When people’s questions go unanswered, they don’t stop asking them. They turn to Dr. Google and other sources. They try to solve their own mysteries, using whatever they can find. This is an opportunity that some people misread as dangerous or wrong. How might we help more people contribute to discovery of new treatments or […]
research issues
Rare Disease Day 2019
Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
Helping people find the needle in a data haystack
One of the most important customer-service lessons I ever learned was from E-patient Dave: when it comes to disseminating research, give people what they need, not what you want to create. About a decade ago, Dave was on deadline to turn in slides for a presentation. He needed one key survey finding to illustrate a […]
A deep dive into food allergy research and education
Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
Clinical trials jump on the Cluetrain
When the organizers of a National Cancer Institute workshop on social media and clinical trials invited me to speak, they said: We have an ethical obligation to understand social media. Social media is not just trendy. It’s a tool, an opportunity to act in an ethical way, not only to increase recruitment but to help […]
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
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