The Patients Speak

Welcome back to our podcast, The Patients Speak. Today’s interview we got to sit down and speak with the author of Shining Brightly: A Memoir of Resilience and Hope, Howard Brown. Howard is a Silicon Valley entrepreneur, speaker, podcaster, and two-time stage IV cancer patient, survivor and advocate. He shares the keys to leading a resilient life that drives successful community leaders, business innovators and healthcare advocates.

Today we talked with Howard about his story. How he overcame stage IV cancer 2 times, patient advocacy and clinical trials, and his new book Shining Brightly. 

“Life is a team sport, fighting cancer is a team sport. Build your team”

Overcoming Cancer

In 1989, at the age of 23 Howard was diagnosed with stage four T-cell non-Hodgkin lymphoma. He was a deer in headlights. His dad went to the library to get a book on cancer. After surviving, 26 years later he was diagnosed again with stage four metastatic colorectal cancer. This time he was married and had a child. He lived it 2 different times and in 2 different eras. One was really analog and the other one was digital. 

His first piece of advice was “Don't do this alone”. It's way too complex. Cancer diagnosis and treatment cuts you down emotionally, physically, financially, and in relationships. Take someone with you. And, if you can't take someone with you, someone can be a mentor, can be assigned, a nurse navigator, any type of patient navigator, there's resources for you.

Patient Advocate

As the patient, they need to be helped to be educated.

• Paperwork and billing 
• Emotional support and balance
• Chemo Brain - 

Chemo brain is another name for PTSD, post-traumatic stress. The amounts of stress that you get in dealing with cancer and in dealing with all the medication and the side effects.

• Minimize negativity in your relationships and environment
• Mental toughness - Having a strong, positive attitude
• Release resistance to receiving help

Clinical Trials 

Howard explains that clinical trials are important because that's the advancements in cures. He also explain in what ways they can improve:

• They need to make it easier to get into the trials. 
• They're missing a whole population called disparities, (minorities, Indian, African American, Latino)
• Making sure that the patient is understanding of the trials, talking them through that trial is really important, you can't just rush through it. 
• You need to make sure that the patient and their caregiving team, including their original oncology team
• They have to rely on your input.
• The patient has to be able to give a way to be able to express feedback, and they need to make that simple. It can't be very complex. 
• They need to be able to either record you or give a patient portal where you can actually give your feedback. 

“It's a complex process, but it needs to be simplified, but it's an important process because we need to move forward and help save more lives.”

Shining Brightly

Shining Brightly is a book about resilience and living a life of hope and positive change in this world. Shining that beautiful light that we all have to lift ourselves up, lift others, and then lift our communities up. It's inspirational, and it tells you how to get back up again when you get knocked down. As cancer patients, families of patients, and care partners, you get knocked down pretty hard, but, still, you gotta get up and out of bed every day and push further and keep going. It's okay to sleep in bed one day, but you gotta get back up the next day.

We are very encouraged by Howard's interview today. Be sure to check his book out, Shining Brightly and if you want to connect with Howard go to his website at shiningbrightly.com. He would love to connect. 

Howard on YouTube

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If you’d like to read more about well-informed healthcare consumers – along with the 83bar patient activation platform – go to www.83bar.com

Meet the Director of Data Science and Analytics at NutriSense, Olga Sazonova. Olga has also worked with GRAIL, Inc as a Senior and Staff Scientist and with 23andMe as a Product Scientist II and Computational Biologist.

We explore a very unique side of listening to the patient with Olga through her expertise as a biological data scientist and her experience leading teams of exceptional analysts and engineers to deliver personalized data-driven products to improve cancer diagnostics and data nutrition for wellness and disease prevention. 

A few topics we discussed with Olga in this episode are:

• How Data Science and Analytics tell a patient's story 
• The value in Glucose Monitoring 
• The company NutriSense - 

“The value of data and what we call data science and analytics is to tell a story.”

Telling a patient’s story through Data Science and Analytics

The standard practice Olga uses when thinking about a particular question or problem is to look at it from a holistic picture, a pattern, a vignette, an individual person. So, “Data can be an amazingly objective and comprehensive tool for helping us understand what's going on.”

