Leadership & Career · Episode
Dr. Daniel Fox — Research Deserts & Building CRPN to Fix Clinical Trial Access
In this episode of the Pharma Prescribed Podcast, host Adam Walker sits down with Dr. Daniel Fox, CEO of CRPN Central, for a deeply personal and professional exploration of the flaws within the clinical trial ecosystem. Dr. Fox shares the heart-wrenching story of his daughter Violet’s battle with a rare disease, a journey that illuminated the devastating reality of 'research deserts'—geographic areas where life-saving treatments exist but remain inaccessible to those who need them most. This experience transformed Dr. Fox’s career, shifting his focus from high-level industry operations to a mission of radical accessibility. The conversation moves beyond the technicalities of protocols to address the fundamental disconnect between the multi-billion dollar research industry and the multi-trillion dollar healthcare sector. Dr. Fox explains why decentralized clinical trials (DCTs) often fail at the local level due to antiquated payment structures and siloed negotiations. He introduces the work of the Clinical Research Payment Network (CRPN), a platform designed to bridge the financial gap so that local physicians can integrate research into standard patient care. Listeners will gain a raw, unvarnished look at why the industry must evolve to prioritize patient access over geographic convenience and how restoring trust starts with meeting patients where they are. This is a must-listen for anyone invested in the future of inclusive, transparent, and efficient clinical strategy.
Chapters
Approximate · derived from transcript
- 0:00Podcast intro and guest
- 2:26Mission to expand access
- 4:53Why trials exclude patients
- 7:20Violet diagnosis and reality
- 9:46Loss and turning point
- 12:13Building CRPN bridge
- 14:40Grief and perseverance
- 17:06CRPN model and negotiations
- 19:33Insurance First Healthcare
- 22:00In Network Trial Model
- 24:26Claims Style Payments
- 26:53Violet Mission Autism
- 29:20Trial Card For Patients
- 31:46Autism Strengths Projects
- 34:13Rising Autism Rates
- 36:40Rare Disease Economics
- 39:06Plan B For Sites
- 41:33Quick Fire Questions
- 44:00Closing And Contact
Key insights
Location Is a Barrier to Care
Research is often restricted to geographic 'pinpoint locations' near academic centers, creating vast research deserts for patients who cannot travel.
Payment Systems Are the Real Bottleneck
While the industry focuses on operations and regulation for decentralized trials, the primary hurdle is a financial disconnect where research dollars fail to speak the language of healthcare reimbursement.
Inefficient Negotiations Cost Lives
The traditional siloed approach of negotiating individual contracts for every single trial creates unnecessary delays that prevent life-saving drugs from reaching the market faster.
Leveraging Healthcare for Research Scalability
By utilizing existing healthcare infrastructure and local doctor-patient relationships, the industry can reach diverse populations without forcing patients to leave their trusted care providers.
Full transcript
Edited for readability. Speaker labels preserved. Click to collapse.Click to expand.
Full transcript
Edited for readability. Speaker labels preserved. Click to collapse.Click to expand.
Podcast intro and guest
Adam Walker:I am Adam Walker, a biometrics consultant, and this is the Pharma Prescribed Podcast where leaders, innovators, and hidden voices in healthcare open up, no sound bites, no spin, just raw insight, one prescription at a time. In an industry driven by data protocols and pressure, we rarely pause to ask the human questions.
Adam Walker:What drives us, what breaks us, and what truths live behind the titles we wear? Dr. Daniel Fox is the CEO of CRPN Central, and a leader in redefining clinical research through decentralized patient first platforms. With a background in medicine policy and digital innovation, Dr. Fox is building scalable ecosystems that restore trust and transparency in trials.
Adam Walker:His work bridges the technical and the human empowering communities to take part in research that reflects their needs and their values. RPNs network spans thousands of professionals and its mission is clear. Restore trust, streamline operations, and make trials truly inclusive. From platform designed to public health advocacy, Dr.
Adam Walker:Fox brings clarity to complexity and compassion to clinical strategy. Daniel, welcome to Pharma Prescribed Today. How are you?
Dr Daniel Fox:Welcome, Adam. Thank you so much. I think I learned something about myself in that introduction. That was great. Thank
Adam Walker:you. Uh, it's, it's great to welcome you today. It's been a little while since we last spoke.
Mission to expand access
Adam Walker:And for our audience who aren't familiar with you, what is the mission you've been on and how have you been going about that? Wow,
Dr Daniel Fox:that's a very good question, Adam. And if you had asked me that last time we talked, I think it would've been a much different answer. My mission has never changed. The mission is to ensure that everyone who needs clinical trials to live, to survive, to extend their life into a good level of quality has access to it.
