April 9, 2026: What happens when a healthcare communications professional becomes the patient no one listened to? Grace Vinton, Director of Media Relations at Supreme Communications and Host of the “HITea With Grace” podcast, joins Sarah Richardson on Flourish Soundbytes. From making the case for patients on innovation panels to arguing that caregivers deserve a seat at the governance table, Grace challenges the industry to move from treating patients as case studies to recognizing them as lived experience experts. It’s not just right, it's financially genius.

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Key Points:

• 01:21 Storytelling to Advocacy
• 06:43 Caregivers Need a Seat
• 10:19 Chief Patient Officer
• 19:35 AI Tech Stack and Wrap

This transcription is provided by artificial intelligence. We believe in technology but understand that even the smartest robots can sometimes get speech recognition wrong.

Flourish Soundbytes: From Patient to Advocate - Healthcare Needs Your Story with Grace Vinton

Sarah Richardson: I'm Sarah Richardson, a principal here at this week Health where our mission is healthcare transformation, powered by community. This is Flourish Soundbites, unfiltered Conversations with healthcare leaders. Let's get real,

Welcome back to Flourish. I am Sarah Richardson, and today's soundbite features someone whose voice, storytelling and advocacy.

I deeply admire Grace Benton. Grace is a communications professional by trade, a storyteller at heart, and a powerful patient advocate by lived experience. She's also the host of her own podcast, hi Tea with Grace, where she creates space for honest conversations about healthcare humanity. And what it really takes to be seen and heard as a patient.

Today we're talking about patient advocacy, not as a buzzword and not as a moment, but as a movement. Because while experience matters, advocacy is about power, voice, and representation. It's about who gets heard, who gets protected, and who gets a seat at the table when decisions are made.

Grace Vinton: Thank you so much for having me. I'm so thrilled to be here, Sarah, and see you again. It's always nice to see you at all these great healthcare innovation events through the years.

Sarah Richardson: It was great to see you as well, and we get to dabble in and out of each other's, uh, spaces quite often, but when we have the opportunity to really share your story more broadly because of the movement, again, that we keep seeing and hearing in healthcare. I mean, you're a PR pro by day. If you're a patient advocate by lived experience, I want our listeners to understand how storytelling has become such a powerful tool for you in healthcare advocacy.

Grace Vinton: Absolutely. Now to back. it Up a little bit. For the past 15 years, I've been working in healthcare communications with innovation companies in healthcare and helping connect them with media who are writing stories about what's going on in the space. And so I've coordinated thousands of media interviews with these amazing companies who are really changing the game and how healthcare is delivered.

And while I was able to thankfully find my answers, some people are. Stuck in this diagnostic loop for years and it is traumatizing. And the truth is companies are innovating in healthcare and in this space without really truly understanding the patient insight or experience to inform the innovations that they are developing.

and Be included in innovation and on panels talking about innovation. Why aren't patients and caregivers up there? And so I started advocating for that and saying, I'm sorry, but it's not an innovation conference about healthcare if patients and caregivers are not being included. Um, and since then, tremendous.

Change and growth has happened, and it's really become a patient empowerment movement. Not just because of myself, but because people like myself all decided to connect on social media, media, amplify our content, and really help push this movement. Forward of changing the way that the industry sees patients and caregivers in healthcare.

Sarah Richardson: Well, and your point about always having a patient on your advisory board, on your panels, in those conversations, I am still fascinated by how often I'm like, where's the patient's voice? Where's the solution in terms of how the patient is going to receive it? Asking even executives today, are you a patient of your own system and are you experiencing it? The way a patient does not because you get to go down the hall and make decisions, and I love that more and more often you're seeing the patient's voice in these conversations because that diagnostic odyssey that you talk about, [00:05:00] I'd love to have you share more about the power in that journey, even when it's long and frustrating and uncertain. What does that actually mean for the patient today and how can it empower them?

