Are cancer non-profits dead? What does their future look like in the post covid era?

The following is transcription of this video.

Hi, Charlie Coleman here, CEO and founder of CancerLife today’s blog post  on some news that came out from Susan B Komen the famous breast cancer non-profit in which they announced that the Philadelphia Pittsburgh operation is going to be closed. This is big news, Susan B Komen obviously everyone knows for many years has raised billions and billions dollars, uh, to medical research. Um, you know, one of the first organizations began their fundraising around five Ks and walk for breast cancer. That was their really their primary source. And then obviously, yeah, adding the famous pink ribbon to every consumer brand out there, um, you know, going through directly to corporations to support breast cancer research, which was quite innovative. I want to give them kudos those four, you know, at least the money that they were raising, um, was coming from across, you know, multiple avenues and yeah, and spectrum of providers.

I mean, there’ll be a lot of folks that talk about the fact that only 30% or less of their money raised each year goes to actual research. That gives you the sense of how big their fundraising operation is but I mean to say that, you know, that, that they’re in yeah, haven’t contributed to, um, the breast cancer causes a little, I think, um, disingenuous, but one of the things that I’m wanting to talk about with this blog post is the question that I pose, which is our cancer nonprofits dead.

I think over the last three years, CancerLife has reached out to every cancer non-profit of significance. It’s both the big ones and we all know who they are. I mean, I’ve been down to Atlanta at the American cancer society about five years ago, trying to do a partnership, um, Susan B Komen living beyond breast cancer, um, you know, cancer support community, which was the Gilda’s club.

 I’ve spoken all of them and I even went to other smaller ones and the thing that I tried to explain to them was that I felt that their business model was changing in terms of fundraising. I don’t believe in even this is before the pandemic that people have the time to do 5k events. I mean, live strong is another prime example of an organization, you know, um, Lance Armstrong, bike races, um, and that whole community. And when, when Lance left, you know, I think when after Lance left live strong, I think in their major, you know, bike race event, I think it was in Austin, maybe it was in Dallas. Um, I think they lost like $1.6 million on just on that Ben alone. So, you know, the reality is, is, is I felt like these cancer nonprofits days were really numbered that ultimately they had to embrace a new business model.

And that business model is data and research. Um, you know, it’s shocking to all the nonprofits that I’ve spoken to over the years. There’s how lack of, of community that they’ve really created. I mean, you know, a lot of them don’t even are connected to patients they’re connected to the patient’s families. Maybe they, they, you know, they get these donations after the, the person has passed on, you know, their loved one has passed on. So they donate in their loved one’s honor, but they really never really engaged and built a decent community. I mean, some of them have newsletters, um, but you know, they rarely do. They update the data in terms of what is there, when we try that, you know, for example, when we tried to engage one of the major breast cancer nonprofits, we asked them what their open rate is.

The open rate would be a newsletter email, like what percentage of people were opening your emails and they couldn’t even answer it. They don’t even track the data. So they send out these newsletters. And, you know, I guess what I’m saying, you know, to folks out there is I believe that, you know, the traditional methods of cancer nonprofits, uh, fundraising is by going by the way, the dinosaur, and if you’re an existing cancer non-profit, and you’re not thinking about research data and becoming a data company, you’re really going to go by way of Susan B Komen, as I’ve tried to tell you all before, you know, the cancer platform is designed to collect patient reported outcomes, data, which doesn’t exist, which is the hottest, most important data set that pharmaceutic companies are dying to understand the patient experience. So for cancer nonprofits, you know, there’s a few out of out there.

Uh, I can think of longevity, yeah. Is one, um, you know, a couple of and lung cancer because immunotherapies and Keytruda is so critical and there’s so much money around. And that, um, longevity is one there’s, there’s a couple more that are really pushing the envelope with research. Um, the multiple models, the Loma foundation is probably the premier cancer nonprofit in the space today. And they’ve been working in genetic cancer data for like five years, years now. So, you know, they’re, you know, they’re it, when it comes to, um, you know, research, but I’m telling you all you, non-profits out there. If you’re not thinking about data research specific to patients, um, you know, you’re going to be closing offices. So for those, uh, patients who think about, you know, these nonprofits and what it all means, um, you know, it’s a new day and, um, the best way that you can contribute money is great. We know that there’s a million places to take it. I recommend donating to your local hospital, um, you know, to the doctor or, or cancer team that, that helped you. Um, but if you want to really get involved in, in non-profit work, you know, come to CancerLife, you know, engage on our platform and help other patients. I think that’s the best way moving forward. Thank you.

What is CancerLife’s competitive advantage in the digital health market?

The following is a transcription of this video post.

So what the question is, why is clinical validation so important to CancerLife and its strategy going forward? Well, I think, I think this is something fundamental and one of the things as I learned or realized, I would say back in early 2016, as I saw the digital health market sort of maturing, I realized clinical validation is going to be the difference between winners and losers in this space, meaning clinical validation we needed to run and show meaningful, measurable improvement in a IRB funded or IRB supported study in order for us to really make headway both from an perspective of investors, but also more, most importantly, from the perspective of cancer patients, the importance of clinical validation is cannot be, you know, kind of under stressed here because in order for get to get patients like you to even consider CancerLife, there’s gotta be a compelling reason.

