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Guest Blog Post : CancerLife, a New Cancer Support App that can raise Quality of Life for each member.

By Genna Gibbons – Patient Advocate

Cancerlife was founded by Charlie Coltman who lost his best friend to pancreatic cancer. He founded the company with a mission to improve the lives of cancer patients through the use of innovative technology. Its flagship product is a cancer support app that provides patients with various tools and resources to help them manage their condition and navigate the cancer journey with online social support network. This can be especially beneficial for cancer patients, who may have compromised immune systems and may be at higher risk of infection. Cancerlife can also help patients in rural or underserved areas who may not have access to specialized cancer care, connect with other support resources online.

The CancerLife app also includes a symptom collection and racking feature that allows patients to record and monitor their symptoms over time. This can be helpful for both patients and their healthcare providers, as it can provide valuable insight into the effectiveness of treatment and help identify any potential issues. Since roughly 50% of all symptom and side effect issues go unaddressed, which can degrade QoL, the Cancerlife app is directly addressing this huge problem. But most importantly, Cancerlife is a social network like Facebook which creates a powerful engagement experience for each user.

CancerlIfe has been conducting extensive research on how its platform measurably improves QoL. Recently it announce the results of its two-arm randomized control trial in which was conducted nationwide and enrolled 499 participants with breast cancer, aimed to evaluate the effectiveness of CancerLife’s platform in improving patient outcomes and experiences.

The trial enrolled participants via Facebook ads and randomly assigned them to either the intervention group or the control group. The intervention group received access to CancerLife’s platform, which includes a social support platform and novel symptom data collection tracking, and treatment planning tools. The control group received standard care. The results of the trial were highly encouraging. A significant main improvement effect of intervention favoring CancerLife™ was found for both the EQ-VAS (F(1, 5) = 22.1, p < 0.01) of 14.2% and 9.9% on the EQ5-D (F(1, 5) = 14.3, p < 0.01). 

In addition to these individual benefits, the CancerLife app can also support the delivery of cancer care at a population level. Since Cancerlife does not need to be implemented inside a cancer center, it has the potential to scale into any care setting, including community oncologists, which represent 70% of the market. In their clinical trial results, patients were recruited from over 117 area codes which means the outcomes were achieved regardless of care location. CancerLife therefore can address disparities of care, so long as those patients have cell phone or internet access.

Despite the potential benefits of the CancerLife app, there are also challenges associated with its use. One concern is the issue of privacy and security, as patients may be reluctant to share sensitive personal and medical information online. There is also the potential for a digital divide, as not all patients may have access to the necessary technology or may not be comfortable using it.

To address these challenges, it is important that the CancerLife app is developed and implemented in a way that is sensitive to the needs and preferences of cancer patients. This may involve providing training and support to help patients feel comfortable using the app, as well as ensuring that appropriate security measures are in place to protect patient data.

Overall, the CancerLife app has the potential to greatly improve the way we support cancer patients, from improving access to care to empowering patients to better manage their condition. While there are challenges to be addressed, the benefits of this tool are clear and it is important that we continue to explore and invest in its development and use. In conclusion, the CancerLife app can greatly improve the lives of cancer patients and make the healthcare system more efficient. If Cancerlife can get the partnerships necessary to grow its users and scale into health systems, the platform could be a game changer to cancer care delivery. Cant wait to see what happens next!

SAN ANTONIO BC SYMPOSIUM PRESENTATION: Improving Cancer-related Symptom Burden and Quality of Life with CancerLife™, a Digital Self-Care Therapeutic for Cancer Patients

Charles L. Coltman IV, Ignatius Beard, and Scott A. Irwin, MD

Background

Collecting patient-reported outcomes have been shown to improve outcomes in patients with cancer; however, implementing methods to collect and utilize these data, such as remote patient monitoring, has been limited due to staffing resources, workflow disruption, EMR integration, and cost barriers.  A self-care patient engagement consumer app is one solution to help alleviate these barriers. The purpose of this study was to demonstrate that the self-reporting of symptoms by patients using a novel patient engagement mobile application, at any time, from anywhere, would have a meaningful impact on symptom burden while improving Quality of Life (QoL) without the aforementioned barriers, most importantly workflow disruption.

