Nothing About Us Without Us: How Patients Can Lead in Healthcare Innovation with Randall Rutta

Ty Hagler: Hello, Randy. And welcome.

Randy Rutta: Hi,

Ty Hagler: good to see you as well. Let's just jump into it. I know you're leading what is a hundred year old organization called the National Health Council. 

Randy Rutta: correct.

Ty Hagler: about that. what is the organization?

Randy Rutta: So I'd be happy to. You're right. The legacy organization, but with a mission that's been consistent ever since the AMA and the Nurses Association and others, we're unique. We were founded then for and are operating with patients. We're dedicated to bringing together the entire health ecosystem, always with the majority of our member organizations being patient organizations. We've got just shy of 200 national organizations that are participating in the National Health Council currently. As I say, the majority of whom are going to be patient groups that you would recognize, American Cancer Society, Heart Association, also, Lupus, Arthritis, Crohn's, Foundations, and then smaller rare disease or low incidence groups, as well as the care teams around them, physicians, nurses, pharmacists, Researchers, academics, and then a fair number of member organizations that are actually in business and industry. Because our view is that it's going to take all of us together to understand the patient experience and how to improve and build on what we currently see today for tomorrow's cures, tomorrow's ability to live independently. as I think about it, our goal is to create a, equitable and patient centered health system, and we really want to prioritize patient needs and the strength of the patient voice, really honor the lived experience.

The message is really simple for us. It's ensuring that patients are involved in decisions that affect their health in every part of the decision making process. And that engagement is respectful. it's supported in terms Patients understanding. So what's the conversation I'm having and how might I process that for myself? And then one of the things that I always share with any potential partner certainly that's true in the innovation state space It is never too early to engage patients or the patient's community. And in part, it's because many times, people who aren't patients themselves don't know what they don't know. and so they get the best benefit very early on of that patient perspective and, the family members around them. the other piece is optics. for patients, much like other parts of the community that have really had to press, the system to be heard, there's a mantra called nothing about us without us. that's something

Ty Hagler: okay.

Randy Rutta: community has It's something that the patient community has fostered, and that, that's all the more reason why you don't want to start engaging the patients or any of these stakeholder communities too far down the path, even if you want to do some good faith pre work, because to them, it's going to feel like they're an afterthought.

Or they've missed an opportunity to be at the table for the get go. But, I think we share that sensitivity, you and I, from our past conversations. And, that's really at the core of how the National Health Council views its work and tries to add value. 

Ty Hagler: Right.

and that's at least I've found in practice markedly different than maybe the practice of most innovation and healthcare, which tends to be more of a technology push.

And then at some point in time, the stakeholders get involved, but usually it's a tech first approach and we're trying to promote a empathy first approach, which I think, maybe we can then touch on, this history of this, of maybe the roles that I guess, like rather than have the patients be brought in later, but rather what roles do patients have to play with innovation and how long has this called a trend?

How long has this trend been going? Yes,

Randy Rutta: and I think we are making progress, but, the health care system, the innovation system that supports health care is complex. It's diffused. and it doesn't always align relative to why are this group of people working together for this purpose? If you're in the operating room and it's a critical care team.

That's very centered on that, to save that person's life. If it's a group of, individuals with terrific tech backgrounds, they might be brainstorming about what about this and they get very excited and take it forward. But we know as a traditionally, patients, patient advocate groups have really had to push hard to be on top of mind, to be included in those early conversations.

It hasn't become natural, I think. And that's not a criticism. And that's just. Human nature in many ways. And what we're really looking forward is for in the health innovation space. in the past, maybe it was a more limited role, it was checking in after the fact. It might have really only come to bear when a particular innovation was moving down the path of FDA approval.

And so there's a expectation on the part of FDA to include patients, and at that point, it oftentimes feels like a scramble. that's a point at which you might find criticism from a patient saying just now you're asking my opinion when you need to check a box. So I think that's part of what our experience has been. But the patient community, that experience is really leaning in. To be at the table, to be present, to be a good faith contributor to understanding a challenge and then saying, how might, brilliant minds try to help fix that challenge. we have seen that shift, both for patients and advocates really, being valued in this conversation with innovators and others. the currency that they're bringing to the table is both their lived experience, how is it that this intervention will help me lead a more healthy and engaged life. And that's why it's so important to ask the patient because sometimes, someone who's not the patient says, of course they want this goal.

