How To Be A Better Patient Self-Advocate: a blog post for EVERYONE
You’ve been there before. Sitting in the doctor’s waiting room, listening for your turn. You’re nervous.
It’s not the doctor that most people fear. It is the worry of not being heard or helped.
You’ve heard the term ‘patient-centered medicine’ but has that been your experience?
I define patient self-advocacy as the act of speaking up and acting for one’s interests within the healthcare decision-making process.
This is not a blog post on how to fix the healthcare system. This is a post about what each of us can do as patient self-advocates to demand better.
With the help of some of my patients, I want to show you how YOU can become a better patient self-advocate. By adopting a captain mindset, building your own team, maximizing each appointment, knowing your rights and speaking up you’ll be able to level up your health experience.
A Captain Mindset
“Going through some complex medical issues the past few years, I found myself frequently wishing that I had a medical team that would communicate with each other and that they would figure out what was best for me. Each provider was worried about their specific task but no one was looking at me as a whole person.”
Assuming an active role in your medical care is an impactful step towards creating your own positive health experience.
I refer to this as developing a CAPTAIN mindset. A captain mindset means you steer the ship. You listen to your team, appreciate their roles and expertise, but you make the calls.
It means you’re the boss.
“We can’t assume as patients that our providers will always ask us the questions that are important. We are the experts in knowing what goes on in our bodies and in our lives. I used to hold back information in my medical visits until I realized if my doctors knew more about me, it might help them. So I got more comfortable talking about all the things that affected my pain, including the personal things I’m usually embarrassed to discuss.”
Health care providers (HCPs) are experts in their field but YOU are the expert of you. It should be a collaboration.
You know best what you want and need. When you describe this to your provider it helps them see you as an individual who has specific goals.
The empowerment of taking control will lead to greater self-efficacy. This has been shown to positively affect attitude and ultimately overall perception of health.
One of the most important tasks you face as a captain is building your team. You need help navigating the murky waters of medicine.
One might also call it a coxswain's mindset
Build your team
“It took me a really long time to find all the providers that really help me with my longstanding pain. I wish I knew then what experience has taught me. You can’t always rely on referrals from your doctors, friends or insurance. You have to be proactive. It took me 4.5 years to get there.”
Find a match. Finding a match with a provider means looking beyond their degree and certifications. Medical specialty and training are important but other attributes may be essential to a good fit. Specifically write down your preferences for things like gender, tenure, location, insurance, alternative/holistic approach.
Hopefully you find several good matches
Tap into your network. I’ve found the best way for me to connect others with good clinicians is asking people I respect. If you don’t have a big network start asking around.
Research. Check out various websites like vitals.com. Don’t get excited about all the letters behind their name or the professional sports teams they work for. That doesn’t always mean they are a good fit.
Your team is more than one person. Form relationships with members of the whole practice like nursing assistants and front office personnel. Showing appreciation and respect for everyone in the office very well may be critical in getting what you need.
The importance of co-advocates. Your team should include individuals not directly involved in your medical care. I call these individuals co-advocates. A second set of ears can be helpful at an appointment. Parents are the original co-advocates who can teach kids to speak up about their health and wellness preferences.
The essentials need to be met. There are critical things that you must feel with any clinician: namely, safe and respected. Unfortunately discrimination, such as ageism, sexism, weight shaming, language barriers, and mental illness stigmas exist today. They adversely affect individuals seeking medical care and should not be tolerated.
Be ok with a break-up. If your needs are not being met, self-advocacy may mean changing providers. Don’t feel bad about it; feel good that you are looking out for yourself.
Maximize each appointment
The past few years I’ve found myself doing a lot of coaching of my patients to help them maximize their medical visits with me and other providers. During these conversations I’ve even gained some tips.
“I want my provider to be prepared so we can avoid follow-up meetings or phone calls needed because they had to go back and find something out that they could have worked on before our meeting.”
Before- Get Prepared
Proactive from the start. A brief phone call prior to your initial visit with a provider will help jump-start your relationship and your care.
Strategize. Reflect on what your ideal appointment looks like. Verbalize it out loud or write it down.
What are all the moves you want to make?
Give “prepared” a bad name. Send in paperwork in advance if possible. The likelihood that it will get reviewed is higher that way.
Find time to get your labs and other diagnostics completed a week prior. Even if they are sent directly to your provider, bring a copy of results with you.
If you feel that your case is complicated, or you want to focus on a specific issue, mention that when scheduling.
“A week before a scheduled appointment I will often send an email or use the messaging service portal provided by the health provider organization to list the issues I want to go over and questions I want to have answered. Sometimes I include a reminder about something that the doctor said he/she would do at our last meeting as a reminder.”
Research your medical issue
Many health care practitioners will roll their eyes at the mention of Dr. Google. While there are downsides, the internet can be a big driver of patient empowerment. Embrace it but recognize it’s potential downfalls.
