Five years ago my friend confided in me that He wanted to be a She. It took one moment for me to tell her how honored I was to know her story, and a few minutes for her to answer my question: “When did you first know?”. She and I spent hours talking about the process of transitioning, classical music, origami and how she would tell her friends, but it took months to answer one question: “Where do I find a doctor?”
Day after day we searched for doctors near Sacramento and hundreds of miles away, close to her family. We muddled through virtual noise looking for support groups or a checklist for college students. Unfortunately our most trusted health advisor, Google, was unable to identify a person or organization.
Health information is the third most popular access source online. Over 80% of internet users acquire health resources with approximately one-third self-diagnosing. Patients (and professionals) search trusted sources to answer the questions about prevention and treatment related to good (and poor) health habits and issues using physical and/or virtual tools. Information is received by a greater spectrum, including doctors, dietitians, news, social media, blogs, lawyers, friends, family and even our furry friends.
Communities have shifted, as Barry Wellman and Lee Rainie point out in Networked: The New Social Operating System, “[we] have become increasingly networked as individuals, rather than embedded in groups. In the world of networked individuals, it is the person who is the focus: not the family, not the work unit, not the neighborhood, and not the social group.”
The result is that physical and virtual communities—which seek to appeal to the ‘individual network’—have become so personalized that they are becoming increasingly fragmented and disjointed. Nowhere is this more true than when it comes to health information resources which are scattered across countless sites, blogs, meal plans, apps and online communities. Despite the fact there is more information (and an increasing demand for it) it becomes harder and harder to find what you are looking for in any coherent way. We are starving in a land of plenty; every time there is a new problem, a new online blog or website is created. But the great irony is that these new resource hubs simply serve to confuse rather than clarify, making it harder and harder to find the information we so desperately crave.
Now is the time to think about strategy for online social wellness. Hubs of information are everywhere without organization and validation for patients to trust and use appropriately. This is the first step the Improving OUTcomes conference began a year ago: building a simple online tool that links statewide and national LGBTQI health resources, and with our next conference, an interactive map with California county and national resources. A resource that will guide patients, professionals, students and parents to the social support and services they require.
Paul David Terry, MNA is the Interim Director of Communications at UC Davis Integrative Medicine and co-editor of the Improving OUTcomes website and blog. He serves on the Vice Chancellor’s LGBTQI Advisory Council and is a past presenter for the Improving OUTcomes Conference, contributing workshops on strateges that reach and engage online LGBTQI patients and communities.