Mental illness can be a lonely place. It can undermine your sense of self, your confidence in your own judgment. It can be shameful – a sign of weakness or, worse, of a flaw in your mind that makes you untrustworthy. You may be desperate for help, but terrified to ask.
The Internet, with its anonymity and vast amounts of information, might offer some answers, but it’s also daunting and shapeless. Search for “depression” on Google, and 87.3 million pages come up. “Schizophrenia” brings up 17.3 million. How do you sort through that?
A new Web site unveiled at the State House last Monday offers an alternative: a one-stop site where individuals, families, caregivers and health care professionals can find all the resources they need to learn about mental health issues, get help, even become advocates.
It’s called the Network of Care for Behavioral Health, and it’s Rhode Island’s connection to a national effort to empower consumers through health information technology.
The program – developed by Trilogy Integrated Resources, in San Rafael, Calif., with money from a state grant – has since grown to include projects in 30 states, though not all are online yet and each uses only one or a few of the six available modules.
The idea, as a brochure puts it, is to ensure there is “no wrong door” through which to enter the behavioral health system: You can go in and search for “depression,” say, pull up some articles, and from there you’ll be led to therapists and community mental health centers, or to support groups in the community. Or you can start by looking for a therapist, and then discover a wealth of other resources available to you.
Trilogy’s first Network of Care site focused on aging and long-term care for the elderly and people with disabilities. It was developed as a pilot project, said Bruce Bronzan, founder and president of Trilogy, and within 60 days, there were 13,000 to 14,000 people using the system.
The project was expanded to other counties, and new modules were built focusing on children, domestic violence, developmental disabilities and mental health. And as more participants have joined, the resources have grown.
The site has become multilingual, for example – Rhode Islanders can look for mental health information in Spanish, Russian, Cantonese, Tagalog, Cambodian, Vietnamese, Korean and American Sign Language, and they don’t even have to be able to read much in those languages, because they can pull up a video of a person reading the materials out loud.
The library, which covers more than 4,000 topics, draws on the federal government’s evidence-based practices database, Broznan noted, and it’s tied into HealthWise, “the best in the world.” There’s a news section covering local and national news, built by culling through about 2,000 articles each day. Altogether, between the resource directories and the libraries and a variety of other tools, Rhode Island’s site is about 250,000 pages deep, he said.
And in a first step toward a “personal health record,” widely viewed as one of the best promises of health information technology, the Network of Care allows users to set up a personal folder with the names and addresses of their health care providers, information about their condition and other tools. It’s all encrypted to comply with Health Insurance Portability and Accountability Act (HIPAA) requirements, Broznan said.
That feature is not only useful to individuals, Broznan noted, but even more to families caring for a loved one together. He and his sisters, he said, have used it to track and share information about their mother, who has Alzheimer’s disease.
Rhode Island connected with the Network of Care through U.S. Rep. Patrick J. Kennedy, an impassioned advocate both for mental health and for health care IT. He met Broznan, saw a demonstration and said, “We’re going to do this in Rhode Island, some way or another.”
Kennedy called Laura Adams, president and CEO of the Rhode Island Quality Institute, which has been leading efforts in Rhode Island to fully develop health care IT. Adams was already looking for ideas for a consumer-focused service, to take advantage of a funding pledge from the R.I. Health and Education Building Corporation, and this fit the bill.
One of the institute’s top sponsors, Blue Cross & Blue Shield of Rhode Island, endorsed the concept and provided funding as well, and providers and advocates signed on, including Bradley Hospital, Butler Hospital, Gateway Health Care Inc., Neighborhood Health Plan of Rhode Island, the Providence Center, Rhode Island Hospital and the Rhode Island Parent Information Network, among others.
“This is a terrific example of what can be accomplished with the collaboration of all the different people involved in the mental health delivery system,” Blue Cross President and CEO James E. Purcell said at the State House ceremony.
The biggest challenge, those involved in the behavioral health community say, will be to ensure that Rhode Islanders make the most of this resource.
Charles Gross, Rhode Island executive director of the National Alliance on Mental Illness, said he expects case managers to quickly embrace this new option, and he’s spreading the word in the community, “because I really was impressed.”
But he’s concerned that many people struggling with mental illness won’t be able to find their way to the site, or be able to get what they need from it, because going through a Web site may be too much for them. And the thousands of poor Rhode Islanders who need mental health services, he noted, may not have access to a computer at all – and they probably wouldn’t want to be reading up on mental illness at a public library terminal.
Adams said the Quality Institute is putting together an outreach plan that includes libraries, community centers and health care providers, as well as the media. And given the site’s success in California, she’s confident it will be embraced here, especially because it simplifies things so much by providing all the needed resources in one place.
“When people are struggling with mental health issues,” she said, “it can be a little overwhelming, and it can be difficult to find help. Finding help should not be overwhelming.”
