To impeach or not to impeach a President stirs people’s passions but it is also a highly complex legal issue. What the Founding Fathers would have made of Donald Trump’s soliciting of help from a foreign government is a question challenging enough to have driven the House Judiciary Committee to seek testimony from four specialists in constitutional law last week. Very few of us have read the Constitution, let alone are able to interpret it. Sometimes, we have to hear from the experts.
Yet there are other public debates that rely less on such technical knowhow. In these arguments, many more of us are experts because of our practical experience. One of these issues is the use of big health data.
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.
Many of us will have strong views on these issues — views that are based on our lived experience, family histories and professional expertise. Collecting all this previously untapped know-how in the population will allow AARP to make more informed recommendations to Congress, start a balanced public conversation about how health data should be treated, and even make a contribution to treating and curing some of the most intractable illnesses. At GovLab we call this kind of online engagement crowdlaw.
Crowdlaw is the use of the Internet to enable ordinary people to play a much greater role in lawmaking. In a crowdlaw initiative, citizens might collectively identify problems or their solutions, debate and draft proposals for change, or implement and evaluate policies and laws. In its ambition to renew and deepen our democracy, crowdlaw is an urgent idea for our time.
You can participate in this crowdlaw process about the opportunities and challenges of big health data by going to aarp.crowd.law. You will be presented with a series of two-option questions about big health data. Tell us which, between the two options, is your greater concern. Again, these options might be dangers from the use of data or from the failure to use data.
Answer as many two-option questions as you like or add your own option! The more you tell us, the better we can understand big health data together.