They want to achieve this. And patients, oftentimes, it's oftentimes accurate. But then oftentimes they'll say, I just want to sleep through the night. I just don't want to have to go to the bathroom so many times that it might be, I don't want to have a device or an intervention that is uncomfortable to wear or, those kinds of things.

So it's just simple. It's just asking, as you said, starting from a point of empathy and just asking the question, would you describe your life today? What might be better if we could address those issues and then start that learning journey together? more and more companies, more and more, startup innovators are becoming sensitized to that. so the role we need to play as the National Health Council and our members. Is make sure that we're beating that drum. We're trying to create that, level of understanding and interest. And then try to make it as easy as possible for those individuals, those teams of innovators, to then say, if I'm gonna do that, what does that mean and how do I find patients?

and it might not be, it might be patients alongside their clinicians. The other, the only other thing I would mention, Ty, is, the way the healthcare system is set up sometimes from an innovator perspective. You clearly, have an idea about what could be valuable to bring forward, but oftentimes it's the way in which healthcare in this country is paid for that then starts to influence who the, who the end user might be.

Everyone agrees it's the patient, but not every instance do you have the patient as the purchaser. I think innovators at a certain point of time go from being excited about the technology and their ideas. To then starting to say, we're going to have to make this real, who do we need to start talking to? Those are different conversations, but I say you will always be more effective in those conversations if you have a patient at your side and you say patients have been with us all along. That represents X number of hundreds of thousands of individuals whose lives are stuck. You can make an argument, but have that really literally backed up side by someone who is living that reality.

Ty Hagler: absolutely. if you can show impact, if you can show changed outcomes and if you've got a patient who is, dramatically preferring a solution you've come up with, one case in point is our work with couple of care, which is a postnatal infant bassinet. And designed from the grounds up with moms in mind, which, all the other hospital bassinets are truly designed for, nurse or pediatrician to stand over the infant and, for moms, it's an incredibly painful experience.

And so having that as our North star there from a patient first approach, really has driven a lot of the design details and really produced a North star there, with extensive feedback and research from moms as well as nurses. yeah, absolutely.

Randy Rutta: that's such a perfect example of, and you can just see it in your mind. And I've had the opportunity to see some of the videos and see. information that you've built around that particular innovation. And it's just brilliant and it's brilliant in its simplicity.

but the impact, what it meant for the nursing teams, not being in and out of the room, every few minutes, what it meant for the mom, like you say, painful as they're recovering from, delivery process and trying to then hold and bond with their babies.

It's great for the babies. That is an example. That's so clear on, let's

start with observing. Okay. Just what the experience is of these new moms, their babies, and the staff around them. And just, bringing an idea like that, that probably, to me, it's Oh, that's such a simple solution. But then, we want those moms, through organizations like ours, who, that's, they're representing a maternal and child health perspective.

They're working with, OBGYN and, pediatrics. we want to be able to tell that story to, the health administrators that may be the ones making the decision as to, so is this a piece of equipment that we want to bring into our setting of care and, how has that then become part of our offerings?

How do we pay for that? So that's, we're having that patient fully aligned to say, however you figure that part out, know that this is a big deal to us. it will lead to healthier outcomes, fewer readmissions, all the kinds of things that could follow, when it's not an optimal approach.

So I applaud you guys for that, innovation. 

Ty Hagler: com and there was one more and there was one more you mentioned.

Randy Rutta: I actually, right before, com, it was the, CHI summit, the Coalition for Health AI

Ty Hagler: Okay.

Randy Rutta: summit. They do that every, a couple of times every year and they're at a critical point in their decision making. And then others, I think to your point, Ty, there's been more and more interest the Peterson Health Technology Institute has convened, a wonderful group of collaborators that include people who are academic experts in how do you measure value to clinicians, to everyone, including patients. And so there is a sense of momentum in this space, but having the innovators themselves, the people with that one or two good ideas that want to bring that forward is where it starts. And it's been great. It's been great.

