If you are coping with health issues, for yourself or loved ones, there is a lot to keep track of. In addition to office appointments, there is medical information, various advice and opinions from doctors (sometimes conflicting opinions), insurance and billing issues, and a myriad of other concerns to take into account.  

Simple, clear communication can be a challenge: Medical providers are often rushed, and many patients may only understand snippets of what is being said. Patients may then feel too embarrassed to ask for clarification, thinking they are supposed to be well-versed in medical matters and not wanting to appear incompetent in front of the doctor. Some patients have low literacy levels and are not able to fill out paperwork that offices require. Others may have language barriers. If understanding it all and managing everything feels overwhelming, you are not alone. Having a healthcare advocate can help. 

What is a Healthcare Advocate?

According to the National Cancer Institute, a healthcare advocate or patient advocate is "a person who helps guide a patient through the healthcare system. This includes help going through the screening, diagnosis, treatment, and follow-up of a medical condition. A patient advocate helps patients communicate with their healthcare providers so they get the information they need to make decisions about their health care." Other names for this role include patient navigator, patient representative and health advocate.

A health advocate can be "a spouse, relative, friend, or caregiver that you trust," according to John Burton, M.D. of John Hopkins Medicine. An article on the Johns Hopkins website, title "The Power of a Health Advocate" contains information and criteria on how one can choose and hire their own professional health advocates. Many hospitals employ them but social workers, nurses, and other hospital staff members may also help overwhelmed patients jump through the many medical and administrative hoops often required to get proper treatment. 

Be Your Own Healthcare Advocate

October is Health Literacy Month, a good time to learn tips on how to be your own patient advocate! Health literacy, as defined on the MedlinePlus website, "… refers to how well a person can get the health information and services that they need, and how well they understand them. It is also about using them to make good health decisions."

A New York Times series, "How to Take Charge of Your Medical Care," provides a great overview, including knowing your rights as a patient. Forbes also features "How To Be Your Own Healthcare Advocate," an interview with healthcare advocate Reina S. Weiner, who has spent many years in various healthcare roles including an oncology sales representative, a nursing instructor, and assistant professor. Most important, she is also a cancer patient in remission. She offers advice such as what to do when your phone calls are not returned: Try the three P’s, and be patient, pleasant, and persistent.

Tools for Your Health Literacy Toolbox

Medical Terminology

Part of health literacy is having a basic understanding of medical terminology. See the MedlinePlus website for a terminology tutorial. 

Medical Information in "Plain Language"

The Say Ah! website explains medical information to patients and caregivers  in "plain language," and is packed full of information on health literacy. It also provides tools that professionals and organizations can use to help their patients or clients. Take their printable "How to Talk to Your Doctor" list with you to your next appointment, available in multiple languages. 

Getting Appointments and Information Organized

You can use both technology and paper-based methods, in any combination that suits you, to keep track of your medical appointments. I wrote about both in two previous blogposts: "A Guide for Those Newly Diagnosed with Breast Cancer" and "Life After Breast Cancer Treatment: Navigating the New Normal". 

For help going the tech route, we have many free computer classes and open labs at branches throughout the New York Public Library system, in Staten Island, Manhattan, and the Bronx. 

Stop by to learning how to keep track of appointments, and how to record appointments on your phone (with the healthcare providers' permission, of course) so you can listen back after your appointment and take notes. We also offer health, wellness and fitness classes at NYPL, for a variety of health topics. 

Health Information in Other Languages

Need health information in a lanugage other than English? The U.S. National Library of Medicine website has links to consumer health information in other languages, including American Sign Language. You can also search for health information by language and condition on the Health Information Translations website. 

Magazines

In addition to print magazines you can check out for free, the Library also has Consumer Reports on Health and Prevention magazines availabile digitally, via Flipster on your computer, or iPhone or Android phone. You'll just need your library card to get started. Find out more about Flipster here. 

Books

In addition to our books on being a patient advocate, the Library also offers books, e-books and e-audiobooks on a variety of health topics and conditions. 

How To Be a Patient: The Essential Guide To Navigating The World Of Modern Medicine by Sana Goldberg

Registered nurse and public health advocate Sana Goldberg provides readers with tips and guidance on how to receive better healthcare in our increasingly complex modern medical world. She shares little-known facts, such as the existence of an algorithm that healthcare providers use to determine which conditions merit going to the ER or urgent care, or waiting until Monday. 

Goldberg also talks about medical apps for your iPhone or Android, such as the Farlex Nursing Dictionary and the American Red Cross First Aid App. Also mentioned is the Healthcare Bluebook, a website and mobile app that compares prices to help you find the fair price for procedures and prescription drugs in your area. 

Going through medical bills and claims can be an overwhelming and mentally exhausting experience. Goldberg recommends the novel concept of finding friends or family members in the same situation, and having them over for coffee or a meal to review bills together and share knowledge. 

The Patient's Playbook: How To Save Your Life And The Lives of Those You Love by Leslie D. Michelson

Leslie D. Michelson, founder of Private Health Management and former CEO of the Prostate Cancer Foundation, has worked in healthcare management throughout his career, inspired by having to cope with his family's medical issues.

He wrote The Patient's Playbook to give patients strategies to obtain the best medical outcomes, for themselves and their families, and to prevent medical mistakes, errors, and misdiagnoses from occurring. The book contains real patient accounts that help illustrate the lessons he is imparting, with tips on choosing the best doctors, conducting online research, and more.