You Say You Want an Evolution

The 22nd Annual HCSRN Conference is in the books, and the conference planning team deserves praise and gratitude for hosting a terrific event. Along with the slate of plenary and concurrent sessions, this year’s program included three well-received symposia on: precision oncology, methods for patient engagement in research, and mentoring and training.  It’s striking to consider the wide range of topics and expertise across the network, which is one of our differentiating features. 

 

In my inaugural address to the network as Executive Director, I took the opportunity to observe a force that is increasingly pervasive in the research enterprise, and which presents opportunities for the HCSRN—the increasing energy around data sharing.  If you take a look at the thought leadership pieces coming out of the Institute of Medicine (now the National Academy of Medicine) as well as commentaries from editors of major medical journals, and the actions of the federal government, it is clear that the drumbeat in support of data sharing is getting stronger. Many influential leaders at NIH, the FDA, and PCORI are urging that we maximize the utility and return on investment of research data, even while noting the numerous technical, sociocultural, and financial challenges. 

 

Those of us who utilize our health systems’ data for research know first-hand that the deep knowledge about the data—all the quirks and idiosyncrasies—is every bit as valuable as a dataset itself. So we need to start thinking more systematically and creatively about how to document the critical metadata and deeper insights about data provenance. The data are the backbone and we need to make sure that our backbone is as strong as possible.

 

In his plenary comments, Governing Board Chair Jerry Gurwitz discussed the need for the HCSRN to evolve, noting that adaptation to new conditions makes an organism stronger. The HCSRN has evolved considerably over 22 years, and it’s exhibited tremendous foresight in developing a Common Data Model, IRB streamlining approaches, and tools to facilitate collaboration. Moreover, our high quality science has helped shape health and health care, and it will continue to do so.  But the conditions around us will continue to evolve, thus, the HCSRN must continue to adapt in order to thrive.  As I embark on my journey as Executive Director, I look forward to being a part of this evolution, and welcome your input on how we can continue to grow stronger.

 

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