healthcare technology. It was started when Andrea discovered a vulnerability in Facebook’s group platform that allowed data to be scraped outside of the group. There should be no aggregation without representation.
- Patients often turn to social media to find support and knowledge from peers due to the network effects of the platforms. The problem is patients can’t predict benefit or harm based on how their data is used.
- In a recent paper, Health advertising on Facebook: Privacy and Policy Considerations, patients download their raw data, and found who was tracking them across the internet. Three out of 5 companies included in the study were not adhering to their privacy policies. The manuscript was shared with a news organization called The Markup, and they looked at the Meta Pixel installed by various hospital systems and found 30 out of the top 100 hospitals were using custom fields to share information with Facebook, which constitutes a data breech
- There are doable ways to increase cybersecurity in health care. Researchers can be thoughtful about devices used in studies and how to keep patient information safe. Having a tech person on the study design team to advise on which devices are secure will allow as many people as possible to participate.
Learn more
Health advertising on Facebook: Privacy and policy considerations
Discussion Themes
-What is the path forward? We need a new skill set or team member who studies cyber interaction, who can make sure your trial is safe. You need to involve them from the design phase. They can ask questions like who should I use for my digital campaign? Are you building the right tool? One of the things we are doing with the Light Collective is community members can shine a light on potential issues early on but we need a formalized path, training, a new role in research and clinical trials.
-How can we do research in states that are restricting access to reproductive health and keep patients safe? If we eliminate all the states where reproductive rights data could be harmful, is that going to impact site selection? We don’t want to create a disparity like that and have these women lose access to research. We need to think about how we are consenting and securing the data, and have a thoughtful approach to how we consent in these states. How do we maintain research access when health care access is limited in some of these states.
Tags
#pctGR, @Collaboratory1