You know, it’s not just like a new, you know, a consumer app that you’re willing to give a try to you’re, you’re overwhelmed. You may already be part of a Facebook support group. So you’re getting the emotional support that you need from other patients. Why should you, should you be using CancerLife? If you’ve got something else that you’re already using, or I’m just too tired or I don’t have the emotional energy to even try something new. And I totally understand that. And that’s why I realized in order for me, to convince new patients, to give, CancerLife a try, I needed to show them that there was a meaningful, measurable impact in their quality of life in order to convince them to give it a try. That’s why we spent the last three years in our clinical trial at John Wayne Cancer Institute.

It is a Phase 2 study observational in which we tracked nine 119 patients. We recruited them online and, and brought them into the system. And based on quality of life metrics called the fact G survey. We measured them in a 14 question survey metrics. And based on that study, we showed an average improvement of 25% in quality of life metrics and a reduction in symptom burden by 70% symptom burden, meaning the number of symptoms reported, um, each time dropped by an average of 70%. And we know that symptom burden has a direct impact on the quality of life. It’s this result of this study that we feel like it’s now time to launch the cancel life platform to the rest of the universe if you will. Um, secondly, when it comes to our randomized control trial, which is what would be called a phase three study, just like in pharmaceutical development R and D development, we are going to go through a randomized controlled trial of roughly a hundred patients at a vulnerable population in Trenton, New Jersey at capital health.

Um, so this is the highest level of clinical validation where you hope to start that, uh, January of 2021 and be done by June or July of, uh, 2021. And from that, we believe we’re going to replicate our findings and show at least a 20% improvement of quality of life and really make CancerLife a true digital therapeutic. It will be at this point where CancerLife essentially will achieve, uh, something that no one else has achieved, which is an app that has measurable a measurable app intervention, digital therapeutic that improves Quality of Life.

So that’s why in order to get all stakeholders in cancer care to recommend CancerLife, we felt like it was essential that we go through a fully validated clinical validation process and we’ve already achieved Phase 2 something that we can now share publicly and now it’s that we’re going to be moving towards a phase three randomized trial, which is exciting. We are on the precipice of something really magical. And for those of you who are considering CancerLife, please give us a try. Thank you.

Why doctors treat tumors, not patients and how CancerLife can help change that?

The following is a transcription of this video.

Here’s a question? What is the current state of cancer care today? What is Cancerlife’s role in precision medicine ?

So cancer care today is going through a fundamental shift and revolution in care. Immunotherapies have changed the game. We call this precision medicine and it’s because in the past chemotherapy drugs, we’re targeting the kind of the entire system, right in a lung. You know, you took a drug in the lung cancer and you focus a drug in lung cancer, and then you took a separate drug and did kidney cancer. Well now, based on the precision medicine revolution, DNA sequencing, and it being to identify targeted markers, uh, drugs are now targeting specific genetic markers and the, you know, the, the tumor can mutate and those markers can be revealed. Um, and once doctors are always, that’s why you guys are going through so many tests is they’re always trying to see what markers are in that tumor that they can target with immune-drugs, Keytruda being the number one first to market revolutionary drug, probably number one drug in the world right now for their PD one marker, a target.

But the bottom line is doctors today treat tumors. They don’t treat patients. Now, let me say that again. Doctor treat tumors. They don’t treat patients and that’s okay. That is not, you know, no, some attack on oncologists, not at all, but it’s important for patients to understand that that’s where your doctor’s head is, right? There are focused on that tumor, the focused on those markers and the infinite amount of knowledge that is happening right now that is required by your physician. To be able to treat tumors in this way is exponential. They are truly overwhelmed. Unfortunately, their documentation requirements, um, that they have to do using their electronic medical record is painfully slow and burning out doctors left and right, they’re really, truly, um, overwhelmed when it comes to just the day to day grind of delivering cancer care. And that knowledge requirement is only going to go up.

I think I saw a statistic. That’s saying doctors only spend 12 minutes a month with each patient. Think about that 12 minutes. And I unfortunately think that that number is going to drop by 30% over the next few years. They’re just not going to have the time, but for a patient who’s going through treatment right now and maybe a CancerLife user. Um, you have to understand that you have to help your doctor help you. They’re not mind readers. They don’t know what’s going on in your life. You’re waiting for them to ask to probe deeper, to, to really understand what your values are. And the bottom line is your values change over time, right? I mean, you started when you got diagnosed, your value, every cancer patient has the same value on day one, which is cure me, get me back to my life that I was living.

I was really happy. Um, but you know, you take cancer care over 18 months and you know, the side effects, the symptoms weigh you down, you’re in pain, your fatigue or nauseous, all these things, 18 months later, you’re, you’re just exhausted.

And that’s where CancerLife comes in, which is collecting quality of life, data, sharing your reports with your doctor, you know, and being, being able to communicate your value of what quality of life means to be able to track. Are you able to get through your routine your every day and if you’re not use the CancerLife platform to collect this data, and then, you know, as we show you inside the platform, we were going to be showing you what other cancer patients are experiencing, not just from day to day symptom management perspective, but overall quality of life across specific, um, tumor types and, and treatments so that you can go to your doctor and say, Hey doc, you know, I’m looking at the camera, it’s life, community data.