Design

A blinded, two-arm, randomized, controlled trial of CancerLife™ was conducted.   Participants with breast cancer were recruited nationwide via Facebook ads and asked to complete an online qualification survey. If qualified, they received a text message with a link to complete the consent and enrollment process, then randomly assigned via 1:3 ratio to control or the CancerLife™ intervention.  Overall health state (EQ-5D) and QoL (EQ-VAS) were compared with usual care every three weeks from 9 weeks to 24 weeks post-baseline. Virtual monitoring of common cancer-related symptoms (symptom count) was also done for the CancerLife™ group, with participants asked to share their app-generated printed reports w their care team at their consultation appointment.

Results

A total of 1006 participants were recruited online, and 499 completed the registration, consenting process, and download app procedure and were enrolled. A total of 189 participants in both groups completed the 24-week study. Participants that enrolled represented a wide national geographic area inclusive of 117 different area codes, which suggests the solution can address the challenges of care disparities.

A significant main improvement effect of intervention favoring CancerLife™ was found for both the EQ-VAS (F(1, 5) = 22.1, p < 0.01) of 14.2% and 9.9% on the EQ5-D (F(1, 5) = 14.3, p < 0.01).  Post-hoc paired t-test comparisons indicated significantly higher mean differences at 18 and 21 weeks (p < 0.05) on the EQ-VAS and at 21 weeks (p < 0.05) on the EQ5-D, with similar trends at 9, 15, and 24 weeks on the EQ-VAS and 15, 18, and 24 weeks on the EQ5-D.  Further, the CancerLife™ group demonstrated a significant decrease in symptom count (mean Δ=-9.11, -78.1%, t=-2.62, p<0.001) at 24 weeks.

Conclusions

This study demonstrates that a patient engagement app with a novel data collection platform could lower symptom burden and improve overall QoL with minimal barriers to implementation.  Since remote patient monitoring systems are hard to implement inside cancer care settings due to costs, IT system integration, and workflow disruption, a direct-to-consumer-based app, which can be used in any care setting by any patient, and accessed through any connected device, shows significant promise to ameliorate symptom burden, raise overall QoL, and address disparities of access to care and care outcomes for cancer patients. Providers may consider this as a tool to improve their population quality metrics, care and care utilization outcomes, disparities, and patient satisfaction scores without significant startup, maintenance, resource, and workflow costs.

This graph shows the Eq-5D3L Scores on the VAS or Self Reported QoL Scale
This graph shows EQ-5D-3L Index Scores

CancerLife, a Digital Health Company with the Validation Institute, Announced Results of its Phase 3 Trial That Raised EQ-5 Quality of Life (QOL) Scores by 14.3%

Philadelphia, PA (June 2, 2022) – CancerLife, a digital therapeutics company and the Validation Institute, announced the results of its two-arm, fully randomized Phase 3 clinical trial today, which concluded that the consumer cancer app was proven to raise the quality of life in cancer patients by 14.3%. This marks the first cancer social support platform that does not require remote patient monitoring or is needed to be implemented inside a cancer center to raise QoL. CancerLife is now available for download in the app stores, and now any patient can improve their QoL regardless of where they live.

CancerLife’s goal is to improve the experience for any cancer patient regardless of where they receive care. By using social behavioral therapy and novel data collection reporting, CancerLife helps patients change how they think and experience their cancer diagnosis while identifying and lowering the symptom burden by 66%. This improves their quality of life, regardless of the care location. “We believe doctors will recommend CancerLife to their patients with these clinical trial results as they are under constant pressure to improve the patient experience.” Doctors will benefit because CancerLife raises QoL without any workflow or investment in time by their cancer care staff.

