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Otolaryngologist Alan P. Feren and patient advocate Joyce Griggs discuss their article “Why health self-advocacy is an essential life skill.” Alan and Joyce share the personal journey of becoming a “chief health executive” and explain why managing medical care should be treated with the same seriousness as financial planning. They outline the eight core pillars of advocacy, ranging from health literacy to financial navigation, and argue for the creation of condition-agnostic tools that help patients regardless of their specific diagnosis. The conversation highlights how preparation and organization not only reduce anxiety for caregivers but also save time for clinicians and improve overall outcomes. Join us to find out how you can build the confidence to navigate a complex system effectively.

This episode is presented by Scholar Advising, a fee-only financial advising firm specializing in providing advice for DIY investors. If you want clear, actionable strategies and confidence that your financial decisions are built on objective advice without AUM fees or commissions, Scholar is designed for you. Physicians often navigate complex compensation structures, including W-2 income, 1099 work, production bonuses, and practice ownership. Scholar’s highly credentialed advisors guide high-earners through decisions like optimizing investments for long-term tax efficiency and expert strategies for financial independence. Every recommendation is tailored to the financial realities physicians face.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome back otolaryngologist Alan P. Feren and patient advocate Joyce Griggs. Welcome back to the show.

Joyce Griggs: Thanks again for having us. We appreciate the opportunity.

Kevin Pho: All right. Let’s jump right into the article. Joyce, for those who do get a chance to read it, what is this one about?

Joyce Griggs: Well, what we talk about in this article is that we talk about financial literacy and planning our careers as important life skills. Well, what about our health? This is the greatest asset that we have, and yet we don’t have a set of skills that we all learn to help us be the very best advocates we can be for our health care. So what we decided was that not only is it an essential life skill, but it is also something that needs to be condition or situation agnostic because there are materials out there in the ecosystem as it relates to this topic, but it is a fragmented group of materials. Some of them are very specific to certain disease states and so on, which is amazing. However, if you are out there still searching for a diagnosis, you are among some of the most vulnerable. Where do you go if you need to find this information? So we talk about sort of a universal, comprehensive hub of information that is condition and situation agnostic that all of us really need to be paying attention to.

Kevin Pho: Joyce, it is important of course for us to be health self-advocates. For those who didn’t listen to our first podcast together, just give us some of the reasons why, especially in our health care system, it is important for patients to advocate on behalf of themselves.

Joyce Griggs: Absolutely. One of the things that I like to say is that I found myself as an expert navigator of the system, but I was not an expert advocate for myself. There is a difference between navigating and advocating. What I realized was at the heart of advocating is that I, and we are all each the leaders and co-partners in our health care. I always looked at the health care professional, my doctor or my nurse practitioner, as the leader. It doesn’t quite work that way.

If you have to coordinate care (I mean, even those of us who have routine care are seeing dentists, dermatologists, OB/GYNs, primary care physicians), it is extremely important to be able to pull all these things together for ourselves. This becomes essential because when we are partners in our care, there are data that show that there are better outcomes. We get better health care. What we don’t realize is because we are afraid, maybe “Oh, I am being confrontational with my doctor or nurse practitioner,” at the end of the day, doctors and nurse practitioners want engaged patients because then they realize: “Okay, it is not so much what happens inside the visit. It is what happened outside of the visit that really impacts our care and our health.”

Kevin Pho: Joyce, we are going to of course talk about some of those tips and ways we can become better self-advocates. But I want to ask Alan this question because obviously, as an otolaryngologist and a patient advocate, you have seen both perspectives. So talk a little bit more about the evolution of the doctor-patient relationship. As Joyce said, it used to be the physician would be the leader and the patient would follow essentially what the physician says, but that relationship has evolved through the years, right?

Alan P. Feren: It has, Kevin. Basically, it is based upon many chapters in my personal life, beginning with helping my parents when I was in medical school, and then from me moving from the classroom to the operating room, to the recovery room, to the emergency room, and then me as a patient either performing surgery or having surgery performed on myself. I learned through that experience, working with my patients and my parents’ physicians, how to collaborate. I think the collaboration is really important.