1. She looks at their journey, their data over a period of time combining the entire data set and the rigorous statistical analyses to come up with a scientifically valid answer, then overlaying that with an individual's data to say, this is what it looks like for a single person, not just a sum of a bunch of data points.
2. Keeping a record of your experience, your environment can be extremely helpful for figuring out which anecdotes to listen to and not.

Olga mentions the value of a food diary. A lot of people with chronic disease struggle to understand what they eat may or may not contribute to their symptoms. She said you could anecdotally say, "Well, I have inflammatory bowel disease. It seems like when I eat food with emulsifiers, I have symptoms. I have flare ups." People think they would notice these patterns. Olga says the right thing to do is to start keeping that diary and note every time you eat food with emulsifiers, what are your symptoms like the next one or two days and so forth.

Glucose Monitoring

Using glucose monitoring you can track morning, noon, and night metabolic characteristics in a person noticing how they change and evolve over time. 

1. As these continuous glucose monitors develop, researchers have started using them in academic settings on healthy individuals and research shows there's a lot going on under the surface for healthy people that they didn't really anticipate. 
2. One of the most surprising findings was that different people have different responses to the same food. 

This came out of a landmark study in 2015 out of a group in Israel. They had 800 people wear continuous glucose monitors for two weeks. They had them eat specific things and they saw that the same person can eat a banana and experience a high spike, but eat a cookie and have a much less dramatic increase in blood sugar. And then the reverse is true for someone else.

“I think what we would hear when we start listening to our members is that maybe more traditional vital signs of your heart rate, your pulse, amount of oxygen, your blood, glucose is really a marker that's valuable for understanding where you're at today across many dimensions.”

Nutrisense

The company is three years old and has three co-founders. 

1. The first is a very technical software engineer. 
2. The second COO has decades of experience in healthcare consulting and really understands the business and the market side of things. 
3. The third co-founder is a registered dietician who spent years working in hospital settings. 

When starting the company this confluence of three minds thought deeply about the technology, the market opportunity, and also a way to unlock the benefits of nutrition and nutritional counseling for many, many more people before they have a disease.

They often speak out about nutrition awareness being too late. If they can get to patients much sooner before they have, for example, end-stage renal disease due to complications of diabetes. They could get to them before they even have diabetes. 

Olga believes food can really have the greatest impact. 

Connect with Olga on LinkedIn and check out NurtriSense to learn more about what they do and how they can help on the metabolic health and wellness journey. 

If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

Welcome back to our podcast The Patients Speak. 

Today we're going to hear the story and the journey of a very special guest, Seth Rotberg. Seth has been diagnosed with Huntington's disease (carrying the gene for it) and has become a patient advocate for genetic testing, in general, for many rare conditions.

Seth is more than just a patient advocate – he is the co-founder of a non-profit Our Odyssey, is an award-winning speaker, and helps make a difference in the community by immersing himself in the patient perspective

In our interview with we discuss with Seth:

• The role of a patient advocate
• The role patients play in participating in Clinical Trials 
• Seth’s Call to Action

Seth’s mission statement: 

"Live as if you were to die tomorrow, learn as if you were to live forever."

Seth saw his mom go through Huntington's disease for 17 years of his life and it slowly deteriorated her, both physically and mentally. “It was like watching someone on an island, where the water continues to go up and up and up, and there's nothing for you to do besides just watch.” 

Role of a Patient Advocate

Genetic Testing: Planning and preparing for his life ahead. 

• Whether it's a future family, 
• career setting, 
• understanding what may happen if there's not a treatment in time.

Genetic Counseling:  Offering resources and support 

• Symptom hunting - “Is this a symptom of my disease?”
• Survivor’s guilt - “If I tested negative, and having a sister who's at risk and what is that going to make me feel like?”

First 3 Steps: 

• Actively listening
• Learning 
• Implementing a planner strategy

Clinical Trials and Community 

Development and Participation:

• Community outreach to patient advocacy organizations

1. connect you with other community members and gathering insight
2. having multiple meetings with these different community members, patients, caregivers, and key opinion leaders
3. understanding what are the different perspectives and honing in on what are the challenges of the community, and then how can we potentially help it?