Dr Daniel Fox:Because let's face it, there are thousands, millions of people out there right now who are suffering. That's why we're doing trials in the first place. Who could be qualified for clinical trials? Are denied. Likely because of where they're located. They may not be next to the local academic university who has the trial with a physician who just so happens to be a specialist who became the pi.
Dr Daniel Fox:They may be thousands of miles away with a rare disease where the only hope of surviving is on the other side of the world, whatever it might be. We are in 2025, almost 2026. And for some reason people are still dying because they can't access trials and that's just unacceptable.
Adam Walker:Gosh, you started with a high bar there, Daniel.
Adam Walker:I'm wondering how best to unpick that from the point of access from the patient as much as interacting with pharma companies and those life-changing drugs and procedures that can be put at the foot of patients. How have you started that conversation?
Why trials exclude patients
Adam Walker:So let's,
Dr Daniel Fox:let's first start with the drive. Pharma has a problem to solve, that's why they're developing a drug.
Dr Daniel Fox:So they must have looked into the populations and identified populations of people who are suffering or dying from certain diseases. Then they go through, they do a massive years and years of research trying to figure out a drug that they could develop to help this indication. Sometimes they'll develop a drug and then identify the indications later when multiple indications can be affected.
Dr Daniel Fox:So now we have this trial and we have to go through the regulation grind. So traditionally, what do we do? We have to go have a trial, get it approved by an IRB. We have to try to find clinician or clinical professionals. Who will serve as specialists that are unbiased to collect data on patients so that we can have the data for efficacy and safety in a clinical trial.
Dr Daniel Fox:Traditionally, it is, well, we need to find this specialist at a pinpoint solution, a pinpoint location. Which whenever you have a pinpoint location, you have a geographic limitation. It's gonna be whoever can travel to that one pinpoint location. So if you're not within the range of that pinpoint location and you have the disease that that trial could help, you're outta luck.
Dr Daniel Fox:And unfortunately that's probably my why is I was one of those fathers who had a daughter that was out a law. I had a daughter with a rare disease. I'm in the middle of a, what I call a research desert. In other words, there's no hope for care anywhere unless I travel 8, 10, 20 hours away to just so happy to be lucky enough to be around that one doctor in that one location pinpoint who was lucky enough to be awarded a trial.
Dr Daniel Fox:So we have our own regulations and our own. Organization of research is holding us back. The other thing about it is if we were to somehow unlock that door and allow everyone who was qualified for a trial to be in that trial, regardless of where they live, we could process and get research performed and drugs approved faster, which means we would save even more lives.
Adam Walker:You've mentioned two things there. I'm not sure where to go with first. I think the experience of your daughter, if you wouldn't mind, can you elaborate a little bit further upon that and how that opened up your experiences around that with that professional experience to bear?
Dr Daniel Fox:Sure. We'll go deep and you're welcome to edit this out as you see fit.
Dr Daniel Fox:I have always been in research, always before I had children, I was working in animal research and hearing, we did a lot of animal labs, animal studies. I've always wanted to be in science and research. That's what I focused on. So I went through my, bachelor's degree, got a master's degree in public health, and then I started working at a research lab.
Dr Daniel Fox:Once I got some time at the research lab under my belt, I started a PhD. I was actually one of the older PhD students 'cause I did go the traditional, do all the education and do all the work track. I did some education and then I got into a science lab and did the work and then I became a PhD student.
Dr Daniel Fox:So I got through the PhD, I did fine. I started auditing military bases for clinical trials as a CRA. That's what I did for my postdoc work. And then I ended up getting a job as a program manager to write the patents for clinical, for the actual ip, write the patents for the sponsors, learn how to process that.
Dr Daniel Fox:Then I went over to help A CMO, a centralized manufacturing organization called Catalent. I worked there and we shipped all the drugs globally. We did all the drugs. We worked with the sponsors to do that.
Violet diagnosis and reality
Dr Daniel Fox:While I was working at Catalent, that is when our youngest daughter, the doctor, said she was just a preemie.
Dr Daniel Fox:She's just a preemie. She's gonna grow out of it. She's just gonna a preemie. She's gonna grow out of it. 18 months later, we're starting to scratch our head saying, I don't think she's a preemie. So when we were. Working. I was in California at the time we got the diagnosis for my daughter. She had a rare disease called eye cell, and it's called mucolipidosis.
Dr Daniel Fox:It is a metabolic disorder that is a thickening of the cell membranes that does not allow the transport of glucose into the cell, or the transport of waste outside of the cell. So essentially the cell stars and dies in its own waste at the same time. I cell patients don't live very long. They have been, recorded to live between four to six years of age.