And it’s telling me that on my same treatment, looking at 150 plus patients, they have 30% higher quality of life. I do like maybe is there another option for me? Can we slow down? Can we course correct? Can we lower the dosage? I mean, there’s a million things that, that your doctor can do, but it’s up to you to bring that data to the table. So to answer that, you know, what is this state of cancer care today and what is, you know, CancerLife, his role in the precision medicine revolution? I think it’s, it’s really finally bringing quality of life to the table so that each patient can be, you know, looked at individually and be able to share that data. So your doctor truly knows what your values are and when you reach that breaking point and really want to, you know, take a step back and just enjoy every moment, um, in your life with family and friends, being able to say to the doctor, Hey, you know, look at this quality of life data, and let’s adjust my treatment plan. That’s what a CancerLife’s role is within the precision medicine revolution. Thanks a lot.

The 8 year Journey and the Mission of CancerLife : What have I learned ?

The following is a transcription of this video.

So it’s been eight years. Why has it taken cancer life this long, to reach this point? It’s a good question. So the purpose of this blog post is to give you a really quick synopsis of my eight-year journey as founder of CancerLife. What’s ironic is that even after eight years, there’s still no solution embedded in the system that truly manages and essentially improves patients’ quality of life. There’s no competitor. There are a few providers that are trying to improve symptom management. Remote Patient Monitoring finally has billing codes and telemedicine seems to be the norm now, but this does not seem to be scaling very rapidly as standards of care. Why is that?

The issue is that CancerLife is essentially trying to solve a really hard problem, which is symptom management and cancer care today. And the only way to effectively address symptom management is with really good data, right?

Why is Symptom Management so important for cancer outcomes?

There was a study in 2017 by Dr. Basch at Sloan Kettering, where, when patients were emailed a survey once a week, they shared that survey data with their care team for roughly six months. And then they showed an amazing 36% improvement over standard of care and a 50% survival rate, 50% improvement in survival, compared to the standard of care cohort. That’s amazing. That’s kind of been the foundation of everything, but for eight years, the issue is around great data, right?

In this study, patients were emailed once a week and it was something like a 27 or 32 question survey. So, the problem is this is cancer. Patients are exhausted, fatigued, overwhelmed, and to get them, even when they know it’s in their best interest to collect their data, they just don’t do it because they’re exhausted.

 Collecting data from Cancer patients is really hard!

And when you’re fatigued and nauseous, why do I want to sit and try to answer 27 questions every week? It’s just it’s too much. So we kind of figured this out that ultimately what patients don’t want is to have to be, you know, don’t, you can’t just throw them in front of a, uh, symptom burden map and ask them to fill it out every week.

It just doesn’t work trying to text them and remind them it’s just going to annoy them. So we had to solve the data collection problem first, and it was only through a lot of trial and error that we figured out that the way to do it and the way cancer life does it is through a social network experience. Just like posting on Instagram, you’re posting your health status with many other patients and getting social support.

 Why is Cancerlife Different? How is it solving the problem?

That’s the net benefit to you in the short term. And over time as you interact on the platform, we’re able to build these reports. We had to figure out the data collection platform or problem first, and then we could move on to validating that problem. So where we are today is 2017. We launched our first clinical trial. We identified the fact that patients love the social support aspect. We built-in 2018, this amazing social network that has followers and everything you can do on Facebook to CancerLife can also. Then we had to go through relaunch our study again, and I can announce that just based on our initial phase, two results showed a 25% improvement in quality of life, per participant who went through our trial.

And now today we’re reaching the final milestone, the final pinnacle of clinical validation of a randomized control trial, and actually a vulnerable population.

Cancerlife on the road to a medical device and FDA approved “digital therapeutic.”

We’re going to take cancer life into a vulnerable community. We’re going to try to address, or I feel like we’re going to address the disparities in care and improve the differences between black and white in cancer care. It’s just insulting. It’s 50% worse outcomes for African American, uh, black patients. And we’re going to have to bring cancer life into this center and see if we can’t improve outcomes for this vulnerable population in a randomized control trial. Um, so, you know, eight years, yes, it’s been a long journey, but it’s been an incredibly rewarding one. The people that I’ve met have been incredible, uh, their friends, um, you know, every conference I go to are people I’ve known for years. Um, it’s been great, terribly hard. It’s been filled with rejection, but as the famous stoisist Marcus Arrelus has said, “the obstacle is the way” meaning the journey, the journey you take is, is where you get meaning.

8 Years isn’t really that long when you consider the problem and the people we are helping!

I couldn’t be prouder of where we are today and even after eight years in healthcare, you know, eight years is a drop the bucket. Yeah. I’m in cancer care. And, you know, from a perspective of a new therapeutic, you know, eight years is actually a fast track to a new drug. Now we’re not a drug, but we are going to be a validated therapeutic that improves outcomes for cancer patients. So, anyway,  just like to say that eight years may seem like a long time. Still, it’s a drop in the bucket when you consider the important problem we’re solving and raising the quality of life for potentially millions of cancer patients is well worth the, um, the shoes of walking through this amazing journey.

So thank you very much.

The “More you Share the Better your Care”. What does this mean to you?

The following is transcription of this video.

So we’ve changed our tagline for our company, um, from improving quality of life. I got to get a new poster too. The “More you Share the Better your Care”, That’s the new mantra around the cancer life community. And I’d like to explain what that means.

