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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
Don't let the medical system push you around—empower yourself to take the lead
Feel more in control of your medical care and learn how to be your own advocate with Patient Advocacy For Dummies! Managing your own health care—or a loved one's—can be daunting, especially if you are diagnosed with a serious illness. This book helps you weigh all the treatments, make decisions, and speak up for yourself when you need to. You'll get advice on asking challenging questions in a way that will get the information you need from medics, nurses, doctors, and other health care professionals. You deserve to understand your options and choose the path that's right for you. Take charge of your health care and feel empowered to partner with health care providers to achieve the best possible results.
- Prepare yourself to make the most out of consultations with health care providers
- Take responsibility for your care or the care of a loved one by partnering with medical professionals
- Learn how to talk to doctors and ask questions to get the answers that you are looking for
- Understand your treatment options and stand up for yourself if something doesn't seem right
This book is a valuable tool for anyone who uses the healthcare system, especially those who need a high level of care from multiple providers and specialists.
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Seitenzahl: 455
Veröffentlichungsjahr: 2025
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Patient Advocacy For Dummies®
To view this book's Cheat Sheet, simply go to www.dummies.com and search for “Patient Advocacy For Dummies Cheat Sheet” in the Search box.
Table of Contents
Cover
Title Page
Copyright
Introduction
About This Book
Foolish Assumptions
Icons Used in This Book
Beyond the Book
Where to Go from Here
Part 1: Getting Started with Patient Advocacy
Chapter 1: Finding Your Compass Through the Healthcare Maze
Participating in Your Own Care
Understanding Patient Advocacy
Differentiating Types of Patient Advocates
Navigating the Healthcare System
Chapter 2: Decoding Medical Terminology and Records
Deciphering Medical Acronyms, Abbreviations, and Terms
Assessing and Using Your Medical Records
Familiarizing Yourself with Health Management Tools
Chapter 3: Unraveling the Knots of Health Insurance
Understanding the Differences Between Medicaid and Medicare
The ABCs (and D) of Medicare Coverage
Understanding In-Network vs. Out-of-Network Coverage
Understanding VA Health Insurance: The Basics
Making Informed Decisions to Maximize Your Health Coverage
Using Price Comparison Platforms, Coupons, and Discounts
Navigating Changes in Coverage
Getting the Care You Need Even When You Don’t Have Insurance
Chapter 4: Keeping the Power in Your Hands with Informed Consent
What’s the Big Deal? The Significance of Informed Consent
Understanding Your Role in Informed Consent
Recognizing Common Challenges with Consent
Part 2: Mastering Communication with Healthcare Professionals
Chapter 5: Cultivating Mutually Respectful Relationships with Your Care Team
Building Open Communication Channels
Establishing Clear Expectations
Accessing Your Emotional Intelligence
Nurturing a Strong Relationship of Trust
Establishing a Culture of Collaborative Decision-Making
Chapter 6: Guiding Your Healthcare Conversations
Fine-Tuning Your Direct Conversation Skills
Asking the “Right” Questions
Speaking Up with Confidence
Part 3: Embracing Your Role as Your Health’s Best Advocate
Chapter 7: Self-Advocacy Techniques to Champion Your Health
Getting to the Core of Your Feelings About Your Health
Using the Teach-Back Method with Your Providers
Sharing Your Health Goals with Your Providers
Chapter 8: Empowering Self-Advocacy Through Knowledge
Understanding the Impact of Self-Awareness
Discerning Information Sources as Friend or Foe
Finding a Middle Ground When Reality and Goals Diverge
Prioritizing Self-Compassion
Chapter 9: Gauging the Impact of Your Self-Advocacy
Measuring Your Efforts
Getting Feedback Effectively
Managing the Pitfalls of Collecting Feedback
Identifying Milestones
Chapter 10: Assembling Your Healthcare Allies
Determining Who Should Be on Your Team
Keeping Your Support System Strong
Addressing Conflicts Professionally
Celebrating Small Successes Together
Navigating Tomorrow’s Health as a Team
Coordinating Your Specialized Healthcare Teams
Part 4: Confronting Healthcare Headwinds
Chapter 11: Navigating Misdiagnoses and Getting Second Opinions
Understanding the Impact of Misdiagnoses
Minimizing the Possibility of Being Misdiagnosed
Telling Your Clinician You Want a Second Opinion
Seeking Second Opinions
Chapter 12: Resolving Insurance Challenges
Recognizing and Understanding Coverage Gaps
Navigating the Claims Process
Billing Errors! Where to Start and Who to Talk To
Tackling Medical Debt
Chapter 13: Navigating Chronic Conditions and Long-Term Care
Understanding Chronic Health Conditions
Planning for Long-Term Care Needs
Understanding Your Care Options
Managing Changes to Your Care Options
Financial Considerations for Long-Term Care
Legal Aspects of Long-Term Care