Dr Daniel Fox:There is a less severe version. The mucolipidosis called Hurlers that is very, very common. I should say eye cell is less common than hurdlers. Of course, these are all rare diseases. There are cases of some hurler's kids living maybe into their twenties, but still not a very good disease.
Dr Daniel Fox:So Violet had isel. And so to put it into perspective, we were at Children's Rad Hospital. We talked to a geneticist who was just about to retire. Been there for three years. That geneticist, after seeing so many cases, has only seen three of these. So they're very, very rare. And we knew what was gonna happen.
Dr Daniel Fox:Her name was Violet. Violet was going to die, and we lived in California. So we had to make a very difficult decision to uproot our family from California and move back to the Midwest where we could be around family. So that when Violet died and we knew she was going to, we could be in the right place with our family and we could have the support that we needed.
Dr Daniel Fox:So sure enough, we moved from California back in the Midwest here in Illinois. It's, almost miraculous I told you I live in the middle of a research desert, and the day that we decided to move back to Illinois that day. There was a job posting at one of the largest private clinics could be for a director of clinical research.
Dr Daniel Fox:The day we made that decision I mean, it's like fate. So I got the job. How could you say no to someone who has been on all sides, traveled the country? Learned about the sponsors. Did the big contracts and now coming in to manage the clinical trials. So I kind of went backwards a little bit.
Dr Daniel Fox:I went from academia to sponsor to kind of like A-C-M-O-C-R-O world back to the site. So I had a really weird vision, a really weird site of what the contract should look like, how things should be, how the processes happen outside of a site, what comes before the site. And here I am back with my director position, watching my daughter die and managing clinical trials, understanding that there's literally, as a professional in the field, there is nothing, nothing that I could do to save my own daughter.
Dr Daniel Fox:I did what I could. I saved as many lives as I could. If Violet's not gonna be around, then I'll live her impact through me as well. I'll carry the weight.
Loss and turning point
Dr Daniel Fox:So then, Christmas Eve, right before COVID, violet died on Christmas, day 5:00 AM I found. And that was a rough Christmas. My other daughter, Scarlet, she was older than Violet, about five or six.
Dr Daniel Fox:Violet would've died at three. Three or four. Scarlet still believed in Santa, and she asked, how is Santa gonna deliver Violet's presence in heaven? We said Violet's not gonna need those anymore. So that year, while my daughter's corpse is sitting in her room waiting for the hearse to come, we had Scarlet Open Up.
Dr Daniel Fox:Both presents, both sets of presents. She got to open up both stockings and we're just sitting there waiting. And then you have to sit here thinking, why on Christmas, this is gonna ruin everything. Why on Christmas, this is terrible. Very, very dark time. So then we knew why, because one month later the world shut down.
Dr Daniel Fox:So within a matter of three weeks, there's a place here in Springfield that has a park. With a girl's name. Her name is Aaron, who just so happened to have the same disease that Violet had. Uh, the, I knew the individual who the daughter, her name is Aaron, the individual who donated all of the money to this park called Aaron's Pavilion.
Dr Daniel Fox:And I talked to him and he was healing. He lost Aaron a while back. He said, I'll tell you what you, you can have Violet's reception here. You can do her celebration of life right here. We'll book you right away. Two weeks later, we had Violet's celebration of life before the world shut down and he said I'll, I want Violet to have a bench right in front of Aaron's Pavilion.
Dr Daniel Fox:So now there is a memorial bench at Aaron's Pavilion with Violet's name on it right there with Aaron. So Violet and Aaron can both. Live there in happiness and try to help to support the families as they go through. We got through Violet celebration. Two weeks later, COVID hit try being a director of clinical research, when COVID hit it was very, very challenging to try to continue our trials while we're fighting a hundred year pandemic.
Dr Daniel Fox:But we did it. It happened, and at that point in time, I thought, no more. No more lost life because we can't access the trials. The family shouldn't be losing their children. People shouldn't be losing their loved ones because of where they live.
Building CRPN bridge
Dr Daniel Fox:So then I started looking around, seeing it, okay, what can we do?
Dr Daniel Fox:How can we do this? Clinical research is a huge industry. It's worth billions of dollars, but there is an industry that's bigger than that. It's worth trillions of dollars. And that's healthcare. So healthcare is everywhere. Every single town, every single city, there's going to be a doctor, there's going to be clinician, there's, there are venues, so that people do not have to wait to be a part of a trial.
Dr Daniel Fox:They don't have to be denied trial, not because of their inclusion exclusion criteria, but because of where they live. You should be able to go to your doctor's office, the person that you trust anyway, to be a part of clinical research. So how can we do that? What can we do? Well, we know FDA is coming through, at least here in the United States.
