By Marsha Dolan, MBA, RHIA, FAHIMA; Julie Wolter, MA, RHIA, FAHIMA; and Rachel Heet
More facilities are offering patients support in navigating the healthcare system, helping manage care in difficult times and assisting when low health literacy could present barriers to care.
Health information management professionals have long been involved in consumer advocacy, and a new and challenging opportunity lies ahead. An emerging role for a caring, healthcare system–savvy person is that of patient navigator.1
Some of the most stressful times in a person's life come when they or a family member is ill with a chronic disease or catastrophic illness. Patients may be alone, confused, and suddenly facing an unfamiliar world of providers, tests, and treatment options. Some are unfamiliar with seeking medical care, struggle to understand medical information, and may face financial pressures or cultural barriers.
Patient navigators work with patients and families to understand and manage this unfamiliar world. They help patients navigate today's complicated healthcare system.
Patient navigators take on varying roles, but they commonly assist patients in overcoming varied barriers to care; facilitate communication between patients, providers, community resources, and other agencies; provide educational assistance; help obtain financial resources; and help with cultural understanding.2
Although some programs use social workers or other healthcare professionals who have clinical and health-related backgrounds to do the job, it can be filled with a health information management specialist.
HIM professionals bring organizational skills to patient navigation, including an understanding of healthcare workflow and insurance and reimbursement issues. Their familiarity with managing and accessing protected health information and their knowledge of diagnoses, procedures, and documentation issues are helpful skills in navigating the healthcare system.
The Health Literacy Connection
Understanding health, healthcare, and the healthcare system can be a challenge for everyone, even those who work within the delivery system. Healthcare literacy, as defined in the federal government's Healthy People 2010 initiative is the "degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions."3
Studies demonstrate that health literacy is not simply the ability to read. It is much more complex. In order for individuals to manage their health, they must take an active role in making decisions related to their care.
People require strong health information skills to understand their diagnoses and choose treatment plans. From managing their health to making decisions on their care, patients may be required to evaluate the quality and reliability of healthcare information, analyze risks and benefits associated with treatment, calculate dosages, interpret test results, and locate additional health information.4
To complete these tasks, patients may need to understand graphs and other information, possibly use a computer, perform numerical calculations, and apply information to their situation. Patients also need to be able to communicate adequately-to explain their healthcare symptoms and problems and ask questions.
HIM professionals who serve as patient navigators can apply their experience working with the business and clinical professionals who can assist patients. They may also have experience working directly with patients and their families, helping them identify the information they need from their records, such as EKG or ED reports to take to their cardiologists.
Patient Navigators at Work
Smith Farm Center for Healing and the Arts in Washington, DC, uses patient navigation to help breast cancer patients. The program employs navigators through four local churches and the Howard University Cancer Center. The center also trains patients and survivors to become navigators themselves. Because the navigators come from the same communities as the women they help, they are better equipped to help because of their cultural sameness and understanding of the issues faced by African-American women facing breast cancer.
Denver Health Medical Center trains patient navigators and offers navigation services within its hematology and oncology division. The medical center is one of nine organizations taking part in the Patient Navigator Research Program, funded by the National Cancer Institute to study the impact of patient navigators on underserved populations.
A collaborative patient "network navigation" system in Washington, DC, helps breast cancer patients navigate between five hospitals and several medical centers in the city. One goal is to determine if there is a decrease in time between suspicious findings and diagnosis and onset of treatment.
www.healthleadersmedia.com. "Patient Navigator Improves Outcomes, Incomes"
One of the first people a cancer patient meets when he or she enters the Stanford Cancer Center is a patient navigator. The navigator takes the patient to and from appointments and helps him or her find information and resources for care.
The Impacts of Low Health Literacy
Inadequate health literacy can lead to missed appointments; inability to find clinics or offices; failure to take medications correctly; incomplete health histories; overuse of emergency room services; lack of informed consent; delaying treatment, leading to diagnoses being made at later stages of the problem; and unhealthy and risky behaviors.
The first national survey to assess health literacy, conducted in 2003, estimated that 77 million US adults struggle with health literacy.5 These individuals had difficulty reading short simple text explaining what they could drink before a test, for example, or had trouble entering names and birth dates in a health insurance application. A more recent study estimates that more than 89 million American adults have limited health literacy skills.6
Low health literacy has a significant financial impact on our healthcare delivery system, which affects the overall population. In 2001, low functional literacy resulted in an estimated $32 to $58 billion in additional care costs because of less ability to care for chronic conditions and the use of more healthcare services, such as ER visits, increased use of expensive procedures, and a need for more diagnostic tests.7In 2007 the University of Connecticut estimated that low health literacy cost the US economy between $106 billion and $236 billion annually.8
Low health literacy is linked to healthcare disparity. Each year the Agency for Healthcare Research and Quality, on behalf of the Department of Health and Human Services and in collaboration with an interagency work group, publishes the National Healthcare Disparities Report. The 2009 report, consistent with previous years, demonstrates that disparities related to race, ethnicity, and socioeconomic status remain a pervasive part of the US healthcare system.9 Additional factors include access to care, provider bias, and poor provider-patient communication.
