Health Literacy Month is a Good Time to Ensure Mesothelioma is Understood

By Nancy Meredith According to the U.S. Department of Health and Human Services (HHS), Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in our health care facilities, retail outlets, media, and communities. If so many Americans are challenged by understanding this basic information, imagine the difficulty mesothelioma patients and their families have when trying to understand the complexities of mesothelioma. Although understanding the cause of mesothelioma is simple past exposure to asbestos understanding the terminology that accompanies the disease can be overwhelming. When patients are diagnosed with the disease they hear terms such as histological subtype, extrapleural pneumonectomy, decortication, resection, multi-modal treatment, chemotherapeutic, genetic mutation, and biomarkers. And the list goes on. Do doctors take the time to fully explain these terms and the impact they have on the patient? National Action Plan to Improve Health Literacy In an effort to ensure the general public, and especially patients battling a rare disease such as mesothelioma, have a better understanding of health information, the HHS is supporting Health Literacy Month in October. Established in 1999 by health literacy consultant Helen Osborne, Health Literacy Month is a time for organizations and individuals to promote the importance of understandable health information. The HHS defines health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health

decisions. The HHS developed the National Action Plan to Improve Health Literacy based on the principles that everyone has the right to health information that helps them make informed decisions, and health services should be delivered in ways that are understandable and beneficial to health, longevity, and quality of life. The Literacy Plan includes suggestions such as asking health care professionals to develop and disseminate health and safety information that is accurate, accessible, and actionable, and promoting changes in the health care system that improve health information, communication, informed decisionmaking, and access to health services. Ask Questions of Your Doctor Helen Osborne suggests being a Health Literacy Hero by taking action and making a commitment to follow through on best communication practices. When working with your oncologist during your mesothelioma treatment, face-to-face communication may be the best approach. Naoto Ueno, M.D., Ph.D., Department of Breast Medical Oncology at MD Anderson Cancer Center, encourages patients to get more out of their interaction with their health care providers by asking the right questions. Although information from Ueno has been presented on MesotheliomaHelp.net before, it is worth repeating. Ueno suggests using the following statements or questions during each conversation with your doctor so you both agree on your next steps:

I dont understand what youre saying. If you dont understand something the doctor said, simply say so. You may not have another opportunity to get the doctors undivided attention, so make sure you get clarity. Can you please explain that using simpler words? The doctor should be using words and terms you understand, or should clearly define them for you. My understanding is X; do I understand this correctly? Parrot back to the doctor what you think he said to make sure your understanding is correct. Did we agree to X, then Y, then Z? Make sure you understand the plan of action and that you are comfortable with it. Being empowered means you get a say in your treatment plan.

In addition, ask the doctor to write this information down. With electronic medical records, and some doctors now using transcribers, capturing this information should be standard practice. Also, ask the doctor for pamphlets, or website links, regarding mesothelioma that he can pass along. Read more: http://www.mesotheliomahelp.net/blog/2012/10/health-literacy-month-is-a-goodtime-to-ensure-mesothelioma-patients-understand-the-disease#ixzz28FEmslP3 Follow us: @_mesothelioma__ on Twitter