• Work closer with patient advocacy organizations

1. trial awareness
2. trial education
3. making sure the community knows that this is an option.

Call to Action 

"Let's listen to them. Let's understand them better, and then we can try to find ways to work together with them."

1. Treating us as partners and as patients
2. Make sure that you are truly working side by side with the community you're trying to serve. Build trust in those relationships and being transparent
3. Learn from other community members, bring them in, whether it's through a lunch and learn, or speak engagement, or attending conferences 

It was truly engaging and insightful talking with Seth Rotberg today. We hope you enjoy this interview today and to learn more about Seth's journey and patient advocacy go to www.sethrotberg.com 

Also, be sure to check his Tedx talk and watch his FULL STORY. 

@srotberg15 on Instagram

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If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

Hello friends and welcome back to our podcast, The Patients Speak, and happy New Year 2023.

If you just started listening to our show over the first few episodes, you know we've heard many great stories and examples from leaders on how to listen better. Specifically, we've heard from patient advocates on the ways they promote the patient voice and how they share a commitment to helping us all elevate that voice to a whole new level.

To start the new year, we wanted to share highlights of five patient advocacy guests to give you an idea of how they saw ways to accelerate the patient journey.

We'll talk to

• Wendy Bjork, The Empress of MS.
• Michael Sapienza, the CEO of the Colorectal Cancer Alliance.
• Pam Cusick, Senior Vice President of Rare Patient Voice.
• Andrea Wilson Woods, founder and president of Blue Faery for Liver Cancer.
• Alicia Lawrence of NORD, the National Organization for Rare Diseases.

We hope you enjoy this summary of interviews with patient advocates.

Thanks to guests like these, we've enjoyed a solid start to our podcast. Already, we've had more than 5000 downloads and we've ranked in the top 0.5% of all podcasts. We've received over 700 five-star reviews on iTunes. Subscribe now, and if you'd like to leave us a comment or review or even a suggestion for a future guest, we'd certainly appreciate that.

Thanks again to our sponsor, 83bar. If you'd like to know more about 83bar and the work they're doing in patient recruitment, patient education, and patient empowerment to create better patient outcomes, visit their website at 83bar.com.

And certainly, come back again for our next episode. We'll continue our conversations with patient advocates like these, along with healthcare executives, clinical researchers, and medical providers -- all to give us insight into what we need to hear when the patients speak.

It’s been a great start to the podcast.

We've learned so much and have been inspired to accelerate the patient journey.

We've heard motivating words from healthcare leaders on the importance of listening to the patients speak.

When we reflect on just these four episodes, we get a sense of importance and the commitment of leaders to elevate patient listening to a new level.

Listening to patients starts in clinical development phase

Keli Walbert said,

"It really starts with us in development of our clinical trials. So we work very closely with advocacy organizations and we develop relationships with advocacy organizations in disease states well before we bring them to market. The reason that we do that is exactly as you exp just outlined. We want to get to know patients. We want to understand what their experience is, and we wanna give them the opportunity to actually inform our clinical trials so that we can develop trials and we can develop endpoints and we can develop data that is relevant and meaningful in the real world and relevant and meaningful to patients so that when we come to market, we're talking about their disease states and we're talking about our treatments in a way that is meaningful to."

Why patient voice is so important – close gaps, improve access

Michael Biarnes emphasized,

"It's our responsibility to help improve access for everyone, not just those who live next to you know, the big new shiny institution that has all of the great resources. And we need to engage those individuals in a way that will bring forth the right vo voices, that trusted advisors, the trusted community leaders to ensure that individuals know of the types of care that you know, can be achieved no matter where you are, no matter where you live, no matter what demographic you might have. 

And you're bringing up some of these health gaps, these disparities. And we, again, we we're focused a lot these days on diversity and equity and inclusion, especially in clinical trial recruitment. What, what are some of the things that you're seeing that are helping the recruiters of clinical trials improve their reach, you know, be more inclusive, improve that diversity? 