Ty Hagler: and maybe Chai would be a good example. AI has, is having a indelible impact on healthcare. How do you see, maybe patient centered innovators. Like with say AI solutions, for example, how are you seeing that interface starting to emerge, or it doesn't have to be AI as the technology du jour, but how do you see that, that playing out now?

Yep.

Randy Rutta: the parts are moving right now. We're all trying to figure out. how do we create, a system, call it, a shared understanding, call it guardrails, it's depends on your perspective, but how do we create a shared sense of understanding that then is reflected in the business practices of both the innovation sector, the approval processes and others that the FDA is going to honor. how is that then reflected in that handoff to, codes and coverage that then allow those devices to be actually available to patients? And as an aside, that's a serious concern for us right now. when you ask any of our patient organization members with all the complexity that might exist in the healthcare community, all the wants that we might bring to the table with our wishlist, access remains the number one. because patients just aren't able to benefit fast enough, consistently enough, enough, maybe flex how it is. They're being treated for their particular disease, because of the way the system is designed. Right now, the average device, after approval at the FDA is still seven years away from being authorized, as and that's just a midpoint, right?

authorized to actually be available then to patients. in the National Health Council and its membership, have been and are going to step up our advocacy for trying to help those two parts of our healthcare ecosystem come together a little closer. And we're not just, we're interested in and focusing on interacting with our colleagues at CMS who are overseeing Medicare and Medicaid, but we're very much, concert with and speaking with the, employers and the healthcare purchasers, it's still just shy of 70 percent of people have their health coverage in the private sector through their employer. And employers are investing in a healthy workforce, both for the people that report to work and then their dependents. And seen their costs go up, but they're not necessarily hearing back from, their employees that they've had a great healthcare experience or they're not necessarily even understanding how to measure that value. That's a place for us to just have that conversation. And I think when it comes to the technology sector, when it comes to the various ways in which these interventions can help support someone, and as might be implantable, it might be a wearable, it might be, of technology itself. It might be a diagnostic device or a medicine, administration device or a monitoring device. It's such a broad range of innovation that's occurring. we want to be a part of that conversation to say, involve patients in all those decisions and then create a pathway in concert with their clinicians and other decision makers. to make that innovation as accessible as possible to those patients so they can start to benefit. And I have to think that the people that you're close to, who bring those good ideas forward, that's ultimately what is driving them as well.

Ty Hagler: Yeah.

Randy Rutta: soon can we refine something to see it make a difference in someone's life?

Like a mom who can actually pick her baby up herself, and have that baby right there with her.

Ty Hagler: Yeah. you think about the potential impact of some of these transformative technologies can have, and it can be frustrating. you miss those opportunities to change an outcome for a patient in a specific situation because it takes so long to have that. 

frustration, right?

And, I think there's, some mechanism. That's right. Yeah. If you can figure out a better mouth trap to bring this to market. Then I think that starts to short circuit some of these

impediments that are in place. But one of the

Randy Rutta: I was

Ty Hagler: get well,

Randy Rutta: at a critical point right now, coalition was founded, well before COVID. They've been really anticipating the, the value of being able to move forward together with all the different stakeholders around AI and how it's. It's used in all parts of health care. They basically set some goals for that anything that emerges in health care be trustworthy, be responsible, and ultimately deliver a health benefit to patients. It sounds like a no brainer. Where you see the different systems being applied, it might be. more in the administrative side, how do we make scheduling more efficient, how do we provide more information to patients through chatbots and other kind of means. One of the biggest innovations that's emerging right now are the ambient listening systems that, doctors in their doctor's offices and exam rooms can use so that, the, AI based tool is basically taking notes for the physician. They can look up from their iPad. and have eye contact with their patients and that means everything.

