ImproveCareNow was chosen as one of eight comparative case studies by the Project on Transparency and Technology for Better Health at the Harvard Kennedy School Ash Center for Democratic Governance and Innovation. In Exchanging Information to Create a Learning Health System: The ImproveCareNow Approach to Engagement, author Elena Fagotto elaborates on the power of learning networks, such as ImproveCareNow, to “enable different groups to exchange knowledge and co-create a learning health system to improve pediatric IBD Care.”

ImproveCareNow community members, including patients, parents and clinicians, were interviewed and contributed to the case studies’ findings.  

"It’s really exciting that ICN has the visibility to be chosen for one of these case studies – it’s a recognition of being on the cutting edge," says Michael Seid, PhD, scientific lead for ImproveCareNow’s engagement efforts.

A number of limitations were highlighted in the report, including that too many patients and families are still not aware of all the value that ImproveCareNow offers.

As Seid says, “These shortcomings – not enough people are aware of ICN and the resources are not yet personalized – are exactly why we’ve been working on awareness campaigns and on understanding how better to connect people with what is needed, when it’s needed."

The $1 million grant from the David R. Clare and Margaret C. Clare Foundation includes studying and implementing methods to empower patients.

We invite everyone interested in getting kids with Crohn’s disease and ulcerative colitis better right now to join 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 the Project on Transparency and Technology for Better Health

The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives.  The project wants to understand which characteristics are more likely to support patient empowerment, at a general level and for vulnerable populations. Evidence from the case studies will allow  development of several hypotheses linking data sharing to patient empowerment and better health. These findings fill a critical gap in the literature and can improve the design of future data sharing platforms. This project is part of the Transparency Policy Project.

About the Author

Elena Fagotto is the Transparency Policy Project’s Director of Research. She has been affiliated with the Project since its inception and her research focuses on information disclosure to minimize health and safety risks to the public, regulatory policy, and transnational regulatory regimes. She investigates how technology changes the dynamics of transparency and empowers citizens. She has analyzed dozens of US and international transparency policies, and has published extensively on the role of information disclosure as a regulatory tool and on institutional designs to make transparency more effective. She is a graduate of Harvard Kennedy School and LUISS University in Rome. She has a PhD in Law and Economics from Erasmus University Rotterdam.


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