In previous posts I’ve written about the need for professional associations, especially medical societies, to close the relevance gap. In brief, the relevance gap is the distance between an association’s traditional offerings and the reality of its members’ rapidly evolving professional lives. To close the relevance gap, associations must continually reinvent their products and services in order to keep pace with their members’ evolving expectations.
So, what does that evolutionary pathway look like for associations? Their journey is defined by an ongoing organizational recommitment to deeply understanding and better serving their members. It includes the development of innovative programs and services, the creation of new organizational structures, the nurturing of a resilient corporate culture, and a willingness to form new types of alliances.
I was thinking about medical societies and the need for novel alliances when I read the well-reported article by Rob Copeland, Dana Mattioli, and Melanie Evans in the Wall Street Journal entitled, “Inside Google’s Quest for Millions of Patient Records”. This exceptional article offers a detailed look at Google’s remarkably clumsy efforts to enter healthcare. After a failed effort to launch a consumer-oriented medical records product, Google is now attempting to collect and analyze vast amounts of patient data from some of America’s most prestigious medical centers and health systems. Many of my friends and colleagues’ practice in these institutions and I know them to be some of the most mission-driven and highly ethical people on the planet. Therefore, I’m certain they entered into these data partnerships with the very best intentions of improving care. However, these initiatives have been met with false starts, back-pedaling, patient outrage, federal investigations, and pearl clutching all around.
The WSJ article states that Google executives were “shocked” that patients objected to these large-scale clinical data collection initiatives. The fact that Google would find this shocking reveals the underlying problem. At its heart is the fact that big tech doesn’t understand the culture of healthcare; they treat health data as if it were no different than cat videos or snarky memes. As long as that’s the case, these efforts are doomed to failure.
In order to help address this cultural issue, Google has hired a well-respected physician and former CEO of Geisinger Clinic, Dr. David Feinberg, to lead Google Health.
It’s Dr. Feinberg’s contention that Google can be tremendously “helpful” to the healthcare community. I believe this to be true. I would go even further to suggest that it’s essential that Google, and other major tech companies, establish a significant and lasting presence in healthcare. With their vast technical, analytical, and data science resources, these entities can make a tremendous contribution to healthcare. I believe that big tech holds the key to remarkably important insights into areas such as epidemiology, evidence-based practice, health economics, access to clinical trials, care disparities, and much more.
The question, then, is not “Should Google be able to collect large amounts of patient data?” The question is “How best to do it?” How does the general public and regulatory agencies overcome their very valid concerns about big tech’s fast and loose approach to privacy? What will be the rules that govern data collection, storage, transmittal, and access? What rights will patients have to refuse to participate or to have access to their own data? What processes will be used to protect patient privacy and how will qualified researchers gain access to the de-identified data? These are only a few of the many issues that will need to be addressed. And, at a meta level, how are these rules to be established and how will their compliance be monitored?
I believe that the medical societies are the entities best positioned to take on this challenge. These non-profit professional associations were founded with a mission to educate, set quality standards, and provide peer review. In addition, many associations have a head start in clinical data governance through their own data registry and real-world evidence initiatives. I believe that a non-traditional alliance between big tech, patient advocates and medical societies is essential for the transparent, ethical and clinically appropriate use of patient data.
So how exactly could consensus be achieved between these very different parties? In a follow-up essay I’ll offer some thoughts as to how this non-traditional alliance could be constructed. Achieving consensus between the parties will not be quickly or easily accomplished. It does represent however, the quickest path to a durable roadmap for the ethical and clinically appropriate use of patient data.