We did a research study about shared decision making for patients and guess what? It came back saying the number one thing is having a relationship with my clinician. That's going to help me feel Calm, it's, and comfortable and being able to contribute and you get better health outcomes as a result.

so, what Chai is doing is looking to say, so how do we create expectations for how these algorithms and the models that they're embedded in come forward? So they have a whole series of work streams that are bringing together technical people, all the different stakeholders, including patients. it's in the early stages, so really just assessing generative AI, predictive AI, just are launching the direct to consumer, work stream where that's, of course, a big stake spot for us to be able to have a recommendation for a certification process for assurance labs that give the innovators. a clear sense of, here's what the expectations are going to be that are going to serve you well over the life cycle of what you're hoping to, create. And and it'll do so with the different stakeholders feeling I've got input, I'm weighing in at the right time. they're going to have work streams that look at clinical decision making. Public health applications, applications in insurance and in the workplace. And in each of those places, I'm ringing that single bell. Be sure to include patients and include them early. that's my mantra and there's a receptivity to that. 

Ty Hagler: and you've touched on this once or twice, but I'm curious, like maybe for what's the most effective way for, an entrepreneurial, health innovator, let's say,

Randy Rutta: hmm. 

Ty Hagler: or finding kind of the right, mix of patients to, engage with early, and I guess maybe, how might we figure out how to access those people?

Randy Rutta: part of the role of the National Health Council is to be that bridge, to be that connector. So I think it'll depend on, the idea that someone that a person might have who wants to bring something forward, is it anchored in a technology and then they need to just see, where might this fit, with different patients that might have a different kinds of disease experiences. Or if they already know, and that oftentimes comes from either knowledge they've gained, maybe it's a family member, maybe it's themselves that have been affected by a particular condition, then, what we would look for is, are you working with those patient groups that represent the patients in that space? And then we're trying to help those patient organizations to have an understanding about how they might successfully interact. Ty, I think you're aware, many of our patient organizations are actually pretty far down the path of being receptive to working with individuals, and it might be individuals who are in more established, tech innovation spaces, or someone who's just coming out of their garage

Ty Hagler: Yep.

Randy Rutta: I've been working on this.

And then we say, okay, some of the things you're going to want to add to your, description around evidence and all those things. But, I would say, about what it, what is your idea and where will it intersect with the patient community and then how can you connect with that patient community to test your hypothesis to get, feedback.

So the National Health Council, great place to connect. we do these, monthly meetings on the AI space on, on AI. as we're, talking to your organization and others like your organization to be more visible and accessible. but we welcome a call from anyone at any stage and then we will start to, to match that individual to the organization. At the same time, we're building some kind of system structures that help then our patient organizations have these conversations. from each other, be more ready. what are the 10 tips for welcoming an innovator into, to lunch and exploring it. We're really trying to make it easy and then have, the sequence of sophistication or complexity laid out so that people understand what that is.

And why,

Ty Hagler: Right.

Randy Rutta: why, would I invest this energy at this point in time? And for startups, for innovators, they have so much ahead of them. So maybe it's a lighter touch. Just understanding that it is important, but then as they start to move toward things that are particularly more in the regulatory environment or even in the investment environment, talking to investors about it, that's where then the engagement becomes maybe a little higher level, a little more sophisticated, but we're trying to build the body of evidence, the best practices, peer to peer supports and are, in the early stages, but, we have enough to be able to help anyone who's ready to start that journey.

Ty Hagler: Yeah, and I've already just appreciated your willingness to do that with, as you mentioned, a, new technology coming out of the garage that would be transformative and making the right connections to figure out how to bridge the gap with a special situation. I think that would be a big one.

So helpful. And I think you touched on something I think is really important is to do expectation management with just because you have an idea that seven year road map to actually get it to market is something you don't want to build up. I guess the, the expectation this is going to show up and be available for your reimbursement codes tomorrow that there's a path to

Randy Rutta: there absolutely is. So I think if the National Health Council, I would invite any, anyone who's experiencing this podcast to go to our website, take a look at the resources that are there. We will be increasingly tailoring those for this specific audience. So right now they're going to have to say, okay, I see these, ways in which patients can be engaged and how that's measured.

And if we say we're using the National Health Council's Fair Market Value Calculator to compensate those patients for input, that's going to be good. They're probably going to have a conversation either with us or with a patient organization that's based to say, so help me build a, tailored customized plan, a bespoke plan for how

Ty Hagler: that.

Randy Rutta: take my piece forward.