The doctor will see you now....
Do research to find out:
Standard of care for your health issue. What should your provider be expected to know in terms of diagnostics and interventions for your health issue?
Seek alternatives. Don’t assume that ‘standard of care’ always means best of care. Explore alternatives and be comfortable bringing them up in your conversations with your clinician.
Communities of like-minded people. Connect with folks who are going through the same issues or who believe in pursuing similar avenues of medicine. (eg, holistic)
“I want to leave my appointments feeling that I now know everything that I wanted to know from the health professional.”
Check in: When you check in ask what the expected wait time might be. If it is long, use the extra to prepare for your face-time with the provider.
Record everything: Take notes. If there is something in particular that you don’t think you’ll remember ask if you can record them explaining it.
Ask questions Ask all of your questions, even ones that embarrass you. If you don’t have any pressing concerns still try to ask a question.
Be persistent with getting answers to your questions even if the responses are “I don’t know” or “I need to do more research.”
Be a parrot. You should get as much clarity as possible when it comes to your health. Repeat back what you heard and summarize your appointment and/or the plan going forward for your provider.
So you're saying I should do my exercises everyday?
After - Review and Communicate
Review your notes and summarize your appointment in a journal or simply type them up in your phone. If you brought a co-advocate, discuss the visit to capture anything you missed.
Make additional appointments agreed upon as next steps by you and your provider. You might need to be a squeaky wheel by calling to ensure this process gets going.
Keep the communication going. Make use of whatever additional methods of communication they have: online portal system, email, personal phone, other medical and office staff
Don’t be afraid to provide constructive feedback to your care team on what you thought went well and should be better.
Know your rights
Knowing your rights as a patient includes the following:
Your privacy rights
In this age of digital documentation the transfer of information is easier than ever which is great but as a patient self-advocate you need to know your privacy rights as designated in the U.S. by HIPAA.
Exercise your rights- present and future
You have to right to refuse medical care.
You have the right to seek federal assistance when disabled.
Everyone should consider having a medical power of attorney and living will. They allow you to have voice or a proxy in the event that you can’t speak for yourself.
Plan for the future so you can enjoy the present
Your Insurance benefits
We tend to avoid learning about subjects that we either don’t like or make us feel uncomfortable. I’d be shocked if any of you are chomping at the bit to read your policy’s Summary of Benefits. But this is important; you must understand your coverage.
If you have insurance, familiarize yourself with what your coverage is, what providers are in and out of network for you. Learning how to read and possibly challenge an explanation of benefits (EOB) form can save you a lot of money.
You still have rights if uninsured
If you are not covered by a commercial insurance plan know your rights to have access to insurance through Medicaid and if uninsured, medical care at any emergency room. Call medical providers and inquire if they offer pro-bono or discounted services.
Sometimes you have to raise your voice to be heard
Talking to a stranger can be difficult, especially if you think of that person as an authority and feel vulnerable because your health is the topic.
You want to be heard. Many patients worry about speaking up and hesitate to ask questions to avoid sounding dumb but you can’t be heard if you don’t speak up.
Write your questions down: You need a list of questions. In the moment it’s likely you’ll forget so write them down.
“I make a list of the things I want to go over at my appointments. It’s good to do this over a few days prior to the appointment and not just an hour before as you often come up with additional questions given more time to think about things.”
Practice asking your questions at home, or in the car prior to your visit.
Be honest about how you’re feeling. Mindreading doesn’t exist and while body language does, being able to state if you are nervous, embarrassed or frustrated will help.
Ask Why? Ask to understand. Why is my back hurting me? Why are you ordering an MRI? Why should I take that medication? Why am I doing these exercises?
Ask proactive questions. Your questions should reflect your expectations. Example: “I’d like a long term solution, what is the best course of treatment?”
In addition to asking your questions work on leveling up your listening skills. Focused listening will help you clarify concepts, terminology as well as your plan of care.
“My motivation for managing my health is to feel fully satisfied that both the health professionals and I are doing everything possible to deal with whatever issue I may have as well as whatever might be needed to avoid future health issues.”
Dealing with health concerns is often accompanied by uncertainty and fear but having a sense of control can mitigate some of this. While it can feel like a lot of work, the rewards are well worth it.
I hope by following the captain mindset approach, cultivating a team, maximizing each appointment, knowing your rights and speaking up that your experience will be better.
By sharing this information with your patients, family, friends and colleagues perhaps we can start to make changes on a broader level.
And perhaps this is in fact a post on how to fix the healthcare system. Level Up.
Pictures by Christian Wiediger, Camille Couvez, Jason Rosewell, Julio Casado, Jamie Street, Anna Samoylova, DDP, JOhn Tyson, Rod Long and Matteo Vistocco on Unsplash