“What sets us apart from any other digital therapeutics company is that we are the first company that combines the mental and physical impact of cancer treatment inside one platform,” said Charles Coltman, Founder and CEO of CancerLife. “14.3% may not seem a lot, but it translates to feeling better one extra day a week, and for cancer patients, that means spending more time with family and friends”.

Validation Institute, an independent third-party organization, has validated the study results by having its epidemiology team review the study’s design, data sources, and analysis approach. Validation Institute works with some of the most highly valued digital health companies, such as Hinge Health and Virta Health.

“Two armed, randomized trials are rarely attempted in the digital health industry and CancerLife has raised the bar with these results,” stated Benny DiCecca, CEO of Validation Institute. “The analysis clearly demonstrated the impact that the CancerLife solution can have in patients’ lives.”.

CancerLife can also provide its platform to other digital health, advocacy groups and pharmaceutical companies in both a reseller model or “white label” solution, including other diseases with high symptom and QoL burden. “We are ready to partner with other companies who want to leverage our technology within the cancer care and specialty disease space.” said Mr Coltman.

About CancerLife:
CancerLife was founded by Charles Coltman, who lost his best friend in 2013 to pancreatic cancer. CancerLife helps patients change how they think and experience their cancer diagnosis, whilst identifying and lowering the symptom burden. This has a dramatic impact on quality of life, regardless of the care location. CancerLife is now live in the app stores. https://cancerlife.com/install

About Validation Institute:
Validation Institute is an independent, objective, 3rd party organization on a mission to improve the quality and cost of healthcare. Based in Woburn, MA, the organization is made up of a network of health benefits purchasers, health benefits advisors, and healthcare solution providers focused on delivering better health value and stronger outcomes than conventional healthcare. www.validationinstitute.com

Psychedelic Therapy and Cancer Care ? Where do we stand?

Hi friends, Charlie here. I want to talk about an exciting topic that is really taking over both the digital health space, health care, as well as wall street. And that’s the exciting developments in the use of psychedelics for mental health treatment? I think in the last 90 days we seen three companies go public and they’re almost viewed while they are viewed as you know therapeutic biotech companies. And the revolution in the science has actually been around for awhile. I guess you call it a revolution that it’s more a revolution of adoption and acceptance than it is about some type of breakthrough. Just a little history of the psychedelic movement where it’s really it’s really starts. I think with Johns Hopkins has a school for psychedelic studies and I have been working for almost 10 years now on studies that associate with post-traumatic stress disorder using psychedelics and guided therapies.

So keep in mind, this is at this stage, it’s not, we’re not talking about, you know, just handing somebody a tab of acid and saying, good luck with that, all that. This is using certain dosages, low dosages that are then paired with therapy, so guided meditation and or guided therapy. So, you know, the psychedelics and this we’re talking about psilocybin MDMA, which is ecstasy. You know there’s a few other ones, but essentially, you know, the science is amazing. I mean, it’s just basically, if you combine, you know, getting a therapist to key in, on some trauma I E and with vets and, and you know, post-traumatic stress, the psychedelics allow the brain to kind of gain a perspective and there’s almost a rewiring of the neurons with that trauma. And it is just a kind of a doorway. It’s a re rewiring process that is dramatic.

It is a literally like rewiring a computer with natural compounds, so that that’s, what’s incredible. And Johns Hopkins, they did a five-year study with posttraumatic stress disorder. We’re talking fives, I’m sorry, three sessions you know, guided, guided trip sessions with therapy therapists. And after five years, something like 75% of the participants had no indications of post-traumatic stress had no issues with depression. It was just, it’s unbelievable. So that’s kind of started a whole revolution and, you know, now these psychedelic compounds are being experimented with whether they’re actually making artificial compounds at campus pathways and law in England, or, you know, just experimenting with magic mushrooms you know, with therapy. So where does this all sit with cancer patients and my company, and what’s our vision, what’s our kind of stance on this whole thing. And I think I will say it right now.