But you know what? not overly complex. They're already doing the hard work in the science, in the materials, in, back, maybe it's AI or the other tech that might be involved in this space, the interfaces and the platforms. That is knowledge that the patient community rarely has.

Some of our larger organizations, we have across our membership, chief science officers, chief medical officers, research leaders, it's a pretty sophisticated bunch. Hopefully we can connect you with those. but what we'll certainly lead with is the piece that we know best. And we'll do that by introducing you to the patients that ultimately is the motivation for being in the space.

Ty Hagler: Yeah. And I definitely appreciate just to touch on that, the fair market value calculator, because like I, I would hate for patients to feel like they had a seat at the table and didn't get, a fair representation too, with some of the compensation you can earn from participating in these studies as well.

Randy Rutta: So we've developed a system, it's been in place for several years now. It's the industry standard that's being used to call that I just got off of is talking about that same tool in Europe and how we try to customize that to different currencies and countries. But at the end of the day, it's just.

there's a lot of things that you need to do. I think the first thing is to be ready to support them in that engagement. And it depends on what that is. If it's an early stage focus group, or some initial testing is to, one choice versus another, then, that's gonna be a lighter touch, but you think about the patient. So they're giving up time oftentimes from their job or their families. that time should be worth something. They may have costs incurred to travel to where you want them to be, those things. So the Fair Market Value Calculator just captures those costs and lays out a way in which you can approach that.

We certainly want to have, patients compensated consistent with these, standards. We just updated them for, the current economy this summer. but the first step is just to. Just being respectful and communicating the patient that we value you. We understand that your expertise has value in and of itself and we want to put something in place.

So that actually might be something that's started on a smaller scale and builds up, but it'll say so much to the patient that one, sought them out and two, you understand that they're going to be giving up some things in order to be there for you. Clinical trials is different. That's a much more, and involves oftentimes lengthy process.

there's also a system that you assess compensation in that space. We're actually just working with FDA and others to say, how might we develop a fair market value calculator? Support system for those companies that are in that journey because there are a lot of rules and around how it is. You can compensate patients.

So we want to bring those together and again, make it easy for innovators to bring their, good thinking forward.

Ty Hagler: Yeah, absolutely. you want to put together a solid research plan that gets IRB review and also you're like making sure you're taking care of everybody respectfully who is participating in some of the early stage research that you're doing.

Randy Rutta: Exactly. we just had just yesterday had a conversation with, whose colleague I met when I was at the, med tech conference and it was like at a reception. They said, love to follow up. here's a man who's an engineer by training. Very knowledgeable. Who has a daughter with some pretty significant disabilities and as caregivers, he and his family are trying to just understand what's her experience.

How do they she's nonverbal? So trying. So he's come up with some kind of monitoring, a monitoring platform that could really help. and other caregivers have insights into how she's doing and how might we know, how might we learn from her experience yesterday to improve her experience tomorrow.

Very good faith, very early on. So what he brought to the table was the understanding that, We could do better. We could do better in supporting these families and caregivers and the patients themselves. and so we had a conversation about, let's talk about IRB. Let's talk about how you might, engage patients and reflect that and maybe a publication that then is visible to potential investors or others with a similar idea.

I just, I tell you, come off of a call like that. And I know you're smiling because you have calls like that all the time and you just feel good

about, people wanting to help other people.

Ty Hagler: yeah, absolutely. Or just like when you see some of the people that participate in the study, then benefit from it. I had the wonderful experience of meeting one of the kids that was in the bassinet during an early study,

Randy Rutta: sure.

Ty Hagler: standing around a soccer game and Oh, hey, you were part of this.

So it's neat to have those experiences, right?

Randy Rutta: wonderful.

Ty Hagler: Yeah. maybe looking ahead towards the future. Randy, how do you envision the National Health Council's role and kind of shaping the landscape to make sure that the innovation benefits all of the patients? Thanks.

Randy Rutta: our role obviously is to try to marshal the resources within the patient and community itself and try to create those, describe those pathways to make it easier than to, to all work together to a better result. The end of the day, what patients are looking for, and when I say patients, this is about 160 or more million Americans who have significant chronic conditions, multiple conditions, who are in the healthcare system all the time.

