Among the new pressures likely to be put on health IT organizations following the passage of health care reform is the need to develop patient education programs that address another chronic U.S. health care problem -- patient ignorance.
The term health illiteracy refers to patients unable to understand enough about their own condition to make informed decisions about their care. Health illiteracy costs the U.S. health care system $17 billion per year in legal and operational costs, according to a 2004 national Institutes of Medicine (IOM) report. Moreover, the National Patient Safety Foundation said that health illiterates are hospitalized between 50% and 69% more often than those with greater health literacy.
To that end, the U.S. Dept. of Health and Human Services, The Joint Commission and the insurance consortium America's Health Insurance Plans are all pushing requirements for patient education programs as a way to improve quality of care and comply with Health Insurance Portability and Accountability Act (HIPAA) informed-consent requirements.
Much of the work in reaching out to patients will fall on IT -- though most of the responsibility will remain with patient education and advocates within health care organizations, according to Jack Santos, executive strategist at Burton Group Inc., who is also a former two-time hospital CIO and senior insurance company IT executive.
"As provider organizations, hospitals have the obligation for educating patients, so getting into patient education and health literacy is just unavoidable," he said. "As we move further into the new world of health IT, that's going to just permeate everything we do."
It's not clear that all health care organizations understand the requirement, let alone who should be fulfilling it or how it should be done, according to Kimberly Thompson, who researches and teaches risk analysis and decision science at the Harvard School of Public Health.
"It's very hard to get most people interested in educating patients," Thompson said. "Some hospitals are good at it and some are not; some physicians are terrific and some are terrible. There's very little emphasis, starting in medical schools, on adequately educating patients and there's very little consistency in how it's done."
Looking outside the organization to augment patient education programs
Big hospital systems such as Boston's Beth Israel Deaconess Medical Center publish reams of information to help educate patients about specific conditions and general health issues, according to Bill Gillis, the center’s manager of clinical application services.
Beth Israel does not produce the information itself, however, or even filter and repackage information from clinical sources. It buys the information in packaged services from Ebsco Publishing, which specializes in "evidence-based information" for consumers in services such as Health Library and other databases for libraries, hospitals or other clinical constituencies.
"That's the way most organizations should go about it -- outsource a lot of it so they're not reinventing the wheel all the time," Santos said.
We have to think more creatively about how people receive information. As a whole, we have a responsibility to find the right entry points, and be able to customize what we're telling patients.
Amelia Chappelle, geneticist, Genetic Alliance
Patient education programs actually present a huge opportunity for health care organizations, Thompson said. Most obviously well-informed patients who feel as if they understand and have a role in making decisions about their care are less likely to sue following a bad outcome, Thompson said. They are also less likely to walk into a doctor's office with six pages of questions from information they pulled indiscriminately off the Internet, she said.
"One of the challenges is that there are no clear standards or emphasis that we should be adequately educating patients or how to do it," Thompson said.
There is no shortage of medical or health information online, but smaller organizations do not have the resources even to republish existing content, let alone write their own, according to Angelike Gaunt, senior associate editor for the American Academy of Family Physicians, which uses its FamilyDoctor.org both as a consumer education site and a way to relieve physicians of the burden of educating patients.
"When a patient needs to know more than a physician can tell them in one session, they can point the patient off to our site, to one of our courses on particular conditions," Gaunt said. "Most [family physicians] don't have the resources to do it, so we give them a way to keep patients informed."
Even when the information is credible and objective, however, it can be ineffective if it's too generic for patients to relate to their own conditions, according to Amelia Chappelle, a geneticist by training who writes about health care for consumers at healthcare-advocacy organization the Genetic Alliance.
"We have to think more creatively about how people receive information," Chappelle said. "As a whole, we have a responsibility to find the right entry points, and be able to customize what we're telling patients for their own needs instead of just having a broad swath of what we want you to learn."
The real leap forward in patient education programs will not come when hospitals are consistently able to post good health care information on their websites, however, Santos said. It will come when they're able to tie educational efforts to information in each patient's individual health record.
"Insurance companies were the first to try to crack this egg, taking what they know about you from your claims and sending information tailored to you," Santos said. "That goes a long way to making the education really compelling enough for people to pay attention."
Kevin Fogarty is a contributing writer based in Boston. Let us know what you think about the story; email firstname.lastname@example.org.