I think we, as a company and as you know, patients, you know, who are dealing with end of life, you know, we should be at the forefront of both, either partnering with companies who are trying to develop these therapies from a clinical trial perspective you know, or having our own sort of services associated with end of life, palliative care hospice. I mean, I think going forward, I’m talking about, you know, 12 to 24 months from now, you know, our movement is going to be into end of life care. And I think that what needs to be done and how I see it evolving is, is it’s, it’s a preparation, it’s a process, it’s a preparation. And these types of therapies have shown to load low lowering anxiety, give great perspective. And I can’t, you know, I believe it’s going to be big.

I think it’s going to be a standard of care for hospice treatment, probably in the next, you know, three to five years. You know, I want to tell those two stories associated with cancer patients and psychedelics one is a woman who had pancreatic cancer diagnosed pancreatic cancer twice. I mean, and still living today. She was part of the joy of the Johns Hopkins study. And I, she and I spoke at length about her experience. And she said that the experience completely wired her rewired, her brain, that she felt less fear about death than she ever had. She told me just jokingly. She said, honestly, every day I wake up and I look myself in the mirror and say, one day you’re going to die, but not today. And for someone that has faced such a horrible diagnosis, I mean, that’s, that’s magical to me.

Number two is even more personal story about a friend of mine that I was introduced to. I want to say seven years ago his name was Dan and Dan had childhood brain cancer around. I want to say when he was 10 to 12 years old. And through the treatments, you know, two years of treatments, two years of surgeries it left him really kind of, you know, sort of limited in, in his intellectual capacity. So to speak and years later, almost 20 years later, he got rediagnosed with the same cancer. The cancer had come back and that’s what I was introduced to him. And we spent a lot of time together. It was very clear to me that a lot of his friends pull back after this diagnosis kind of like, you know, it was almost like they had decided he was already gonna die and they didn’t want to deal.

So I spent a lot of time with him. In fact, I used to go down and hang out with him every Wednesday when I was headed down to the city for therapy, I used to sit with him for four to five PM almost every Wednesday just to talk. I mean, just, he needed a friend and we spent a lot of time. And one of the saddest moments for him was when he told me I’m really depressed. And I said, why? He goes, because they told me the tumor is shrinking. And I said, oh my God, Dan, like, what do you mean? He’s like, I’m just done. I feel like I have no life. I feel like I’m lonely. I feel like I don’t want to live like this anymore. And, you know, he was really in a, in a, you know, a dark place.

His parents were well aware of his emotional status. And, you know, I tried to really respect him as a person and wishes and, and just tried to listen and be supportive a few weeks later. I actually took him down to my mother’s beach house for the weekend. And, and we did a mushroom trip together. I had, I’d known that, that this, you know, had shown evidence of improving, you know, mental outlook and, you know, he was all for it. And I can tell you, you know, after that experience, he, his whole mood changed. I mean, it was dramatic. His parents say, Charlie, like, you know, what, what did you do with a weekend? And I’m like, well, we just talked a lot. That’s all I could kind of disclose. But it was at that moment where I realized there was something, there was something to this, and that’s actually what started me on my education of, of silicide bean and the work with Dr.

Paul Stamets out in his facility has his research Institute out in the Northwest. So I, you know, unfortunately about six months after that experience, Dan committed suicide he had fallen back in and, you know, everyone had done everything we could to, to sort of try to convince them otherwise, but that was his choice. And I’m certainly not condoning suicide as a method for folks. But I can understand. I mean, all I can say is I can understand when we I’ve said this before in my previous post about symptom management, quality of life and depression, it’s like when you have no quality of life and you have no function, you lose meaning and you fall into depression and that can lead to a place of, of frankly giving up. So the bottom line from my perspective and my company’s perspective is we are, you know, 1000% supportive of the use of psychedelics for end of life cancer died, you know, treatment.