Dr Daniel Fox:They're working on DCTs. They've got the regulations down, they've got the operations down. They've got all of this down, but nobody is talking about how to pay for it. And here's the dirty little secret. Someone working in an industry that's worth trillions of dollars is not going to bend or conform to an industry that is worth billions of dollars.
Dr Daniel Fox:That's not how things are going to work. If we want to bring research to the masses through the doctor's offices, the regulations and the FDA and the source documents are not gonna be your limiting factor. Your ability to pay that doctor for the services that they provide, that doctor that is not interested in being a PI who just wants to see their patients, your ability to pay them is going to be your limiting file.
Dr Daniel Fox:That was the mission behind CRPN. The Clinical Research Payment Network is designed to be that bridge so that we can pay healthcare with research dollars so that the doctors can see the patients. We can collect the data faster and we can process drugs faster so that lives can be safe.
Adam Walker:Daniel firstly. I want to share my commiseration for your loss for Violet, and I also want to thank you for sharing your story of your why. It's so powerful. And this is not just words, but I think the ultimate why comes from the drive from within, from loss, from pain, and from. Wanting to do something better for other people and your experience is extraordinary, and I can't thank you enough for sharing that deep truth, and I want to give you the opportunity to continue to tell that truth because I think somewhere out there people will listen to this and this will resonate for them as well as someone who's also experienced loss in the last year.
Adam Walker:I know what loss and grief feels like, and it can be incredibly traumatic and nothing can prepare you for that. The loss of a child. I can't imagine the depth of that feeling. And as I say, I can only extend my heartfelt thoughts to you and to your family. And what you are doing is beyond remarkable Daniel, beyond remarkable.
Adam Walker:Thank you so much. Thank you.
Grief and perseverance
Adam Walker:How on earth do you pick yourself up from experiences like that and change what feels like the end of the world to the beginning of a new truth and a new story that you can take forward? Because I also ask myself that question pretty much every day at the moment.
Dr Daniel Fox:I still ask myself that question every day. I mean, I kind of put a timestamp on that COVID hit. That's been years. Years, and we have seen a huge transformation in the world in this industry. We've seen an influx, we've seen a dfl, and it sometimes, even now it, I mean, I think the further you go through, the harder it is to wake up every morning and asking yourself.
Dr Daniel Fox:Is this even doing anything? Sometimes I had my hopes up in COVID. I thought that I've witnessed sponsors rallying together, supporting the sites. We've gotta save the world, literally. And then it just disappeared back to business as usual. I've got hypocritical negotiators who are saying, well, that was COVID era.
Dr Daniel Fox:We're going back to the gravy train is what I have literally heard my negotiators say. I'm like, well, I'd love to go back to the prices before COVID because they have gone up. I just have to hold on to hope. And think to myself I have two choices.
Dr Daniel Fox:I can either sit here and do nothing and just watch things get worse, and then regret not trying, not putting my all into this. Or I can put my all into this and just say, you know what? I'm being the best version of myself. I'm doing something about it so maybe one way to say it is you wake up every single morning and you do your very best simply to avoid regret.
Adam Walker:I completely agree with that.
CRPN model and negotiations
Adam Walker:Now, talking about how CRPN and the network itself goes about finding access to those medications for the patients that need them and when they need them, how does that work and how does that play out and how is it? An effective business model that is changing the status quo for patients as much as connecting absolutely.
Adam Walker:People to sites.
Dr Daniel Fox:So the clinical research payment network payment says it all. It is focused on the financial part of this. It has a long term objective and a few short-term objectives. I'll talk about the long-term and then tell you why we have short-term objectives. The long-term objective was just that we want clinical research to speak the financial language of healthcare.
Dr Daniel Fox:Now, that's different. I understand that that's different in other countries, but here in the US let's talk about both industries. In clinical research, a clinical research site is awarded a contract. Then that contract is negotiated Every single trial. Negotiated like its own little bitty silo. It's like a little ticket that's formed.
Dr Daniel Fox:So you have to go through the same exact process over and over and over again, talking to a completely different person, but having the same exact conversation. Negotiating high like you're in the housing market and settling low, and hopefully you can settle in the middle. And it is highly like energy draining.
Dr Daniel Fox:Negotiations are energy vampires. For anyone out there who says, oh, I love negotiations. I love the thrill of a negotiation. You haven't done enough of 'em. Because eventually what happens is you feel like you are wasting your time having the same conversation, but getting the same outcome. So once you go through between two weeks to nine months to 18 months of negotiation in a clinical trial, then the contract is signed.