Grace Vinton: Really in that time from when the symptoms start. To eventually figuring out what is happening with the patient. There is so much that happens, and I think that healthcare likes to really think of people just as the science, right? Because it's easier. It's like, oh, this is the science of their body. This is how we have to fix it.

But really a person. A, a patient, a caregiver, they are more than just the science. They are a human being with experience. They are a system, they are part of a community of people. Right. And, and they're part of, of a, a wide variety of systems that impact their decision making, their own ability to advocate for themselves and to follow treatment plans.

They're like, they're trying to help them out and they're kind of their cheerleaders in the process. But it's not about having patient boards, it's about having patients. On your board, it's about giving them a seat at the table so that you're not only understanding patient experience, but you're understanding patient perspective to the point that it can better inform your patient experience efforts better inform the decisions that you are making at the hospital or health system that you're working at.

Grace Vinton: Absolutely. Caregivers are completely ignored. I mean, while patients are starting to be asked more often to share their stories at innovation events and in innovation processes, and even at the governmental level. Um, there are patient work groups, caregivers who are actually the ones typically advocating for the, the worst patient cases are forgotten.

And I'd like to also say too, surviving care partners, people who lose a loved one, that experience the entire patient experience all the way through and have so much to share are often forgotten. And I think it's important for us to remember that these. Caregivers care partners are lived experience experts in healthcare.

And so really seeing those folks as the leaders that they are is the change I think we need to make in healthcare. It's it's understanding. What they bring to the table and understanding what they can't bring to the table, right? They have experience in their own, you know, disease state or in their own experience or in the experience of their loved ones, but they do not have a medical degree.

And that is okay, but how are we supposed to navigate this new healthcare system where patients and caregivers are more empowered with data than ever before? If we don't know how to do that. And so there is a gap here of patient experience and patient perspective and then what's actually happening in healthcare and misinformation.

Sarah Richardson: Grace, to your point, you have a parent who has a child with a rare disease, or you have a caregiver who has been the survivor of helping their parents or their spouses or others. When the caregiver gets included in the conversation rather than as an afterthought, where is that information best aggregated for it to be a learning platform for the systems that are helping us take care of them as well.

Grace Vinton: I think it's more of a perspective shift. I think obviously it's very helpful when all of the information is aggregated in one place, but sometimes caregivers are the aggregate, right? They are the ones that hold the keys to kind of fixing healthcare. They are the advocates. They are the translators, they are the memory keepers.

Sarah Richardson: we talk a lot about the chief experience officer, so these are the roles that have come up over the years to add the hospitality lens or the patient voice lens. And yet places you're starting to also see a chief patient officer. What's the difference between the two?

Grace Vinton: Absolutely. So a chief patient's officer's role is to bring their own patient caregiver experience to the table to better help an organization. It's to call insights from patients and caregivers, a diverse subset of patients and caregivers to help support the innovation efforts. Happening at the hospital.

And, and we all do have patient. Experience, and we all do have kind of, you know, uh, challenging things that have happened in our lives that have taught us how challenging healthcare is a patient experience officer is about the experience a patient officer is about, is about really advocating for patients and caregivers perspectives.

Sarah Richardson: Should a health system have both or should they be? I, I appreciate why they're different.

Grace Vinton: Mm-hmm.

Sarah Richardson: what Synergy can be created if they are combined.

Operating officer, CEO governance board, you know, that is their role is specifically bringing that perspective to the table.

Sarah Richardson: What kind of resume would you be looking for if you were hiring patient officer in your hospital?

Grace Vinton: Absolutely. It would be someone who's had a patient and caregiver experience themselves. It would be somebody who also understands psychology and. Human decision making and can really bring together a diverse subset of patients depending on what the initiative is. Is it a population health initiative?

Are we having people from a wide variety of education levels? Um, are we including people with a wide diverse background, wide religious backgrounds? What systems are we including here to make sure every perspective it counts and is included? Um, and at the end of the day, this is not just like a feel good.

