The Institute of Medicine has estimated that 90 million U.S. adults have difficulties understanding and acting upon health care information. They may have trouble following doctors’ orders, taking their pills correctly, or seeking appropriate care.
The cost of that problem is now estimated at $240 billion per year.
Since 2005, a coalition of nonprofit, business and government groups known as the Rhode Island Health Literacy Project has worked to address this problem locally, developing educational materials for consumers and reaching out to providers and employers to enlist their support.
Amanda Barney, co-chair of the project and vice president of communications and administration at the Hospital Association of Rhode Island, answered questions about the group’s work.
PBN: Can you give us some background on the project?
BARNEY: Next month marks the fifth anniversary of the Rhode Island Health Literacy Project. It’s hard to believe five years has passed, but we’re proud of what we’ve accomplished and look forward to continuing our work.
The project was started by Blue Cross & Blue Shield of Rhode Island in response to an Institute of Medicine report that found nearly half of adult Americans have difficulty understanding and acting upon health care information. The study also estimated the financial impact of the problem was $58 billion – a number that has quadrupled five years later.
A consortium was established to draft an action plan for Rhode Island. There are representatives from medical, public health and adult education organizations on our steering committee, and together we determine which projects to tackle. RIHLP is sustained largely by in-kind donations and volunteers.
PBN: How big a concern is health literacy in Rhode Island, and is it primarily a lower-income and/or immigrant communities issue, or much broader?
BARNEY: When I speak to community groups about health literacy, I always stress it has less to do with someone’s ability to read and write. Health care information is complex and requires us to interpret both words and numbers. But perhaps more importantly, health care is emotional. When a patient is given a life-threatening diagnosis, it doesn’t matter what their education level or primary language is; most likely they will have difficulty following the information being provided and recalling what they were told.
PBN: You’ve developed a few tools for consumers. What have been your most successful projects?
BARNEY: Our most popular resources are a medication pocket card and check-up checklist. It’s important that patients keep an accurate list of medications; the card has proven to be an effective tool in documenting the necessary information. The checklist is rather unique. It gives patients a list of things they should do prior to their medical appointment, the items they should bring with them and things they should be sure to get before leaving the office. Both are available on our website (www.rihlp.org), and hard copies are available free of charge.
Our latest tool is a health care curriculum. The resource contains information on nutrition, stress, end-of-life decisions, medication, care planning, insurance, emergency departments, physician office visits and much more. We are in the process of holding train-the-trainer sessions for organizations who are interested in using the curriculum for community/educational programming. Participants have indicated the information will be helpful to their day-to-day work and believe they will use the resource weekly.
PBN: Tell us about your project at Roger Williams.
BARNEY: We are partnering with Roger Williams Medical Center to pilot “The Newest Vital Sign,” a tool developed by Pfizer. Patients are asked to interpret an ice cream nutrition label and answer a series of questions. The tool has been validated to be an accurate indication of a person’s ability to understand and act upon health care information.
Over the next six months, patients in one of the hospital’s medical/surgical units will be given the assessment on admission. It will be administered verbally by a member of the health care team and takes approximately three minutes to complete.
If a patient scores poorly, tools and strategies will be implemented to ensure the patient understands the information provided about their condition and care. Preliminary results show patients believe staff is communicating effectively and they feel better prepared to care for themselves at home.
More results will be available in the fall. Roger Williams Medical Center is the first in the country to use the tool in the inpatient setting.
PBN: The health care reform debate exposed a lot of public confusion and anxiety about health care issues. Do you see a role for RIHLP in helping Rhode Islanders to understand the implications of health care reform for them?
BARNEY: This topic actually came up at our last steering committee meeting. October is Health Literacy Month, and each year RIHLP plans a program in recognition. This year we plan to focus the month on understanding the implications of health care reform for the average Rhode Islander. More details will be available in late summer.