Healthcare Powered by You: Self-Advocacy in a Broken System
Healthcare advocate Joyce Griggs shares her journey from navigating her partner’s dangerous post-surgery crisis to founding United States of Healthcare, a platform empowering patients to become their own advocates. Drawing on 20 years in healthcare communications, Joyce opens up about the assumptions that nearly caused tragedy, and why self-advocacy is as essential a life skill as financial literacy. She explains how preparation, asking the right questions, and challenging assumptions can change outcomes—sometimes even save lives.
In this conversation, Joyce highlights practical tools from her course Healthcare Powered by You, including how to prepare for doctor visits, document family health histories, build care teams, and navigate financial and insurance barriers. She also shares her innovative integration of AI into advocacy education, helping patients cut through information overload and feel confident in high-pressure medical situations.
Listeners will walk away with actionable strategies to advocate for themselves or loved ones, and a fresh perspective on why self-advocacy isn’t optional—it’s survival.
Resources Mentioned:
www.unitedstatesofhealthcare.com
Doctor’s Visit Checklist: checklist.unitedstatesofhealthcare.com
Healthcare Powered by You (course on self-advocacy skills)
AI in patient advocacy: foundational prompt for asking healthcare questions
South by Southwest (SXSW) Health & Tech corridor
Key Topics Covered:
Why self-advocacy is the “first aid” of healthcare literacy
The gap between knowing the system and surviving it
Common assumptions patients make that can be dangerous
How to prepare for rushed doctor’s visits (before, during, and after)
Essential questions to ask providers about treatment options and medications
The role of AI in making healthcare information accessible
What patients misunderstand about insurance, coverage, and rationing
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TRANSCRIPT
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Host
Joyce Griggs, thank you so much for being on the podcast.
Joyce
Hi, John, thank you so much for having me. It's great to be here.
Host
Tell us for the people who aren't familiar with your work, tell us how you got into advocacy and what it is you do.
Joyce
Thank you.
Joyce
Well, I got into advocacy through a family crisis. My partner at the time had a knee replacement surgery and he had some other coexisting conditions and it caused a major, almost dangerous situation. And I was navigating that and in that, because I have 20 years experience in healthcare communications, I knew a lot about the system and I thought,
you know, I know what I'm doing. I've done all the right things. We're going to be okay. And we weren't okay. And in working with nurses that were helping us through that, I realized that I was working as an advocate for him. And then I also realized that I have all this experience and yet I found myself in this very difficult situation. How do other people do it? And so I began United States of healthcare.
which is a platform and a website that offers right now, everything is free, but blog posts and other tools and resources to help people be their own health advocate. And it's all condition agnostic. It's for any situation, anybody in any situation. So that's how I got into all of this. I was brought here by circumstance.
Host
Yeah, a lot of the advocates that I talked to are in the same boat. If they're not nurses or doctors, their child, their partner, their parent, they end up realizing that it's more of a hands-on sport, healthcare in the United States, than we all like to think of it. And so we, but so many people are lost and they see the need. And so people are really filling a void, much like you are. I love the fact that you've taken some of your...
background outside of the medical space and have kind of brought it into this information and technology space. Was that a natural fit for you when you were thinking of how to work in the advocacy world?
Joyce
I mean, for me, know, everything happened, I have to say, very organically. You know, at first, when I was bringing this to the table, I was spending a lot of time at a conference called South by Southwest and in the healthcare corridor at South by Southwest, meaning a lot of people that were doing a lot of interesting things in healthcare through technology. And then I started hearing people's stories and I realized that I was not, I was by no means alone and
Host
Mm-hmm.
Joyce
So my first inclination was tell people's stories, how they went through extremely difficult situations and got through. I started there. And then I quickly realized that, you know what, we need a body of information that is foundational to all of the pillars of health self-advocacy. And so I began to write the posts and the blog posts in a more systematic way and then created a course so people could go through it.
It's just the kind of thing that we don't realize we need it until we need it is what happens to most of us.