Involving Family and Caregivers in Decision Making
Managing Chronic Health Conditions in the Workplace
Chapter 14: Protecting Yourself Against Harm
Recognizing HAIs
Steady Steps: Preventing Falls and Fall-Related Injuries
Understanding Hospital Safety Ratings
Advocating for Your Personal Safety
Part 5: Tackling Specialized Patient Advocacy
Chapter 15: Learning to Champion Your Child’s Health
Handling Pediatric Advocacy as Children Grow
Managing Care Through Adolescence and the Transition to Adulthood
Communicating Your Child’s Needs in Educational Settings
Teaching Your Child to Advocate for Their Health
Staying Well on the Pediatric Advocacy Journey
Chapter 16: Managing Compassionate Care for Aging Loved Ones
Preparing a Holistic Plan for Senior Care Needs
Taking on the Role of a Durable Power of Attorney
Advocating for an Aging Loved One Without Minimizing Their Humanity
Chapter 17: Bridging the Gap in Mental Health Advocacy
Recognizing Mental Health Conditions as Medical Conditions
Finding Harmony Between Your Health Goals and Your Safety
Telling Your Clinician that Your Treatment Plan Isn’t Working
Advocating for Solutions that Increase Your Quality of Life
Finding Support from Mental Health Programs
Chapter 18: Navigating End-of-Life Care
Understanding and Respecting Wishes at the End of Life
Legal Documents: Power of Attorneys, Living Wills, and More
Palliative Care versus Hospice Care and the Transition Between Living Arrangements
Practical Matters: Financial Affairs
Managing Pain and Symptom Relief
Helping Your Loved One Manage End-of-Life with Dignity
Part 6: The Part of Tens
Chapter 19: Ten Ways to Get Professional Support
Get a Second Opinion
Work with Legal Professionals
Seek Out Crisis Aid
Work with Medical Bill Advocates and Finance Professionals
Reach Out to Nonprofit Organizations
Hire a Professional Interpreter
Work with Financial Counselors and Advisors
Use Reputable Websites
Work with a Private Patient Advocate
Get Counseling or Therapy
Chapter 20: Ten Ways to Advocate for Health and Wellness in Your Community
Start a Community Garden
Get Involved with Local Fitness Classes
Work with Local Government Officials
Volunteer at Health Clinics and Initiatives
Organize a Community Clean-Up Event
Support Local Schools to Encourage Healthy Practices
Combat Food Waste in Your Home and Community
Advocate for More Accessible Communities
Start a Walking Group
Prioritize Shopping Locally
Chapter 21: Ten Ways to Share Your Health Journey with Others
Start a Blog
Share Your Story in Online Communities
Record Your Journey and Create a Channel Online
Start a Podcast
Write a Book
Become a Freelance Writer
Participate in Advocacy Campaigns
Speak at Events or on Webinars
Communicate Through Art and Photography
Contribute to Clinical Research
Chapter 22: Ten Ways to Celebrate Your Healthcare Wins and Milestones
Commemorate Your Wins
Throw a Party!
Eat Your Favorite Meal
Send Your Care Team a Celebratory Thank You
Treat Yourself to Some Rest and Relaxation
Buy Yourself Something Special
Donate to a Cause You Care About
Dress Up for the Occasion
Make Your Space Festive
Create a Victory Playlist
Appendix A: Using Technology to Stay Organized
Using Digital Voice Recorders for Appointments
Organizing Your Appointments with a Calendar App
Building a Health Accountability Plan with a Digital Task Manager
Using the Patient Portal
Utilizing Wearable Technology for Continuous Health Management
Appendix B: Accessing Online Support Communities
Understanding Why Online Support Communities Matter
Vetting an Online Community
Safely Engaging in Support Communities
Creating Your Own Support Community
Taking Community Relationships Safely Offline
Index
About the Author
Connect with Dummies
End User License Agreement
List of Tables
Chapter 13
TABLE 13-1 Sample Checklist
List of Illustrations
Chapter 1
FIGURE 1-1: If you find trying to understand and advocate for your own healthca...
Chapter 2
FIGURE 2-1: The Mayo Health Information site is a great source of medical infor...
Chapter 3
FIGURE 3-1: The Medicare Plan Finder tool helps you compare plans and find the ...
FIGURE 3-2: A quick look at the VA 10-10EZ form.
Chapter 4
FIGURE 4-1: The electronic consent form can feel cold and uncaring to some.
Chapter 6
FIGURE 6-1: From brochures to 3D models, visual aids can help clarify otherwise...
Chapter 7
FIGURE 7-1: The process funnel for setting and meeting goals.
Chapter 8
FIGURE 8-1: Websites like the NIH, the National Institutes of Health, are relia...
Chapter 10
FIGURE 10-1: Specialists and surgeons can be referred to you by your primary ca...
FIGURE 10-2: Caregivers and family members can be a critical part of your healt...
FIGURE 10-3: Be sure to revise your health goals as your condition changes.
FIGURE 10-4: A support group can give patients the opportunity to connect with ...
FIGURE 10-5: A great healthcare team feels your wins as strongly as you do.
Chapter 12
FIGURE 12-1: Getting a grasp on what's covered and what's not can be difficult!
Chapter 13
FIGURE 13-1: Assisted living facilities can provide comfort, everyday task supp...
FIGURE 13-2: In the best scenarios, making decisions together about long-term c...