Ty Hagler: Ahem.

Randy Rutta: as opposed to maybe someone who's a health care consumer, who's in and out of, the health care system, everybody would benefit from the kind of support that I think the innovation community can bring forward, but we're really looking at those people for whom there's a significant investment in their time and energy, their own health, and then the resources around them.

So we will always try to, get to a point where whatever can be helpful to patients, we would like to see that proven to be safe and effective, have a channel for access. And then have patients have access to that support. asked me earlier about, the, MedTech conference. I was blown away by the number of participants there. From the innovation community being startups and individuals who just had a passion all the way through the major medical device and technology companies that whose names we would recognize every single one talked about the value of engaging patients, how to stories about how they do it, what models they have. So when you say, what's our role? once being a part of that conversation, bringing back to the patient community, lessons learned. So no one's in, the wheel and then help those companies. So right now I'm literally going through a process of following up with each of those companies to say, so how are you engaging patients?

How might we leverage some tools? How might we leverage our relationship with these patient organizations? Formal and informal to say, let's make an introduction so that we, so we are part of the solution and certainly either not intentionally or unintentionally just left on the sidelines when there could be real value brought forward at the same time doing that in as a source of information and influence. the regulators and to others that are setting the requirements as to what companies, have to meet either on the early stage, or at the latter stage when they're actually ready to go to market. And so we're really trying to bring that same level of patient expertise investment meaning passion to see this go forward, to all of those settings.

So that in concert. We can go forward together. The time has never been better, and I've been doing this for a long time, and this is a now conversation that everybody seems motivated to, go forward together.

Ty Hagler: That's incredible. No, it's like the excitement's kind of palpable right now is so you're seeing this phase shift that's happening.

Randy Rutta: Yeah, it is.

Ty Hagler: so just maybe like step back on reflective, nature. what are some books that you've read recently you might recommend? 

Randy Rutta: I actually, have some notes here because I've had some, really great engagement with authors. as I mentioned, we have a monthly meeting. It's around AI. And so that's the area of focus for their work to really help our patient community better understand what is what does AI mean? really? It's been here since 1956. Oh, that's amazing. Really? 1970s. We've seen it enter into the health care system. So part of it's just helping our patient community socialize and become aware of where I already is.

And then exciting journey that generative AI is starting to set in motion.

So I'll just share with you. So we've had speakers come in and help us. person is Damon Davis, who is just a real thought leader in this space. And, as you might imagine, in any consideration we have around the, AI community, really about bringing any technology, any treatment forward, we're very concerned about equity. in different ways. So right now, our system of managing healthcare to make sure people have access to the care that they need, that reflects who they are, is incomplete, let's say, or inconsistent. If you're a person in a marginalized or minority community. If you're, challenged socioeconomically, if you live in very rural areas. You are struggling to have access both on the innovation side and then actually to the results of that. you're also not very visible within the health data set. as we see algorithms pull from a data set to try to help a clinician make a better decision, the room. If it's only pulling data from one very small, Set of the population, which is the case now, and you're

not population, you run the risk of missing out or actually having bad advice come forward.

So we're really everything that we're talking about here. Tie. would have infused in it attention to representativeness, attention to, diversity. And of course, the FDA has got guidance, that's, in the final stages of review that will require that company bringing something through the approval process demonstrates that, the clinical trial process is diverse relative to the patients that are engaged there.

So we're

working to help them, the skills and the populations to contribute to reaching those goals, even while we're trying to help, the innovation community understand what that might look like and how serious some of those gaps clearly are. So Damon's book is called Algorithmic Inequality,

Removing Biases. And improving data for AI and healthcare. So he is all about helping us understand the pros and cons of AI being used in healthcare generally including in, devices. the FDA has approved more than a thousand, devices that are using AI. He really speaks to how, we should pay attention. To this issue of, just how, the current data set is, or even our, it's not a natural thing for, clinicians, researchers, others to necessarily reach beyond those that they're familiar working with. so one, one conversation that's come up in AI is that idea about being local. And, I know we're interested in kind of national standards or a framework to understand what would, best practice look like, but in any given instance, any use case, it'll have to be local because populations people look different in different places.

