Note: This blog adds a third perspective to those recently published by (1) National Coordinators Vindell Washington, Karen DeSalvo, Farzad Mostashari and David Blumenthal, and by (2) John Halamka and Micky Tripathi, in the New England Journal of Medicine on September 7, 2017.
We appreciate the recent perspectives published in the New England Journal of Medicine on the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 and the positive impact that it and resulting health IT policies have had on U.S. health care.1,2 The perspectives highlighted the remarkable increase in adoption and use of electronic health records (EHRs) over the past eight years, thanks to the HITECH Act and to ONC’s and CMS’s implementation of it with major advice and help from the multi-stakeholder HIT Policy and Standards committees.
While those perspectives focused on the role of institutions, clinicians, and policymakers in health IT, we believe that there is an additional, indeed central, perspective—that of patients and consumers. While EHR adoption by the vast majority of hospitals and physician practices has brought us a long way from paper records, much of one’s health and care occurs outside the 15-minute clinical office visit in settings such as homes, community centers, and social service organizations. We increasingly recognize that 85-90 percent of one’s health status is explained by social and environmental determinants outside the clinical setting.3 The greatest promise from digital transformation may come from its impact outside of traditional health care settings. Harnessing the full potential of health IT will require new focus on people and their data collected outside the walls of the hospital and doctor’s office, and on uses and interventions that help patients as they are living their lives.
Viewing the evolving health IT landscape through the lens of the person and patient at the center of health and care, rather than the EHR, tells a different story. For example:
- Access: Patients’ access to their health information has dropped from 30-90 days under the Health Insurance Portability and Accountability Act (HIPAA)—which seems glacial in today’s always-on environment—to access electronically in 36-48 hours under the Meaningful Use program (Stage 3) and MACRA’s Advancing Care Information performance category.
- Online Access and Use: According to national surveys, the fraction of patients with online access to their own health information doubled from 2011 to 2014, from 26 percent to 50 percent.4
- Mobile Access and Use: Consumers today expect mobile, digital access to their information and services. Just as the ATM and online banking revolutionized financial transactions, ONC’s 2015 Edition of certified EHR technology now requires mobile access for patients (and providers) through mobile applications using open APIs.
Some have suggested that the Meaningful Use program and transition to EHRs have taken the joy out of practicing medicine, or have imposed significant burdens upon providers.5 There are important concerns about the interoperability and usability of EHRs for doctors, and how EHRs should integrate with the doctor’s evolving workflow. These concerns are often seen in similar national systemwide transformations and are significant and legitimate.
An equally important question, though, is what is the burden and impact on patients and individuals when EHRs and doctors do not provide the electronic access to one’s health information and health services demanded by 21st century needs? The emphasis on the experience of doctors in using their EHRs may lead us to ignore the equal importance of winning the hearts and minds of patients who seek the digital access and tools needed for shared care and care planning with their doctors.
Compared to our paper-based system, digital tools, even in their present immature forms, can provide a vast improvement for the patient seeking access to his or her health care information. How could we win patients’ hearts and minds if they still must find access to their health records in a basement office, request a form, fill it out, find a fax number, fax it, mail a $10 check, and hope for a CD ROM back. Yet this is still the situation in some hospitals and practices, even those with EHRs. If our goal is to promote shared decision-making, how can we accept a world in which doctors document their episodic plans of care in their EHRs, but the affected patients and family caregivers do not have the electronic access and digital tools necessary to participate in the shared care planning and ongoing decisions relevant to their care, to share their own data, or to connect their health information with other consumer tools of daily life? Imagine if you bought cable television service, but the programs were not available unless you drove to the cable provider’s office to view them there. Or you deposited your money at the bank, but could only access it by making a withdrawal in person at the bank branch during business hours. The shared care and care planning we all seek for better care, better health, and better value require that we focus on the patient’s perspective as well as the doctor’s perspective. They require that we leverage the immense synergy to be had in designing and building shared electronic information access and shared platforms and accessible digital tools that facilitate collaborative care.
Since the HITECH Act, the Office of the National Coordinator, Centers for Medicare & Medicaid Services, patient and community advocates, and multi-stakeholder collaborations such as the HIT Policy and Standards committees have driven critical advances to patient-centered policies, including:
- Online access to health information with mobile apps using open APIs;
- Patient-generated health data and patient-reported outcomes;
- Social and environmental determinants of health;
- Personal health goals, family caregivers, and personal health concerns; and
- More granular demographic data about the patient – such as race and ethnicity, sexual orientation and gender identity, primary language, functional and cognitive status – so doctors have much better data for clinical decision support tools and can identify and reduce health disparities.
But perhaps the biggest breakthrough will come from winning the hearts and minds of doctors and patients together. We see great opportunity and synergy in creating digital tools that allow individuals and providers to engage with each other and with a comprehensive set of health-related data in their shared pursuit of improving the health of the individual. The HITECH Act and the patient-centered perspectives and policies that followed provide a crucial foundation for this next stage of the work.
Robert M. Wachter, MD
Professor and Chair, Department of Medicine
University of California, San Francisco
Michael Blum, MD
Associate Vice Chancellor, Informatics
Executive Director, Center for Digital Health Innovation
Aaron Neinstein, MD
Director, Clinical Informatics
Center for Digital Health Innovation
Director, Health Policy
Center for Digital Health Innovation
1 Vindell Washington et al., “The HITECH Era and the Path Forward.,” The New England Journal of Medicine 377, no. 10 (September 7, 2017): 904–6, doi:10.1056/NEJMp1703370.
2 John D Halamka and Micky Tripathi, “The HITECH Era in Retrospect.,” The New England Journal of Medicine 377, no. 10 (September 7, 2017): 907–9, doi:10.1056/NEJMp1709851.
3 Robert Wood Johnson Foundation, “Frequently asked questions about the social determinants of health” (2010), available at http://www.rwjf.org/content/dam/files/rwjf-web-files/Research/2010/faqsocialdeterminants20101029.pdf.
4 National Partnership for Women & Families, Engaging Patients and Families: How Consumers Value and Use Health IT, p. 28 (Dec. 2014), available at http://www.nationalpartnership.org/research-library/health-care/HIT/engaging-patients-and-families.pdf.
5 Christine A Sinsky et al., “In Search of Joy in Practice: a Report of 23 High-Functioning Primary Care Practices.,” The Annals of Family Medicine 11, no. 3 (May 2013): 272–78, doi:10.1370/afm.1531.
About UCSF’s Center for Digital Health Innovation:
In 2013, the University of California, San Francisco founded its Center for Digital Health Innovation (CDHI), which partners with technology companies to solve real-world health problems and speed the implementation of innovation into everyday health care. CDHI is renowned for its thought leadership in digital health. For example, CDHI and Cisco are working together to build technology platforms and ecosystems that power digital health innovations and connect clinical data with dispersed patient-consumer data and synthesize them with powerful analytics to revolutionize health care nationwide. This service, called Health Stack, will consist of a digital health application marketplace, API services, and secure, cloud-hosted data interoperability across EHRs, devices, and apps. Health Stack will create and enable an ecosystem of innovative health apps that improve workflows, care quality, and patient engagement by creating true health data interoperability. Similarly, CDHI is partnering with Intel and GE to build algorithms and data models for enhanced clinical decision support behind the scenes and at the point of care.
UCSF’s Center for Digital Health Innovation recently submitted comments to the Office of the National Coordinator for Health Information Technology on important core use cases and cross-cutting themes for the nationwide interoperability and trusted exchange framework that ONC is developing to implement provisions of the 21st Century Cures Act.