FIGURE 13-3: Employers must provide reasonable accommodations for employees wit...
Chapter 14
FIGURE 14-1: Common hospital-acquired infections.
FIGURE 14-2: Medical alert bracelets can be a huge help, especially if you live...
Chapter 15
FIGURE 15-1: Helping your child become comfortable with their caregivers and th...
FIGURE 15-2: Teaching your child to advocate for themselves will reap benefits ...
Chapter 17
FIGURE 17-1: Check out the National Alliance on Mental Illness (NAMI) website f...
Chapter 20
FIGURE 20-1: Community gardens are a great way to provide healthy food while ma...
Appendix A
FIGURE A-1: If you don't want to use an app on a smartphone, you can buy a simp...
FIGURE A-2: Your patient portal contains information about your visits, lab res...
Guide
Cover
Table of Contents
Title Page
Copyright
Begin Reading
Appendix A: Using Technology to Stay Organized
Appendix B: Accessing Online Support Communities
Index
About the Author
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Patient Advocacy For Dummies®
Published by: John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030-5774, www.wiley.com
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Library of Congress Control Number: 2025934654
ISBN 978-1-394-28108-4 (pbk); ISBN 978-1-394-28110-7 (ebk); ISBN 978-1-394-28109-1 (ebk)
Introduction
Hello and welcome! Think of this book at your GPS navigation through the world of patient advocacy. Wanting to be a confident and informed consumer of the healthcare system as a patient is one thing, but being one is another. In this rapidly evolving healthcare landscape, now — more than ever — it’s necessary to empower yourself with the effective advocacy strategies and techniques to keep you and your loved ones from being overwhelmed, lost, unheard, and potentially even unsafe on your journey.
This book bridges the gaps between imagining the healthcare journey you want and being on track to achieving it. Being a patient — or supporting one — comes with a lot of questions and emotions, and that’s why you need an easy reference guide with actionable steps.
About This Book
I know you’re busy, so I’ve organized this book in the easy-access way the For Dummies series is known for. You may choose to read the book from cover to cover, or you may read any section or chapter as it calls to you. Whether you’re interested in revamping your entire dynamic with your clinical providers or in refining your current approach, this book contains clear explanations, simplified concepts, and actionable exercises to get started.
No matter where you are in your healthcare journey — whether navigating a new or existing illness, challenging a diagnosis, seeking better answers, or just wanting to be more prepared and in control of your healthcare journey, this book is written with you in mind to help you find your power as a patient and find your voice in every conversation regarding your care.
Foolish Assumptions
I know you’re no dummy! But the world of healthcare and patient advocacy is complicated and vast, so I know you'll appreciate starting with the basics. You don't need a medical degree or any prior knowledge to benefit from this book. In fact, this book is the perfect first step in becoming a patient advocate, whether it's for yourself or for your loved ones, and I invite you to continue to explore further as you read and want to learn more about any of the topics covered here.
If you do have a medical background and want to understand your role as a patient advocate more deeply, this book will also serve you well. For you, I provide detail and a fair amount of depth across the spectrum, but always in a clear and direct manner.
Icons Used in This Book
Throughout the book, you’ll notice little pictures in the margins. These icons point you to information that you may not want to forget or, in some cases, you may decide to skip over.
These tips point you toward helpful information that can make your journey as an advocate a little smoother.
When I point to information for you to remember, that means I think it’s worthwhile for you to pause and make a mental note of the information; it can help you down the road in your understanding.
Please take note of all warnings. This icon indicates pitfalls and hazards you might run across in the healthcare world.
This icon alerts you to additional information you can find online that will help you on your healthcare journey.
Beyond the Book
In addition to the book content, you can find valuable free material online. I provide you with a Cheat Sheet that addresses questions that may be first and foremost in your mind. Check out this book’s online Cheat Sheet by searching www.dummies.com for Patient Advocacy for Dummies Cheat Sheet.
Where to Go from Here
Patient Advocacy For Dummies is both an introduction and a beginner’s reference. It's serves you whether you're advocating for yourself or for a loved one. You can read the chapters one after the other and follow along, or you can dip into the book here and there, reading up on the subjects that currently interest you.
If you’re a newcomer to the role of a patient advocate, I recommend that you spend some time with the table of contents and leaf through the book to get a general sense of how I have structured and approached the material. You probably want to begin your reading with the first three chapters, which give you a picture of the current landscape.
If you want a refresher, or need a topic-specific insight, you can also use this book as a reliable guide in answering your questions. Perusing the table of contents is a good starting point for you as well. You may find yourself gravitating to later chapters that zero in on specific issues, such as advocating for your child's healthcare needs or dealing with chronic and long-term conditions. And of course, the index is always useful to locate specific information on any topic of interest.
Whether you’re completely new or already somewhat familiar with the role of patient advocacy, you’re in the right place. This book guides you through the briars so you can confidently advocate for yourself or for your loved ones, no matter what the circumstances dictate.
