As the behavioral healthcare field embraces electronic medical records (EMRs), it is beginning to understand the potential value of personal health records (PHRs) compiled and controlled by patients themselves. Like an EMR, a PHR contains a list of providers, medications, and test results, but it also might contain patient notes on the effectiveness of treatment plans and links to publications and organizations important to the individual. A PHR would be much more likely to contain a comprehensive record of all the providers an individual has seen than an EMR, a provider-owned and -managed record of health-related information on an individual. Because behavioral health data are sensitive, many in the field stress that consumer control over who can access the record is essential.
Besides dozens of smaller players, software behemoths Microsoft and Google are each developing platforms for PHRs, and some experts believe PHRs could have an even greater impact in behavioral healthcare than in primary care.
“All of the recovery models being developed now want to get the consumer involved in the care process,” says Kevin Scalia, executive vice- president for corporate development at Netsmart Technologies, which develops enterprise software products for health and human services providers and payers. Scalia also is the new chair of the Software and Technology Vendors' Association (SATVA).
PHRs, Scalia says, have the potential to be a great tool for providers developing treatment plans that involve patients keeping a journal or providing feedback. “Providers may want them to record what happens when they first wake up,” explains Scalia “That could be part of the intervention.”
PHRs are becoming popular because consumers are seeking to be more engaged in their own care. From his own experience with mental illness, Paul Cumming can explain why PHRs are valuable to behavioral health patients.
“It's hard for it to be a shared decision if we don't have our own information,” says Cumming, a San Diego resident who has struggled with bipolar disorder for years. “I like not being dependent on the doctor's chart.” Now that he uses a PHR, before seeing a doctor he can check his own records to see, for example, when he started and stopped taking a certain medication. “The information from another system's electronic medical record may or may not have made it into the doctor's system for this appointment,” he explains. “I like to accumulate my own [information]. Often you can't remember that information off the top of your head.”
Consumers' Personal Space
Cumming is part of a new generation of patients eager to take an active role in their care. As a consumer advocate, he became involved in the design of what may be the first PHR targeting behavioral health. Called My Folder, the record is part of the Network of Care for Behavioral Health (http://www.networkofcare.org), a series of Web sites for community mental health agencies developed seven years ago by Trilogy Integrated Resources, LLC. In fact, Cumming was so enthusiastic and articulate about the system's value that Trilogy hired him to be its national outreach and training coordinator.
Bruce Bronzan, president of Trilogy, says that its San Diego pilot was developed with input from a variety of focus groups, consumers, the National Alliance on Mental Illness, case managers, and program directors. “Early on we heard a desire for consumers to have the features of a PHR,” he says, “although I think the acronym didn't really even exist back then. Without knowing what we were doing, we created this really cool thing.”
Trilogy executives thought consumers might want to store all the information they could gather through the Network of Care Web sites in their own personal folder. That led to the realization that consumers also might want to include details about doctor visits, hospitals, and medication lists, as well as an emergency card with information about preexisting conditions they could print.
“The whole point of Network of Care is to empower individuals,” Bronzan says. “We want them to gather information on services, support groups, articles, and keep it in an organized way. It gives them more control over their life.”
Trilogy is working to enhance the PHR's features and interoperability. Network of Care has added recovery tools, including the Wellness Recovery Action Plan (WRAP) program in an e-learning format. “It helps individuals create their own WRAP and store it privately in their PHR,” Bronzan says. “They can also invite someone in to share parts of it. They can regulate which parts of the record they want that person to have access to, and this was very much to the pleasure of the mental health community because that's exactly what they want.”
Initially users had to type in any information they wanted to store. In a planned update, users will be able to scan it in. “Or you can drop in items in the format they came in, such as a lab report or a Microsoft Word document,” Bronzan says. “We are working on enhancing that interoperability to transfer information from other sources.”
The Network of Care for Behavioral Health has grown to 400 sites and more than 15,000 users in 27 states. The state- or county-based entities that administer mental health services pay a fee for the development and maintenance of the site. The PHRs and all other information on the sites are free to the users.
Although stories of engaged and tech-savvy consumers like Cumming are encouraging, progress on PHRs for behavioral health patients is slow and is being driven more by software vendors than by demand from agencies that serve consumers.