Welcome back to The Patients Speak, where we're combining the business and science innovation of healthcare with the patient voice on how we need to accelerate their journey from diagnosis to wellness. Our guest today is Michael Sapienza, the CEO of the Colorectal Cancer Alliance.

We had a wonderful discussion on the CCA’s most recent Colon cancer campaign that was beautifully executed by Ryan Reynolds and Rob McElhenney. Brooks Bell partnered with the Colorectal Cancer Alliance to launch LEAD FROM BEHIND to bring awareness to colon cancer, which happens to be preventable cancer!

Michael insists that patients should be more proactive and insist that they get screening, especially for this type of cancer.

Having lost his mother at 56 years old when she was screened he says that she wasn't proactive in getting a screening. As his primary caregiver, he narrowed down what patients want into two things.

1. They want to live and they want to live longer  
2. They don't wanna feel alone. 

In that respect they have multiple programs in their care pillar:

• They provide information about biomarkers, surgery, and innovations in clinical trials.
• They give psychosocial pieces if patients are suffering from depression or anxiety or even temporary feelings of loneliness.

In order to bridge the research gap, they are holding a clinical trial summit on November 10 in Washington DC. where the head of the Moon Shot will be giving the keynote speech. In order to open a conversation with all parties involved so as to improve clinical trial access and, and uptake in general. 

From the CCA campaign, there are a few lessons that he learned that Michael shared:

1. It's important to have the right partners.
2. Always keep in mind why they do what they do
3. You have to believe in the mission 

In summary, they are really passionate about getting a solution on how to get people and oncologists in America to increase the uptake of sharing information about clinical trials. They are also involved in traversing all of America, especially rural America navigating patients to get the actual screening. Providing funding through their health equity fund to actually get people in underserved communities to actually get screened. Which has given them the huge task of raising awareness.

Michael Sapienza

Michael's Website

Michael Sapienza is the CEO of the Colorectal Cancer Alliance, the largest colon cancer advocacy group in the country. He lost his mother to colorectal cancer in May 2009. He turned his profound grief into action, inspiring and challenging the colorectal cancer community, family, friends, and professional associates to follow his lead and dedicate themselves to ending colorectal cancer within our lifetime—the mission of the Colorectal Cancer Alliance. Michael founded The Chris4Life Colon Cancer Foundation and served as its President from 2010-2015. In 2016, he led the team that merged the Foundation and the Colon Cancer Alliance, creating the nation’s largest colon cancer specific nonprofit, which changed its name to Colorectal Cancer Alliance in 2017 to embrace both the colon and rectal cancer communities.

LinkedIn: linkedin.com/in/michael-sapienza-913a375

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, friends, to our podcast, The Patients Speak. We're the podcast where we try to capture both the business and scientific innovation that's going on in healthcare with the patient's voice and what we can learn when we really listen to the patient. 

My guest today is Dr. Peter Small. He's an acoustic epidemiologist by training and by trade, but he's also leading the efforts to understand and quantify what cough can mean in a patient's overall healthcare picture. His background includes global efforts in TB, he has also worked in international work with the Bill & Melinda Gates Foundation, with the Global Healthcare Initiative, and with other foundations and organizations in the area of lung and cough. 

Not only does he come from a professional background as a physician and a scientist and working in the field of philanthropy, but he is actually a patient who had a refractory chronic cough for about three decades.

He tells us that if you never cough, you'll probably die of aspiration pneumonia. On the other hand, it's a symptom of disease, if you're coughing a lot.

Hyfe.AI is trying to do for cough what the thermometer did for fever. It made it real and quantifiable and actionable. By the use of acoustic artificial intelligence to be able to recognize the sound of a cough.