Part 1
Getting Started with Patient Advocacy
IN THIS PART …
Understanding what a patient advocate does, how they help, and why you need one
Deciphering medical terminology, understanding medical records, and addressing errors
Unraveling the complexities of Medicare and healthcare coverage
Learning what informed consent is and how it protects your rights
Chapter 1
Finding Your Compass Through the Healthcare Maze
IN THIS CHAPTER
Participating in your own care
Understanding what a patient advocate does
Differentiating between types of patient advocates
Welcome to the sometimes frustrating journey of healthcare advocacy. Whether you're advocating for yourself or for a loved one, this process can be difficult, but this book can help you along the journey. This book is for patients, their caregivers, including friends, family, and others — anyone who helps someone else manage and navigate the healthcare system. Whether you are reading this book to advocate for your own health or you are an active participant in helping someone else manage this experience, this book can help.
The U.S. healthcare system is complicated and multifaceted. It's sometimes nearly impossible to figure out what's best for your care and how that corresponds with what you can afford. In order to be an effective advocate during the healthcare journey, you need to be educated and understand the diagnoses, treatment plans, side-effects, costs, and more. The goal of this book is to help you become the best advocate you can — for your own care as well as for your loved ones'.
Participating in Your Own Care
If you’re like most patients, the idea of “consuming” the healthcare system probably sounds a bit odd. Healthcare doesn’t feel like something you consume, right? You get sick, go to a doctor, they tell you what to do, you follow along, and you hope to get better. That’s the classic model of paternalistic medicine, which is the way the process worked for years. But things have shifted, and healthcare professionals now lean toward participatory care. Here’s the thing: Not all patients have caught on to this change, and that disconnect can make all the difference in your healthcare experience.
Being a participant in your care isn’t about pushing your doctor around or being demanding — it’s about understanding that you have a right to safe, accurate, and effective care. Whether you’re paying with insurance or out-of-pocket, you’re investing in a service, and like any consumer, you have the right to expect a standard of quality.
However, to participate fully, you to need continually educate yourself about your condition and possible treatments; keep your records, medications, and treatments organized; and have the time and peace of mind to ask the right questions. If that sounds daunting, you are not alone (see Figure 1-1). It might be time to seek out an advocate who can help.
SDI Productions/Getty Images
FIGURE 1-1: If you find trying to understand and advocate for your own healthcare daunting and stressful, finding a professional advocate is a great idea.
Understanding Patient Advocacy
Patient advocacy, at its core, is a simple concept: it’s about helping a patient achieve the outcomes they want and need in their care. Anyone — family, friends, healthcare professionals, and patients themselves — can step into the role of a patient advocate. But while anyone can advocate, the quality and impact of advocacy varies greatly depending on who’s providing it and how it’s done. Just like anything else, effective advocacy requires understanding, commitment, and a genuine focus on the patient’s best interests.
Patient advocacy as a patient
Patient advocacy, when you’re doing it for yourself — what I call patient self-advocacy — is all about standing up for your own best interests regarding your healthcare. To do this properly, you need to:
Stay informed about your health
Ask questions about your care plans
Understand how each part of your healthcare journey support your well-being
You may not realize it, but you’re probably already advocating for yourself in many ways. For example, when you tell your clinician that you’re having stomach pain and you’d like to know why and seek treatment, you’re taking an active role in seeking the care you need.
Patient advocacy as a support partner
When you advocate for a patient as a support partner — whether you’re their spouse, friend, family member, or someone else who you care about — you’re there to help ensure they receive the care they need and deserve.
Your role is about actively supporting them: asking questions they might miss (with their permission, of course), keeping them accountable to their care, and helping them feel confident and understood as they navigate their healthcare journey. It’s about being their voice when needed, but also respecting their wishes, making sure that the care they receive aligns with their values and preferences.
Patient advocacy as a provider
Many healthcare providers — doctors, nurses, nurse practitioners, and physician assistants — advocate for their patients by going beyond simply performing their clinical duties. They make sure their patients don’t slip through the cracks in complex healthcare processes.
For instance, a provider may recognize that a patient’s symptoms call for a specialist and actively push for that referral, ensuring the patient gets the targeted care they need. They might also step in to help navigate insurance challenges, advocating for coverage when claims are denied or costs become a barrier to necessary care.
Providers bring not only their expertise but also a commitment to their patients’ best interests, often working behind the scenes to secure the resources and attention their patients require.
Differentiating Types of Patient Advocates
The term patient advocate is used widely across different healthcare roles, often creating some confusion. In some companies, customer service representatives are called patient advocates, while hospitals might give this title to financial liaisons, care managers, or other staff. While these roles do involve advocacy for patients, it’s useful to understand that the nature of their advocacy can vary based on their responsibilities, their employer, and their relationship to your care.
Institutional/hospital patient advocates
You may have heard about someone called a patient advocate who works for the hospital. Sometimes these professionals are called case managers, care coordinators, or navigators, among other names. These are individuals employed by the hospital to help patients connect their care between providers, answer questions, and improve the patient's experience. The work that these professionals do is very meaningful, especially for patients admitted to the hospital who have many moving parts to their care.
