BOSTON—Patients want and need tools that help them communicate and collaborate with their providers, said Nancy Finn, founder and president of consulting firm Communication Resources, speaking at the 2014 AMDIS Fall Symposium.
A shared medical record is important because it allows for the availability of all information right at the point of care. Patients also need transparent pricing, she said, citing articles and reports of very different prices for the same procedure. “Patients have not understood how to figure out prices for their treatment. They need guidance from the medical world and it doesn’t exist today. It’s very difficult to wade through the information on the web.”
Patients need good, easy access to reliable, vetted resources, Finn said. Most find the information but only by surfing around the internet.
Patient portals also could help with collaborative care, she said. But, fewer than half of hospitals and practices have an available portal for their patients. “They’re important because they allow patients to take charge and do the things they should be doing on their own like scheduling appointments and receiving notifications and reminders for those appointments and medications.”
Reminders and notifications have been “really amiss,” she said. Reminders and prompts influence medication adherence but “we know that 50 percent of patients do not adhere to medications prescribed by their doctors and studies have shown that chronic care patients often stop taking their medications within six months of their diagnosis.”
Reminders really make a difference in adherence, she said, but technology is not supplying the tools to patients.
Finn said she appreciates the challenge providers face trying to get patients signed up and regularly using a patient portal. “Somewhere in this medical infrastructure, we need people to help patients understand why a portal can be so critical to their health.” Physicians have been spending a lot of time and money on EHRs and now they’re expected to not only set up a patient portal but spend more time and money getting them to use it. “It’s a big problem but we have to compensate for a shortage of physicians through communication vehicles to delivery as good if not better care. We need some creative innovation to foster” use of portals.
Finn said patients should be establishing their own personal health records as well as reviewing the medical records of their providers. “The challenge for informatics today is to provide patients with easy-to-use tools to create their own personal health record. The ability to input additional health information on a patient portal would give everyone the full picture. Shared health records provide continuity of care, aggregate disparate silos of information, and avoid the pain, risk and expense of redundant tests.”
Health information exchanges could assist with this continuous care goal but they have proven to be extremely difficult to maintain and sustain, Finn said. The dream, she said, is a national exchange but even in the Boston area, large medical systems cannot link all their affiliates. With chronic care patients seeing multiple providers, “disparate silos of information are created with no way to bring them all together.”
Where is the transparency in cost issues, Finn asked. The price discrepancy for essentially the same procedure “is all over the place and it’s often not covered. I challenge you to think about how you can help patients and their physicians understand the pricing better before they go in for a procedure. There’s a lot to be done to make the cost of care information available to patients and to equalize the cost of care.”
With so many patients regularly using the internet to find health information, “patients desperately need tools that guide the way they search the web,” said Finn. “Too often, patients are finding information that has not been vetted.” Also, even those patients that can access their test results on a portal need a way to translate the information.
The 120 million people with chronic diseases probably need to take some kind of vital sign measurement every day so “we need better tools to share and evaluate that information,” she said, “and better ways to help chronic care patients stay on track and understand proper treatment.”
Finn called on medical informatics to plan for how to manage all the data and interpret them for better care. “Health informatics needs to work harder with patients and providers