Raising the Bar on Data Transparency in Healthcare Research: Sharing Data Is Imperative

Raising the Bar on Data Transparency in Healthcare Research: Sharing Data Is Imperative

Coauthored by Michael R. Solomon, Ph.D. and James Gillespie, Ph.D.

Since our discussion about the Transparency and Openness Promotion (TOP) guidelines, the chorus for greater data transparency in research is growing louder with another dimension to the conversation.  Stakeholders with big megaphones are calling on providers and researchers to escalate efforts to share data with other researchers and with the public. A recent JAMA editorial challenges the medical research community to make data sharing “…an ethical and scientific imperative.” According to the authors, the sharing of data from clinical trials at the individual participant level would foster more study replication (a key TOP standard) and re-analysis of studies previously done, strengthen meta-analysis, and encourage more efforts to test the applicability of results to different types of patients or settings.   

We believe that, rather than a dry academic point, an increase in transparency can translate directly into lowering drug costs, speeding medicines to market, and reducing human suffering.

In the Center for Healthcare Research’s world of integrated health systems and value-based care, the sharing of data across organizations and studies has the potential to produce more meaningful, powerful results that apply to broader populations. However, the lack of data sharing is pervasive – even on the front lines of direct patient care. A recent survey revealed that, despite most physicians now using electronic health records, more than half are not sharing electronic health data on their patients with clinicians in other practices.  That’s not pro-science, and more disturbingly, it’s not patient-centric.

To put the strategic importance of data sharing and transparency at all levels into perspective, we only need to look at the National Cancer Moonshot Initiative. Vice President Joe Biden called out providers and researchers to share their data: “In order for this promise [i.e., understanding the causes of cancer] to be realized, we first need to generate enough data to qualify as big data.” Droves of data that could increase the power and applicability of studies remain stored in silos because of data ownership and privacy concerns, competitive dynamics, and technological challenges (the latter discussed at this blog in the past).

The sharing of data is a cornerstone of data transparency with major implications for both the delivery of high-quality health care and the conducting of high-quality research studies. To better coordinate care and make informed medical decisions, providers need to see a patient’s health history across the continuum and regardless of the care setting. Researchers also need access to a longitudinal view of the health of a specific, well-defined population to meet the TOP transparency and study replicability standards.

Just imagine the impact a study leveraging Big Data sourced from across health care organizations and complying with the TOP standards, with one of the School of Advanced Studies’ Health Research Centers as the sponsor, would have on the broader healthcare community. CHR Fellows and Associates, what can we do to advance this strategy and build on our growing reputation for research and scholarship?

 

Comments

Phil Davidson's picture Phil Davidson | January 9, 2017 12:31 pm MST

Colleages, 

Within the context of data sharing and healthcare, I would like to share the following link and information.

The Insitute for the Future (IFTF), is a non-profit thinktank out in California.  This group is a spinoff from the RAND Corporation who developed the Delphi Technique.  Both the Delphi and healthcare are topics of much interest to me personally.  The report referenced in this link is a future look at the Affordable Care Act (ACA) and the possible consequences of things to come.  There is a ton of information here, ready made for interested faculty and doctoral students.

http://www.iftf.org/future-now/article-detail/igniting-leadership-in-the...

Phil Davidson

Michael R. Solomon's picture Michael R. Solomon | January 10, 2017 8:38 am MST

Phil,

Thank you for sharing this very topical and informative piece with the community. The first three "directional changes" identified are all inter-related and offer opportunities for applied research in the field. "A re-design of interventions to treat whole populations" is especially intriguing because of the need to explore change in outcomes at a population level.

 

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