 The app can be downloaded for free. Not only does it detect and quantify a cough but it's got a list of other advantages:

• It's very helpful for chronic coughers in terms of empowering them in their conversations with their providers
• Women who have stress incontinence, when they cough, it's super embarrassing, and so to be able to convey the magnitude of the problem to the provider 
•  Helps patients to take control of their own precipitators of their cough, change their lifestyle, and minimize their symptoms
• It should help drug companies start using it to accelerate the development of better technologies and drugs. 
• A patient selection tool for  recruitment and clinical trials

In summary, we see that technology has brought to the picture the central role that the patients themselves can play in selecting those innovations that make a difference. Those well-selected innovations have empowered patients to take whatever information they're acquiring, and bring it to their doctor, and insist that their doctor looks at it. 

Dr. Peter Small

Dr Peter Small, M.D., built and ran the tuberculosis program for the Bill & Melinda Gates Foundation and conducted pioneering molecular epidemiologic research at Stanford University. He has spoken at the G3 Summit and long focused on the use of innovation to improve health care around the world. Dr Small founded the Global Health Institute and worked on the use of technology to improve health care delivery in remote Madagascar and Nepal. He is currently chief medical officer of Hyfe, the global leader in AI-powered cough detection and classification.

Dr. Peter's Website

@hyfeapp on Instagram

@hyfeapp on Twitter

Dr. Peter's Facebook page

LinkedIn: https://www.linkedin.com/in/petermsmall/

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. Our guest today is Kaitlin McGreyes who is the founder and CEO of a venture called Be Her Village, a gift registry app.

“Be Her Village is my way of helping parents access the funds to pay for all of those support providers that insurance is largely not covering right now,” says Kaitlin.

Be Her Village is a gift registry for moms. Instead of a baby gift registry, they help moms get the support that they need when they are welcoming a baby into their families. 

Some of the support services we are talked about are : 

• Prenatal Care
• During Pregnancy Support
• Education On Pregnancy Matters
• Doulas
• Advocacy Help
• Lactation Consultants
• Pelvic Floor Therapists
• Maternal And Mental Health Providers

“There's something really beautiful about reinventing the village as a village of professionals that we can tap into and get the wisdom from, and get the care into the homes of mothers, and get them connected, in a really direct and efficient way,” says Kaitlin.

They have a growing network of providers across the country, in all different categories whom they match with families or mothers for free, that need a particular service in their networks.

They then help mothers get their registry set up so that they can get the funds they need to pay for those services. And if they don't have a provider in their area, they help find one.

 In our conversation, we found that this is not just a gifting idea. It is a women's health idea.

“The midwives, the nurse practitioners, the lactation consultants, the pelvic floor providers. They are so excited that we exist.”

The clinical community is excited about the existence of Be Her Village because in the areas where they can’t offer the full spectrum of support, then the patient's voice is amplified by the fact that they know that they need support, and they need support from a multitude of different practitioners.

“Parenthood Ventures, and we are part of a network of parenthood technology companies that are working to make life better for parents.”

In our conversation, we realized that parents are struggling and that they have problems that need to be solved, and that those problems can be solved through tech. She's also part of a consortium, an ecosystem called Parenthood Ventures. They are also looking for mentorship as well. So as to have a competent team to be able to carry out their mission

In conclusion, she gives us a takeaway as we sum up our discussion, “We need to engage with the people we want to help. Put your ego and yourself to the side. At the end of the day, we need to build something that people will use and will tell each other about as they experience it,"

Kaitlin 's Website

I am the founder of BeHerVillage, a gift registry platform for parents to get support like doulas, lactation care, in-home postpartum support, and more!

Kaitlin 's Facebook page

@behervillage on Instagram

LinkedIn: https://www.linkedin.com/in/kaitlinmcgreyes/

BSB Media

BSB Media

Welcome back friends to our podcast, The Patients Speak. Where we learn about the voice of the patient and how the patients can contribute more to the science and business aspects of innovation in the world of medicine.

Today our conversation is going to focus on new technologies and new platforms to improve our listening, how we really hear the patient voice and understand the emotions behind that experience?

And, our guest is Amy Brown, CEO and founder of Authenticx.