Host
Yeah, it's so true. I mean, you're big on self advocacy as this essential life skill. Can you explain what that really means in practice? What does it look like? And get let's, you know, maybe even make a case by case like a case study or a fictional kind of example of what that might look like so that we can understand what that what that means.
Joyce
Yeah.
Joyce
Yeah.
Joyce
Well, when I say that, you know, we talk about financial literacy, things we need to know to be able to get through our lives as adults. And I start with the visit, with the visit with the health care provider, because that's the thing that everyone can identify with in terms of what does it mean to be your own advocate. And one of the things that I learned through my research is that there are data that show when we show up as informed patients, when we show
an interest in our own health with our health care providers, we get better care. So what I recommend to people when they start talking to me about, okay, what do you mean by this is in terms of how do you prepare for the doctor visit? So I look at the doctor visit as, you know, I try to bring it down to an analogy for people. It's like a business meeting or you have want to have some work done in your home. You're going to meet more than one person before you have that furnace replaced. You're not just going to
pick the first person you find. And so I begin to say, so there's a certain amount of preparation that needs to go into that and that we need to come to, I mean, I myself would go to the doctor and sit down and expect them to tell me what was going to happen next in the visit, which is what most of us do. And actually that is not the way to get the best possible care because the system is built for speed, not for connection. And so,
we need to prepare, know what it is we wanna cover in that visit, bring that to the table and very clearly state what it is that we want covered and then ask questions during that visit. And this doesn't mean that we're a difficult patient, it means that we're an engaged patient and most healthcare providers respond positively to that.
Host
Yeah, I think that's something that a lot of patients don't really realize is that doctors want
to be able to help you. They are crunched for time because of the economics of the healthcare system. I remember even when I was younger, about 20 years ago, I happened to go to a little bit of a higher end doctor on a fluke just cause mine wasn't available. And I was so used to the 10 minute rushed doctor's appointments that you're talking about. And this guy just booked 30 minutes for me because I was a new, and he said, can you do this with your hands? Can you say, he goes, what's your nutrition like? What's your exercise?
And I felt and I felt it's so fun. remember calling my brother who set the appointment up for me saying am I dying and like is this why you had me go and he's like what are talking about? I'm like he did this and this and this he goes that's what doctors are supposed to do and I said I have been to doctors my whole life none of them do that and he's like well that's what they're supposed to do this guy just happens to charge a little more so he can actually do his job right but you're right if you're with a doctor that doesn't have that time if you know enough about your
Joyce
Thank
Host
own health care and what's going on, you can meet them halfway, right? Is that the idea is like, okay, let's make the best out of this 10 minutes so we don't spend the first five saying, how's your wife? What's going on? They don't have the time for that.
Joyce
Yeah. So the thing is, is that I'm not saying that we're, look, our doctors, our nurse practitioners, they're our expert allies, right? They are the expert in the room, but we're the expert of ourselves. And so what I'm saying is that now when you're going for a first, like, let's say you're seeing a brand new doctor, well, you definitely are going to that doctor for a reason. And so it's important to be able to go and say, these are the, these are my concerns.
and bring that to the table because we often wait until the end of the visit when the, we've talked about this, the hand on the doorknob, and that's when we bring up the thing that's been bothering us the most. And this is what I mean by being your own advocate. You know what's important to you. Now, you may go to a visit and you may say, I'm just going for my checkup. I'm all good. Doc, take it away. That's fine too, but that's a decision.
Host
Right.
Joyce
And so that's what I'm saying is you make that decision before you go into the room and then also to ask those questions because as you said, most of the time they are rushed and they're going quickly. And so it's incumbent upon us to learn how to slow them down. And one of the ways of doing that is just by saying, could you please just repeat that for me again?
For me, if I get into that state of I feel frozen, I feel overwhelmed, my mind is racing, I'm not listening anymore, I'm seeing what's happening with myself, it's up to me to stop the doctor, the nurse practitioner in an appropriate way so that I can get back on track with what's happening in the room. Because it's what you said, they want us to have good health.
Host
Mm-hmm.