And if you're an innovation firm, you know, creating, creating these technologies built for hospitals and health systems, get that patient perspective, make sure it works for them, and that it's actually gonna work for what the real patient experience in Diagnostic Odyssey is.

Sarah Richardson: Yeah, the, the person at the center of all that is the patient, and often it, it can be an afterthought because you've challenged EHRs, you've challenged policy makers and, and their partners and vendors to put the patient at the center of the decision making process. Why and where are we still missing the mark?

Um, and we're also being asked to share experiences and panels. So I do wanna call that out. There are some good things happening here. Um, it's not totally missing the mark, but obviously always progress to be made. I would say that the biggest area where progress needs to be made is that one, they need to be paid for their time.

Um, and at the end of the day, there needs to be a role carved out for someone to make sure that patients and caregivers are being seen as the experts they are. I mean, you're paying McKinsey, you're paying Frosts and Sullivan, you're playing Gartner, all these wonderful analyst firms, which are wonderful and have their space in the world.

There should be patient representation and governance and policy. You should not be having a conversation about governance and policy in your hospital or health system without having a patient or caregiver included in that conversation. Um, they can be included in oversight of diagnostic pathways. Um, equity, um, they should be included in any escalation when patient voices are being ignored regularly in the hospital.

Um, and generally patients should just be seen as partners across clinical IT compliance, um, and within healthcare innovation companies.

Grace Vinton: Honestly, hospitals and health systems are doing this for a reason, and so are healthcare and life sciences organizations. They are realizing that they are not having to backpedal on innovation products. That they're having better patient experience scores that they're improving in pretty much every way, which is why they're making space for this to happen.

Right. You need to really start seeing patients as contributors, not just case studies, and you need to make sure they're involved in all of the governance decisions that are shaping the patient outcomes that you're hoping for. And I'll tell you, the hospitals and health systems that have done this, they have not backpedaled on this title so far.

They have continued to push it forward and see the value of including that patient perspective in the decision making process.

Sarah Richardson: I love hearing about how things are actually working. 'cause so often we're talking about this is what's not working and how we're making a difference. And this is a big. As it's continuing to get appropriate traction, what happens to patients that don't know how the system works? Like we're lucky, we know the language, the players, the navigation aspects, etcetera

How do you educate and help patients who don't know what to do when they get that diagnosis?

Deal with your brain. A brain doctor doesn't deal with your foot, A foot doctor doesn't deal with your bones. Even, you know, the rest of your bones, they just deal with your feet, right? And so there is a challenge there and there is a disconnect. And so patients have had to become the CEO of their own care, um, in this new kind of world.

And the truth is we have had to just figure it. out Right. We have to go to social media, see what other patients are doing and experiencing. Um, I can say especially in certain chronic disease, um, disease states and, in certain areas of cancer, patients are going on Facebook and they're getting information from their own, you know, specialty groups through Facebook.

Or they could ignore them. And right now it's kind of just. You know, they're doing the best they can with what they have. But I do think that we have to really empower even more patients through education on how to be the CEO of their own care in this new era.

Sarah Richardson: Yes, and we'd be remiss if we didn't ask about how AI is playing into this. And I mean, from the perspective of once upon a time, you know, doctors would say, oh, Dr. Google told me, or I, the web told me, or I had this aspect. Tell me, and now. Myself included, I have a whole project folder inside of one of my algorithms that I manage my healthcare because I, I wanted to be my thought partner on some of this.

Grace Vinton: It's been fascinating to see the rise in AI in this space. Particularly in patient empowerment, um, even from the highest levels of government, one of the leaders of the government put all of her information in chat, GBT and found information about her treatment plan that could have bettered her experience.

So it's happening. Um, and the hashtag patients use AI is. Really interesting on this front because there are people sharing their stories and using that hashtag patients use AI about how AI is helping them. Um, and very few have been sharing on that hashtag how it's hurting them. So we do know there are hallucinations with the ai.

