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Patient advocates Alan P. Feren and Joyce Griggs discuss the article “Why agency and partnership are vital in modern health care.” In this episode, Alan and Joyce explore how collaboration, advocacy, and shared responsibility create stronger, more effective care. Together, they unpack the four pillars of good medicine—agency, advocacy, responsibility, and partnership—and highlight how each empowers patients to play an active role in their health. Through Alan’s personal story about a missed follow-up that could have had serious consequences and Joyce’s perspective on navigating the system as an advocate, they reveal why mutual trust and communication are essential to safe, humane care. Viewers will learn how patients and physicians can work together to strengthen agency, support advocacy, and build the partnerships that restore confidence in modern health care.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Alan P. Feren and Joyce Griggs. Alan is a former head and neck surgeon. Joyce is a patient advocate. Alan also is a patient advocate, and we’re going to talk about the KevinMD article, “Why agency and partnership are vital in modern health care.” Alan and Joyce, welcome to the show.
Alan P. Feren: Thanks for having us. We appreciate the opportunity to be with you.
Kevin Pho: All right. I’m just going to ask each of you to briefly share a story, and then Alan, we’re going to talk about the article. Alan, why don’t you go first, just briefly share your story.
Alan P. Feren: Sure. I’ve been a physician for over 50 years, and during all of my iterations since private practice, there was a single truth that flowed through all of my activities, and that was this: The best outcomes result from patients who are fully engaged and in fact have a partnership with their physicians. My contention is, and Joyce will echo this, that the partnership goes well beyond what a relationship is. It’s an equal opportunity, a 50-50 mix, and to get the best clinical outcomes. As I mentioned, that partnership needs to be strong. I identified four different but related pillars, which we will discuss in the article as we go by. I will tell you from all the work that I’ve done that educating patients and educating physicians about the importance of this partnership has been a key aspect of what I firmly believe. It’s what brought me to the article, which was a personal experience that I’ll share after Joyce talks about her background.
Kevin Pho: Sure. Joyce, tell us about your story.
Joyce Griggs: Sure. My story is I’ve worked in health care communications for over 20 years. What happened in my life was that I wound up in a situation helping a loved one, my former partner and husband, go through what seemed like routine surgery for joint replacement. That went badly for a number of reasons because of some co-occurring conditions. I had made some assumptions about what was happening as I was communicating with the health care providers, which were just the wrong assumptions.
Based on that, I remember talking with the nurse practitioner who was our home health aide, and I said, “If this is happening to me, somebody with a lot of experience who thought I was doing all the right things, how does anyone else who doesn’t have this background that I have make it through the system, especially when things get complicated?” From that, I started a website and a platform called United States of Healthcare, and it helps people. It’s all free content, helping people to be their own health advocate. I believe it’s something that’s critically important. That’s how I met Alan, and we started working together. He started collaborating on content that we’ve been bringing to the community now for over five years.
Kevin Pho: All right. We’re going to talk about the KevinMD article, “Why agency and partnership are vital in modern health care.” Alan, for those who didn’t get a chance to read the article, tell us what it’s about.
Alan P. Feren: Sure. The article almost wrote itself, and it’s based upon an experience that I alluded to earlier. I had a very large pre-malignant polyp that was removed a number of years ago, and it was advised to have a follow-up endoscopy at about six months, which I did. The removal was done by an advanced, endoscopic-trained gastroenterologist.
At any rate, I was told after the six-month clearance to follow up in three years. They would send out a message and let me know. Three years came by, I checked my calendar, and there was no notification. I called, and of course, you can never get ahold of anybody personally. I called multiple times, no answer. I finally got ahold of somebody, “We’ll get back to you.” Week one went by, no response. Week two went by, called, no response. Week three, “We’ll get back to you.”
Finally, they did get back to me and said, “Yes, you do need a follow-up endoscopy, but we’re not going to do it. You need to go back to your original gastroenterologist.” Well, my original gastroenterologist had retired, so I needed to reestablish myself with a new gastroenterologist, which I did.
I really pushed through making sure that I would have this follow-up study. About that same time, I was feeling kind of draggy, fatigued. I just wasn’t feeling myself, having some other symptoms that I wasn’t sure what was going on. I continued to push. In a routine visit with my cardiologist, I said, “Look, throw in a complete blood count because I think there’s something going on.” I’d had a previous GI bleed a number of years ago and thought that it was reminiscent of that experience. Sure enough, I had a significant anemia. I finally got my endoscopy. I found a bleeder. Fortunately, there was no recurrence of the large pre-malignant polyp.