Joyce
It's not a spectator sport. We actually have to participate and be on the court because when we leave, we need to follow through on the plan. And if we don't understand the plan because we became emotional in the room because of what's being said and then don't speak up for ourselves. So, and I don't mean to say that it's all on us. I just mean to say that we can actually make it better for ourselves in a system that needs fixing a hundred percent. But what can we do in the meantime?
is where I come from.
Host
Right. And I think learning the skills, you know, using your website and the resources you put out empowers the patient where they don't feel like it's all in someone else's hands. Let's get practical for a second. What are some of the most important questions that you have discovered patients should be asking during a Rush doctor's visit?
Joyce
Well, I think one question in particular is if you were, for example, if you're in a conversation where you're being given treatment options, I think it's always important to say, because they'll often come in and say, here's what we're going to do. And because they've thought it all through, so the question you can ask is, what are my other options? If you were me, what would you do? this were your...
wife or daughter. I mean, some people don't like saying that, but I recommend saying it to just bring it to another level. What else would you recommend for me? If it's a serious situation, do you think what would you recommend a second opinion? And if so, is there someone you'd recommend that I speak to? One of the things I say to people all the time is it's part of health care. Doctors expect us to get second opinions, especially in serious situations, maybe even third opinions.
Host
Right.
Host
Mm-hmm. Sure.
Joyce
You know, it's, but we go into our human side of thinking, I don't want to offend. It's not the way they do their business, their job.
Host
Right.
Host
Also, think reframing it, if you're asking someone if you should get a second opinion, as opposed to getting a second opinion behind their back, which of the two is more offensive, right? If you're saying, should I, you're trusting them even with that is a good thing. I also, by the way, just to piggyback, if it's helpful for you, I have learned to also not just ask if it's your son or daughter, but if I was an athlete.
right? If I was a 25 year old athlete, what would, would this be what you recommend? Cause usually when they go, well, if your whole career revolves around your body working at prime performance, what would we do? And then they say, well, you could get this surgery, but the risks are, and then you, at least you see like, they weren't even thinking of that. Cause I'm in my forties or sixties or whatever. But I've, I've found that that question alone has opened some doors.
Joyce
So great question. And that's the thing, you want to open some doors in their minds so that they open up to you about some of the other things that they've thought about and not just the one thing that they've decided to present to you because there are other options. The other thing that I mention when they're putting, say, to do when they're putting you on a new medication is to ask them.
about, are you aware of all the other medications that I'm on and have you looked at it in totality? Because if you are seeing multiple doctors, they may not be aware of all the medicines that you're taking. So that's another important.
Host
Yeah, they probably aren't not they may not they probably aren't aware.
Joyce
Yeah, it's true. They probably aren't. So that's just another important question, I think, to always ask. And then the thing that I always say in a visit is, OK, now let me just take a moment and repeat that back to you and then repeat it back. Now, they'll probably interrupt you certain of the way through, but then they'll repeat what it was that they said to you so you can make sure that you got it all. Because I always say we should be taking notes in these.
Host
Yeah.
Joyce
in these meetings or asking if we can record if that's just easier for you.
Host
Yeah, sure. On the iPhone now, if you record something, it automatically transcribes it too. So you kind of get the, if they're, they're, if they will allow it. Why do you think so many of us never learned to be proficient like this? Why isn't this part of the education that we teach to our children and our society?
Joyce
it.
Yeah, it's great.
Joyce
I mean, we just, no one's ever taught us. I mean, this was the thing that I came to. I was like, why isn't this taught? And then where would it be taught? You know, I just was reading a LinkedIn post where an advocate was suggesting that when we get our driver's license, we have to take a health literacy test. And I thought, great idea, but where are we gonna go to get educated in the first place that we could pass that test? And I assumed that she was wanting to integrate it into, you know, driver's license. And I think it's a...
I think it's a great idea. At this point, I have to say that we need to, people piece it together. That's why from my platform's perspective, I thought it was so important that there just be one place that you could go because if you're a health site that's dedicated to a certain condition or a certain situation, you wanna focus on that, not just on health advocacy and they do have health advocacy aspects of it.
but it's fragmented. So I don't know what the answer is.
