Opinion

Emancipating Data: Science in the Open Is Key to Understanding Value

Science has driven rapid health care advancements over the last century that have improved our ability to prevent, detect, treat and even cure disease. And yet, the clinical, translational and implementation research systems that bring these innovations to us are siloed, lack transparency and are slow to yield insights about effectiveness and, ultimately, value to the patient.

Health care data (as legendary venture capitalist John Doerr recently put it) is literally incarcerated.  

This should not be surprising. Academic scientists’ careers often depend on publication, resulting in little incentive to collaborate or share data and research for replication. Research institutions, drug companies, health plans and employers are even more stringent about proprietary research and access to data.

This lack of transparency and collaboration creates barriers to efficient learning and dissemination to practice. Moreover, it hampers the ability to innovate in research methodologies and to foster collective understanding of the value of such innovations to patient care.

Positive change is afoot in the scientific community, however, as a broad open-science movement pushes for greater transparency and access at all levels — from data and code to results, clinical guidelines and publications. Such openness is intended to provide transparency into the scientists’ work, facilitate replication of experiments, encourage investigational collaboration and feedback, and ultimately accelerate the scientific process.

There is still a long way to go, but progress is evident. For example, in the wake of federal funding cuts that forced the Agency for Healthcare Research and Quality to shut down the National Guideline Clearinghouse, the ECRI Institute, an independent, nonprofit patient safety organization that operated the NGC for 20 years, painstakingly developed and launched a new portal to expertly vetted, evidence-based guideline briefs and scorecards, which is intended to grow over time as more trustworthy clinical guidelines become available.

While negative results are seldom reported and many journals still have steep paywalls restricting access to studies, there is an increasing number of open-access journals requiring authors to post data, models and formulas publicly. Earlier last year, the Journal of the American Medical Association launched JAMA Network Open, a fully open access, general medical journal that offers peer-reviewed original research and commentary. JAMA’s vision is to use new and emerging technologies to enhance communication of all content and make it freely available.

In the health care marketplace, the need for openness goes beyond foundational science and academic publications to data that inform real-world decision-making at the bedside, and in coverage and payment.

Without access to all data (both positive and negative) on therapies, for example, clinicians cannot make the best decisions. And without access to real-world data and methods for incorporating it into value assessment, payers and employers cannot maximize value in benefit design. If we are to move toward value-based reimbursement, openness is a prerequisite.

That’s why the Innovation and Value Initiative conceived the Open-Source Value Platform as an open laboratory for creating more sophisticated, transparent and flexible systems to assess value in health care. We think the OSVP is an important step toward the openness needed to adequately measure value in health care. But even these efforts can only go so far without open access to the varied data that drives all value assessment.

Doerr is right. We need to emancipate data to improve our decision-making in health care. The principles of open science are needed in the field of health care value assessment to promote trust and a shared commitment to improvement.

 

Jennifer Bright is executive director of the Innovation and Value Initiative.

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