Well, it means that it’s so important for cancer patients to understand that the more they communicate what’s going on with them, the better the doctors able to respond and to address those issues specifically that are impacting your quality of life. Well, why isn’t it happening now? And I think that comes to a, just a disconnect between patients and doctors. It’s kind of like, don’t ask, don’t tell policy, um, you know, doctors don’t ask and patients don’t tell it’s like, uh, you know, patients have this expectation like, well, and at any moment that, you know, the doctor’s going to ask, you know, how am I doing or when they say, how are you doing?

You say you feel fine because you’re in that doctor’s office. And you’re thinking, I just want to know what the results of my scan, you know, that is in your hand, doc. I just want to know that I’m not thinking about all the other shit that I went through, you know, the last two weeks. And that’s a real problem. And doctors, you know, they ask, you know, how are you feeling? And you say fine, and then he, or she’s done and wants to get right to the results. So there’s really a disconnect moment.

That’s why the cancer life, you know, patient summary report is so powerful is that it’s a simple document that a doctor can look at and then three seconds determine here are the three things that I need to address your quality of life.

You know, I’m going to give you some scripts for, to handle this issue and you’re done. But if there’s never that engagement conversation going, uh, if it is it’s over too quickly and frankly, you know the question, how are you feeling? It’s just, it’s, it’s a numbing. It’s both a numbing feeling and no nothing numbing response.

The patients feel when someone asks them, because it’s called the symptom burden. There are 15 different things that, you know, where do I begin as kind of like, you know, how much time do you have doc? Cause I could talk about this all day long, but, and but, but patients don’t want to burden their doctor with this information. So that’s the one thing, the more you share a bit better, your care is the concept of, you know, there is a direct impact of your quality of life.

When you share this data. It happened in the groundbreaking study at Sloan Kettering, called the Ethan Basch, study of 2017. Patients were surveyed once a week, they filled out a 27 questions, survey burden questionnaire, and that data was presented to the doctor and the doctor addressed issues, 36% improvement in quality of life compared to folks who didn’t get that survey. So, and we at John Wayne, our initial phase two study showed a 25% improvement. So just by using the cancel life app two times a week, two times a week.

The more you share the better your care, there was a direct correlation for those who use the platform the most and their quality of life scores. So inside of cancel life, as we collected that. So that’s the concept around, the more you share the better your care, the final piece, which speaks to, if you look on our blog, um, you know, uh, Paul Zack, who is a world-famous, uh, neuroscientist, who discovered oxytocin, which is the love molecule, that thing that you feel when you hug somebody, um, talked about the important, you know, the value of when you share something. Someone understands you. There’s a neurochemical response of oxytocin released inside your brain.

It literally makes you feel better. So the more you share the better your care, meaning the better you’re going to feel. The more you share a better care as a foundation statement that speaks to the heart of the value of cancer life, the more you put into cancer life, the greater the return back to you. And is it true? We call data it a feedback loop, that the more you put into it, the more you get back that there’s a direct correlation in our data that shows the more you engage in the platform, the greater benefit you have to you directly. And that’s what CancerLife is all about.

As we are about to publish our phase two study and moving on to our randomized control trial phase three study, a randomized control trial to reach final clinical validation that should be achieved by the summer of next year. And like I said, the more you share the better your care.
Thank you very much.

WHY I WANT GOOGLE AND BIG TECH TO HAVE ACCESS TO MY MEDICAL DATA AND YOU SHOULD TOO!

As we enter 2020, healthcare data has become front and center into the discussion around Big Tech working with hospitals medical record data. Google CEO said just yesterday @ Davos that “healthcare offers the biggest opportunity for the company over the next 5-10 years.” This after the recent discussion around their relationship with ASCENSION where Google has access to millions of medical records WITHOUT patient consent. Apple and AWS are also involved in several other public projects. Facebook is quite as a mouse but I am sure they up to something. But they are a different use case altogether. #advertising

As someone who has worked in the Cancer Industry for the last 8 years, I am thrilled that Big Tech entre into this market! Why? (even though in a lot of ways my company will be competing with them). Why don’t I share the “outrage” like many healthcare patient advocates? Why don’t I personal care personally but are excited at the idea for millions of cancer patients that Google, AWS, Microsoft and Apple have access to their de-identified data?

Because the IT systems used in hospitals are so bad, WE NEED THEIR HELP! I firmly believe the outrage should shift to a BIGGER problem. The problem is interoperability of EHR data and utter travesty of the technology behind these companies like EPIC. EPIC which has been built using 70’s software code and flat file data structure with 16,000 tables gained an almost universal MONOPOLY in the healthcare IT space by a “groupthink ”buyers mentality. Remember the 70/80s moniker by IBM…”No one ever got fired for buying IBM”…Well the same thing happened in Healthcare IT space over the last 20 years. “No one ever got fired for buying EPIC” (There may be a few exceptions where EPIC installations cost overruns bankrupted several health systems and hospitals.) The EHR systems were designed to speed up billing electronically and allow hospitals to upcode (more money) and get paid faster. Believe me, I know. I sold them in the late 90s. Clinical research and decision support was NEVER discussed as a reason to implement them.