As a daughter of a surgeon with early education in social work, together with her experience in government affairs, in operations of a healthcare organization, inside a government organization to underserved patients. She attributes the birth of Authenticx to the combination of her upbringing and education.

Authenticx acquires or ingests customer conversations into their software platform, and they use machine learning algorithms and other forms of AI to listen at scale to the customer conversations to surface the big themes, and then narrate the issues which healthcare leaders need to hear. It helps them prioritize what actions they will take to improve the healthcare system. 

She highlights one of their most profound experiences is trying to bridge the empathy gap creating a very efficient, effective, scalable way for leaders to get in touch with what's going on with their customers by leveraging a data source they already own, but it feels very inaccessible to executives because a large telephony platform or large company might take millions of calls or chats every year.

We talk about The eddy effect which is when a customer gets stuck in their journey, and end up putting forth more effort than should be required to solve a single problem. And how leaders use Authentcx to make changes in their operations to try to smooth out that customer journey. It has helped health practitioners change the behavior of the company. 

She gives a tip on how healthcare executives, and providers, think more about the patient journey, rather than simply their little segment of it.

In summary, we've been talking about the power of listening, and the criticality of listening to patient voices in a different and new way. This way is scalable and provides strategic value to the leaders who are empowered to set policy for healthcare consumers. And, the fact that more of those leaders can listen and get closer to the voice of their patients. The more informed, the more empathetic, and the more enlightened they'll be as they set forth policy.

As we conclude, she encourages us to go back to our organizations and find out how we listen to the voice of our customer today. Is it primarily through surveys? Is it primarily through interviews or anecdotal conversations? And, is there a more systematic way, and a more ongoing cadence that the organization can take to listen to the voice of their customers?

Amy Brown

Amy's Website

Amy Brown is the founder and CEO of Authenticx – the software platform analyzes and activates patients’ voices at scale to reveal transformational opportunities in healthcare.

BSB Media

Welcome back friends to our podcast, the Patients Speak. Where we learn about the voice of the patient and how the patients can contribute more to the science and business aspects of innovation in the world of medicine .

The goal is to  underscore the patient's voice in drug development, new device creation, new diagnostic development, and even innovation of support programs or apps.

Our guest today is Wendy Bjork who is self-titled as the Empress of MS. She has been living with multiple sclerosis for over 35 years, and has now turned to empowering other patients. She's a pioneer in advocacy and mentorship, and she's even authored a book called Fired Up! She is also a frequent contributor to the National MS Society's Momentum Magazine, and is regularly invited to expert discussions to share her story.

Today, we talk about what a healing journey encompasses. It is not just about one thing or one quick fix. She breaks it down into two parts.

• It starts with our mindset, how we're treating ourselves, and how we talk to ourselves. She emphasizes how it makes a huge difference. 
• Then the team that a patent needs around them. From a medical professional, to their neurologist, and the other people in their life to help fill in those other gaps to carry on with their journey.

In some of the other parts of her program, she highlights some of those gaps that need filling.

• One big gap is nutrition.
• Another gap is the support part of it. A lot of patients feel unsupported. Some spouses even leave because they just can't deal with this diagnosis

The MS Society does a good job of facilitating a lot of good information. Their website has tons of information to seek out. That's a great place to start, especially if someone's newly diagnosed 

In her book Fired Up!, she let us know that MS isn't a death sentence, we're here to live our life even when life throws all kinds of challenges at us. So it's up to us to be our own advocates and stand up for ourselves.

She tells us not to say we're suffering from a particular illness. She prefers using the word "Navigating" as opposed to living with a condition. Because we have to see the illness as a separate entity otherwise it just becomes part of us.

On her website, she quotes "I'm not a product of my circumstances. I'm a product of my decisions." Mainly because each day is a reset and we have a whole day of 24 hours full of choices.