So a lot of it is this engagement with broader communities trying to, trying to understand the stakeholders who are truly, um, leaders to a, a given community, to a given population, right? People who are trusted advisors and building those relationships. And it takes time and it takes effort. It, it's not just a simple, you know, marketing campaign. It this means face to face interactions, dealing with key opinion leaders and, and making sure that, you know, you're not just talking about a product, you're talking about education, right? So disease, state awareness, understanding the patient journey and bringing, as you said, pain points, but making it, making it known that these issues are not just theirs. That these are shared experiences and that we're trying to listen and we're trying to make improvements. And, and so it goes to a lot of this patient education early and often and, and just trying to get as much engagement with the key stakeholders as possible."

Other creative ways to incorporate patient voice

Shefali Shah shared how her company MindMaze builds the patient's voice into the system 

"That is so critical. we really live the patient journey, um, in a number of different ways. So first and foremost, um, we have patients who have survived stroke, um, or other traumatic brain, uh, injuries. And our on the product team, they are in there developing the product. So right from the very base we have, um, you know, patients kind of bringing in their experience into the fabric of the product. Um, the other thing that we are very proud of is also bringing, uh, therapists into the product design process. And, uh, you know, these are therapists who have seen hundreds and thousands of patients across their lifetime and they understand at a more macro level, what are some of the con the commonalities and what are some of the biggest challenges that patients face. Uh, even though as you know, every patient is going to present themselves quite differently, but yet there are some universal factors that we are able to take into consideration. 

We do so much more. We are, uh, you know, looking at patient research. We are also, um, you know, I personally listen to podcasts, uh, to really understand the patient journey. And, uh, you know, I do have to give a shout out to a very lovely podcast called Recovery After Stroke. And they have done an amazing job of just talking to patients and caregivers. Um, and, and I think listening to those stories unfiltered without saying, Hey, this is for market research purposes, is such a fantastic way of integrating their stories and their experiences."

Keeping the internal team focused on the patient

Mark asked Matt Mitcho, "there's a lot of other, uh, executives and managers in, in your seat listening to our show who say, We just got to keep our people, our company, you know, our reps, our educators, grounded in the patient voice. What, what else are you doing to stay? You mentioned a conference, for example. What else are you doing to keep your, your team indoctrinated with the patient voice?" 

Matt said, "I appreciate that question very much because I think there's a lot of in inauthentic leadership in the world.

Exactly. And that's where I'm going, Mark. So, you know, saying it, doing it are two different things. I can tell you I'm a great guy, but if my behavior does not show that I am somebody that puts other people first, then it's hard to believe that. And that's what we, that's what we try to do by being patient-centric. Not saying it on every piece of collateral, but making sure that the culture that we've created within the organization focuses on the patient, focuses on getting the patient an answer, focuses on the parts that we can control, white-glove service, accurate results -- we do not have the luxury of missing. Every time we run a test, it's somebody that is waiting on the other end to get a very specific, very accurate answer. So that they can do something to make themselves feel better or work with their clinician to make themselves feel better.

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If you would like to read more about 83bar and the patient activation system, go to 83bar.com

Our guest today is Navid Alipour of AI MED GLOBAL. Today we take a look at how AI and precision personalized medicine, even medical imaging, converge with this idea of personalizing treatments. 

Navid tells Mark about his business story and the technology behind his company, AI MED GLOBAL and CureMatch. Some of the main topics we talked about:

• How their AI technology creates faster results for early cancer detection
• How they level the playing field to CureMatch any patient. Making it easier for all patients no matter their background, economic or education gaps 
• How AI Med Global works with Clinical Trials and what is KRR AI technology

Mark asks, “If we had a chance to talk to a patient you're serving, what is their biggest need?”

“Every day we get up and say, how can we do things one day faster? That's someone's life that we’ll potentially impact. And so for me, my wife is a cancer survivor, she has heart disease in the family. That early detection, that knowledge is power and that is what will prolong lives and save lives. So our goal is, let's see how we can do this faster.”

Early Detection

With the help of artificial intelligence, precision medicine, genomics, and a higher computer capacity to process data this leads to the advancements in the convergence of technologies resulting in: 

1. progression-free survival or the overall survival of the patient
2. better detection, treatment, and monitoring. 

CureMatch comes in on the detection side.