They bring different kinds of challenges forward. And so those are the things we're trying to navigate. So I would say, Okay. Davis's book, definitely a read. He really

Ty Hagler: I will check it out.

Randy Rutta: that supports the thinking that we're talking about here. another one that we've really, seen as part of our education process for the patient groups is called Searching for Health. And

Ty Hagler: Oh, okay.

Randy Rutta: Parakh. And he's really, he really has looked at, so where is there reliable information? So he's really looked at this concept of misinformation, gaps in information, what's available online, one of the, so that's one of the things we're looking at, because one of the challenges we have, and I know your innovation community faces, this is so much data that might be helpful to them.

That's the data that they themselves aren't having to generate, but the data that would concern the population or the disease or whatever else. Yeah. It's siloed within academic research institutions, medical centers, and other data processing platforms, payors will all silo that information, protected very carefully, different motivations.

It might be patient safety and privacy security, HIPAA. Concerns. it also

Ty Hagler: Issue. 

Randy Rutta: exactly. Or it might mean that they're, they want to monetize that data in some way. so it's gee, that's I respect that. But where can we find some middle ground? to make that data more available.

So Kapil really, Dr. Prock really identifies that. The last one is a book by Dr. Gita Nair and it's called Dead Wrong, Diagnosing and Treating Healthcare's Misinformation Illness. And she digs a little bit deeper, from the perspective of a clinician and someone who saw her mom really suffer the consequences of the system not being able to get to a diagnosis.

That's it. And at a certain point, she literally got all the paper records from every visit her mom had ever had, laid them out on the living room floor, and finally started to see where that diagnosis might sit. So she's done a really good job in this book, Dead Wrong, for really understanding what the electronic health record or the data record currently does or does not do for you, particularly when the patient's trying to do the right thing and goes to the internet.

To supplement that information. So those three resources, I think, could be pretty interesting to, the people, that you speak with. Absolutely,

Ty Hagler: Those were some thoughtful book titles. Yeah Just as you were talking about AI topics. The one I've read recently is called human centered artificial intelligence by Dr Ben Schneiderman, and he laid out this framework a while ago, but it was really looking at how do you make sure that what is it?

humans in the loop is the core mantra there of making sure that you're not just building something that just builds separate from the humans, but rather something that enables human activity. So really good books and really helpful frameworks in there.

Randy Rutta: I think that, I'm putting that on my list, actually, because that's a, that's such an important topic in really

because from the patient's perspective, it is a human interface. They're dealing with their clinicians, they're, with the nurse or other practitioners around those individuals seeking out that information, and, more and more of that information may become automated, point, do you, you assess what, how much is. augmenting the human in the loop, the doctor and making his decision or her decision and then how much it, how much of it could be automatic where we would trust the chat bot to, bring the information forward. But I think right now, because these systems are only as good as the data that they're trained on and the experience that they've had, need to stay close

and learn from that.

And I think for your innovators, they are doing breakthrough. That's coming forward. I think the imaging area, 

Ty Hagler: yeah.

Randy Rutta: to read retinal scans, really read scans generally is, almost like it would have been science fiction a few years ago. so that's an area where more and more of the. The, finding is going to really be automated because the systems have gotten to be so good and so smart. But I think our, in our work with the specialty societies and our work with patients, they still want to know that, in that case, a radiologist or another, individual is going to have the benefit of the recommendation. From, an AI driven system, but then also brings their years of knowledge and maybe their ability to know that patient, forward before a final intervention goes forward.

Ty Hagler: Yeah, absolutely. You'd want to keep that human in the loop as the last call don't have that accidental, like just full control released up.

Randy Rutta: And,

to be honest, because some of your innovators may be looking at systems innovations. what we've been talking about here are more like treatment innovations, but it might be about, how do you schedule nurses more efficiently? I think that's I'm sure that conversation occurred after the bassinet. brought in because it probably changed the availability of these nurses to do other kinds of care, because the mom and the baby were together, I think. so even in those places where you find that we're looking at technology advancements that strengthens systems. Scheduling, data delivery to, to the patient, interactions with the patient. Those kinds of things. You're still going to want to have that patient consulted early on. there was a group that was meeting and they were really looking at systems that would help insurance companies process claims. And they were like, they really don't, really need to have a patient weigh in on that and we're like, we do because there's probably a few things through decisions that are more important to those patients than, is my procedure, my medicine, covered or not covered. And, and so we having a patient in the loop, help ensure that even those automated systems take into account and are smart relative to what that patient experience ultimately should be.