These disparities may be due in part to poor health literacy, and health literacy has become an important focus in federal initiatives to reduce health and healthcare disparities. The national disparities report links inadequate health literacy to higher medical costs, inefficient provision of services, and poor communication that can limit or discourage proper care.
Pilots, Programs Increasing
Trained patient navigators can play a very important role in improving health literacy. They can obtain information that helps patients understand their diagnoses and treatment options. They can help patients set up future appointments, solve insurance or payment problems, and accompany the patient to appointments to help decipher instructions or ask questions. Helping patients facing language or cultural barriers improves access to care.
HIM professionals can apply their understanding of clinical and business information in these instances, as well as their knowledge of how healthcare systems operate. They also may have experience with scheduling and resolving insurance and payment issues that would prove helpful.
The first patient navigator program started in the 1990s at Harlem Hospital, the result of work by Harold P. Freeman, MD, and his efforts to inform underserved women about the need for breast examinations, screening services, timely diagnosis, and, in the case of positive findings, treatment. Since then, many patient navigators have focused on helping care for cancer patients. As efforts to help patients expand, navigators are branching into such chronic disease areas as diabetes, cardiovascular disease, obesity, and asthma.10
The Patient Navigator Outreach and Chronic Disease Prevention Act was signed into law in 2005. A 2008 demonstration program by the Health Resources and Services Administration funded six projects for a two-year period to help support nonmedical health workers in communities where significant health disparities and barriers to health services could be demonstrated. Many of the demonstration projects used patient navigators to help people learn about chronic disease and then help with screening and treatment as needed.
The program also helped patients find and use community services to manage their chronic diseases, including identifying resources related to insurance, financial assistance, medication, home care, transportation, locating support groups, and helping overcome language and cultural barriers.11
Health literacy demonstration projects are now appearing throughout the country. In late 2009 there were at least 26 such projects in Missouri alone. Many of these involve the use of trainers or navigators. The sidebar above offers examples of patient navigator programs.
Opportunities abound for HIM professionals who want to become engaged in this emerging consumer advocacy effort, whether as an entrepreneur, volunteer, or working within a demonstration project. Navigators, data analysts, advocates, and trainers are all needed to help address health literacy and disparities.
- Anderson, Annette, and Anne Turner. "Patient Navigation: Existing Programs, Current Practices, and Guidelines for Success." Cross Cultural Health Care Program. Seattle, WA. October 2007. Available online at www.xculture.org/files/Navigators.Final.Report10.07.pdf.
- US Department of Health and Human Services (HHS). "Healthy People 2010: Understanding and Improving Health." 2d ed. Available online at www.healthypeople.gov/Document/pdf/uih/2010uih.pdf.
- "Health Literacy." Update by Penny Glassman. National Network of Libraries of Medicine. Available online at http://nnlm.gov/outreach/consumer/hlthlit.html.
- HHS, Office of Disease Prevention and Health Promotion. "America's Health Literacy: Why We Need Accessible Health Information." 2008. Available online at www.health.gov/communication/literacy/issuebrief.
- American Medical Association. "Health Literacy." Available online at www.ama-assn.org/ama/no-index/physician-resources/8115.shtml.
- Center for Health Care Strategies. "What Is Health Literacy?" Available online at www.chcs.org/usr_doc/Health_Literacy_Fact_Sheets.pdf.
- "New Report Estimates Cost of Low Health Literacy Between $106–$236 Billion Dollars Annually." Medical News Today. October 15, 2007. Available online at www.medicalnewstoday.com/articles/85542.php.
- HHS, Agency for Healthcare Research and Quality. "National Healthcare Disparities Report." 2009. Available online at www.ahrq.gov/qual/nhdr09/nhdr09.pdf.
- Anderson and Turner. "Patient Navigation."
- HHS, Health Resources and Services Administration. "Patient Navigator Outreach and Chronic Disease Prevention Demonstration." Available online at http://bhpr.hrsa.gov/patientnavigator.
Marsha Dolan (firstname.lastname@example.org) is a professor at Missouri Western State University, St. Joseph, MO. Julie Wolter (email@example.com) is an associate professor at St. Louis University, St. Louis, MO. Rachel Heet is an RHIA-eligible student at St. Louis University, St. Louis.
Dolan, Marsha; Wolter, Julie; Heet, Rachel.
"Patient Navigators: New Advocacy Role a Good Fit for HIM Professionals"
Journal of AHIMA