A slow journey toward PHRs

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 (https://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.

Some Progress

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.

Marlowe Greenberg, CEO of Foothold Technology, whose software is used by hundreds of behavioral health organizations, says that he is not yet hearing demand from customers to provide modules that allow consumers to have access to their records.

“If patients could trust the security of something like Microsoft's HealthVault, then it would be wonderful as a place to keep their personal records,” he says. But one hang-up is interoperability with providers' EMRs. The information in PHRs is most valuable if patients can share it easily with clinicians. “The system the doctor or provider needs to use would have to reformat that information to get at it,” says Greenberg, who is SATVA's chair-elect. “Those two pools of information are in very different formats now. Having them in two systems sort of eviscerates the usefulness of both of them.”

But some of those barriers are beginning to disappear. To address the issue of patient-physician communications, Medem, Inc., has a PHR called iHealth Record. Medem was founded by the American Medical Association and other medical specialty societies to offer physician practices an online suite of medical practice Web sites called iHealth. Medem has integrated iHealth with Google Health to allow users to share information from their Google Health profile with doctors using iHealth. The iHealth Record has been available for three years and has 500,000 users and 10,000 physicians actively promoting it, according to Medem CEO Edward Fotsch, MD.

“The most important thing we hear is that it is a vehicle for sharing information with their doctors, rather than for just abstractly gathering the information for their own use,” he says.

Dr. Fotsch notes the importance of such communication especially in behavioral healthcare. “Rather than getting to an appointment and trying to remember how they felt earlier, [patients] can start writing it into an online repository that they control, and then if they want to share that with a psychologist or psychiatrist, they can,” he says. “People tend to be more willing to type something in than to say it verbally.”

Tethered PHRs

Some software vendors are creating consumer portals into providers' EMR systems. These portals usually allow consumers to see some of their record, to send e-mails, and to schedule appointments, but not to enter or change any data. These often are referred to as “tethered” PHRs because they are linked to a single provider's or health plan's system and data, which also limits their usefulness. For instance, an individual could see a primary care physician, dentist, and psychologist who each has his/her own tethered PHR—none of which can exchange data.

One example of a tethered PHR is Netsmart's ConsumerConnect Web portal. Scalia showed clients a prototype a year ago, and focused on changing demographics to convince them of its relevance. “I showed them the schizophrenic-bipolar group in MySpace,” he recalls. “There are 1,800 users. They might talk about medications they're on, or they might talk about a U2 concert.” Scalia points to consumer studies finding that younger consumers want to interact with clinicians via the Web, e-mail, or text messages. “You might push them text messages to remind them to take meds,” Scalia explains, “so the technologies can lend to continuity of care.”

ConsumerConnect was released this past May, and Netsmart is working on its first installations this summer. Scalia acknowledges there are still many issues to work through. “There's no unanimity about who should have control over the data,” he says. Some advocates say consumers should see and control everything, while some providers want to control what consumers see. Netsmart built its system with settings to allow organizations to select which data to share.

Another tethered PHR is Kaiser Permanente's member-facing portal called My Health Manager, which consumers can use to see lab results or e-mail their physicians. Kaiser is considering making those records interoperable with untethered PHRs that members set up separately. Recognizing that consumers want more control over their personal records, Kaiser has some of its employees participate in a pilot project that will provide interoperability between My Health Manager and Microsoft's HealthVault.

Untethered PHRs might be particularly valuable for behavioral health issues, says Ravi Poorsina, a senior communications consultant for Kaiser. “Because there can be a stigma attached to behavioral health, there are some things members may not want to share with their primary care physician,” she explains. “[An untethered PHR] allows them to control it. If a psychologist suggests that they start a journal, they can do it in their HealthVault PHR. That data will not automatically be transferred to their My Health Manager file. They can control what is transferred.” Poorsina notes that Kaiser recognizes that in the behavioral healthcare field, members are likely to see providers outside of Kaiser, so they need a place to centralize all their health information—which could be an untethered PHR.