Today, CEO of EPIC Systems Judy Faulkner, has sent letters to all EPIC customers NOT to support the HHS new rules on data blocking. https://www.cnbc.com/2020/01/22/epic-ceo-sends-letter-urging-hospitals-to-oppose-hhs-data-sharing-rule.html That this would “put patients at risk” for privacy issues. What a joke? Doesn’t this sound like a business move to maintain their industry control that they have enjoyed over the last 20 years with over 35B in government incentives that they and she has personally benefited from?

As a cancer advocate one of the biggest problems, I have seen is the lack of good data that oncologists have access to. Looking a longitudinal data across patient populations within a health system is NOT POSSIBLE with EPIC or other EHRs. (#FlatIronHealth) A doctor cannot look at his patient’s data and compare him/her to how others are doing. What other treatments may or may not be working elsewhere. 2nd, 3rd line treatment decisions are made mostly in vacuums. Which is exactly how pharma would like it but that for another blog discussion. The bottomline is that EHR companies either have refused to build or are unable to build because of the lifecycle technology problem with better research tools for doctors. Here is demo of the Clinical data tool that Google has built using search and machine learning natural language processing technology to help clinicians do their job better and faster! Why is this a bad thing?https://www.youtube.com/watch?v=P3SYqcPXqNk The solution even is able to search handwritten notes in a patient’s scanned PAPER chart! Do you know how hard this from a AI perspective? handwritten!

Another key functionality that this tool will solve is that immunotherapies require genetic markers identification of the tumor or person (BRCA+-). Genetic data is not stored in the EHR in a reportable format. The genetic data is basically a PDF report sent by the lab company such Foundation Medicine or entered manually into EHR “Patients Notes” section of the patient’s chart. Matching these markers to new therapies is another manual process for doctors. This Google Clinical Search tool will be able to do this instantly like searching for a location on google maps.

Healthcare and AI are perfect fit. Technology providers willing to invest the hundreds of millions of dollars to pay for the most expensive machine learning software programmers (Google DeepMind lost 570M last year) and potential to benefit millions of people lives. Isn’t that what healthcare innovation is all about? Why would we want to block that? Because of consent? Isn’t that an easy thing to fix? What about a a consent form data sharing paragraph triggered at waiting room check in“? #Problemsolved Also the data that Google and other companies are accessing are anonymized anway! So what’s the problem?

This AI Healthcare social benefit can only be achieved if we give Big Tech access to this data in standard data scheme such as the FIHR format which took years to put in place. Blocking this access would be a detriment to patient outcomes specifically to our most vulnerable patient populations who have overburdened clinical staff. If AI can help them, why would we want to block them?

If you ask a cancer patient if they will give permission to allow Google, Apple, Microsoft or any other third party like Cancerlife access to their anonymized medical record so they can improve their Quality of life or improve their outcome, their answer would be YES, 100% of the time. Case closed.

Don’t lose sight of the bigger issue. Why does EPIC want to block Google or other companies from their data? Because their monopolistic IT system becomes less valuable to their customers with an AI system on top of their EHR!

Let’s try and think about the social benefit of AI driven healthcare and the patients that will benefit instead of allowing EPIC another 10 years of a “safe harbor” protected regulated monopoly. It’s time to open these EHR systems up to AI driven revolution for the benefit of patients everywhere.

Charlie Coltman

CEO Founder Cancerlife

THE FUTURE OF HEALTHCARE SOCIAL NETWORKS

There is no doubt that healthcare social networks are valuable to patients. Navigating healthcare decision making during a chronic or life threatening diagnosis is filled with obstacles and roadblocks to successful health outcomes. The healthcare system (payers and providers) don’t make it easy, nor do they have the resources and time to help. Patients are left on their own…..and the best place to go is another patient or in cancer survivor who has the knowledge to both explain the science or can advise on the best road to walk. With all the negative press about the “dangers and darkside” of the internet. The internet and healthcare is at its whole, a huge success story.

Where do we go from here? What is the future of healthcare social networks? How can the continue their journey up the healthcare value chain?

Facebook continues to expand into the senior market. In 2017, the % of seniors on Facebook reached and inflexion point whereby 51% of seniors over 65 were on Facebook! (35% of Instagram and 10% on Snapchat) 6 years ago, one of the biggest barriers to mobile digital health was the belief that “seniors don’t like technology”. The bottom line is Seniors are very comfortable with social networks and “the mobile experience”. Although they are engaging with their grandchildren today, they also see the value of connecting to others going through “similar healthcare experiences”. Social support within healthcare and chronic conditions is happening today.

We are just beginning to understanding the impact that social support has on the cancer disease progression. A study by Susan Lutgendorf PHD showed that ovarian cancer patients with “more social support” had a slower tumor growth. Social networks could actually be considered complimentary digital therapeutics already. And as our Science Advisor has told us time and time again, the social network experience creates the feeling of love using the powerful neurochemical Oxytocin. (See Paul Zach Interview.) So where do we go from here?

Healthcare Social Networks need to evolve from social support to helping the patient manage their diseases throughout the entire disease progression.

There is no doubt that social networks provide value to patients going through a health crisis. Other patients are an “invaluable resource” to help people manage the maze of the USA healthcare system. Facebook groups are helping millions of people making healthcare decisions but the problem is that they are one offs moments in time. Once the conversation ends they data and value created is lost forever inside the news feed black hole. Survey based research which is used today to collect patient experience data are simply moments in time and does not consider the long term disease impact. There must be a better way to collect the full disease experience.