I can say it's a good thing patients need to use ai. They need to have a tech stack. Your health hospital health system has a tech stack. You know, you as a healthcare innovation company has a tech stack patients. They have a tech stack. They have data on their wrists, they have data in their ears. They have, you know, data on their phones.

They are are CEOs of their own care creating strategies and. Trying to navigate them accordingly. And so they need a tech stack to do that, right? And so I do think that, uh, what we need to be doing more in healthcare is helping patients understand how to use that to their betterment, right? It's not enough to just give them a diagnosis and send them on their way.

There's a lot of education that has to happen about how to best use that tech stack to make them better and keep them better.

Here's my travel plans this week. are all my options? What's my workout plan? What's my food plan? What are these different things? And I'll tell you that we're what, almost the fourth month into the year, and I feel a hundred percent better than I did this time last year, because last year I did not know how to manage. Ultimate wellness while being on the road all the time and hallelujah. And everyone's like, but you're sharing all this personal information. I'm like, I am in my fifties. It is out there anyway and you know what? I wanna use it for good for myself and others versus being worried about leaving digital exhaust everywhere.

Well, there's a lot of it out there anyway. 'cause I've been using, you know, free email for, since the advent of email.

So, um, you know, especially in some of these new value-based care arrangements that folks are participating in. So, you know, I think it's, it's not being scared of the big AI word, right? Not being scared of the fact that patients are becoming more empowered than ever. It's really figuring out what your role is as a healthcare organization to make sure it's being done safely and, and in the best way possible.

Sarah Richardson: And I love the health systems that are already creating those LLM capabilities. They're, they're creating that version because then all that data is going back into the EHR, and it can be used for planning purposes. With their caregivers. And so kudos to the health systems that have said, yeah, it's gonna be a lot of work to put our own chat engine in place for people to ping it, but now they're querying us directly and we are capturing that information, uh, and it's being used for good.

Grace Vinton: Absolutely. And another thing that I'm seeing, which is really exciting, is more collaboration between health systems and life science organizations and patients and caregivers are saying, we wanna be a part of research. We wanna see clinical research as a care option for us. As we navigate these challenging diagnoses and as we're navigating what we're experiencing, and so seeing that is exciting because we're being able to participate in clinical trials from home now and just be a part of even more change, like if we're gonna be experiencing pain.

Perhaps the pain we're experiencing can lead to some level of purpose. And so that is exciting too, that hospitals and health systems are empowering patients more with their data, empowering patients more with technology, and are creating strategic collaborations with other organizations to give patients even more options on how to, um, yeah, best get treated for their conditions.

Grace Vinton: Absolutely.

Sarah Richardson: I mean, I just have to always throw

Grace Vinton: Let's go.

Sarah Richardson: First one, if every patient knew just one thing before walking into a doctor's appointment, what should it be?

Grace Vinton: You are the CEO of your own care. At the end of the day, no one is more responsible for your outcomes, for your experience than you, so you need to come to the appointment accordingly. Prepare strategic plan use ai. Use technology. Come in with questions, come in with data, get a second opinion if you need it. If you don't like what's said, you are the.

CEO Yes. What's uh, one healthcare phrase or habit you would love to politely and permanently retire?

Um, you know, let's, let's bring them into the, to the table to give that experience.

Sarah Richardson: Yeah. I'm almost like changing that too. We are, we are not all informed patients.

Grace Vinton: Exactly.

Sarah Richardson: that just gets to the point of what you've been sharing. Last one. In one word, how do you want patients to feel after they have been heard?

Grace Vinton: Empowered.

Sarah Richardson: I knew you were gonna say that. I was like, perfect. Yes.

Grace Vinton: Yeah.

Sarah Richardson: Amazing Grace. I always appreciate your insights and what you're doing for patients in our industry, it's a reminder that advocacy is not about being loud.

Grace, thank you for joining me on Flourish,

Grace Vinton: Everyone.

Sarah Richardson: and to everyone who's listening, keep flourishing.

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