Recent consensus sets stage for further progress with universal patient health records (PHRs)
Efforts to advance use of a universal electronic patient health record (PHR) got a boost recently. The creation of a Nationwide Health Information Network (NHIN) moved closer to reality with announcement of consensus among more than 100 stakeholders on guidelines for ensuring consumer-friendly features, operational efficiencies, privacy, and security.
Connecting for Health, a public-private collaboration of health sector organizations and technology innovators, developed a common framework for building a network of networks. The framework provides specific technology, practice and policy approaches for consumers to securely obtain copies of their personal health records (PHRs) from various provider sources that support an online PHR service. Once stored on services like GoogleHealth or Healthvault, PHRs can be instantly shared with trusted health providers.
In a joint demonstration, Connecting for Health and Computer Science Corporation worked together to successfully test a NHIN prototype built on the common framework. The prototype transferred healthcare data between the Massachusetts Health Data Consortium, Indiana Health Information Exchange, Mendocino Health Records Exchange, and public health departments in Boston, Indianapolis and Mendocino County, California.
As previously reported by Dark Daily, technology companies, healthcare delivery systems, health insurers, and large employers are all offering options for consumers: 1) to store copies of their health information; and, 2) to connect to online health services. The common framework comes at an opportune time. A growing number of entities offer PHRs and other health-related services. But these consumer-oriented service packages are evolving without common standards, practices, or expectations.
It’s widely accepted that an electronic medical records (EMR) system could improve medical outcomes and reduce healthcare costs. A national survey of 1,580 people, which was sponsored by the Markle Foundation, indicates that Americans overwhelmingly view online PHRs as important to both prevent medical errors and improve quality of care, while allowing them to manage their personal healthcare.
But the vast majority of respondents worried about security issues. They said that having key privacy practices in place would be a factor in their decision to use any PHR service. Three-quarters of participants expected the federal government to establish rules to protect electronic health information.
While the common framework addresses security issues, the Connecting for Health collaborative called for the National Institute of Standards and trusted consumer advocate groups to study the security practices and help set benchmarks. That way, consumers can be reassured their identity is protected and personal information will not be used inappropriately.
Americans understand the benefits of having their health information available over the Internet and are ready to do their part to improve the healthcare system, suggests Zoë Baird, president of the Markle Foundation. But consumers have significant privacy concerns that must be addressed to have sufficient consumer confidence to support a national commitment to electronic health records.
For clinical laboratory managers and pathologists, adoption of PHR guidelines by such a large collaborative of public and private organizations shows that this goal has wide support. However, experience over the past two decades has repeatedly demonstrated that the technical and political challenges of moving healthcare data across different healthcare organizations remain daunting.