Patients with a chronic disease like multiple sclerosis — as well as others who rely on publicly funded health programs through Medicaid and Medicare — need accurate, inclusive information about all the resources available to them.
There’s a good chance they’re not getting it.
That’s because the range of programs is so extensive that even employees of the state Department of Health aren’t aware of all of the offerings, according to Cathleen Bennett, director of state health policy and strategic planning.
Bennett characterized the issue as “probably one of the most complex” that state health officials face, noting a federal study that found that no one healthcare provider could help patients find all the resources available to them.
The extent of the problem becomes apparent, given that any municipality
can have dozens of different publicly funded health and social service providers.
“I’ve been with the Department of Health for two and a half years now,” Bennett said, “and I’ll be surprised when I hear,” that the state provides a particular program.
Bennett said coordinating information could be particularly challenging for patients with chronic diseases, since they receive care from multiple providers. Tools such as a website that includes comprehensive links to programs or smartphone applications could be developed to coordinate the available information, she added.
A three-year grant that the state has received from the federal Centers for Disease Control and Prevention, which focuses on coordinating care for chronic diseases, should be useful in this effort, Bennett said. She also indicated that
many programs are in different “silos,” which makes it difficult to share information.
This issue is likely to grow in importance as the 2010 Affordable Care Act moves a growing number of low-income patients into the federally funded Medicaid program.
The difficulty that patients who rely on publicly funded health programs face in trying to learn about all of the resources that could benefit them was raised by Stephanie Hunsinger, the advocacy manager for the National Multiple Sclerosis Society.
She said that it can be frustrating for those who rely on Medicare and Medicaid, as well as their family caregivers, to get a handle on everything that’s available to them.
Hunsinger said it would be beneficial if patients could call a state office and have officials walk them through what is available.
“If as stakeholders and the state that’s providing the services, if we’re not aware of what’s available, how do we expect people to truly be able to manage their disease in a effective and efficient way?” Hunsinger asked.
Another initiative to keep patients better informed about health programs is being pursued by the state’s Medicaid Long-Term Funding Advisory Council, according to
Sherl Brand, a vice president of the Visiting Nurse Association Health Group.
Brand, who serves as the council’s co-chairwoman, said the initiative hopes to bring together insurers and healthcare providers to develop a method for delivering information to both consumers and providers,
Consumers who don’t know where to begin need to be able to rely on providers or other stakeholders, like nonprofit organizations that support patients. But they also don’t know where to find complete information, Brand said.
“A lot of us know a lot of things, but not everything,” Brand said.
Bennett suggested that some of the offices and providers that patients work with already are a good source of knowledge about many programs.
Seniors, she said, frequently learn about health programs through county-level area agencies on aging (AAAs), while family caregivers can learn informally about resources from home health aides.
The issue was raised at a Healthcare Institute of New Jersey event focusing on chronic disease management.
“I’m not really sure what the exact answer is,” said Bennett, noting that the Department of Health’s NJ Parent Link might serve as a model.
“It’s got a link to every resource known to mankind that’s around newborns and young children, and truly it does a great job of organizing and giving you access to information, advice, or a starting place to go.”
Still, Bennett said it might be difficult to provide a similar service for those with chronic diseases.
“Not everybody’s disease progresses the same way, not everybody has the same co-conditions that come along with it,” so there isn’t a “norm” that can be used to build a website around, she said.
Bennett continued, “The best you can do, I think, is get to the point where you collaborate and say, ‘How do we create a tool that makes the information that is out there easily accessible?’”
“We’ve got three years to figure how to you integrate what are many different touchpoints from a series of programs that have always been siloed,” Bennett said. “How do we bring them together?”