Dr Daniel Fox:Then the site can be activated, then the patients can be seen. Makes you wonder how many people are dying after years of negotiation for some of these clinical trials, especially when those patients need it. So there's your number one life saver to to think about is how many lives are lost while you're waiting for them.
Dr Daniel Fox:Bureaucracy to finish after you get the contract. It's a fixed contract. You're paid for a certain amount of money in clinical research. Regardless of the cost that you're paying for it, you have to just kind of shoot for it. You may be negotiating for a trial, and then three years later when the trial's still going, you still get paid the same and there are no amendments.
Dr Daniel Fox:It's very, very rare to get an amendment that's site initiated. Amendment Sponsors will go through and do an amendment all the time, oh, we're cutting a visit, we're adding this, we're doing that, but have a site come in and say, no, we need an amendment. This budget is wrong, is very rare. On top of that, you barely get paid most.
Dr Daniel Fox:I mean, the industry standard is simply you sign a contract, you hope to get paid, and you just get paid whenever the sponsor or CRO feels like paying you. That's all there is to it. There are no compliance, accountability, actions. That are there for sites. I mean there are, but it's kind of under the table.
Dr Daniel Fox:You have to do it in certain ways that really should never be happening like that. So after you put together the extended startup, the questionable payments and the underfunding of the study, what healthcare provider would possibly want to agree to that? Because that's not the financial language of healthcare.
Dr Daniel Fox:Let's look at healthcare in the US in general.
Insurance First Healthcare
Dr Daniel Fox:What happens is you have clinics who have these fixed rates with insurance companies, and then because of those fixed rates with the insurance companies sell insurance cards or premiums to patients. Patients have an insurance card in the world of, we'll call it an HMO, right?
Dr Daniel Fox:HMO in the us. That's kind of just that The insurance companies have special contracts with clinics that are in network and then. The insurance companies go to the patients and the patients say, I need to see this specialist. And the insurance company gives 'em this list and say, well, these are all the specialists in network.
Dr Daniel Fox:So if you want to pay the low rates, you're going to go to these doctors in these networks. Patient goes to the doctor's office, has a scheduling, what's the very first thing that they do? They say, where's your insurance card? Okay, patient pulls out their insurance card. Here you go. So then enter in your insurance information.
Dr Daniel Fox:Okay? Sure enough, the insurance company will pay for your visit or they won't. They're gonna tell you one or the other, this is covered or this is not covered. And then they say, okay, please sit down. Now we're gonna proceed. What's the first thing that happens in healthcare when a patient walks into the doctor's office?
Dr Daniel Fox:It's not, what's wrong with you? It's, let me see your insurance card. Okay.
In Network Trial Model
Dr Daniel Fox:How do we mirror that in clinical research? What can we do to speak the financial language of healthcare in an insurance model with fixed contracts that's underfunded and all of this? What would happen if we treated the sponsor like that patient, the sponsor who was coming into a site and seeking services?
Dr Daniel Fox:What if we issued the sponsor something like an in-network insurance card where the sponsor goes to in-network sites? Issu gives its little network card, and then the site says, oh yeah, we're in network. We've already got fixed rates with this group. We'll submit your IRB right away. That. Eight months, 18 months of negotiations down the drain, done.
Dr Daniel Fox:No more back and forth. All the negotiations are done ahead of time. They're prefixed, they're due diligence. We know their fair market value. Sponsors come in, they, give their insurance card or the trial, bam. IRB is submitted that day. So now we've solved one problem. That really extended startup that kills lives, that's gone.
Dr Daniel Fox:The bureaucracy, the red tape, it's gone. I've answered all the questions about that and I'm sure that there's same questions are gonna pop up, but we can go over that another time. But let's focus on how do we resolve this? Then what happens?
Claims Style Payments
Dr Daniel Fox:Let's talk about the payments. Sponsor gives the card, they issue the trial, everything happens.
Dr Daniel Fox:Then what, how does it work in healthcare clinics submit a claim to the insurance company. Insurance company validates it. And I'm not gonna go into AI generated denials because that just is another soap box, but the point is, the concept is you validate it, you pay it to the site, and then you go after the patient on what's left.
Dr Daniel Fox:Do the same thing. And here's the thing, it happens already. CROs continuously validate data, eventually pay the site when they feel like it, and then go after the sponsor for it. So it kind of happens in that way, but it just doesn't happen in a timely manner.
Adam Walker:So what you're describing doesn't really put the patient at the heart of. Accessing medicine and being the pivot point of the decision making, nor the access to any of the healthcare that they may or may not urgently need.
Dr Daniel Fox:It does, and I'll tell you why. Got it. Um.
