designing for search and discovery is crucial: an example from rare disease

Designing for search and discovery is crucial:

an example from rare disease

@brianloew / [email protected] HxD 2013

“This exchange of information with mostly strangers (at first) can take some pressure off the ones we love. They do care about us, but often will simply not understand and at times things are better shared will relative strangers.”Male with Ehlers-Danlos Syndrome, 33,

“In these online communities I get REAL information from those who are living with this disease. Where we live there are no specialists for NF 1 and very few doctors who have ever seen it. In these communities online I can find names of doctors and treatments.”Woman, 35, caregiver of son with neurofibromatosis type 1 “Being in the sarcoidosis group allowed me to meet friends, learn about my sarcoidosis disease and ultimately find a doctor who has prescribed a treatment that is clearing up the symptoms. Some symptoms I didn't even realize I had, or that they were connected with the disease of sarcoidosis.”Woman with sarcoidosis, 70, from California

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“Online communities show me what others are going through, they help keep me updated on current NF1 topics, and also provide a place for me to release my feelings with like-minded people.”Man with neurofibromatosis type 1, 28

“I've only been diagnosed for four years, but I've learned more about what makes me the way I am in the six months or so that I've been here than in all the doctors' appointments over the years.”Woman with Ehlers-Danlos Syndrome, 54, Virginia

“The knowledge and support I have gained here have helped me make wiser treatment choices. The sarcoidosis group is truly a family.”Woman with sarcoidosis, 60, from Pennsylvania

“I very recently found this site and already it has given me a wealth of knowledge that I am sure will aid my recovery. My knowledge of my condition has at least tripled in 24 hours!”Woman with Nephrotic Syndrome, from the UK

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A story about...

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Search

Discovery

Self-organization

Empowerment

Chutzpah

Enlightenment


What is Spontaneous Coronary Artery Dissection?

Source: Mayo Clinic

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Search

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Discovery

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Discovery

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Discovery

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A personal story

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...the search continues

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Growth of SCAD members

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Katherine Leon makes concrete connections with others with SCAD

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The call to action

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Laura Haywood-Cory posts “All the SCAD Ladies”


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A researcher heeds the call

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Dr. Sharonne Hayes launches pilot research

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@brianloew / [email protected] HxD 2013 18


Initial findingsFrom Mayo Clinic Proceedings Sep, 2011CONCLUSION Our pilot demonstrates successful social networking-enabled research participant engagement and recruitment among members of an international disease-specific online community and outlines a novel methodology to obtain retrospective and prospective data from persons with uncommon, poorly understood conditions. Our pilot serves as a model as we develop a more extensive, much-needed retrospective and prospective study of SCAD. This process of recruiting research trial participants with self-identified conditions from social networking Internet sites represents a mechanism to develop a novel “multicenter disease registry” that could be replicated to study and propel medical advances in other uncommon conditions that may not otherwise be subjects of active investigation.

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Dr. Sharonne Hayes launches pilot research

Initial Mayo findings published

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@brianloew / [email protected] HxD 2013 21


The future

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designing for search and discovery is crucial: an example from rare disease

Health & Medicine