Host
Yeah, I think.
I think you're right. think it's there hasn't been that what I'm extracting from the way you answered it is there hasn't been a resource and there hasn't been a systematic way to do it. I think the analogy that popped into my head when you were talking about it is if someone becomes a lifeguard, they don't have to become a doctor, but they learn first aid and first aid is a very effective course where you could take it in a short amount of time and you know how to do CPR and you know, certain basic first aid things.
there should be this basic self-advocacy similar to first, you don't have to become a doctor, but at least know how to advocate for yourself. And I think your program is really trying to kind of bridge that gap. So tell us more on that note, tell us more about the healthcare powered by you program that you put together.
Joyce
Yeah, so Healthcare Powered by You is a comprehensive program that starts with mindset and it goes through what's health literacy, it talks about records and documentation and how to put together your family history, your personal health record, how to stay on top of that. And then it also goes into visit preparation and how to build your care team because a lot of people say, I don't have a team.
I was like, trust me, have a team, we all have a team. We all see multiple healthcare providers. And then you start enumerating it and they're like, you're right. I also talk about in that course, do you feel about, to clock how you feel about these various healthcare providers on your team, because that will tell you a lot about how you'll be able to advocate for yourself when you get into the room. And then we talk about treatment.
adherence. if you do have a chronic condition and you do not to stay on a treatment plan, how do you go about doing that? And of course, the financial navigation, all the things about bills and claims and insurance, and then under records and documentation, not just your history and your personal health record, but also all those important documents that we don't always like to think about.
the medical power of attorney, what do you want at your end of your life, all of these different pieces of the puzzle, HIPAA forms and all these things that when you need them, you may be incapacitated, you may not be able to actually execute them. So these are the things that we cover in the course. And of course at the end, it's okay, it's all about reflection and growth. How do you keep going? So.
It's packed and so now what we're doing is making it available in smaller bite sizes. So people come to it for different reasons. That's the one thing that when I had to hire an advocate in my life, there's specialization, which within the professional advocates. that's for a reason, because we all have different, let's say emergencies that bring us into, I need help.
Joyce
And so what we want to do with the course is offer it in such a way that you can pick what it is that you need and then come back for more if you decide like, yeah, I want to continue to build this facet of my skill set, just as a human walking on planet earth.
Host
Yeah, absolutely. It's another language to speak. It's another language you learn just like English or Spanish or anything like that. Absolutely. It seems like, correct me if I'm wrong, but your program kind of has these eight pillars. It seems like you were kind of poking through all of those. it's a very systematic way where you can say, I don't know enough about that. Let me dive into that. So it's broken down in a pretty structured.
Joyce
Exactly.
Host
format where you can really get to the answers or the information that you're looking for in a much more efficient manner. Is that right?
Joyce
Exactly, exactly. And then it's broken in each one of those modules is broken into tiny little bite sizes. So no more than like seven minutes of information with worksheets that you can work through and exercises that it takes you through. And what we're working on right now with a partner is to add an AI ally to help take you through the content.
as well so that it will take it to a next level. Yeah.
Host
I have, I've played around when there's questions about healthcare with asking, you know, some of these large language models like Chachi BT or grok or whatever Gemini. And I've even just said, Hey, I'm going to the doctor's office for this issue.
ask me questions to learn more about my issue and then tell me what I should be asking the doctor. It's amazing how efficient it can be. the idea that you're using an AI agent to integrate into this is brilliant because I think it's just going to make the outcomes even more successful.
Joyce
And it makes it easier for people to go through the content. I have taken courses myself recently where there was an AI agent as part of the AI ally as part of the plan. just made it easier. didn't have to face a blank piece of paper to ask me questions. I answered them. And it was just a whole lot easier. Yeah.
Host
Yeah.
Host
What people don't realize about AI as well. A lot of times when we talk about health literacy, the people who are hit the hardest seem to be seniors, right? Because they have the most issues with health in general. And what I have found fascinating is in my own family and in my own patients, the seniors are adopting AI because of how simple it is. They could speak it into their phone. Like you said, it's not this blank piece of paper or it's not a Google search result with 30 things where like, I don't even know what to click on.