In conclusion, she gives us a few things to take  away from this conversion 

• She is really encouraging people with MS to step into that development process more by having conversations with the pharma companies. 
• And reminds us that it comes down to all these different components of living a healthy life. In addition to what medicine has developed for us.
• Everybody needs to give themselves grace. And to try new things. 
• That change might not be felt until 90 days later. So be patient with ourselves and to give ourselves grace.
• Be kind to somebody. Do something random for a stranger, because you might be the only person that talks to them nicely that day.

We can find Wendy and more on her patient advocacy and coaching work on her website:  heartsofwellness.com



Wendy Bjork

Wendy's Website

Wendy Bjork, The Empress of MS, is the founder of Hearts of Wellness.com.

Wendy on YouTube

Wendy's Facebook page

@theempressofms on Instagram

https://www.linkedin.com/in/wendybjork/

BSB Media

Dr. Mark Pimentel, Cedars-Sinai + Matt Mitcho, Gemelli Biotech

Welcome back to one of the first episodes of our new podcast, The Patients Speak. We're combining the business aspects of innovation and the science of innovation with the patient voice and what the opportunities are to incorporate more of the patient experience into our strategies and into our work.

Today, we're joined by Dr. Mark Pimentel, executive director of the MAST( Medically Associated Science and Technology) program at Cedar Sinai. And, by Matt Mitcho, CEO of Gemelli Biotech. Dr. Pimentel is also a co-founder and a member of the scientific advisory board at Gemelli.

They have been working together since 2018, as founders of Gemelli Biotech, bringing trio-smart, which is a SIBO breath test that identifies gasses that are associated with SIBO, hydrogen methane, and hydrogen sulfide to market. Also, IBS Smart, a blood test that measures two antibodies elevated in people that had a previous event of food poisoning or identifying post-infectious IBS, IBSD specifically.

In addition to the clinical, research, and technology assessment, we talked about incorporating the patient voice in seeking proper treatment for IBS patients, which Dr. Pimentel highlights that as a clinician scientist, you are obligated to think around the patient and outside the box.

He gives some tips to clinicians:

• Have the ability to compassionately listen to the patient population and then develop innovative tools that help them get to the resolution more quickly. This aids with  patient motivation and resilience 
• With the volumes increasing in treatment clinicians see patterns and upon seeing those patterns, there comes a need to have as many clinical trials as you need to up until the science stacks up, which most times is a long and dedicated process

Dr. Pimentel gave us tips for tackling systemic challenges like difficulty in getting an appointment with the doctor or not having enough time with the doctor.

• Have quality time for example an hour for the new patients
• Educating their patients empowers them with the information out there and this gives them confidence when they visit the doctor.

Matt insists on being patient-centric. In making sure that the culture that is created within the organization focuses on the patient, and getting the patient an answer,

In conclusion, we spoke about what's on the horizon that we should be watching out for? In regards to technology and new science.

• Precision medicine: Having more knowledge about the microbiome in IBS,.
• They already have one product that looks very promising for the diarrhea side on the basis of exactly what this breath test shows. 
• They plan to spend a lot of resources educating patients and providers to the three gas breath test 
• Exploring telehealth platforms that will give patients that don't have a provider, greater access to tools that they may find benefit from and continuously exploring partnerships for scale.

It really comes down to accessing more physicians and making them aware of what they are doing. Alongside making patients aware that they have access to these tools and can go ask their providers about them. And then making sure that they are prepared for the demand on the back end. Having better tools to give folks patients a positive diagnosis, which will allow them to find resolution more quickly. 

In summary, we narrow it down to the education and empowerment of both patients and clinicians.

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

Listen to The Patients Speak

Welcome friends, to our new podcast, The Patients Speak, where we combine the business and science innovations in healthcare with the patient voice, the patient experience, and activating patients to be more involved and more empowered in their own healthcare. 

Today's guest is Shefali Shah, she's global VP of market access and commercial effectiveness for a company called MindMaze, a brain technology and neurorecovery company. She is an expert in evidence-based strategies for digital healthcare. Her background includes market access for pharmas, including GSK, Novo Nordisk, and InVentiv Health (now Syneos)

Shefali defines digital therapeutics as evidence-based therapeutic or an intervention that uses software to manage or prevent a disease.  She emphasizes that MindMaze combines different modalities to create an immersive experience for the patient. So it is not just about the software, it is also about integrating the therapist, the care team, and the hardware.