It's important to recognize, however, that these individuals are employed by and work for the hospital. That means their assistance only stretches so far. When a patient is discharged from the hospital, or transferred to another facility, this hospital employee may no longer provide any hands-on assistance.
They’re there to help patients have a better healthcare experience, but they ultimately still work for the hospital. They can be a resource for you as an advocate, but you can't rely on them to be a full patient advocate as you (or your loved one) navigate different stages of care.
You may also hear the term patient advocate used in other spaces too, such as for the representative who helps you when you call your insurance company, or the individual who works at a hospital ombudsman office to help you file a complaint. This term is used in many areas to mean anyone who might help a patient with healthcare issues.
Private patient advocates
Private or independent patient advocates provide patient advocacy services independent of a healthcare system and are often contracted or hired directly by the patient or their family to provide personalized assistance, regardless of where the patient is receiving care.
Many private and independent patient advocates provide different types of services depending on the needs of their clients and the advocate’s area of expertise. If they don’t provide the service that you’re looking for, ask if they have any recommendations of advocates that do. The work that these professionals do is extremely collaborative and that doesn’t just mean with the healthcare teams their clients work with — they may also collaborate with other patient advocates and know of different contacts to help you with a specific need.
Some private patient advocates carry industry certifications to show that they have demonstrated expertise and specialize knowledge in different areas of the healthcare navigation process, along with the bonus of showing how committed they are to the provision of high-quality advocacy.
A private patient advocate who has achieved the credential Board Certified Patient Advocate or BCPA, has met specific competencies established by the Patient Advocate Certification Board (PACB) that speaks to their knowledge of the healthcare system, their grasp on patient rights, the role of a patient advocate on a healthcare team with a patient, and more.
Some advocates hold the Certified Case Manager or CCM certification that is awarded to them by the Commission for Case Manager Certification (CCCM) proving that they have mastered case management skills, like care coordination.
Advocates that hold the certification of Certified Senior Advisor or CSA, have a passion for working with older and aging patients as clients and have demonstrated their understanding of the unique needs, both clinically and otherwise, that specifically affect seniors in the healthcare system.
Do your research and learn as much as you can about the private patient advocate you are considering working with. One size does not fit all and you want to make sure you have a connection with, and work well with, the professional you add to your healthcare team.
Most advocates require that you complete a consultation call for meeting with them so that they can fully understand your needs, your expectations, your currency, and what your goals are. Some advocates don’t charge for consultations, while others do.
Friends and family members as advocates
When a friend or loved one gets sick, it’s common for their loved ones, such as family members and friends, to step in and support their journey to wellness. Having someone by your side who is familiar and can support you as you navigate the healthcare system is very important, and patients often find solace in members of their support network.
Family and friends do a wonderful job supporting their loved ones, to the extent that they’re able. However, the healthcare system is confusing, even if your loved one or friend has experience with it. As you involve your loved ones in your care, manage everyone's expectations about what that support looks like. As well-meaning as they may be, you might need more help ensuring your healthcare journey moves along smoothly.
Navigating the Healthcare System
You likely realize by this point that the U.S. healthcare system is quite flawed. However, there’s also a great deal of people who are committed to making it work. The aim of this book is not only to educate you but also to empower you with the realization that you don’t have to always take what you’re given or navigate your journey alone.
Remember, you have options, you have power, and your perspective is important and relevant to your care. This book is now one of your resources to navigate that journey.
Chapter 2
Decoding Medical Terminology and Records
IN THIS CHAPTER
Learning important medical terms and abbreviations
Getting help deciphering all the mumbo-jumbo
Finding and reporting errors in your medical records
Using health management tools
Healthcare can feel like it’s packed with confusing terms — some words might make sense if you sound them out, while others feel like a foreign language. But understanding basic medical terminology isn’t just a “nice-to-have” — it’s essential for being actively involved in your care. Medical professionals rely on this language to communicate about your treatment, and having a handle on key terms can make a big difference in how informed and confident you feel.
The good news is, you don’t need a medical degree to get a grasp on the basics. By learning how to decode complex terms, you can more easily read and understand your medical records, spot any potential errors, and communicate clearly with your healthcare team.
Getting a handle on your health data — things like lab results, imaging, treatment plans, and more — gives you a clearer view of how your health is evolving over time. This awareness doesn’t just make you more informed; it empowers you to actively participate in your care. When you’re familiar with the key terms in your records and can understand how your data tells a story, you’re better prepared to make informed decisions alongside your healthcare providers.
This chapter introduces you to essential medical terms and gives you tips on navigating healthcare jargon, so you don’t feel like you’re watching a foreign TV show without subtitles. Let’s dive in!
Deciphering Medical Acronyms, Abbreviations, and Terms
By now, you’ve probably noticed: Not only do healthcare professionals use complex words with Greek and Latin roots, but they’re also big on abbreviations and acronyms — especially in charting and notes. While it wouldn’t be practical (or necessary) to memorize every abbreviation, learning some commonly used ones can help you feel more in control when reviewing your medical information.