It's so efficient in kind of replicating that human conversation component, which is what we really are missing from the doctors anyway. So, and you're one of the first people in the advocacy space that I've heard of using it or starting to use it in a meaningful way. So, know, hats off to you. I think that's great.
Joyce
Yes.
Joyce
Yeah, thanks. We're excited about it. The other thing that we are working on right now, and I'll have this out soon, it will be a free offering to help people with some of the concerns when using AI to ask health questions. And then we've created with my partner a prompt. It's a classic prompt, a foundational prompt that you can use when you're asking health care questions, because the difference between using
AI, any of these large language models, and Google is that we need to instruct it. Because it's pulling information generally from Wikipedia, which is not a verified source. That's not a verified source, folks. Important to know. And so it's important to tell it what to do. So I'm excited to be able to bring that.
Host
Yes.
Host
Mm-hmm.
Host
Hahaha
Joyce
to the market and we'll make that as a short video even to show people step by step this is how you can use this, this is how you can use the product. Exactly, tell it exactly what to do and also to limit it because otherwise it's like drinking from the fire hose. You need to say, just give me the top three things I need to know. Otherwise, you'll be reading for days. So yeah.
Host
Yeah, how to train it, essentially.
Host
Right.
Yeah, like if you tell it, you know, let's ask me 20 questions about my health. It'll ask you all at once. You actually have to say, ask me one by one, right? So that I can actually answer that. So small nuances like that. hear you. So let's talk about, you know, back in your own story. So you had this journey with your former partner. What did you experience that? What did you learn about the gap between
Joyce
Yes, exactly. Yes, exactly.
Host
knowing the system and surviving it because you had a lot of experience in the healthcare system of sorts. So where was that gap? What was the most surprising to you?
Joyce
I made too many assumptions. For example, I was having a back and forth with the surgical coordinator. I was asking and advocating for, because they send you straight home after a joint replacement surgery, but in some cases they can send you to a rehab for five days. I was advocating for the five days in the rehab and I had specific reasons for it. they, one of the things was because of the other,
the psychiatric medications that he was taking. And I said, you are aware of the medications he's taking and at what doses aren't you? Cause they were quite high. And she said, yes, of course it's all in his electronic medical record. And so I assumed that it was a doctor to doctor transmission. Now, of course this was seven, eight years ago when this, you know, electronic medical records were not just coming on the scene, but it was all new to everyone. And so I assumed that they had his exact information.
No, they had the information that they had gotten from him, which wasn't correct. It wasn't verified doctor to doctor. And I had assumed that that's the way it was done. And so when actually he was discharged from the hospital, he was discharged with his plan of the medications he should take, which included the medications he was on before the surgery, all at the wrong doses, lower doses than
Host
Wow.
Joyce
than prescribed and that he had been taking. And with these medications, you have to go through a very strict titration process to come off of them or be in a hospital situation where they actually put you on IV medication as you come off these drugs. And so when I finally got in touch with the psychiatrist while we were in the middle of these crises when he got home, I literally...
Host
Right.
Joyce
I say, could hear his eyebrows reach up into his scalp as I told him what had happened. And he said, this is what you need to do immediately, write this down. And I literally, I was on a street corner in Manhattan. I had to like scoot into a bank vestibule to, know, because it was so noisy to like write it all, you know, write it all down. And then I had a health advocate in the house with my partner and then was able to have them, you know, implement what needed to happen.
Host
You
Joyce
It's these kinds of assumptions that we make about the way the system works that can really be dangerous.
Host
Yeah, especially when it comes to medication. I mean, what a great example. The difference between 50 milligrams and 350 milligrams on some psychiatric medications is the difference between needing to be monitored 24 seven and being able to continue back at work. It's like math. I have daughters who are struggling with math and they say, you know, they get one zero and I'm like, yeah, but that makes your whole answer wrong, right? If you put the zero in the wrong place and that's what you're dealing with in the healthcare. So, so
I think that's good advice is don't assume anything, right? Double check, triple check, over communication is better than under communication when it comes to the healthcare system, especially when it's for you or a loved one. mean, one 10 second question can save a life or change the trajectory of your recovery, it sounds like.
