Beth Noveck at The GovLab: “…The term, big health data, refers to the ability to gather and analyze vast quantities of online information about health, wellness and lifestyle. It includes not only our medical records but data from apps that track what we buy, how often we exercise and how well we sleep, among many other things. It provides an ocean of information about how healthy or ill we are, and unsurprisingly, doctors, medical researchers, healthcare organizations, insurance companies and governments are keen to get access to it. Should they be allowed to?
It’s a huge question, and AARP is partnering with GovLab to learn what older Americans think about it. AARP is a non-profit organization — the largest in the nation and the world — dedicated to empowering Americans to choose how they live as they age. In 2018 it had more than 38 million members. It is a key voice in policymaking in the United States, because it represents the views of people aged over 50 in this country.
From today, AARP and the GovLab are using the Internet to capture what AARP members feel are the most urgent issues confronting them to try to discover what worries people most: the use of big health data or the failure to use it.
The answers are not simple. On the one hand, increasing the use and sharing of data could enable doctors to make better diagnoses and interventions to prevent disease and make us healthier. It could lead medical researchers to find cures faster, while the creation of health data businesses could strengthen the economy.
On the other hand, the collection, sharing, and use of big health data could reveal sensitive personal information over which we have little control. This data could be sold without our consent, and be used by entities for surveillance or discrimination, rather than to promote well-being….(More)”.