• No extra radiation
• No extra discomfort

Leveling the Playing Field

Working with community hospitals like many labs do, the hospital can set up their own CLIA-certified labs so they can take care of their patients right there in their community. 

“We all know those horrible nasty cancers, community hospitals end up sending a lot of patients to these academic institutions. And so what we're trying to do is level the playing field. It doesn't matter about someone's background or wealth or education, we can CureMatch any patient, whether it's at Mayo or MD Anderson or a community hospital in Des Moines.”

“Our AI can turn that general radiologist into a specialist.” 

• Getting technology into the hands of the radiologists and the imaging centers to detect cancer faster and increasing the workflow of radiologists
• It's the same kind of technology behind GPS which gives them a five- to seven-year head start and a competitive advantage.

Clinical Trials and KRR AI Technology

A CureMatch report produced in their database is a proprietary database always being updated. Once a new drug is FDA-cleared, they will add it and have their clinical team work on that curation every day.

The type of artificial intelligence is unique and many people haven't heard of it. It's called K R R AI. 

• It's the same kind of technology behind GPS.
• One patient's cancer does not look like anyone else’s at a molecular level. And so that's where KRR AI comes in. 
• The database is curated so that it gets better and better the more it's used.

Navid’s Business Journey

AI MED GLOBAL is a technology company, not a medical practice.

The business was born when his business partner was diagnosed with terminal cancer about two years into the history of the company. During this time, they met Dr.Kurzrock saw what she was doing with her patients, helping them prolong their lives in some cases and eliminating their cancer. They said, “Dr. Kurzrock, have you ever thought of starting a company?” 

They told her that the technology belongs to the world and you can't scale yourself. You can only see so many patients in one day. And so that's where they ended up combining her domain expertise with their artificial intelligence team to then train the algorithm to get it to where it is now. 

“I feel by getting these technologies out there in the hands of doctors and out to market and making patients aware of them, we can impact many more lives.”

Lastly, he shares his approach to the market with partners and collaborators rather than competition. Because most of the time patients rarely knows all of the delineations, all of the boundaries, all of the separations, they just want to get better and they just want to know how to get better treatment.

“We're at an incredible point in history and modern medicine is going to advance more in the next 10 years than the last call it 50 years combined”

Connect with Navid here: 

www.aimedglobal.com

And on social media: Linkedin

If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

BSB Media

BSB Media

Welcome back to our podcast The Patients Speak, our guests today are Cassandra Hui of Heal Mary and Alicia Lawrence of the National Organization of Rare Diseases, NORD.

On this podcast, we combine business and scientific innovation with listening to the patient voice and how they can benefit, and how we can accelerate the patient journey. 

In our episode today we discuss rare diseases including cancer and the tools we can provide patients to find resources and clinical trials even faster and smoother to access new options that they might not know they had before. 

At the start, Mark asks Alicia, what’s a theme you often hear patients say? “I just wish people would understand blank?”

“Patients come with various psychosocial issues, socio economic issues. A lot of our patients that call us are looking for financial assistance, whether it be for regular household bills or medical bills or just as we are talking about today, clinical trials specialist.” 

• I just wish that I could find a specialist 
• I just wish there was a clinical trial to help me
• I just wish that there were more resources because I can't work due to my rare disease or I can't work because I am a caregiver for an individual with a rare disease.

Alicia shows us that in order to listen to patients we have to listen to their issues outside the illness. 

How does Heal Mary work?

Heal Mary is an application designed to connect patients, caregivers, and doctors with clinical trial data from all over the world for the best possible health outcome. 

The company’s innovative technology is based on machine learning behind it. Here are some of the ways to use it:

• The technology helps take complicated medical jargon and put it into plain English language
• Customized to the patient - meeting personal healthcare needs
• Matches to all trials so a patient can make their own choices when it comes to what trials meet their needs
• Free to use
• Speeds up the process with real-time access being updated daily through a global database. 

Examples of patients it has helped:

1. Patients who want to be able to find out what options are available to them with their particular diagnosis.
2. Patients who want to know what clinical trials are available.
3. Patients who want to participate in the research are part of finding cures for their diagnosis.

