ImproveCareNow stakeholders, including clinicians, patients, parents and leadership have been working together with small scale to improve the ICN network’s governance of data with goals of ensuring the safety of our community, the progression of research, and the achievement of quality improvement aims. This collaboration launched at the Spring 2019 Community Conference and the first phase is now complete, which culminated in the “Governing the ImproveCareNow Network” report.

Included in the report is a list of 27 recommendations that touch on the collaborations that enable network activity, as well as governance of digital assets. There is also an FAQ section and helpful worksheet and resources to facilitate conversations about the implementation of the recommendations.

“[These recommendations] are designed to help the ICN Network adopt community-led stewardship, adapt its data governance to modern risks, and better realize the Network’s values in practice.”

The recommendations are ambitious, and much of the work will take years, rather than months, to fully implement. Next steps include bringing together network leadership and the ICN project team to prioritize recommendations and devise a plan for moving forward. Some of the recommendations may require additional resources and collaborations.

If, after reading the report, you have questions or comments, we invite you to contact us.


About ImproveCareNow

ImproveCareNow is a Learning Health Network dedicated to transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network. We are enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. We invite everyone interested in getting kids with IBD better right now to join us!

About small scale

small scale is run by Keith Porcaro. Keith is a lawyer and technologist. He studies how technology mediates legal decision-making and build tools to help people navigate a technology mediated world. He is an affiliate at Harvard's Berkman Klein Center, a research affiliate at Duke's Center on Law and Technology, and an adjunct professor at Georgetown University Law Center and is licensed to practice law in California. Learn more at


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