Facebook is not designed for healthcare not customized for each specific disease. How many of these patients are asking the same questions over and over again? What is there was a platform that could collect this data seamlessly inside the platform? How could we render back inside reports what others are reporting? What if this data could help us predict a patient’s healthcare status? Unstructured data using machine learning sentiment analysis ads some value but his extreme expensive to both set and manage over time.

It is our belief that healthcare social networks need to evolve from “social support to disease management apps that improve patients QoL”. Through a clinical validation process, we believe that these new “social networks” could be “prescribed” by doctors to their patients in order to improve the patients experience and drive better outcomes. Looking at this data across the entire population over the long term will also hold huge research opportunities.

Population reports are important and it is valuable to understand big themes. But creating a solution that not only collects data but renders it back to the users so they can determine how to proceed or what behavior is helping or hearting them offers incredible value. We call this the data “healthcare feedback loop” and we believe it if the future. It is very similar to “Patientslike me” value proposition.  

Our platform combines a social network experience with data collection data feedback loop inside one experience. The data is used to help the patient manage their disease. It is our plan, to validate this solution in formal clinical trials.

The Era of Digital Therapeutics is here.

To understand the value of digital therapeutics, it is first important to explore the distinction between digital health and digital therapeutics. The term “digital health” describes all technologies that engage patients for health-related purposes; as such, it encompasses a wide range of products used across the wellness and healthcare industries. Digital therapeutics form an independent category of evidence-based products within the broader digital health landscape.

 Digital therapeutics are distinguished from other digital health categories through their primary function of delivering software-generated therapeutic interventions directly to patients to prevent, manage, or treat a medical disorder or disease. Digital therapeutics are distinct from pure-play adherence, diagnostic, and telehealth products. However, while their principal focus is on delivering direct therapeutic interventions, DTx products possess the unique ability to incorporate additional functionalities into a comprehensive portfolio of synchronous products and services. This includes potential integration with mobile health platforms; the provision of complementary diagnostic or adherence interventions; the ability to pair with devices, sensors, or wearables; the delivery of interventions remotely; and integration into electronic prescribing, dispensing, and medical record platforms.

The FDA is very invested in helping patients better manage their disease and sees the same technology realities explained in the white paper in the era of consumerized healthcare. The goal will allowing software companies to create digital apps that helps patients manage and improve their own outcomes by themselves while outside the doctors office. The data itself is valuable for doctors and pharma to understand how their disease is impacting the patient in the real world. Currently there are 7 companies that have been approved in the Pre-Cert Program.

From a Consumer Social Network to an “Intelligent” Healthcare Social Network.

With the power of AI and machine learning algorithms, it is possible with the right amount of structured data could help improve outcomes exponentially. Facebook news feed and any other social network “conversation strings” are unstructured data sets that require huge amounts of manual and natural language processing power of derive any value out of these chats. Social networks must rely less on conversation data and more on structured datasets that can be used to build algorithms to predict adverse events and other patients reported outcomes measures in real time.

A social network disease app that tracks the patient through their entire journey while collecting critical data about this journey creates a huge opportunity for research and most importantly improve outcomes to patients. In the era of healthcare consumer, social networks must evolve into apps that help patients manage and improve their QoL and become digital therapeutics that will one day be “prescribed” to patients by their doctors.”

PART 3 INTERVIEW WITH PAUL ZAK, PHD — MORE ON OXYTOCIN AND HOW IT CAN IMPROVE THE PATIENT EXPERIENCE IN CANCER CARE?

WHY IS ONLINE SUPPORT CRITICAL TO OUTCOMES.

Question: Therapy is obviously an important component of cancer care. Can CancerLife deliver digital social therapy?

Paul: There are so many types of therapy people can benefit from. It’s imperative to draw on all the social resources around us to support patients, particularly cancer patients.

Social therapy is the new term we are using to describe human connections in cancer care. We know it can have direct impact on cancer outcomes. Cancer patients suffer from depression and anxiety and sometimes family and friends add stress. Connect with other patients going through the fight of their lives brings people closer. Cancer needs to be a team-based experience and we are just now realizing its impact….Doctors can’t provide this ALONE. They need to empower patients with a platform to achieve this.one’s quality of life as well as good outcomes in healthcare, including cancer and other diseases. Most patients receive love and care from family and friends. But patients need even more. They need to connect to other patients and cancer survivors in ways not yet realized.

PART 6: IMPROVED DOCTOR PATIENTS RELATIONSHIPS

Q: What’s the correlation between patient-doctor trust and outcomes? 

Paul: Trust is essential in cancer care. When a patient trusts the clinical team, outcomes improve. At the time of diagnosis there often is a lot emotional bonding, but this tends to diminish over time and the patient-doctor connection can weaken. 

When things go poorly in care, doctor patient trust needs to be reinforced. Doctors need to be aware that this relationship, like any relationship, needs to be developed and nurtured. 

When patients don’t trust their doctors, they experience more stress and may begin to think the doctor doesn’t care about them. We also know that a doctor patient relationship can impact behavior and medical adherence. Why should I do what my doctor says when I don’t trust him/her? In Cancer care this in some case could be life threatening.

