Health research 2.0

Abstract

Over the past decade, the Internet has allowed people to share and exchange increasing amounts of personal data. Much of it might seem trivial or of little consequence, but some of it, including information about health, is potentially both highly sensitive and useful to researchers. In support networks or communities of like‐minded people, individuals voluntarily reveal and discuss health information they would usually have shared only with their physician or close family members. “In former times, the internet was used more passively,” said Barbara Prainsack, Associate Professor at the Department of Social Science, Health & Medicine at King's College London (UK). “People would enter a search term like migraine and retrieve expert recommendations. This has now changed.” > The companies behind these networks also encourage participants to donate and share personal data in order to build large databases from self‐reported data… “By sharing our experiences, we can all contribute new data that can accelerate research and help create better treatments. Our experiences can actually change medicine… for good,” states the Web site of PatientsLikeMe (www.patientslikeme.com), one of the largest online health networks, founded in 2004 by Benjamin and James Heywood after they learned that their brother had amyotrophic lateral sclerosis (ALS). The DNA sequencing company 23andMe (www.23andme.com) is similarly interested in using personal health data for their “Research Revolution,” promising to “empower more people to jumpstart genetic research into the diseases that affect them and the people they love” (http://blog.23andme.com/23andme-and-you/introducing-a-do-it-yourself-revolution-in-disease-research/). The members of social health networks such as PatientsLikeMe and 23andMe engage in activities that traditionally belong in the hands of medical doctors or scientists. Members diagnose themselves, analyze their data, vote on research topics or even initiate research projects themselves. The companies behind these networks also encourage participants to donate and share personal data in order to build large databases …