Michigan as a Learning Health System The Trust Fabric Jodyn Platt, PhD Connecting Michigan For Health Lansing, Michigan June 9, 2016

Storage Processing Analytics Data collection Data sharing Knowledge sharing Archiving Living (data) Life Cycles

One Time Consent Biospecimen Data Business models Store Share Use Collect Clinical Quality improvement Research LocalState National Public health TRUST Security Learning

Making trust visible Trust = f (Competency + Integrity + Fidelity)

Making trust measurable Provider trust – Information-facilitated teamwork (Soulakis) – Payment systems (Wilk) Public trust – Policy and process Community Power Structures Life Cycle of Data in Precision Oncology (Platt, Kardia, CancerLINQ, MIONCOSEQ, MiHIN) Informed consent process; (e.g., Supplementary forms) (Choi, Manion) Care provider team Patient Caregivers Patient Caregivers Environment: Policy Payment Systems Culture Clinic

Trust is powered by connection People * (Ideas+Structures+People)

Social + technical People * Ideas Ethical, Legal, and Social Implications of Learning Health Systems Symposium November 18, 2016Ann Arbor, Michigan Conceptual maps Policy Frameworks

Mapping community power People *Structures Community Health Systems

Leveraging the power of networks People * People Funded by: R01 HD067264, NICHD, Kardia PI 1 RC1 HG , NHGRI, Kardia, PI ~4.5 million bloodspots in a biobank available for research

This ad 101,344 people 1 week 10,808 post clicks 164 Likes, Comments, Shares Post Spend $225 Total campaign 2,000,000 people 11-weeks $15K Funded by: R01 HD067264, NICHD, Kardia PI

One Time Consent Biospecimen Data Business models Store Share Use Collect Clinical Quality improvement Research LocalState National Public health Security TRUST Learning TRUST