What it led me to realize is that I had to advocate very strongly for myself. If I hadn’t done that, the outcome certainly could have been very different. As I look at the overall landscape, health care is not a transaction. The old model of something being done to you needs to be changed to something to be done with you. It’s collaborative and not confrontative. In the article, we describe the ways in which people can collaborate with their particular physician and health care provider.
We are very strong advocates together of self-advocacy. The question always is, well, here’s me as a very knowledgeable, well-trained physician. I’ve had over twenty major surgeries. I know the patient experience. I thought that by bringing the patient experience along with the other side of the stethoscope would make a lot of sense and resonate well with both physicians and non-physicians alike.
Kevin Pho: And it sounds like this is the evolution, of course, of the doctor-patient relationship. Gone are the days where that relationship was more patriarchal, and now it’s more like a partnership. Right, Alan?
Alan P. Feren: Absolutely. The partnership really means there’s responsibility on each part. If you talk about a relationship, a relationship is really just “I know you.” We have a relationship now, Kevin, but we’re not partners. The depth of that relationship moving to a partnership means that the doctor is going to show up, do his or her best to treat you, and the patient needs to be prepared, thoughtful, non-confrontative, and respectful. Both sides need to listen. It needs to be a conversation so that each side is clear in their understanding. We want patients, when they show up, to ask the questions, “What if? What if I don’t? What are the consequences? What are my options?” Have that conversation. What we want is educated patients, and that’s what Joyce has been doing with her United States of Healthcare content.
Kevin Pho: And Joyce, as you hear this story from Alan and, of course, reflecting on your own experiences, as you said with your husband, tell us what was going through your mind as you heard this story from Alan.
Joyce Griggs: Well, when I was listening to the story from Alan, what I was thinking of is the saying, “No news is good news.” When it comes to health care, so many times, as Alan talks about, the system went silent. We’re like, “Oh, great,” because of fear. There’s this underlying fear whenever we’re talking about health.
I think that what we both advocate and what we talk to people about is this notion of agency. We’re more in control here than we think because I often say, “Look, you are the expert of you. I am the expert of me.” When I come to the relationship with my doctor or nurse practitioner, what I really want to be doing is talking about what’s going on with me. If I’m given a treatment plan that I can’t follow through on because of whatever happens to be going on in my life, that is where there needs to be conversation, not confrontation, in terms of, “OK, I can’t do that, but could I do this instead?” Because when we walk out the door, it’s not a partnership anymore. It’s 100 percent up to us and the people in our lives to help us follow through. That’s what it really comes down to.
Kevin Pho: Joyce, you mentioned that word agency. What are some concrete ways, concrete examples, where patients can assert that agency? What are some simple things that they can do?
Joyce Griggs: Well, at the end of the day, it’s all about the power to make a decision, to set your own goals. What I always say to folks is when you’re getting ready to go see your doctor, it’s important to take some time for self-reflection beforehand and really think about what the things are that are most important to you as it relates to your care and your condition, whether you’re speaking about preventative or if you have a chronic condition and there’s something that you’re trying to manage.
That’s what it boils down to: Understanding what it is that I want for my care and my health or those that I’m taking care of in my life. For women especially, Generation X right now, they’re taking care of themselves. They’re generally taking care of their partners, and they’re usually taking care of their parents. You have a lot on your plate, and it’s important to be able to discern what’s most important and bring those one or two things to the table at each of your visits, because let’s face it, it’s time-limited. None of us like it, but it is the heart of the matter.
Kevin Pho: Alan, in your article you identify four key elements of good care: agency, which we just talked about, advocacy, responsibility, and partnership. In an ideal situation, maybe tell us a story or an example where those four key elements work together to provide that ideal relationship between a doctor and a patient.
Alan P. Feren: Sure. Let’s start with the partnership, because partnership is the glue that holds everything together. Think of it as a four-legged stool, if you will. If you’re missing one leg of the stool, it wobbles. Agency is your voice, as Joyce has said. The advocacy really protects the vulnerable. Someone always needs to have somebody there with them to advocate for them, a second set of ears in the examination room or at the hospital bed. I always talk about, if you don’t have somebody there, you’ve got this phone. Ask if you can record because you may want to review what has been said, because we don’t typically hear everything.