So when we talk about self-advocacy, it is really calm assertiveness. It is not adversarial. What I saw over the years of my practice was that patients who were empowered became activated, and when they become activated, they become engaged in the care themselves and partner with you. That is really the evolution of the partnership. However, I think the bottom line is: The best medicine isn’t what happens to you; it is what happens with you.

Kevin Pho: Alan, tell us about how when patients are activated, how can that improve their care? Do you have a story or a case study perhaps you could share with us?

Alan P. Feren: Yes. When I first started my practice, because it was just shortly after the dark ages and the stagecoaches, I wrote all my own patient information. I knew what was going to happen on day one, day two, day three postoperatively because my practice was primarily surgical in nature. Patients would come back to me and say: “Gee, Dr. Feren, everything you said happened just like you said it was going to happen.” I thought that was an interesting experience that I had personally.

Another situation that was fairly comical actually was that patients would be handed a stack of information that I had written, and they said: “Gee, do you expect me to read all this?” And I said: “Yes, I do expect you to read all this because this is going to be your story both preoperatively and postoperatively.”

So prepared patients are going to do better. We know as physicians, and I am sure it is your experience as well, that it makes all of the time that you spend with them much more efficient. If you come in as a patient who is organized, empowered, and willing to partner with your physician, you are going to have the best outcomes, or the outcomes will be as close to optimal as possible.

Kevin Pho: Joyce, the article talks about health self-advocacy as an essential life skill. So what is your approach to mastering some of these concepts?

Joyce Griggs: There are eight concepts that we say are part of health self-advocacy. We don’t say “Come in and learn all eight of them.” We say “Come in and take what you need and then develop as you go.” I was at a conference recently, and it was an industry conference, and there was a lot of talk around health literacy and the importance of health literacy, which is an important piece of health self-advocacy.

But I think the first thing is what we spoke about: mindset. My mindset now is that, wait, I am a leader and a co-partner with my providers in my care. Yes, I need health literacy and I have to make sure that I understand these concepts and can put them in my own language. It is also about learning. As Alan was saying, it is a certain sort of assertiveness that I have to know myself. Maybe I am not an assertive person. If I am not assertive, then maybe I need to write my questions and hand them to my doctor or send them in advance to my nurse practitioner so that I don’t have to be the one asking these questions.

It is important to not just head nod, but to really know that you understand what it is that they are asking you to do. So it becomes asking for clarity. And then of course we talk about things like knowing your family history and your personal health history. These are things that are critically important and that not everyone has a good handle on: What is our personal health history and what is the family history? Because that may impact you as you go further in your life, as you grow older things change. Then you say: “Oh yeah. Remember Aunt Clara? She had type 2 diabetes later in life.” Something along those lines.

So it is also of course the financial aspects of care. It is important in the U.S. These are things that we have to deal with. Also building the care team. We have a whole list of tools on how to interview a health care professional because even if you don’t have a choice (because some of us don’t), you still want to know who that person is because you are going to be in a relationship. I think that is the thing that is most important to understand as we sit as advocates for ourselves: When we get overwhelmed, to say, “You know what? I am a little overwhelmed right now. Can you please just repeat that?” These are all the things that we talk about in terms of what it takes.

Kevin Pho: Joyce, I know that it is like a whole program and there are eight pillars as you said. So for those who just want some takeaway messages (and certainly we could direct them to your resources), what are the top three things that patients should know about that would have the highest impact or yield for them to become better self-advocates?

Joyce Griggs: Yeah, I think the number one thing that I say is: Be prepared for your visits. Look at the visit as something that you don’t just go to and wing it. You actually take some time in advance of the visit to figure out what are the two things, maybe three things, that are most important to you in that visit and open the visit with: “These are the two things that are most important to me that I would like for us to cover today.”

To have clarity on that, learn how to use the portal if it is available in the practice that you are in. Understand what is in that portal and how you can access that material and how you can communicate with your health care providers in between visits.

And then the third thing that I like to say is when it comes to “Dr. Google” or “Dr. ChatGPT” now in everybody’s lives: Really be mindful of where that information is coming from. Often ChatGPT does not give you the references, so you want to make sure that you are using really credible references when you are getting information from the internet. If you are using ChatGPT or another one of these AI models, it is really important to ask it to give you a list. “Give me the top three things and then tell me where did you get this information” so that I make sure that you are using credible sources. So those would be my tips.

