Data security

Grand Rounds October 21, 2022: Disinformation, Cyberthreat, and Choice: Protecting Patients and Clinical Research From the Digital Triple Threat (Eric Perakslis, PhD; Andrea Downing)

Posted on by Elizabeth Mccamic

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

Beyond privacy: A deeper understanding of the internet is required to protect digital trial participants

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

Study Examines Public Attitudes Toward Data-Sharing Networks

Posted on by Gina Uhlenbrauck

A new study examining public attitudes about the sharing of personal medical data through health information exchanges and distributed research networks finds a mixture of receptiveness and concerns about privacy and security. The study, conducted by researchers from the University of California, Davis and University of California, San Diego and published online in the Journal of the American Medical Informatics Association (JAMIA), reports results from a telephone survey of 800 California residents. Participants were asked for their opinions about the importance of sharing personal health data for research purposes and their feelings about related issues of security and privacy, as well as the importance of notification and permission for such sharing.

The authors found that a majority of respondents felt that sharing health data would “greatly improve” the quality of medical care and research. Further, many either somewhat or strongly agreed that the potential benefits of sharing data for research and care improvement outweighed privacy considerations (50.8%) or the right to control the use of their personal information (69.8%), although study participants also indicated that transparency regarding the purpose of any data sharing and controlling access to data remained important considerations.

However, the study’s investigators also found evidence of widespread concern over privacy and security issues, with substantial proportions of respondents reporting a belief that data sharing would have negative effects on the security (42.5%) and privacy (40.3%) of their health data. The study also explored attitudes about the need to obtain permission for sharing health data, as well as whether attitudes toward sharing data differed according to the purpose (e.g., for research vs. care) and the groups or individuals among which the data were being shared.

The authors note that while data-sharing networks are increasingly viewed as a crucial tool for enabling research and improving care on a national scale, they ultimately rely upon trust and acceptance from patients. As such, the long-term success of efforts aimed at building effective data-sharing networks may depend on accurately understanding the views of patients and accommodating their concerns.

Read the full article here: 

Kim KK, Joseph JG, Ohno-Machado L. Comparison of consumers' views on electronic data sharing for healthcare and research. J Am Med Inform Assoc. 2015 Mar 30. pii: ocv014. doi: 10.1093/jamia/ocv014. [Epub ahead of print]