I talk about in the article the fact that physicians often quickly interrupt patients. Studies have shown between 11 and 18 seconds. You get this preconceived notion. You’ve got a time of 10 or 15 minutes, and 50 percent of your time is going to be spent on administrative overhead. You need to get the story, and you’ve tried to put things together, get that differential diagnosis working so you can order the appropriate tests and so forth. It’s really key for physicians to be very careful and listen, and prevent themselves from asking that question too early, because you’re going to miss something that’s going to come later in the story.
The responsibility part is the showing up, as Joyce has alluded to. It’s being prepared, being organized. Know what your history is. You’re going to have five or ten different things. What are the most important two things? Because that’s all you’re going to have time to go through with your physician at that point. People need to take advantage of what’s available technologically. Electronic medical records have their upside and downside, but the upside is you’ve got all your lab results, you have the ability to contact and ask questions, knowing that it’s going to be one to three days before they get back to you. Don’t use it in an emergency situation.
I think that those are the key things that lead to the partnership. If people are prepared, show up, follow through, are not confrontative, are educated, and use sources that are credible. That’s one of the things that I do through my advocacy: help patients formulate the important questions that they can ask, find out the alternatives, and also lead them toward credible resources, not using Dr. Google as their primary source for information.
Kevin Pho: Alan, do you still see some physicians adhere to the more traditional doctor-patient relationship? I mentioned that patriarchal model. What about patients who have physicians who still don’t see that relationship as a partnership? What kind of advice do you have for patients in that situation?
Alan P. Feren: Well, you try to have patients find their voice. I think today it’s a much more casual relationship. I know through the years of my practice, initially I was referred to always as Dr. Feren, and then I was shocked when someone came in my office and said, “How are you, Al? How are things going?” Today I think it’s less than that. I think Gen X, Gen Y, and Gen Z now are on a first-name basis with their physicians and are starting to use technology a great deal so that they’re educating themselves, but may not be getting the right information or may be making demands on physicians that are making it difficult for physicians to have that equal respect and partnership that I describe.
Joyce Griggs: Can I just say one thing about that? I do talk to people often. They’ll say, “Listen, my doctor’s not open to dialogue.” What I say to people a lot of times is to know how your doctor or nurse practitioner makes you feel before you go into the conversation. Because if we can understand the emotional state that we get into: “He’s a great doctor. I don’t want to change doctors, or I can’t change doctors because there’s no other available.” It’s true. “But that guy makes me anxious. My doctor makes me anxious.” If we know that in advance, we can manage our state and move ourselves through that.
There are ways of reaching even doctors who don’t want to be in dialogue. Say, “Well, here are my questions. I’ve written them down. Why don’t you have a look at them and then tell me what you think?” That sometimes can work better than trying to voice it, especially if they make you anxious, because then you get tongue-tied and the thing can go down the drain.
Kevin Pho: I love that tip, Joyce. I was about to ask you how patients sometimes can find that voice if they’re a little bit shy or timid. Just that simple tip of having those questions written down and handing it to the physician, and that’s happened to me many times in a primary care setting, that absolutely can be effective.
We are talking today with Alan P. Feren and Joyce Griggs. Both of them are patient advocates. Alan is a former head and neck surgeon. Today’s KevinMD article is “Why agency and partnership are vital in modern health care.” Now I’m going to end by asking each of you to share some take-home messages with the KevinMD audience. Joyce, why don’t you go first?
Joyce Griggs: Well, I think the main takeaway is that it is a partnership, and it’s really important for us to come with what we think is most important to us as patients and to figure out the best way to communicate with the doctors, nurse practitioners, and practitioners in our lives.
Alan P. Feren: My take-home message really is that for the partnership to exist, it’s important for each side to be respectful, to listen carefully, and to be mindful of the time element that’s available. Doctors really want to do what’s best for their patients. Patients want to have the best outcome. For that to really happen, there needs to be a partnership, which I describe as a 50-50 relationship. Doctors show up and give their best. Patients, show up knowledgeable, ready to go, not anxious. Have their questions ready. Be prepared.
Kevin Pho: Alan, Joyce, thank you so much for sharing your story, time, and perspective. Thanks again for coming on the show.
Alan P. Feren: Thank you, Kevin.
Joyce Griggs: Thank you.