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Community-Based Participatory Research

Tangled In The Web:

Patient safety & privacy concerns when seeking knowledge, community, and support online

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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.

This research was made possible by a grant from Robert Wood Johnson Foundation.