SEATTLE – Sage Bionetworks has appointed Ljubomir Bradic as Director of Design. Bradic previously served as Sage’s senior user experience designer and brings 20 years of experience in product design, UX design and research, program management, and creative direction. He also spent time in the start-up world, co-founding Luceo Social Inc., which was acquired by Fexy Media, and subsequently serving as a product designer for Talaera.
As the Director of Design, Bradic oversees a team that works with researchers and engineers to design products and applications that are powered by Sage’s technology platform. These applications enable scientists to collaborate and share their data and other digital resources across diverse research projects, including for cancers and neurodegenerative diseases. The team also places a high focus on developing mobile and other novel digital approaches to bridge the gap between researchers and the participants in human health research studies.
“To be able to contribute to potentially life-changing biomedical research is an honor,” Bradic said. “Whether we do a good job or not can make a difference in people’s lives, so identifying what problems to solve and how to execute our solutions is very serious business.”
Sage Bionetworks is a nonprofit organization that uses open, collaborative research practices to identify reliable biomedical claims poised for translation. Effective user experience design is critical to how researchers and study participants engage with Sage’s technology platform.
“Design should be part of any world-class technology team,” said Mike Kellen, CTO of Sage Bionetworks. “I’ve watched Ljubo build close, collaborative relationships with groups within Sage and with a variety of our partners. I’m confident he will be able to lead Sage’s design team to the next phase of development.”
Lara Mangravite, President of Sage Bionetworks, described Bradic’s approach to designing solutions as clear, simple and joyful. “This is particularly important as we seek solutions that support interactions across a diverse set of people,” she said. “We are excited to have him leading our design team in this work.”
Sage Bionetworks co-hosted their first Mobile Research App Developer Workshop on Sept. 12 at the New York Genome Center. The event, supported by a NIH grant for ethical, legal, and social implications (ELSI) in health research using mobile technologies, sought to engage stakeholders (app developers, patient advocate groups, and security researchers) to begin conversation on governance, reliability, and privacy of data collected from connected digital tools (i.e. digital specimens). In this post, I’ll share a summary of the workshop proceedings along with reflections and resources (e.g., developer toolkits and legal resources).
John Wilbanks, CCO at Sage, and Mark Rothstein, Founding Director of the Institute for Bioethics, Health Policy, and Law at the University of Louisville School of Medicine introduced the workshop by highlighting that current practices are not regulating apps collecting data for research through governing bodies such as an Institutional Review Board (IRB). This lack of governance can lead to detriments by relying on incorrect information as well as privacy risks, such as apps selling information to third parties.
Andy Coravos gave a keynote talk that addressed the gap in overseeing digital products and regulating data governance & rights, discussing how governing organizations such as the FDA regulate based on what a company claims their products do, not necessarily based on what the products actually do (slides).
The Sage Bionetworks team then held a series of talks addressing consent, privacy, design, and engagement & enrollment. Megan Doerr talked about consent and the importance of using accessible vocabulary to inform people as well as the ethical imperative to utilize the consent to inform rather than as a pseudo-contract. This lead to the creation of Sage’s consent toolkit geared to guide researchers, app developers, and designers.
Vanessa Barone reviewed a study done in data privacy that identified people’s perception on agency in data sharing. The results showed that people’s perceptions fall in 3 groups where they feel they have no other options than providing their data (no agency), or like their data is already out there and there is nothing they can do about it (apathy), or that they have an active role in deciding what data and how it is shared (agency). Based on this study, Sage created another toolkit to help biomedical researchers, app developers, and designers improve data privacy practices in digital studies. Check it out! Thursday marked the public launch of the Sage Privacy Toolkit — it’s an excellent resource for both start-ups and big companies.
Likewise, Woody MacDuffie presented on digital systems for mobile research, where the Sage design team standardized their app design systems to have the same way to execute an action, such as clicking “next”, and utilize animations rather than lengthy text to consent participants and explain procedures in digital studies. Abhi Pratap then presented preliminary data from his research work on engagement & enrollment in digital health studies, which will be publicly shared later this month — be on the lookout for the report!
An expert panel featuring Deborah Estrin, JP Pollak, Adrian Gropper, and Maria Ebling, discussed privacy considerations in app development. The conversation focused on challenges such as accessible end-user license agreements, separation of concerns, selective sharing of data, and agency vs. paternalism. Cindy Geoghegan highlighted the important point of helping people understand what role is played by each entity that has access to their data, for example some organizations might only be responsible for storing data rather than using such data.
Next up were four lightning talks from workshop participants. Talks covered difficulties accessing pre-processed data from commercial connected tools, adapting current wearable devices to specific populations, and Miso Technologies’s work developing the “first research AI assistant”. Elektra Labs team member, Christine Manta, covered the current landscape of health IT standards for the digital medicine community, sparking conversation on whether popular standards such as FHIR are appropriate for the format and exchange of data collected on digital tools. In particular, FHIR may not (yet) be capable of storing data sampled at greater than 1Hz (1 sample per second), which is critical for remote monitoring (h/t Jameson Rogers and Mark Shervey).
Lastly, closing remarks by John Wilbanks and Mark Rothstein emphasized the importance of education and collaboration between security and biomedical researchers, app developers, and designers to protect the privacy of people’s data and uphold ethical practices in collecting and using such data. As someone new to the field of digital medicine, I was left with the urgency to shift our paradigm towards being data stewards, not data owners, particularly while the gap in regulation from governing organizations continues.
Sage Bionetworks announces our Privacy Design Toolkit for mobile health research. The project was led by Vanessa Barone, a research scientist on the governance team, and Woody MacDuffie, director of design.
The tools are available for use in Google Forms, GitHub, and Figma.
There is a gap between translating privacy principles and legislation to guide how engineers and designers create the technology products that are used by billion of end users.
How might we reimagine meaningful, informed consent for sharing personal data?
How does civil society, practitioners, and policymakers frame privacy and privacy through design? What interventions are being implemented across industries, disciplines and practices?
The Harvard Shorenstein Center’s Big Tech & Democracy research group put out a call to experts and practitioners in design, tech, academia, public sector, and consumer advocacy groups to contribute concepts and visuals that illustrate how consumers could regain control over their personal information. A team from Sage – Vanessa Barone, Research Scientist; Woody MacDuffie, Director of Design; Stockard Simon, designer; and Yini Guan, graduate student and design intern – contributed The Privacy Toolkit for Mobile Health Research Studies.