Kevin Pho: So that actually led me to the question I was going to ask specifically about AI. I read in The New York Times that a lot of patients are simply uploading their medical records to ChatGPT and other AI large language models. You mentioned that sometimes the information that they give back isn’t reliable. So Joyce, have you heard of a case where sometimes a recommendation made by AI led a patient astray perhaps, or gave a patient misinformation when it comes to their health?

Joyce Griggs: I don’t have a specific case of this, but what I will say is that we know that they hallucinate. So these AI models hallucinate and sometimes make things up. All of the experience that I have heard from experts, from either patient advocacy organizations or doctors or other health care professionals, is: If you are loading your information into this and asking it a question, you again have to make sure that you ask it what sources it is using, because otherwise you could get into trouble. Never take it as definitive. Now they have gotten smart; there are more protocols built into them now where they will say: “This is not medical advice. You need to talk to your doctor.” They will say that very expressly. I think that is the most important thing for people to remember: Do not use it as medical advice. Do not use it as 911. Just go with caution.

Kevin Pho: Alan, when it comes to patients being self-advocates, there are a lot of friction points in our health care system, both from the patient standpoint and of course from the clinician standpoint as well. Sometimes I read in the physician forums when patients do their own research and go to ChatGPT or Google, it is often framed in a pejorative framework. So tell us about some of the friction points our health care system has that makes it more difficult for patients to become self-advocates today, and how can we overcome some of those obstacles?

Alan P. Feren: First I’d like to go back to something that Joyce spoke about, which was the hallucination. I personally have experienced problems in my writings where sources have been cited, but I go and personally check the sources. It is not enough to know that such and such a source was used. They may even quote that source incorrectly. For example, one of the things that I was looking at was how much time physicians actually spend with patients, and ChatGPT gave me an answer of 47 percent of the time, which is really not true. So it is important to really check those sources yourself. If you are not a clinician, sometimes it is hard to kind of disarticulate all the information that is in there. But if there is something that looks askew to you, don’t use that source.

In terms of friction points, I think it is going to take time now for physicians to begin to accept the fact that patients are becoming more and more engaged in their care. So it is going to have to be a give and take between physicians understanding the patient’s needs and the patient’s being that calm assertiveness that I spoke about. The take-home message really is that better decisions, fewer errors, and stronger relationships are built when there is this partnership. Empowered patients have improved outcomes, and this rebuilds trust in the system. So you need to have this full participation on both sides and equal 50/50 responsibility, which I have mentioned in our first article together.

Kevin Pho: We are talking to Alan Feren and Joyce Griggs. Alan is an otolaryngologist and patient advocate. Joyce is a patient advocate. Today’s KevinMD article is “Why health self-advocacy is an essential life skill.” Now we are going to end with asking each of you just to share some take-home messages. Alan, why don’t you go first?

Alan P. Feren: Sure. I think the message that I would give particularly to my clinician colleagues is: Prepared patients benefit everyone. If we encourage them to come prepared, take notes, have an agenda as Joyce had mentioned, and bring a support person, this improves safety and it also brings back efficiency in the office. If you have 15 minutes and five minutes of that 15 minutes is chart work basically on the EMR, there is 10 minutes of time to cover 2, 3, 4 different issues that we have, particularly as we age. So the message really, the bottom line is: Advocacy strengthens and not slows care. It makes it much more efficient.

Kevin Pho: And Joyce, we will end with you. Your take-home messages.

Joyce Griggs: My take-home message is always this: It is important to remember that we are the partners and the leaders in our care. I always say: Assume nothing. Do not assume that your doctor is going to follow up with you. Do not assume that your nurse practitioner is going to ask you all the questions that you need to have asked. First of all, people are human. Second of all, the system is built for speed, not for connection. So it is not the fault of the clinicians and it is not the fault of the patients; it is just how it is. It is really important to know that you need to be on top of these things.

Kevin Pho: Joyce and Alan, thank you so much for sharing your perspectives and insight. Thanks again for coming back on the show.

Joyce Griggs: Thanks for having us again. Thank you.