Tangled in the Web: Patient Safety and Privacy Concerns When Seeking Knowledge, Community, and Support Online
Session Description
In an era in which technology increasingly intersects with healthcare, understanding the perspectives of those most affected is paramount. The Light Collective, an organization dedicated to amplifying the collective voices of patient communities in health technology, has taken a crucial step towards broadening this understanding. This community-led survey sheds light on the complex relationship between patients, patient advocates, caregivers, and the digital world they navigate as they seek to understand and manage their health conditions or those of people for whom they care or advocate.
Read the report here.
Video
Speakers
Christine Von Raesfeld, Board Member, The Light Collective
Christine Von Raesfeld (she/her) is a pillar of patient advocacy and allyship in the rare and chronic disease community working as a Board Member of The Light Collective, and also with Research To The People. Through the lens of her lived experiences in health care, she has become a champion for patient voices, diversity and inclusion in clinical research, and equitable patient–sponsor partnerships.
Valencia Robinson, Director of Community Outreach, The Light Collective
Valencia Robinson is a nationally recognized advocate and founding member of The Light Collective. She serves on the Boards of the National Breast Cancer Coalition, and the Florida Breast Cancer Foundation. Recognizing the need to address disparities for women of Color, Valencia founded the Women of Color Wellness Alliance in 2022.
Andrea Downing, Co-Founder & Board President, The Light Collective
Andrea Downing is the co-founder and Board President of The Light Collective. She has been a prominent figure in health privacy research, focusing on the implications of technology and social media on patient data privacy. One of her notable contributions is her work on the security vulnerabilities within “private” Facebook groups, which had significant privacy implications for health-related support groups.
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