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 […]
research issues
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 […]
Access to results that matter
The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]
Quantified Self Public Health
Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society. It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read […]
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