Ty Hagler: yeah. And that's, a whole other ball of wax to dive into with service blueprinting and how you manage complexity and some of the mix of systems thinking. design thinking and how those two different domains interface to make smart changes in a complex environment where there's unintended consequences of making a change, we wanted to make sure that each stakeholder in the entire service blueprint is, is thoughtfully considered as you start working through changes in that space.

Yeah. Yeah. Randy, really appreciate the conversation today. what, how would you recommend medical innovators get involved with the national house health council?

Randy Rutta: I do recommend that they do that. and I think the easiest thing would be to maybe, check out our website, see if there's some aspects of what we're doing, would be of interest to them and just literally send us an email, contact us. we're building out these resources that are online.

Some are really focused on our membership, in our interactive digital platforms that are really allowing for a lot of information exchange. But then that's expressed, website or through other programs or tools that are there for anyone to use. In many instances, they would probably be, most by getting a combination of ideas or resources we have and then speak to that patient organization that's closest to us. to where they see their innovation making a difference. And so we would help facilitate that matching, process. I think our events, one, one really important meeting that we have that's open to, anyone who has an interest is our Science of Patient Engagement Symposium. That is, many of our meetings are for membership.

This is one that's open to anyone in this kind of science community. And I think the, and that's held in, the spring, in May in Washington DC. And we're just now finalizing that preliminary program. We are going to focus on the science of patient engagement as it relates to the innovation sector. it would be amazing to start to engage with your listenership. That can, start to help us populate, maybe even some of the programs that we bring forward by next spring, and then certainly anything that could be helpful, before that.

Ty Hagler: Oh, very cool. So I'll make sure we post a link to that event and the show notes. And then, if anybody has any suggestions for that event, like we'll certainly, find a way to help them reach out and get connected.

Randy Rutta: That would be terrific, because there is, an enthusiasm here right now among our patient community and, certainly among, the, patients themselves to really engage differently. And we're in a very fluid environment in terms of how is government organized? how are these systems organized?

There's a lot of change within. The health insurance and the settings of care, environment, dealing with the pressures that they deal with. But through that, we need to make sure that the kind of great ideas and the innovations that you're. community is ready to surface or ready to take forward, the full support of the patient community.

And I would just say, I can't say it enough, involve patients early and see them holistically. First and foremost, it's going to be about how can they work together to address the healthcare need. But then the extent to which other parts of the system need to be influenced, consider that patient, a highly invested partner. In speaking to the, investment community and speaking to the research community and helping be an advocate with a medical center or another potential site of a clinical trial, assure whoever that decision maker that patients are really aligned with this, these innovators taking these ideas forward and then we'll continue to do the same when it gets to the payment setting. Or the ways in which, these, are both regulated the startup side, approval, and then access to market.

Ty Hagler: Wonderful. Yeah. So thank you for that, Randy. yeah, just one quick comment, then we'll close out, which was,

Randy Rutta: Sure.

Ty Hagler: with all the change, I think we're about to see, you wouldn't be good innovators if you couldn't adapt to change.

Randy Rutta: I would say, I appreciate that. I think you're exactly right. And we will be learning from you. And that's what this is such a learning journey. and we're better doing it together.

Ty Hagler: Absolutely.

Randy Rutta: tell you, the more engagement we have, and it might be through an accelerator program, shark tank kind of situation.

presentation or workshop that brings together patients and innovators that is going to raise the level of awareness and knowledge that will only create, a greater sense of, what's possible.

Ty Hagler: Very good. yeah, certainly looking forward to that and having these, learning, adventures together. So

Randy Rutta: absolutely.

Ty Hagler: very good. All right. Thanks so much for joining us, Randy.

Randy Rutta: Thank you so much for having me. Take care.

Ty Hagler: You too.