Terms and abbreviations you're likely to see time and again include the following:
Acute:
Sudden or severe onset condition
Benign:
Not harmful, non-cancerous
BP:
Blood pressure
CBC:
Complete blood count, a common blood test
Chronic:
Long-term or ongoing condition
CT:
Computed tomograpy, a type of image scan, i.e. a CT scan
Dx:
Diagnosis
ECG or EKG:
Electrocardiogram
FX:
Fracture, broken bone
HPI:
History of present illness
HR:
Heart rate
Hx:
History
IV:
Intravenous
Malignant:
Cancerous
MRI:
Magnetic Resonance Imaging
Myocardial infarction:
A fancy word for a heart attack
OTC:
Over-the-counter
PCP:
Primary care provider, or physician
PMHX:
Past medical history
PRN:
As needed; can be seen in conversations about medication, like taking Tylenol PRN, or as needed
Pt:
Patient
Px:
Prognosis
Rx:
Prescription
Sepsis:
Extreme immune reaction to infection
Thrombosis:
Blood clot in a blood vessel
UTI:
Urinary tract infection
Taking a few minutes to familiarize yourself with these can help you follow conversations more comfortably.
This isn’t an exhaustive list, and resources like the Mayo Clinic’s Glossary of Terms (www.mayo.edu) and WebMD’s Medical Abbreviation Finder (www.webmd.com) can be helpful references. Figure 2-1 shows the dashboard of the Mayo site, which houses a trove of reliable and up-to-date medical information.
If you come across an unfamiliar abbreviation in your records or on a doctor’s note, don’t hesitate to ask your provider to explain it, or look it up using one of these reliable resources. Having these tools handy can make it easier to stay informed and engaged in your healthcare journey.
Also, if certain terms keep coming up, it might not be a coincidence. It may be a signal that that word or abbreviation is important to providing context about your care. Use the resources mentioned earlier to get clear definitions — these terms can give you useful context in understanding your care!
FIGURE 2-1: The Mayo Health Information site is a great source of medical information.
Latin and Greek prefixes and suffixes
Knowing some basic Greek and Latin root words can also go a long way into deciphering medical records and notes. Even just a few terms can help you:
Aqua-:
Pertaining to water
Asphyxia:
Choking or loss of consciousness due to oxygen deprivation
Carcin(o)-:
Related to or causing cancer
Cyto-:
Pertaining to a cell or cells
Derma-:
To do with the skin
Digit:
Either a finger or a toe
Encephal(o)-:
To do with the brain
Gastr(o)-:
Related to the stomach
Lact-:
Pertaining to milk
Men-:
A month or occurring monthly
Nephr(o)-:
Related to the kidneys
Onc(o)-:
To do with tumors or masses, often related to cancer
Ov-:
Pertaining to eggs (for example, ovulate)
Pulmon(o)-:
To do with the lungs
Stasis:
Causing the flow of a fluid, such as blood, to slow or stop
Viscous or viscosity:
Sticky or thick, thickness
By the same token, knowing these basic prefixes (found at the beginning of a word) and suffixes (found at the beginning of a word) can help:
A- or an-:
Lacking or without
Ab-:
Away from
-algia:
Indicates pain or a painful condition
Cardio-:
Related to the heart
Ecto- or exo-:
Outside of
-ectomy:
Removal through surgery
Hyper-:
Above, beyond or in excess
Hypo-:
Below, or not enough
-itis:
An inflammation
-mortem:
Relating to death
-plasty:
Repair through surgery
Post-:
After or behind
-rrhea:
A discharge or a flow
-somnia:
Related to sleep
Trans-:
Across or through
-trophic:
Relating to nutrition
Vas(o)-:
Relating to a vessel
Medical terms related to body systems
In addition to general medical terms and abbreviations for tests and procedures, you’ll also come across key terms specific to different body systems, like the respiratory, gastrointestinal, endocrine, and cardiovascular systems. These terms often describe conditions or processes related to each system:
HTN stands for hypertension (high blood pressure), which is linked to the cardiovascular system.
DM is short for diabetes mellitus, or diabetes, a chronic condition affecting the endocrine system.
COPD represents chronic obstructive pulmonary disease, impacting the respiratory system.
CHF stands for congestive heart failure.
If you’re managing a particular condition or working with a specialist, like a cardiologist, it’s helpful to familiarize yourself with terms commonly used for that body system. Doing a quick search on medical terms specific to your condition or care area can give you a solid foundation.
You don’t need to memorize or master each term’s complex details, but having a general sense of what it means and what system it relates to can be useful across your healthcare interactions. For example, a term like HTN might show up in your past medical history, not only in your cardiologist's notes but also in records from other providers, giving you a clearer picture of your overall health history.
Navigating the terminology jungle
Understanding the common abbreviations and terms used in treating, assessing, and monitoring conditions like heart disease or cancer can empower you to better manage your care. However, no matter how much you learn or try to remember, it's likely that you'll come across terms that just don't ring a bell. That's okay and normal. Consider these practical tips for getting the answers to your questions:
Ask your healthcare team:
During your next appointment, ask for any patient education resources or handouts that explain key terms in simple language.
Use trusted disease-specific organizations:
Websites like the American Heart Association, National Multiple Sclerosis Society, or others related to your condition may offer resources to help you understand the terminology specific to your care.
