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Webinar recap: How patient organisations can support innovation and keep their community's health information safe

This webinar, hosted by Patrick Short, CEO of Sano Genetics, and featuring Lindsey Wahlstrom-Edwards, Partnerships Lead at Sano Genetics, focused on the challenges patient organisations face in supporting innovation while also keeping patient health information safe.

You can watch the webinar below or here; we've also included a brief summary for easy reference.

About the speakers

dr-patrick-short

Dr. Patrick Short

Dr. Patrick Short, PhD is the Co-founder and CEO of Sano Genetics. Sano’s platform helps clinical development teams to move 10x faster at 5x lower cost by automating entire workflows for protocols, consent, prescreening, genetic testing, and matchmaking with trial sites.

Lindsey Wahlstrom-Edwards

Lindsey Wahlstrom-Edwards 

Lindsey Wahlstrom-Edwards is the Partnerships Lead at Sano Genetics, a company that helps patient organisations, population genomics programs, and pharma to revolutionise the research participation experience.

 

Highlights from the webinar

How does Sano Genetics keep patient information secure?

Lindsey stated that patient organizations play a crucial role in supporting innovation, but the challenge is to keep patient health information secure. Sano Genetics is a platform that enables patient organizations to support researchers and innovators while also keeping patient health information secure. The platform is designed as an infrastructure as a service, where patient organizations can license the platform, hold their own web service or cloud service, and own the keys to the information and data that are collected on that platform.

The Sano platform is compliant with GDPR, CCPA, GCP, and HIPAA regulations, which means that patient organisations can onboard users in a compliant way and have opt-in and consent management for contacting by email, SMS, and direct mail. The platform also has customisable pre-screening and survey templates and dynamic consent, which means that patient organisations can ask people on a case-by-case basis if they'd like to share their information for a specific project or to screen for a specific research program. The platform also allows patient organisations to screen individuals based on inclusion/exclusion criteria, including conditional logic. And, Sano can layer in at-home DNA sample collection and return of results via the portal.

 

How can patient organisations get their communities involved in research?

Patient organizations can engage their communities in research by creating their own research programs with longitudinal data collection or by supporting research programs from their partners and academic groups. For example, Sano’s platform allows patient organizations to publish their research outcomes and drive patient engagement through content and pulse surveys. It also provides different levels of permissions for staff members, allowing patient organizations to control who sees what information and for what purpose.

Of course, a platform for engaging patients in research should be selected carefully. First, patient organisations should consider their goals and what they hope to accomplish with the registry or with their community. Second, patient organisations should consider data privacy and security and understand their community members' level of comfort with sharing information. Third, patient organisations should consider their budget and understand that a free service might not necessarily be the best option. Fourth, patient organisations should consider team readiness and how the technology will help their team with their work. And finally, patient organisations should take into account whether their community is ready to participate in a registry or research.

 

Summary

This webinar provided valuable insights into the challenges patient organisations face in supporting innovation while also keeping patient health information safe. The Sano platform provides a solution to these challenges by enabling patient organisations to support researchers and innovators while also keeping patient health information secure. Patient organisations should consider their goals, data privacy and security, budget, team readiness, and community readiness when choosing a platform to support innovation and keep patient health information safe.

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