Violet Mission Autism
Dr Daniel Fox:A little bit of a tangent as part of my mission to serve Violet as part of my mission to help as many people as possible.
Dr Daniel Fox:A year after Violet passed, I was approached by her occupational therapist, the one who literally, ensured that she was not in as much pain and she was as mobile as possible. And he said, you know, I've got a really tricky problem and I've got a dream I want to follow. I have seen that. As an occupational therapist, we have a really big problem in this area for our autistic population.
Dr Daniel Fox:Our autistic population goes through high school, goes through public school, and they're fine. They have state care, we have occupational therapists. Everything happens as soon as they graduate. A blind eye is turned to them and there is no help for them anymore. They don't have any more adult support.
Dr Daniel Fox:They don't have any funding to help pay for occupational therapists. They don't have trainings, anything like that. So generally what happens in our area is autistic adults tend to go to group homes and they don't get to contribute to society, and they're just stay in group homes for the rest of their lives.
Dr Daniel Fox:I want to do something about that. I wanna start a nonprofit for autistic. Adults so that we can get them gainful employment so that they can contribute to society, they can do things, their parents will feel happy because their children are doing something. I wanna do a nonprofit about that.
Dr Daniel Fox:So we did that. We went through an entire nonprofit adventure in the autistic community. That nonprofit, ended up getting closed because the founder he needed to support his family and it was just taking too long for this thing to grow. And, as a result, I became a CEO of another autism nonprofit from that communication.
Dr Daniel Fox:So, because of Violet, I not only founded a nonprofit for autism, but I also was a CEO of another nonprofit for autism. And I found that, I really got to know my autistic community in the area, and that plus my experience for research told me that there's no way in hell an autistic patient would be a part of a clinical trial.
Dr Daniel Fox:And the reason why is they would never leave their docket. I had many, many times where people said, oh, just refer your patients to our pi. It's like you, you must not know your autistic community. And then, oh, by the way, what are you testing in this trial? Oh, autism, irritability. I still love it.
Dr Daniel Fox:So you're gonna induce irritability just to try to conform the patients into your clinical research design? No, thank you. I'm good.
Trial Card For Patients
Dr Daniel Fox:But the point is, and this is where it kind of goes back to what you were talking about. When we speak the financial language of healthcare, we're not only applying a healthcare model into the sponsors, but we're also creating a system so that we can issue the patients with a trial card that's connected to that sponsor so that they can go into any doctor's office and be able to speak the financial language of healthcare with their clinics.
Dr Daniel Fox:Whether or not their clinics are research prone or research naive, they know money and they know third parties. So you're going to be able to create a financial system that can literally integrate into healthcare and allow patients the ability to go to their doctor's office without a problem, without a financial problem.
Adam Walker:It's a compelling observation you shared there, and I know it's very different to what we experienced here in the uk, but nevertheless. The scale on which that does not support patient requirements is absolutely mind blowing. Actually, when I think about it, you talked about autism and autism spectrum disorders and change is pivotal to what does not sit comfortably with any autistic person or person with autism spectrum disorder.
Adam Walker:Having known and. Worked alongside many people who identify as being autistic. I find 'em to be the most extraordinary, capable people with the most unbelievable focus and attention for delivery and. Best outcomes than any other people I've ever worked with, to the point where actually, if I were hiring or indeed working alongside people in a team, those are my go-to superpower people.
Adam Walker:They're the super humans in the room. I don't know whether that's obvious to people who don't understand these things, but I'd love to hear your perspective on that as well, because when you touched on autism, I had to bring that to the table.
Autism Strengths Projects
Dr Daniel Fox:I would encourage you to go to Amazon right now and look up a book called Kohl's Goals.
Dr Daniel Fox:That's C-O-L-E-S, Kohl's Gold. Remember that nonprofit I told you about that was dedicated to and empowering our autistic adults to give them opportunities to contribute to society? The project that we did successfully was the creation of a children's book called Kohl's Goals. It was illustrated completely by a brilliant autistic adult.
Dr Daniel Fox:A young adult, I won't say his name, but he's on the book. He illustrated everything and he was paid to do it. He was so excited. And the words were written by our founder, John Mki. So if you look at Kohl's goals, what the reason why I bring that up? As the book itself talks exactly about what you just said, these autistic individuals are absolutely amazing.
Dr Daniel Fox:They love doing things. They love to contribute, and they want a chance. Most of the time, if you gave them a chance and you had an understanding, you would know. The other thing that we did for this nonprofit, it was called Innovation Autism. Was we created an, an awareness training called the ACEs training, an autism conscious environment, and we went throughout the community and offered ACEs training to businesses so that the businesses would have a general awareness of autism spectrum disorder and maybe get some basic ideas and understandings for acceptance of autistic individuals.