Partnering with 83bar 

Heal Mary is very excited to be partnering with 83Bar. 83Bar provides a call service in which a nurse walks a patient through the clinical trials they have chosen and double checking  their acceptance criteria that would qualify them. This feature helps personalize the platform further, especially for patients that may be in a rural setting without access to computers. 

“We happily build technology to be the bridge, but we are not the experts in the disease like people who've worked in it and have that experience and people like 83bar who have a team of nurses readily available to help patients.” Cassandra explains

How the platform accelerates a patient's diagnosis and illness to a better state of wellness:

• Taking out the overwhelm of trying to figure out the difficult things that you would have to do over and over again.
• The platform allows a patient to share certain clinical trials that they're interested in with their practitioner via email or text message. 
• A patient is able to be informed the minute a new trial matching your criteria comes out.

Alicia and Cassandra feel one of the places they have really made progress with Heal Mary’s application process is the search and seeking portion through the points made above. 

Lastly, Alicia mentioned that there is “no one patient journey, they're all on a different journey and the paths and the obstacles and the ups and the downs are certainly different and difficult.” 

She acknowledged that without the technology, patients would have to wait an extended period to get the information that is now so readily available. Therefore with technology, let's just connect with the patient wherever and however we need to speed up the process.

Places to find:

Cassandra Hui   Heal Mary

Alicia Lawrence National Organization of Rare Diseases, NORD.

If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

BSB Media

BSB Media

Hello everyone and welcome back to our podcast, The Patients Speak, where we're combining the business and science innovations of healthcare with the patient voice and how to help them navigate the system to get from diagnosis to wellness faster and more smoothly, and navigate the complicated healthcare system.

Today our guest is Andrea Wilson Woods, president and founder of a non-profit called Blue Faery for liver cancer. She is also the CEO of Cancer U, a for-profit social impact healthcare startup in addition to being the author of a best-selling book, Better Off Bald: The Life of 140 Days. It's a medical memoir about raising her young sister.

“I think you just need to not assume that you know what a patient wants, you need to listen and really listen and ask more questions,” says Andrea.

As she gives us her greatest tip for us not to assume that we know what a patient automatically wants.

“I started Blue Faery in memory of my sister Adrienne. I was 22 years old and living in Los Angeles,” she tells us.

Blue Faery's mission is to prevent, treat and cure primary liver cancer, specifically hepatocellular carcinoma through research, education, and advocacy. She started Blue Faery in memory of her sister who was diagnosed with Stage 4 liver cancer about a month after her 15th birthday. and she only lived 147 days with that diagnosis. 

In our conversation, we talk about the 20th anniversary of the founding of the organization and the many wonderful things they have achieved in that time.

• They have a research award, they give out every year on her sister's birthday. Which they have been able to increase over the years. 
• They also have a lot of patient education programs. All patient education materials they ship worldwide for free in multiple languages.
•   They have a lot of different advocacy programs.
• A year ago they started their first liver disease and liver cancer prevention and awareness campaign, and that has expanded. It is called Love Your Liver.

In summary, because of her sister's journey, her book has been instrumental in educating people who are either in sales or even medical affairs and helping them better understand the patient's journey.

She and her team have been amazing at advocating for choice which boils down to empowering patients with information just in case they feel like they may be out of options.

We also touched on her other outstanding venture Cancer U is an online platform for both cancer patients and caregivers to educate, empower and engage them to become advocates for their care, improve outcomes, lower stress, and reduce cost. 

As we conclude, we emphasize how important a caregiver's job is. Whether it's a spouse, an adult, a child or sibling, or even a parent of a pediatric patient, that caregiver is the secretary, the butler, the chauffeur, the maid, and the cook. That caregiver knows everything, so you need to get them in on the conversation from the get-go. With the goal to learn more.

She also has a tip for anybody who is going into healthcare startup world that has a tech component “Make sure one of your co-founders is a tech co-founder. It's really important.”

You can find her and her work at:

Her website andreawilsonwoods.com

Her Advocacy work Cancer U &  Blue Faery

Her book,  Better Off Bald: A Life in 147 Days

Welcome back to our podcast, The Patients Speak, where we're combining the business and science innovations of healthcare with the patient voice and how to help them navigate the complicated healthcare system to get from diagnosis to wellness faster and more smoothly.

