Patients and Families Statement Highlights Susan Woods Society for Participatory Medicine Christine Bechtel X4 Health Spelling

Barriers Patient/Family: Access, Contribute To, Share Data CULTURE ORGANIZATION PRAGMATIC POLICY Heavy focus on PGHD. Bullet 1 - Data Users Data Providers Leadership Strategy Workflows Values

Culture vision • leadership • strategy Barriers Low appreciation of patients & families as key data users and data providers Myths: patients don’t want, don’t understand or harmed by information Data provided by patient and proxies may not be trusted, hampers efficiency and adds time to workflows

Culture vision • leadership • strategy Solutions Data transparency improves care and outcomes Disseminate evidence on patients as data users and providers; risk of not sharing data Engage certifying and specialty boards to promote data sharing with patients Include data sharing in standards of professionalism Develop tools for clinicians & patients on data sharing opportunities Encourage leaders to embed data sharing in strategy and dashboards Start with Why Golden Circle, Simon Sinek

Organizational Barriers Solutions Practices perpetuate HIPAA is about privacy, not portability Focus is on clinician generated and EHR data Few vehicles to share data or collect patient generated data Trust has been weakened Solutions Develop campaigns highlighting value of data transparency, target health systems, professional societies, malpractice orgs. Develop measures on access to, use of, and value of sharing data Demonstrate efficiencies collecting data directly from patients Publicly report measures of access and data sharing on Medicare.gov, http://www.patientrecordscorecard.com/

Pragmatic Barriers Patients want but do not have easy, ongoing access to their health data Lack of workflows and technologies that make it easy for clinicians to incorporate patient generated or patient held data Follow the $$$: Fee For Service doesn’t reward data sharing Insufficient appreciation among stakeholders that patients and families can create value when they have and/or share their data ePatient Dave DeBronkart tries to get his health data Jeff H. in North Carolina tries to reconcile his health data

Pragmatic Solutions ONC or other entity create Challenge to develop viable ways for real-time access to, visualization and use of patient data via How can we make it easy to “drag and drop” between EHR and PHR? APIs coming online – widespread education and implementation to let the market innovate. (free the data!) Establish opportunities to contribute data to publicly funded research projects. End irrational thinking re PGHD: Recognize the clipboard as the OG source of truth show how electronic records are better!

Policy & Regulatory Barriers Solutions Reimbursement does not enable or accelerate health information sharing in a care context US privacy policy is spread across regulations and laws (HIPAA, Fair Trade, etc.) Mobile apps not covered by HIPAA, what about Amazon shopping data, etc. Solutions Updates HIPAA for digital age post 1996 HIPAA enforcement Address gaps in privacy law with mobile apps, big data Improve reimbursement to access, review and use patient data Data donors: establish their rights to receive research results in return for their data donation