Google it:
For quick explanations, look up unfamiliar terms, but make sure to cross-check with reliable sources.
Request clear explanations:
Don’t hesitate to ask your care team to explain terms or abbreviations in plain English. For example, learning that “hypokalemia” means “low potassium” can make these terms easier to remember and understand in context. You can also write these terms down in your own healthcare notebook, or ask your care team to do it for you.
Assessing and Using Your Medical Records
To get your medical records, you can contact your health system and place a medical records request. You may be able to request your medical records electronically, so check with your health system for how to do so. You can request your entire record or just specific information. Be mindful that you may not get a copy of your medical records for a few weeks. There are costs associated with acquiring your records, so be sure to ask how much it will cost. Remember that information in your medical record is covered by the Health Insurance Portability and Accountability Act (HIPAA). Make sure you sign any necessary consent forms, especially if you are accessing medical records for someone else.
HIPAA (the U.S. Health Insurance Portability and Accountability Act passed in 1996) gives you the right to access your records and request changes to inaccurate or missing information. Ensuring your records are up-to-date isn’t just a proactive step to better, safer healthcare — it's your right.
Your medical records are a key part of your healthcare story, serving as a comprehensive narrative of your well-being. They outline the basics of your medical history, giving you and your healthcare providers an overview of important details like past diagnoses, treatments you’ve had (or are currently undergoing), medications, family medical history, allergies, and more. Understanding your own medical history doesn’t just help you keep track of what you’ve been through — it also allows you to see how your information is documented and shared across your care team.
Think of your medical history as a “resume” of your health. Just like a resume gives employers a snapshot of your education, work experience, skills, and other qualifications, your medical history gives healthcare providers a comprehensive summary of everything that’s been happening with your care. From diagnoses that have been confirmed to treatments you’re undergoing or conditions still being evaluated, your medical history paints the picture of where you’ve been and where you are now in your health journey.
Accuracy in this “health resume” is essential. Just as an incorrect degree or omitted job experience on a job resume could impact your employment, missing or incorrect information in your medical records could affect your care. This is why it’s important to access your records and review them regularly, ensuring they’re complete, up-to-date, and correct. Keeping tabs on what’s in your medical records means having an accurate, reliable picture of your health — a picture that could make all the difference in emergency situations or when coordinating long-term care.
Spotting errors: A beginner’s guide to error resolution
Mistakes happen, even in your medical records. But why should you care if something’s wrong? Well, errors in your records can lead to big issues. Imagine a serious allergy missing from your record or an incorrect medication dosage.
Doctors rely on your records to make informed decisions that safeguard your well-being, so accuracy is vital.
Reviewing your records can feel overwhelming, especially if they seem like an endless scroll unraveling in front of you. Regular checks make it more manageable, so try to do a quick review after major events, like changes in your care plan, emergencies, surgeries, or other significant treatments. This helps you spot any new errors before they pile up over time. Also, two sets of eyes is always better.
Checking for and fixing errors
Try these tips when checking your records:
Confirm your basic info:
Make sure your contact details, like name, phone number, and birth date, are correct. Errors in these can lead to mix-ups, especially if you have a common name.
Check past diagnoses and medical history:
Be sure that listed diagnoses are accurate and not just “possible” or “under evaluation.”
Update allergies and surgeries:
Ensure these are current and specific. For instance, if you had surgery on your right shoulder, it shouldn’t show up as a left shoulder surgery.
Bring in a second pair of eyes:
Ask a trusted family member, patient advocate, or friend to help review. Another perspective can be valuable for catching mistakes.
If you find an error, here’s what to do:
For smaller issues,
like a wrong phone number, contact your doctor’s office for a quick fix.
For bigger errors,
like a misdiagnosis, submit a formal written request to correct it. You might need to provide documentation to back up the correction, so ask about the required information and timeline.
If you’re hitting a wall, you have options:
Start by clarifying:
Contact the hospital to understand why the error hasn’t been fixed; sometimes, they need additional information from you.
File a complaint if needed:
If errors persist, you can file a complaint with the state health department.
Add a statement of disagreement:
For unresolved issues, you can add a note in your record indicating you disagree with the information.
Accurate medical records are the backbone of effective care. By ensuring there are no errors in your records and staying curious about the details, you can improve communication with your healthcare team, spot potential trends in your health, and bring meaningful questions to your appointments, making your voice an integral part of the decision-making process.
Familiarizing Yourself with Health Management Tools
Patient portals available through your health system can be valuable tools for managing your healthcare. These online platforms give you direct access to your provider’s notes, let you view test results, and often include secure messaging so you can communicate directly with your providers.
Portals can also help you stay on top of important health information like symptom management and lab results. For instance, if you’re monitoring glucose levels for diabetes, you can check trends in recent lab values and discuss them with your clinician through the portal.
If you aren't sure whether your healthcare provides uses a portal (they likely do) or how to access it, start by calling the main desk and asking. They can give you the website information and explain how to log in and set up an account. It's not much different than signing up for Amazon or any other website account.