Today we have two great guests and some interesting and timely information about how to accelerate the enrollment and recruitment of patients in clinical trials. We have Bob Baurys, the CEO of 83bar, and Matt Schwartz, the CEO, and co-founder of Virgo.

We are excited to talk to both Matt and Bob, about the announcement of their companies' collaboration called The CONSTELLATION Platform.

Bob speaks on how important it is for his company to get the patient's voice heard.

So 83bar found that they can help patients on the internet trying to find information about something they were researching for their healthcare. Engaging those patients who were doing self-education with the process would enable them to understand what's true, or not true. This would essentially enable them to walk through a decision process and then figure out where and when to engage the healthcare system so that they have maximum efficiency

Matt says that they started Virgo with a mission to improve patient outcomes and clinical workflows in healthcare by developing automation and AI tools for endoscopy. Today they provide the leading cloud video capture management and AI analysis platform for endoscopy.

This is done by employing a small device very easy to install and they connect it to any existing endoscopy system that a physician may be using. And then the device uses machine learning to automatically start and stop video capture. So the doctors, the clinical team, don't have to change anything about what they do. The procedures just automatically get recorded and securely transferred to our HIPAA-compliant web portal.

Matt says that they found different opportunities for what can be done with this endoscopy data. And a big part of that has led to the relationship with 83bar and being able to leverage this endoscopic data network to accelerate patient recruitment for clinical trials.

Together, the companies have created a collaboration called The CONSTELLATION Platform that gives us the imagery of stars connecting and aligning.

"We think it puts together the best of both worlds where we can surface incredibly high quality pre-screened patient candidates and work within the 83bar platform to get those patients properly navigated and enrolled into clinical trials," says Matt about their platform.

In summary, the partnership between Virgo and 83bar has made this that much easier with the Constellation Platform to ease the patients' journey. The coming together of the two companies has helped answer two very important questions:

1. How do we tie technology to humans?
2. How do we make technology work with empathy? 

In conclusion, Bob left us with a call to action. His advice is that we try to listen to patients better by equipping them with the tools they need to self-educate better as we strive to continue to provide more resources for especially patients who are on the self-education pathway.

Learn more at https://www.constellationplatform.com/

If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

BSB Media

BSB Media

Welcome back to our podcast, The Patient Speak, where we're combining the business and science innovation of accelerating the patient journey with what we need to hear from the patients themselves and when we listen to their voices.

And we have a great guest to help enlighten us in that area today, Pam Cusick, Senior Vice President of Rare Patient Voice, an organization that connects patients with opportunities to let their voices be heard.

In our conversation with Pam, she thinks that we need to hear how patients feel. The whole patient's experience and their whole journey. 

Rare Patient Voice carries out interviews, studies, and focus groups that really help bring out the patient's voice on how they handle their day-to-day lives together with things overlooked like how they relate with their relatives and the impact the illness has on their everyday life. 

She says that most times people focus on the treatment and cure. More often than not we overlook the impacts that a disease has on a patient's relationships and daily life.

Her primary focus is to connect patients and caregivers with all types of research opportunities which could be focus groups, interviews, surveys, clinical trials, and online communities in order to improve products or services that are being developed for them.

When they have studies to carry out, they invite patients to join in (and they pay them because patients need to be compensated for their time) because they are the experts in what they're talking about.

As we wrap up she shares that they have a wonderful patient advocacy team that:

• has connected with over 2800 referral partners around the world.
• They have over 100,000 patients and caregivers in over 750 conditions and we're in the US, Canada, the UK, Germany, France, Italy, Spain, Australia, and New Zealand.

In conclusion, our conversation reveals that the patients that share their experiences often make such a huge impact especially just to help ease the journey of a newly diagnosed patient and make their experience much better. 

Pamela Cusick

Pamela's Website

Pamela on YouTube

@rarepatientvoice on Instagram

Pamela's Facebook page

If you’d like to read more about patient empowerment – along with the 83bar patient recruitment platform – go to www.83bar.com

BSB Media

BSB Media