When patients feel alone, with their lives at risk the “fight or flight response” kicks in and the stress hormone cortisol spikes that can lead to inflammation and increased tumor growth. Oxytocin is the chemical that directly reduces the stress response and good doctor patient interactions cause the brain to make oxytocin.

 WHAT CAN DOCTORS DO TO IMPROVE DOCTOR-PATIENT RELATIONSHIPS

PAUL: The human connection is part of the healing mission for the clinician. Part of that is training doctors to be empathic. 

  • Patients should not have to wait for an hour in a cold room with a thin little gown. That’s a stressor.
  • Instead of asking “Where does it hurt?, the conversation should focus on “How can I improve your life?” 
  • When a patient is worried, the conversation should focus on resolving worry because it can cascade into stress and inhibit good outcomes because mental anguish and fear are stressors.

Ideally a doctor shakes your hand, looks you in the eye and talks to you like a human being. 

Essentially that’s what is required.  What I’m advocating is that we recognize the value of  human interaction. The interaction with a doctor can be a valuable human interaction. we should embrace that as part of human culture and as part of the healing mission.

WHAT IS THE VISION FOR THE FUTURE?

Can CancerLife improve cancer care and quality of life?

Paul: CancerLife creates an environment for patients to connect to each other in a very intimate, trustworthy environment. When patients and survivors feel secure, they open up and they can connect to others in real time, all the time—even in the middle of the night.

Embracing our human social nature and facilitating a connection means that cancer patients gain those benefits. Once the brain is open to this deep sense of connection, it stays open. Whether you beat cancer of cancer beats you, in either case embracing the value of human connection can improve the quality and potentially the length of life. Connection is essential to our lives. And if it’s essential, let’s get more of it

WHAT CAN PATIENTS & SURVIVORS DO TO IMPROVE DOCTOR PATIENT RELATIONSHIPS?

PAUL: It’s hard for patients, especially cancer patients, to express how they have felt over the last month. It’s colored by how they feel right now. It’s colored by not wanting to be a burden to your doctor and complain too much. It’s affected by chemo brain. If you can just push a button to track how you feel, you’ve created a useful data stream. I think patients will embrace CancerLife’s technology to relieve themselves of the reporting burden. Doctors need to be educated, too, about the importance of patients’ quality of life. It’s valuable information that needs to be understood that should affect clinical practice

CAN CANCERLIFE PLAY A ROLE IN IMPROVING YOUR IMMUNE SYSTEM?

PAUL: One of the most exciting areas in cancer research therapy now is harnessing the immune system to kill tumors. There’s a very tight connection between social support, reduction in stress and improvement in the immune system. And that’s exactly where CancerLife is tapping into the power of connections to both support people who are going through cancer treatment but also potentially help people survive who have been diagnosed with cancer.

 CANCERLIFE’S TAGLINE IS: THE MORE YOU SHARE, THE BETTER YOUR CARE. WHY DOES THAT PROMISE SO MEANINGFUL?

PAUL: It’s a very powerful benefit because it directly improves patients’ quality of life. Not only will patient care be better from caregivers and support groups, but CancerLife’s app also gives the gift of connection from patients to caregivers. Because we all need that connection, it’s not selfish to be sharing and ask for help. 

Part of the narrative art, the hero’s journey, is a request for help. And when have the request for help, people will almost always respond to it. People know that it’s important to reach out and feel and connect. It’s good for patients and caregivers to know that asking for help is the right thing to do. It doesn’t show you are weak. It’s not being needy. It’s just expressing your wishes and almost everybody—other than people who are really unhappy or are having a bad day — will try to respond and help you.

We find that when people volunteer to helping others, there’s evidence that their brain tends to release more oxytocin in other settings. By asking for their help, you are actually helping other people build stronger connections in other parts of their lives. You’re giving them the ability to release oxytocin and feel the value of connecting to other people.

PART 2 – INTERVIEW PAUL ZAK, PHD – WHAT IS OXYTOCIN ? HOW CAN IT IMPROVE QOL AND HEALTHCARE OUTCOMES?

Question: What is oxytocin?

Paul: Oxytocin is a mammalian neurochemical that your brain makes and is released during almost any positive social interaction. It motivates us to engage with other people.  When your brain makes oxytocin, you have an increased sense of empathy for about ½ hour and reduced stress. During that time, you are more motivated to connect to people around you . The release of oxytocin also activates a much larger network in the brain, called the HOME Network: Human Oxytocin Mediated Empathy system. Oxytocin facilitates the mid-brain to release a chemical called dopamine that is essentially the reward signal. It makes us feel good. Nature has set up a system that rewards us we connect to others, as we relax and feel good.

The HOME Network directly improves the systems of depression, anxiety, and loneliness. It can also directly impact and potentially slow tumor growth by reducing the production of the stress hormone cortisol. 

Question: What has your oxytocin research uncovered about face-to-face relationships vs. online community relationships. 

Paul:  What we discovered when measuring oxytocin levels is that the brain is not picky about the type of connection it gets. An in-person connection is the more impactful. But, when people share emotions, stories and videos in an online community, the brain will also produce oxytocin. In short, humans are so sensitive to social information that the source of the information is less important than the information itself. The key is that it must be genuine, trustworthy information

PART 3: HUMAN CONNECTIONS & CANCER CARE

Question: Can you explain why “strangers in the same situation” can develop powerful, rapid bonds?

