frustrated black man looking at computer screen

A non-health care colleague of mine was struggling to understand why health care is achingly slow to overcome barriers to sharing data among patients and families, providers, the research community, and other key stakeholders. I’ve participated in many meetings trying to emancipate data for public good, so I rattled off a few of the major issues that arise every time. Every. Single. Time. I cited issues of marketplace competition; lack of trust among the stakeholders; concern about privacy and lack of control once released; business models that rely on withholding data; questions of who owns the data, the hangover of the fee-based payment model, etc. My colleague’s face clouded as he asked why the benefits to the patients and avoidance of harm are not powerful enough to compel health care—of all industries—to push through these barriers. At a loss for words, I mumbled something about it being an issue of culture and culture is hard to change. His reply? “Where there’s a will there’s a way. Health care doesn’t have an “issue of culture.” It has a crisis of integrity.” 

My colleague went on to define integrity as matching words to actions. He suggested that at any health care industry meeting, he could gather up all the mission statements from participants, toss them in the air, and defy any of us to find our own. His point was that we all emphasize the primacy of the patient and our unwavering focus on them. How then, could we fail to build trust and commitment to the principle of patient primacy and instead allow such things as business models and competitive forces to keep us from aligning our data sharing actions with our mission statement words? He noted that withholding data harms patients and, “You guys can’t billboard or tagline your way out of what you behave your way into.”

A Glimmer of Hope

The conversation haunted me. Truth does hurt—this is not how I want the health care system that I’ve worked in and on for my entire adult life to be regarded. The good news is that I see a real glimmer of hope and an unmistakable emergence of the will and leadership commitment required to face this inconvenient truth. My optimism was reinforced last week at the National Academy of Medicine Leadership Consortium Collaboration for a Value & Science-Driving Learning Health System meeting in Washington, DC. The theme of the meeting was “Generating Support and Demand for Health Data Sharing, Linkage, and Use.”  The gathering focused on the report of Stakeholder Statements generated by three work groups: 1) Patient & Family Leaders; 2) Research Oversight Leaders, and 3) Health Care Executives, as well as building support for and actualizing change.  

The work done by these groups was excellent and the discussions were robust and energizing. At several points throughout the meeting there was an urging of stakeholders to emphasize the ethics and impact of failing to share data. For example, the Statement of Patients and Families included a call for “including the sharing of data in standards of professionalism” and the Health Care Executives group enjoined stakeholders to reframe the discussion of the risks of data sharing to one of the risks of not sharing (both financial and ethical risks). The Research Oversight Leaders report included a recommendation to, “Convene [a] high-impact task force/panel to create a consensus statement—with signatories—to publicly affirm a set of principles and commitments of the collective benefit of data as a public good. (Emphasis theirs.)   

Building the Will and Finding the Way

As the Founding President and CEO of the Rhode Island Quality Institute (RIQI), the statewide Health Information Exchange (HIE), from 2002 – 2019, I was often asked how Rhode Island succeeded with getting fierce competitors to freely share data and to do so well before data exchange became critical to success under value-based payment. It was because these fierce competitors sat on the RIQI Board and we made a collective and unwavering commitment to the patient as the North Star. When questions such as “Who owns the data?” or “Why would I give my data to my competitors?” arose, it was answered through the lens of what we would want for our own loved ones and what we’d promised to the patients we serve. It was remarkable how this simple but extraordinarily powerful clarity of focus relegated seemingly impenetrable barriers to irrelevance. There was a will and we found a way.

My vision for our health care future is to see data sharing rise to its proper place as one of health care’s highest professional and ethical standards, signaling a commitment to collaboration in service of those whose lives literally depend on our behavior in this regard. This commitment would be explicitly emphasized in values statements; codes of conduct; principles of ethical behavior; standards of professional practice; as well as embedded in the conscience of each and every one of us involved in health and healing.

There’s a bit of ancient Chinese philosophy that has been translated as, “If names be not correct, language is not in accordance with the truth of things” (USC Annenberg, The Analects Attributed to Confucius, 551-479 BCE by Lao-Tse). Said another way, “The beginning of wisdom is to call something by its proper name.”  It’s time to call our “issue of culture” by its proper name—a crisis of integrity—and to hold ourselves accountable for reconciling our words and our actions when it comes to sharing data for public good.

To hear more on this topic from Laura and other leading experts, consider registering for AcademyHealth’s Health Data Leadership Institute Sept. 25-26.


Laura L. Adams

Catalyst - X4Health

Laura Adams is a nationally known digital health, innovation, and person-focused healthcare expert and speaker. Read Bio

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