Much like the authors of Personal Health Records: The Essential Missing Element in 21st Century Healthcare, the Markle Foundation’s Connecting for Health considers expanding consumer access to information tools that enable them to better manage their health to be critical to transforming the nation’s healthcare system.

Earlier this year, the organization’s Connecting for Health collaborative issued its Common Framework for Networked Personal Health Information, a combination of technology and policy approaches for privacy and security, so that consumers can obtain copies of their health information and authorize the sharing of that information in a trustworthy electronic environment.

The framework’s end goal is to increase consumer adoption of PHRs and other similar applications by establishing best practices to improve access and protect privacy.

“Our view is that for these applications to take off in the 21st century, they have to be networked to important information, as well as other applications and services,” says Josh Lemieux, the Markle Foundation’s director of personal health technology.

Lemieux sees the greatest obstacles to advancing PHR adoption as a combination of factors, including a limited expectation among consumers that they will have meaningful access to and control over their health information and a limited view of consumers as information brokers among the healthcare industry.

“Many healthcare systems and services have approached information and data as things that they hold rather than commodities that they share,” Lemieux says. “But it’s only through the sharing of information that services can be most helpful to consumers because, in most cases, no one system has all the information necessary to help a consumer make good decisions or maintain their health in an optimal way. The fact that the economics of the U.S. healthcare sector haven’t really embraced the sharing of information affects both the markets for the EMRs maintained by providers and PHRs maintained by consumers. Without a demand for this information, these applications will be limited in their growth potential.”

What is required is developing a business case for investing in the integration across systems to facilitate easier sharing of information with consumers. Rewarding improved coordination of care will ultimately lead to the development of better ways to capture, analyze, and share information to benefit consumers.

According to Lemieux, this ultimately will lead to an environment that will enable consumers to do the following:

• have a rich variety of tools to help make health decisions for selecting providers, health plans, pharmacies, treatments, etc;

• be engaged in and empowered with new communication and decision tools that make them active partners in improving their health;

• be viewed as important participants and contributors to the network;

• benefit from an open, trusted network that supports a variety of applications, services, and tools available to them for use in improving their health and/or healthcare;

• be included in participatory models for research, postmarket surveillance efforts, quality improvement initiatives, and clinical trials; and

• have more efficient and satisfying means to communicate with clinicians.

“The consumer role is going to expand just as it has in other sectors. It doesn’t mean that consumers will be taking over provider systems. They’ll be working with electronic copies of the same information in applications that are more accessible and useful to them as consumers. There’s no need to fixate on ownership of information. What we need to focus on is providing the opportunity and a sound, safe policy environment that protects privacy and security for people to share that information for better, safer, more efficient care,” says Lemieux.

There also needs to be a common understanding of what information is available for sharing and the expectation of privacy and security to ensure it is trusted by both consumers and medical professionals.

Most importantly, there must be an acknowledgement that the PHR is fundamentally different than a provider’s EHR. While both require basic core principles guiding privacy and security, the specific policies and practices must be adapted to address the different contexts in which the information is being used. That was the goal of the collaborative’s framework.

“If a consumer is logging into a personal health record, it’s fundamentally different than a provider logging into an enterprise EHR. The policies and practices need to be adopted to fit those different contexts and ensure proper authentication, security, interface, and access in those contexts,” says Lemieux. “One-size-fits-all is not appropriate when it comes to specific practices, although certainly all health information technology should be guided by basic core principles. It should start with the same base principles, then derive practices that are appropriate to fit the needs of the technology users.”