Joyce
Exactly.
Joyce
Yes.
Joyce
Yes, absolutely can. And when I finally did have a conversation with the surgeon and we did, it got a little heated. This was sort of after the fact, it was at a follow-up appointment. But one of the things I said to him, said, didn't you see any, because there were issues in the way my husband was presenting, I would said to him, said, as a healthcare professional,
you have known this man for a number of years. Didn't you see that there was a change in his behavior that was significant enough to give you pause? And he said, he's a quirky guy. And I remember, right? I remember writing, okay, quirky is a risk factor. Quirky is a risk factor. So this is what you learn. This is what you learn.
Host
Yeah.
Yeah. You know what, it's funny because there's, I've had, I've talked with doctors off the podcast where, you know, to take that quirky thing even further, they'll have a patient who's on the spectrum. But we're learning more and more about the spectrum. And so we used to call it Asperger's, now it's even more minor. But some of these really high functioning, especially male figures who are great at business will be a little bit socially awkward. And so that quirky kind of label
It has some real repercussions with these guys because they're undiagnosed for the most part. So it's so fascinating. Now you've worked on both sides. So you've worked inside health communications and as a patient advocate. What do you think patients often misunderstand about how the healthcare system really works?
Joyce
I think the thing that we misunderstand is what we talked about earlier that so number one, I always come with the assumption that these are health care professionals, they care. They do care. But they are crunched by a system that is, you know, it's built for it's built for speed and also by an insurance structure that is that rations care.
Now don't use the ration word in the United States, but our care is rationed by insurance companies who deem what gets covered and what doesn't get covered. I think that just based on a situation that I just had helping somebody with a sister who was hospitalized, who had to be moved down to a subacute rehab facility and was told, sorry, your insurance doesn't, your insurance, these different places that we have available for you, none of them take your insurance.
So I guess what you'll have to do, this is what they said to the family, is go to a skilled nursing facility and pay out of pocket. And I said, okay, no. I said, first thing you need to do is ask them for additional advocacy and to ask those facilities if any of them will do a one-time exception, because there always are one-time exceptions that insurance companies will do in order for you to get.
certain treatment or get into another type of facility. So, and then that's what happened. Now, I'm not saying that everything's going to have a happy ending, but I think that what we don't understand is that by advocating for ourselves and pushing one more layer, then suddenly they go from having to pay out of pocket at a place where she shouldn't go, where she gets to go to the place where she supposed to go, and now it's going to be covered by the insurance. So this is the thing that I would, would
would say to people that people do care, but they're pushed by a system that doesn't care.
Host
Right. And they have a lot to get through during the day. So if the quickest answer that they know they get away with 99 % of the time is just to say sorry, you can't, then, you know, it's human nature to just want to be able to move forward with your day. And so it's not like they're...
Shouldered with the responsibility of always being right, you know, I mean everybody's human So we have to kind of take some of that into our own hands Tell us more about how people can act. mean you have so many great free resources on your website. Tell tell us You know the first of all the web address so everybody knows how to get there and where you would start
Joyce
Yeah, so the web address is www.unitedstatesofhealthcare.com. I think the first resource to start with is the checklist or the guide for your visit with your doctor or nurse practitioner. And you can get that at checklist.unitedstatesofhealthcare.com. And that is the place to start because it all starts with the visit.
It's broken into three areas, before, during, and after, and you can pick any part of the visit that you wanna work on. You don't have to do all of it, you can just do one piece of it.
Host
All right, Joyce Griggs, you're doing some amazing work. Thank you so much for putting such amazing resources out for the world at large, especially, I mean, anyone in America could just sign up and get this stuff. that's, it really is in the spirit of helping people. And I really commend you for it. Thank you so much. And thanks for being on the podcast.
Joyce
Yeah, thanks, John. It was great to be here. Really appreciate it.