Shefali explains that as much as the games are a basis of their platform it does require a lot more than a game. They understand that patients are going to learn differently and are going to need a lot of different modalities to overcome some of the challenges

We discussed how MindMaze built a system incorporating the patient's voice and she gave a few examples of how they do it.

• Many members of the product team themselves have survived a stroke or other traumatic brain injuries
• Beyond the team, they engage patient advisors to help in developing the product
• Bringing therapists into the product-design process
• Patient research by listening to unfiltered recovery stories on social platforms 

She acknowledged that the treatments, therapies, and medicines patients need across each of these stages are very different. So they take very real-world experiences and then connect the inpatient and outpatient and home-care settings -- all of those in designing the trials.

We dove deep into those unforeseen challenges in the patient journey for example:

• When a patient almost lost their house
• Or their caregivers left them because they could not afford a nurse to come in
• They were just tired of taking care of the patient themselves
• Or their insurance just stopped covering because they went from one set of care to another.

We also spoke about the challenges she is facing in bringing these products to the market.

• There are market access challenges around the different reimbursement pathways that have been designed for the different sites of care.

In summary, she says part of the solution is to create Therapy Integration Managers that take the patient from one site of care to another. They would be considered as a medical concierge to help patients transition through different sets. 

In conclusion, we talk about collaboration with different organizations to bring this category of digital therapeutics to life. The APTA and the AAN clinical societies, and also patient advocacy groups, would go a long way to help focus on the entire patient journey.

Shefali Shah

Shefali

BSB Media

Welcome to one of the first episodes of our new podcast, The Patients Speak, where we combine business and science innovation with how patients need to be represented in research and marketing. One of the topics we discuss today is how to make sure the patient's voice is heard all through that research process, on into the development and commercialization of new products, with our guest, Michael Biarnes.

Michael is the Manager of New Products and Business Development at Janssen, one of the pharmaceutical companies of Johnson & Johnson. He is also the author of Redefining Success: Stories, Science, and Strategies.

Today, he shares that he has been lucky to work in cancer research, clinical diagnostics, neuroscience, and cardiovascular disease. Michael really talks to us about how he has made sure that the patient’s voice is heard throughout his almost 10-year career.

According to Michael,  it is our responsibility that the right medicine goes to the right patient by introducing diagnostics, new biomarkers, and new signals to make sure that doctors and patients can make informed decisions. He also highlights some tips to help in that light

• He stresses the importance of making sure that any decision that we make has the patient at the center.
• Michael’s tip is to have all sorts of teams within your company incorporating patient insights and voices into decision-making to ensure that as a new product is developed and brought to market, it is done thoughtfully and it addresses the pain points for the patient's journey to have an improved outcome.

He also has tips on decision-making for those responsible for clinical trials to better engage, not just with patients, but with communities. 

• That they are responsible for diversity, equity, and inclusion while carrying out trials.
• He reminds them to engage the trusted advisors and or the trusted community leaders
• Tell them to educate and give disease state awareness, as opposed to just talking about products.
• They have to understand the patient's journey.
• They have to listen in order to make the needed improvements in the journey of their patients.

In summary, Michael is happy about the movement toward precision medicine and the amount of foundational work going into better understanding the neurodegenerative space. And also how major competitors have come together to collaborate on massive initiatives to share clinical trial data and do a deep dive into why our clinical trials failing and figure out what to do that will truly make a difference. And the continued growth in technology to aid in bringing more patients into clinical research.

In conclusion, In order to develop our own emotional intelligence, especially as we listen to patients, to be better listeners he urges us to “Be like a scientist and run some experiments” as per the title of the 11th chapter in his book.

Michael Biarnes

Michael Biarnes is Manager, New Products & Business Development at Janssen, a pharmaceutical company of Johnson & Johnson.