In addition, consider using health apps to support your day-to-day management. Many apps let you track symptoms, set medication reminders, and even connect data with your healthcare providers, making it easier to update them on your progress. Some popular apps include MedisafeApp for medication reminders, Flo for menstrual health tracking, and MyFitnessPal and Apple Health for overall health management insights.
Chapter 3
Unraveling the Knots of Health Insurance
IN THIS CHAPTER
Understanding Medicare coverage
Explaining in-network vs. out-of-network
Finding the best prices on prescription drugs
Navigating coverage changes
Navigating healthcare is one thing — finding ways to afford it is another. Many individuals within the American healthcare system are covered by some form of health insurance. This may include private insurance obtained through employers or the marketplace, coverage provided by military service through the VA (veterans affairs department), or government programs like Medicare and Medicaid. But how does this complex system operate? Who shoulders the financial burden and to what extent? What happens if you're eligible for only one type of insurance? What if you have overlapping coverage or none at all?
This chapter guides you through the fundamentals of health insurance, illustrating its impact on both your healthcare journey and financial responsibilities. By the end of this chapter, you’ll feel empowered and ready to engage in meaningful discussions about coverage, out-of-pocket expenses, and avenues to secure insurance. So buckle up — this is an important part of the journey!
Understanding the Differences Between Medicaid and Medicare
Two of the most popular healthcare coverages in the United States are Medicare and Medicaid. Although they are often mentioned together, they are different coverages with different roles.
Medicare, for the most part, supports older adults, meaning people over 65 years old, as well as people with disabilities.
Medicaid supports people who have lower incomes, disabilities, young children, and more.
Medicare requirements do not vary from state to state but Medicaid requirements do. It’s possible for someone who has Medicare to also have Medicaid and vice versa because they are eligible for both coverages, such as an older adult who is in the low income bracket. In some instances Medicaid pays for services that Medicare does not pay.
The ABCs (and D) of Medicare Coverage
For many patients, health insurance is complex enough on its own, but Medicare adds an extra layer of complexity. Medicare is a federal health insurance program in the United States. People over the age of 65 or who have certain recognized disabilities are eligible to receive it. Medicare can be used to pay for healthcare expenses like trips to the hospital and many other healthcare services that other insurance companies will cover.
Medicare has unique rules governing what’s covered, how it’s covered, and for how long, and it interacts with other types of insurance in ways that are distinct from other payers.
Each part of Medicare covers different aspects of healthcare needs — one part focuses on inpatient hospital stays, another on outpatient care, like emergency department visits, and more. Understanding how these parts work together can help you navigate your coverage, anticipate what’s covered during healthcare discussions, and gain more control over unexpected costs.
According to the U.S. Department of Health and Human Services, a person may be eligible for Medicare if they:
Are aged 65 years or older
Have a qualifying disability, such as a diagnosis of end-stage renal disease (ESRD), which is permanent kidney failure, or amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease
For a deeper understanding of eligibility criteria and how they apply to your situation, check out resources from the U.S. Department of Health and Human Services (at hhs.gov), which offer detailed guidance on Medicare eligibility and enrollment.
Don’t worry — you don’t need to be a Medicare expert to start. This chapter provides a clear, straightforward overview of each part of Medicare to give you a strong foundation. You’ll gain a better grasp of how Medicare works so you can use it effectively as a patient and understand its role in your care.
Basics of Medicare Part A
Medicare Part A primarily covers inpatient hospital stays, hospice care, some home health services, and care in skilled nursing facilities. When a patient is admitted to the hospital, Part A generally covers related services, including meals, nursing, and medications administered during your stay.
If you or your spouse worked and paid Medicare taxes for at least ten years, you may qualify for Part A without a monthly premium. For more details on eligibility, visit medicare.gov or consult your care team, as there might be additional eligibility criteria for those who don’t meet the work history or age requirement but meet other requirements.
Even if you qualify for premium-free Part A, there are still out-of-pocket costs like deductibles, co-pays, and co-insurance — terms you might associate with other insurance types. Medicare Part A covers a large portion of hospitalization costs, but the length of your hospital stay affects coverage levels. For example, Medicare may cover 100 percent of your costs for the first 60 days, but from day 61 onward, you may need to share the costs.
Deductibles also apply to Medicare Part A. The deductible is the amount you pay out-of-pocket before Medicare starts covering your care. Being eligible for Part A doesn’t guarantee that you’ll automatically have other parts of Medicare, like Part B, which covers outpatient services. Some people only have Part A, covering inpatient costs, while other expenses, like doctor’s visits, remain uncovered by Medicare.
Make sure to familiarize yourself with the specific deductibles, co-pays, and the number of days covered under Medicare Part A for different services, such as hospital stays and skilled nursing facility care. This knowledge will help you plan for potential expenses and avoid surprises along the way.
Don’t assume you’re automatically enrolled in Medicare Part A just because you’ve turned 65. You may need to actively apply through the Social Security Administration. This can be done at a Social Security office, over the phone, or on the medicare.gov site. Make a note a few months before you turn 65 to start the enrollment process, as you don’t receive any reminders about your eligibility.
