Patients and Families Statement Highlights

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

2. Patient/Family: Access, Contribute To, Share Data Barriers POLICY PRAGMATIC CULTURE ORGANIZATION Data Users Data Providers Leadership Strategy Workflows Values

3. Culturevision • 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

4. Culturevision • 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

5. Organizational Barriers • 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/

6. 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

7. 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!

8. Policy & Regulatory Barriers • 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