Paul: There’s something about strangers who are in the same situation that creates very intimate and rapid bonds that the CancerLife app directly speaks to and that’s brilliant. 

Research shows that there are things patients can share with a stranger who’s also going through cancer, that you can’t say or don’t want to say to a family member because it won’t make sense to them. Or, it may appear to a family member that you are not grateful; when in fact, you really are grateful.

Having an app that allows patients, who initially are strangers to each other and are going through similar kinds of situations, to connect to each other is very powerful.

Question: Can interactions among like-minded strangers have an impact on quality of life?

Paul: Empirical evidence indicates that when a community of like-minded people—for example, cancer patients and survivors—become engaged by sharing stories, behaviors and moods, they can feel better over time; their outcomes can be better, their neurologic state can improve, and their brain tends to release more oxytocin. This is what the CancerLife App and CancerLife Communities are all about and that’s brilliant.

Question: Can a single post in an online community ignite a positive ripple effect in a cancer community?

Paul: Yes, any community member who views a conversation can benefit. Technically, there’s a bi-directional flow of information where the person who shares information and the person who receives it— both benefit.  When you share something intimate, the receiver’s brain also produces oxytocin; which increases their sense of empathy and emotional connection with you. This motivates a reciprocal emotional connection. Sharing what one is going through can provide a real emotional lift.

That kind of reciprocal connection has downstream effects. First is sense of understanding. If a person understands me, I can see it in his or her face, body language or what they have said to me online. They are not just being nice to me or patting me on the shoulder saying you’ll be okay. But they really understand what I’m going through.

Oxytocin release in the brain motivates a desire to take action to help alleviate another’s suffering. Once I’ve told you the story of my cancer, if you understand this story or relate to that story, you’ve just created a helper for your situation. And again, that can be done very rapidly within 15-30 seconds. 

Then both of the people who have been interacting get some additional downstream benefits. One is a reduction is physiologic stress. So, oxytocin says this is a safe environment. You are comfortable around this person or these people; and so, physiologic stress falls and we know that when your stress falls you have an improvement in the immune system.

 How can sharing stories and emotions improve feelings of well-being?

Paul We found that stories that have genuine emotion and feature human conflict or suffering are very effective stimulants for oxytocin release. Patients who hear or see a story can truly benefit from experiencing a genuine, heartfelt story.  A video that is genuine can be so powerful, so moving, it can be act like a sledge hammer stimulant for oxytocin production.

Sharing stories and moods in CancerLife Communities can have a profound, ripple effect among all members of the community. Those posting their intimate stories feel better and so do those hearing them.

CANCERLIFE ANNOUNCES LEADING NEUROECONOMIST DR. PAUL ZAK JOINS TEAM AS SENIOR SCIENTIFIC ADVISOR

INTRO

Paul Zak, PhD – Scientist. Author. Speaker. CancerLife’s Chief Scientific Advisor Paul Zak is on a lifetime mission to better understand and improve human connections. He is the founding Director of the Center for Neuroeconomics Studies and Professor of Economics, Psychology and Management at Claremont Graduate University.  He has launched numerous companies and has authored two acclaimed books.Paul’s research on oxytocin and relationships has earned him the nickname “Dr. Love.” His 2012 book, The Moral Molecule: The Source of Love and Prosperity, recounted his unlikely discovery of the neurochemical oxytocin as the key driver of trust, love, and morality.

As a member of CancerLife’s Scientific Advisory Board, Paul’s research and knowledge are being used to help patients, survivors, and doctors understand and develop more meaningful relationships and improve their cancer care. 

Part 1: Paul Zak & CancerLife: Question: Why have you taken on the role as Chief Scientific Advisor to CancerLife?

Paul:  I was excited by how my 20 years of human connection research could be applied to healthcare, specifically for cancer care. I lost my mother to leukemia, so cancer really hits home.

Here’s what’s so exciting. Not only do healthy adults need human connection and the benefit of human connection, chronically ill patients need and desire the connection that will improve and extend their lives. 

The work I do is often in a laboratory. I don’t get to save lives very often. I think CancerLife has the opportunity to save lives. To have an impact on even a few people’s lives and reduce their suffering and improve their quality of life is wonderful. I can’t think of a more important thing to do. I’m thrilled to help CancerLife help members of the human community live happier, healthier lives.

Question: Can patients and survivors play a bigger role in cancer care?

Paul: Perhaps the most misunderstood and under-valued component of cancer care is the role that human connection plays among patients and survivors. Humans need to connect. When we are isolated, we are not as calm and happy as we could be. When we are connected, we are calmer and happier. There are many things patients and survivors can do to become more proactive in their care. We just need to show them how, and I believe CancerLife can be their guide.

Question: What is your vision for CancerLife?

Paul: Charlie and his team understand that the more social support patients get, the better their outcomes:  The more you share, the better your care. The goal is to continue to build something beyond just “another social network,” something more clinical in nature that lowers stress anxiety and depression through its design and user experience.

My laboratory will be at their disposal to test, measure, and design content and the user experience to clinically prove CancerLife improves outcomes. We will measure everything, so we can create a more trustworthy environment and experience that no cancer patient can live without, literally. I get good bumps thinking about being part of a something that can impact 23 million people each year, around the globe. (Continued Discussion in Part 2 and 3 of the Interview)