Dr Daniel Fox:What happened was we found that we posted a list of all of the businesses online who took and qualified in ACEs training, and what we found was in the autistic community, it allowed the parents with autistic children to be able to go to stores and to be in a place where they knew that they were understood.
Dr Daniel Fox:So that if their child had a meltdown, the, uh, the, a trained companies would be like, okay, no problem. We have some things for this. Here's a, some, here's a toy. Here's something that you need. Do you need a, uh, a safe space? You need a quiet space. We have this for you. And so it turned into this really weird community based level of businesses so that parents weren't afraid to go out and shop anymore.
Dr Daniel Fox:If they didn't feel isolated in their own community, everything was about acceptance. Uh, I am, I'm officially ACEs trained and I know that there's a lot of people around here are also ACEs trained. But it's just a matter of a different level of understanding and awareness and acceptance.
Rising Autism Rates
Adam Walker:I really appreciate you sharing that, Daniel, and I'm just curious while we're on the subject.
Adam Walker:Do you think there are more autistic people around today, or do you think there is better understanding and identification of those symptoms? Were we always around people with these traits, but we didn't have a name for it? I'm just curious because. It's something I've seen both in friends and family, but particularly in the next generation coming behind us.
Adam Walker:And I've heard all sorts of theories about it with regards to vaccines, inoculations, childhood diseases. Very, it's, it's now
Dr Daniel Fox:Adam. Yeah, it's pretty fresh right now. How many of you have seen the Tylenol memes, the big Tylenol thing right now? The big so I think it's a little bit of everything. I think that if you look back in history, there were diagnoses that, if autism spectrum disorder was a diagnosis back in the day years ago, hundreds of years, I think that it would've been there, it would've been prominent.
Dr Daniel Fox:The big question is, is the percentage rate of autism spectrum disorder increasing or is the human population increasing? Is this a higher ratio or is this a standard? We'd have to do that as an analysis. I had to do a lot of, uh, research on autism, autism spectrum disorder. I am not a neurologist. I am not going to claim that I have these things. I'm a scientist, so I read a lot of papers, I put things together and I have some ideas and conclusions. So if you look at the prominence, in the 1970s, I think autism spectrum disorder wasn't like one in 20, and I think that it was by 2030. There was an autism society that said maybe one in four boys will have autism spectrum disorder.
Dr Daniel Fox:So it looks like a ratio's going up. The only other thing that I can think of that possibly increased from 1970 to now. Is the ability to access screens. I wonder sometimes, and this is a total Dr. Fox theory, but screen time, especially in young children is almost guaranteed and there's no doubt in my mind that the continual stimulation as a result of screens and the limiting boredom that children have anymore.
Dr Daniel Fox:Could somehow create neuron development in a way that is not what it used to be. I don't know, maybe it's just me aging myself, but I really do think that screen time and limited boredom could have some kind of a correlation, but I'm not gonna call it causation.
Adam Walker:It's a great observation and a very valid point I think that you make there.
Adam Walker:As I say, these are only anecdotes and these are only, the musings of a couple of people sat around a podcast. But I appreciate you sharing that perspective. There's so many things that you've touched upon in our conversation today, Daniel, that are so enlightening and have really made me think more about things I should be thinking about.
Adam Walker:Nevermind, the things that we're doing in and around. Patients and clinical research and access to medicines having worked also personally in and around rare diseases. That was the area of medicine where I found the most joy and drive and personal value. I'd love to know what your perspective is on that.
Adam Walker:Yes.
Rare Disease Economics
Dr Daniel Fox:So do you remember in 2017 the age of tailored medicine, customized medicine? There was a big push back then. Yeah. So rare diseases, was common there. And there's an entire associations dedicated to rare diseases now, and they're doing a good job. We do find that the majority of rare diseases are founded by people who have lost loved ones and things like that, and as a result, they are driven by a lot of nonprofits.
Dr Daniel Fox:And nonprofits can only do so much. They can only do what their public groups are going to do to donate and support. Most of the time it's small patient advocacy groups, people who have lost children, people who wanna donate, trusts the problem with rare diseases is it's rare. Where's the bang for the buck in that you're gonna treat three patients in the world?
Dr Daniel Fox:Is that worth billions of dollars in development? Probably not. So we get on a little bit of a financial challenge when it comes to rare diseases and I could go into the whole history of even I cell itself and how we were close to something and then we lost it because someone lost a cat colony at a university.
Dr Daniel Fox:It just ran out of funny. They got rid of the only animal model for eye cell that in the world because of money. I won't even go into that.