Michael's Website

@michael_biarnes_author on Instagram

The Patients Speak

The Patients Speak website

BSB Media

Welcome friends to our new podcast, The Patients Speak. As we have conversations with innovative healthcare executives about what they learn when they hear the patients speak. 

Today's topic is about listening while commercializing new therapies. There is market research, there is strategy, there are marketing programs, and there are opportunities to listen and learn all through that process. 

Today's guest is an expert in this field.  Keli Walbert. She is Executive Vice President of Horizon Therapeutics she has also been selected as a Woman of Distinction by Medical Marketing + Media. 

Based on her career experience, she tells us what we can learn from the patients themselves

• Her first lesson is to remind us not to think of patients first as patients. Think of them as people and consumers.  Because it's important that we look across their lives to help understand their experience. This enables us to bring programs and offers to them that can help them more broadly than just their disease state.
• Secondly, to bring some awareness to the diseases and even to the ways, it affects their life.  In a more significant disease state,  Horizon Therapeutics does ethnographic research, where they go into people's homes. They go with them through their disease journey so as to understand more holistically how their life is affected by the disease that they have in order to then identify ways to bring solutions that help them beyond just the medicine.
• Thirdly, to recognize that patients have a life outside of whatever they're dealing with and doctor's appointments and pill bottles.

We then talk about one of Horizon's products called Tepezza which is for thyroid eye disease. It is a first-in-class novel monoclonal antibody that is treating thyroid eye disease. And it's the first and only approved FDA therapy for thyroid eye disease. She recalls that when they brought it to market, they actually changed the point at which they believe treatment should occur because they learned that the physicians that the patients were seeing didn't necessarily fully appreciate the symptoms and the impact that this disease was having on patients’ quality of life.

So they looked at the patient journey and realized that it was absolutely essential that there was individualized, personalized care for every single patient to help them navigate the access barriers so that they could ultimately get access to therapy. 

Through Horizon Therapeutics' journey, she shares with us some golden tips and what they are willing to do for every single product at Horizon essentially because our healthcare system is complex and it's increasingly difficult for patients to navigate

• Which is essentially providing support beyond medicine.
• Their intention is to give patients the tools and the support they need in order to advocate for themselves. If patients can advocate for themselves then, they are more likely to get access to therapy. 
• They intend to provide support, education, and one-to-one attention to help patients understand their disease and understand what they need to support themselves and also understand how they can get access. 
•  Patients that suffer from rare diseases need to know that there are legitimate organizations that are behind the development of these products so that they feel safer in trying a novel therapy. 

In conclusion, we talk about one of the things that makes Horizon different: The CEO is also a patient. And the very first product that he brought to market, was because he saw it through the eyes of a patient. In many workplaces people are asked to leave our personal lives at the door and show up with their business selves. But not at Horizon. Everyone is  encouraged to bring their personal experience into the workplace. Because they really do believe that their personal experience as caregivers and as patients actually help them as employees do a better job and meet the needs of their customers more effectively.

Resources:

Keli's Website

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 to our new podcast, “The Patients Speak: Healthcare Innovations, Accelerating the Patient Journey.”

We share interviews with healthcare executives and medical providers. What they hear from the patients they serve and how their innovations will improve the patient's journey.

Produced by 83bar Inc.,  with best-selling author, Mark Stinson.

Our podcast is unique because it combines Business innovation with the Patient angle. In each episode, we’ll share:

- Patient insights

- The process/approach to solutions

- How patients are involved in development

- Product/service/device innovations

- How to accelerate a patient's journey

- What is needed to elevate or advance innovation

- Future vision

Join us when we interview another innovative healthcare leader, who is working to accelerate the patient journey – and what they hear when they listen to the patients speak.

You can listen wherever you get your podcast, including Apple Podcasts, Spotify, Google Podcasts, Amazon Music, and iHeartRadio. Subscribe now so you won't miss an episode of “The Patients Speak.”

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