Privacy Issues

Deborah Peel, MD, isn't surprised that Kaiser is finding that its consumer portal may not be enough, and that people might want to store their information in a truly independent place.

“I think PHRs created by insurers or employers are doomed from the start. They are suspect,” says Dr. Peel, founder of Patient Privacy Rights, a medical privacy watchdog group. Her organization pushes for legislation allowing consumers to opt in—or out—of any use of their personal health data in EMRs. She sees PHRs as having the potential to allow consumers to accumulate in their own health record information from every doctor, lab, and clinic they use. “That would have the richest data about you, and it would be in a trusted place such as a health record bank where you could keep it,” Dr. Peel explains. “We would then see researchers and pharmaceutical companies approach us for our data. That could be an unbelievably rich resource for research. That's our dream.” However, Patient Privacy Rights strongly emphasizes that it should be up to the individual to share that data, or not, for research purposes.

Fitting Into the National Picture

PHRs may help health IT organizations with problems they are having with behavioral health data as they try to form regional and national electronic record networks. In many cases state and federal laws forbid sharing mental health and substance use information without patient consent. Because of how these laws are written, regional health information organizations (RHIOs) either will have to exclude all sensitive data or give patients control over releasing that information. Health information exchanges are just beginning the difficult task of developing the technical requirements for sensitive information management within an EHR and RHIO, along with policies that must be in place for sensitive information management.

PHRs stored in independent health record banks (e.g., Microsoft's HealthVault) may be one potential solution, because they would allow patients to choose which data to share. But perhaps a more likely outcome is that behavioral health data will be excluded from health information networks.

Foothold Technology's Greenberg recalls being quite pessimistic after leaving a meeting about creating a statewide RHIO in New York. “I realized we're never going to get behavioral healthcare into this because the patients may or may not want the data shown,” he says. “We're never going to get this done unless the consumer has the control to determine who should see what.”

Financial Barriers

In early 2007, Ronald W. Manderscheid, PhD, director of mental health and substance use programs at the consulting firm SRA International, Inc., gave a talk on PHRs to a national meeting of state mental health directors. He asked how many states were working on PHRs. “Nobody raised their hand,” he remembers with disbelief. “Not even one.”

Dr. Manderscheid, who served on an American Health Information Community task force that made recommendations to the federal government regarding PHRs for people with disabilities (see sidebar), says funding is the main reason behavioral healthcare lags behind the rest of healthcare in IT adoption. “Behavioral healthcare has been squeezed financially for years, so there is not excess money to pay for technology advances,” he says. “The outcome is that we are years behind where we should be.”

Dr. Manderscheid argues that state mental health officials should be fighting for a seat at the table when health technology ventures are being discussed. “Other leaders would plow ahead with planning without the slightest thought of mental health or substance abuse,” he says. “Behavioral health is a disconnected backwater.”

Yet Dr. Manderscheid is optimistic about the PHRs' potential role in behavioral healthcare, noting that one can easily build a business case for PHRs for the disability population. He points out that the United States spends $2.3 trillion per year on health, and something like 75% of that is spent on chronic care, with a good chunk of that spent on people with disabilities. “We are currently dealing with those patients in an inefficient, stovepipe manner,” he says. “PHRs have the capability to transcend that. We say we want a system where consumers and families drive the change, and empowerment that is resiliency- and recovery-oriented, with shared decision making. Well, PHRs are one way to make that happen.”

Dr. Manderscheid believes part of the solution is going to come from consumer and disability advocacy groups pushing to make these tools available. Another avenue will be federally funded health IT groups working on certification standards for PHRs. “Of course,” he adds, “all of that is way down the hill from where we are now.”

David Raths is a freelance writer focused on health information technology. He writes regularly for the Behavioral Healthcare sister publication, Healthcare Informatics.

Behavioral Healthcare 2008 August;28(8):22-26