Open

August 8, 2016

“Home is where our heart is” or so we say. Where we live, where we are from – who is part of our group and who is not – has deep and durable evolutionary and psychological roots. Along with food and clothing, shelter completes the base of Maslow’s hierarchal pyramid of human needs.

Shelters are composed of walls and as humans, walls provide us instinctive comfort. Yet as these behaviors and preferences profuse into organizations or societal systems they can come at a true cost.

Beyond the roof over our heads, walls (both physical and otherwise) are erected to provide protection from our fears. Yet all seek to limit, if not prevent, mixing – to regulate the movement of money, goods, people, information or perhaps ideology. For centuries walls have served their constructors well or so they believed.

Begun as early as 476 BC, the Great Wall in China spans over 13,000 miles and has served
as both regulator and protector of the Silk Road trading route. Constantinople prized its impenetrable outer wall as it also inspired the resilience of those who longed to breach it.

In more modern times, we’ve lived to see the before and after of endeavors like the Berlin Wall. And even today, their emotive force can trigger societal anxieties.

But it is the “walls” that we cannot easily see that most prune the possibilities of individuals, organizations and even societies. Be it tariffs, immigration policies, subconscious bias, non-compete agreements, data access rights, etc., that wall out others or wall people in that are the most notorious.

Although today we fear the intentions of outsiders, every country across the world has been transformed by the energy and optimism that are core to the spirit of those brave and often pioneering new arrivals.

When we evaluate the consequence of open boundaries the results are stunning. From the printing press to the Internet, countries in which information is un-cloistered outperform. The same holds for effective workforce policies.

But perhaps more personally impactful than all others will be the “walls” around the ways in which our own individual health information is handled. From the beginning of medicine, these details were sparse, anecdotal and inaccessible (or incomprehensible) even to the patient on whom they report. Not any longer, with electronic medical records, personalized genomics assessments, wearable sensors, voice, GPS, digital therapeutics and more – today our risk of disease, likelihood of treatment response, the potential for earlier intervention (or prevention) are all accruing in massive data warehouses. How these details are handled should mean a lot to us.

Similarly each year in the U.S., over 1 million patients volunteer to participate in clinical trials. Each embracing the risk of trying a yet-to-be-approved treatment or perhaps being randomized to the placebo group. All in the spirit of advancing the art of medicine while perhaps benefiting from the new discoveries themselves. For decades, these special data sets remained locked behind industrial strength closed doors. Yet important progress on clinical (and preclinical) data sharing and transparency is being made. Just this week, the impressive progress made in the Yale Open Data Access (YODA) Project was reviewed in the New England Journal of Medicine demonstrating that even these most complicated of data sets can be effectively and responsibly shared in a confidential manner with researchers around the world.

Aside from the tech giants like Google, Apple, Samsung, Intel among others, Uncle Sam (and governments across the world) are getting into the health information game as well. In the U.S., the “Precision Medicine Initiative” seeks to enroll one million (or more) individuals in the first four years and follow them for at least a decade; a new age Framingham study of the 21st century. Not to be out done, China seeks to profile 100 million!

Our first concern must center on privacy – as these details have the potential for numerous forms of misuse. While at the same time our expectations must demand that this information is always and in any way open for us; the one person on who it most meaningfully portends and on whose willingness and trust it entirely depends. As digital diaries of our lives and the means by which we may seek to find the path to better choices for ourselves and our families – a knowledge base on which we can begin to make highly informed decisions. As we opt-in we must assert our demand to keep personal data access fully available, portable and “open.” These data, along with those from clinical trials, can enable researchers, from across the world, whole new ways to advance science and medicine, while judicially protecting patients’ privacy as well confidentiality.

Perhaps nothing can tell us more about our future(s), than our recent past – if we listen.  And often patients can be the best listeners of all.