Plan B For Sites
Dr Daniel Fox:Rare diseases can be challenging, but going back to trying to make research for the masses, what I found in the CRPN world was sponsors aren't ready for that.
Dr Daniel Fox:Pharma is like a cruise ship. It does not turn on a on a dime, it doesn't turn on a pivot. And you go to start to talk to sponsors about these things. They're sitting here thinking, oh, well, you know, this is just a spoof. It'll disappear like all the other hypes of the industry. Give it a couple years, it'll be gone.
Dr Daniel Fox:Nobody bites. So how do you try to make an impact on something when nobody's ready to adopt it? What do you do? So CRPN had to move to a plan B. I still have the vision, and I said we're gonna talk about the long term and the short term. That's the long term. The vision is to literally create an entirely different financial infrastructure for clinical research that's gonna take more than me.
Dr Daniel Fox:It's gonna take a lot out of people. So my plan B is if I can't completely change it, what I'm gonna do is I'm going to do everything possible to guide our community research sites through the chaos. So that they have what they need to survive, I can empower at least those pinpoint locations in every region that I can with the information that they need.
Adam Walker:I think that's a really worthy mission, and perhaps that's a good place in which to. Bring this conversation to a close, but also open up.
Quick Fire Questions
Adam Walker:A quick fire question round if you wouldn't mind, Daniel. At this point, I always like to ask our guests a number of key questions and I wonder, bearing in mind all the nuggets of wisdom that you shared today, what is the one piece of advice you would give to your younger self?
Dr Daniel Fox:You like books, right? Yes about a year ago, my wife was listening to a podcast, ironically, a wrestling podcast. You know, those wrestlers, the ww whatever. They were talking about favorite books. It got very, very deep they mentioned a book called The Four Agreements.
Dr Daniel Fox:I've read books before. The Four Agreements completely rewired my perspective of life. It helped me to understand much more about my consciousness, my existence, and how I can interact in a healthy way with my world.
Dr Daniel Fox:If I were to give advice I would say read very carefully the four agreements and apply those. Now.
Adam Walker:Noted. I'm gonna go away and have a look at that one. What are the three top qualities you value most when building a team? Daniel
Dr Daniel Fox:honesty. Number one. Never be afraid to tell me exactly how you think. Challenge me, whatever it might be. Communication, almost like a level of honesty, but more to a level of don't hide things. We're not gonna do that. And finally, impact I would look for people in a team who are driven by making an impact.
Adam Walker:Thank you for sharing those truths. What is your favorite thing outside of work? I think you may have alluded to it, but I'll let you answer that one.
Dr Daniel Fox:So outside of work right now I'm a martial artist. I've done that before. I do karate a lot. Even when my body doesn't help me, it helps me too. Train myself mentally have a strong mind.
Adam Walker:And finally, your number one golden rule for life and for business.
Dr Daniel Fox:This is gonna reference the four agreements. So if you read this, you'll see something familiar, but it doesn't matter how many people are around you, it doesn't matter what group you're in.
Dr Daniel Fox:It doesn't matter how much money you make or even, how many people speak your name. You walk through this life alone, you will be alone no matter what when everything comes to an end. It's going to be you who is going to have to be responsible for what choices you make.
Closing And Contact
Adam Walker:We've touched on many aspects of. Your drive and determination to make a change for other people, not least of all the autism community, but I'm sure there are many other aspects that we haven't touched upon today.
Adam Walker:We've talked about some amazing things today. Daniel, you touched on your own personal loss of your dear daughter Violet, and I cannot thank you enough for your honesty and your openness and your truth in sharing that as much as the determination that's given you to take forward the CRPN network and everything that you've done thereafter.
Adam Walker:If there are members of our audience out there who'd like to reach out to you, what's the best way they can get in contact with you? Daniel,
Dr Daniel Fox:I am on LinkedIn very, very often. You're welcome. Please feel free to look me up on LinkedIn. You're welcome to check out the YouTube channel and send me a message.
Dr Daniel Fox:I have a big active YouTube channel of a lot of videos in research. If you ever wanted to know about research. All three. The content is there and just gimme a message. There's an info message. You're welcome to send me an email. If you have any questions about what we do or how we help people, please let me know.
Adam Walker:Thank you so much Daniel, for coming on Pharma prescribed today. It's been an absolute pleasure to welcome you. I didn't know we would go to where we did today, but nevertheless, I can't thank you enough and it's been an absolute pleasure to have this opportunity to have a conversation with you and I can't wait to do it again soon.
Adam Walker:Thank you, Daniel.
Dr Daniel Fox:Absolutely. Absolutely. Adam, thank you so much for having me on here. I really appreciate your podcast and the opportunity to tell the story.