I, you know, I want to lead in this area and I’m, you know, I’ll say to any, any psychedelic research companies that are involved, who want to get in the cancer space, we are open for business to try to partner up with you guys to, to both find patients and run studies. And I’ve got some amazing contacts in the space. And it’s something that I can see, like I said, in five years, where part of the service offering is, you know, in, in some type of hospice end of life care would be the use of guided psychedelic therapy. So that’s my take on it. Wishing all the best and take care.

100 Daily Active Users!! Why is this so exciting?

Well we finally did it we hit 100 daily active users!! That might not seem like a lot for many people but when you consider that cancer patients are roughly 2% of the population this is significant in that the typical target point for Silicon Valley to invest in consumer apps is 10,000 daily active users, so we’re on our way up to 1000 daily active users which is going to be our major milestone we hope to hit in September.

 For more information around daily active users and Silicon Valley please see the posts and interview with Jeremy Lou from lightspeed ventures.

https://www.vox.com/2017/11/18/16673982/app-growth-investors-jeremy-liew-snapchat

CancerLife 2020 Study Results Overview

Marlon Saria, PhD

John Wayne Cancer Institute

Charles Coltman

CEO Founder of CancerLife

CancerLife announces results of pilot study of its digital therapeutic which showed a 25% improvement of QoL metrics and reduction of symptom burden by 70% with its most active users. Expands study to 1,000 and adds randomization to its virtual clinical trial.

Introduction

There is no doubt that patients diagnosed with cancer live longer due to advances in immunotherapy and more early detection methods. Cancer and its treatment, however, produce multiple symptoms that significantly distress patients and impair function. Such common symptoms and often go undetected can include fatigue, depressive symptoms, cancer-related pain, and other bodily changes. These symptoms can delay or lead to premature treatment termination, depression, poor quality of life outcomes, and lead to hospitalizations and emergency room visits to manage these symptoms.

Patient reporting of symptoms or patient-reported outcomes (PROs) has been a suggested approach to improve both the control of symptoms and improved quality of Life metrics and even a dramatic improvement in overall survival* (Basch 2017). There are several ways to collect these symptoms (PROs), but none are required as part of the standard of care. Patient portals have attempted to use their electronic communication to capture this data when the patient initiates an engagement. Still, evidence has shown the patients rarely engage on these systems frequently enough to capture enough data to build a comprehensive picture of the patient’s health status. Health systems and cancer centers have responded by piloting remote patient monitoring studies that have initiated engagement from the provider to the patient using text messages and or email communications. ( Basch 2017) Remote patient monitoring systems offer significant benefits and have shown to improve outcomes and lower hospitalizations.

However, remote patient monitoring presents significant workflow disruption to a busy Cancer Center that responds to patient’s needs when needed. Community oncology practices also are limited by the number of resources available to answer to these remote patient monitoring systems and therefore are not practical in real-world community ecology settings.

Our study’s purpose was to show that empowering patients with a digital health platform called Cancerlife, will lead to more effective, longitudinal data collection, thereby improving quality of life metrics. Our platform also solves the particular problem of patient engagement by allowing users to share their health status with other patients, which provides meaningful social support during treatment. It’s this specific social interaction that generates significant emotional reward while at the same time enabling the level of data collection of patient-reported outcomes needed to impact the quality of life outcomes and metrics.

We hypothesized that by empowering patients to collect their data and providing print- out reports that could be shared manually with the patient’s care team, more effective communication and management of symptoms would lead to a higher quality of life scores.

Fundamentally, we asked a simple but essential question: Do patients have the ability to collect their own symptoms and share this data with their care team using a novel digital health solution?

Finally, this study’s key focus was to assess the engagement metrics within the digital health solution Cancerlife focused on the number of times a week, patients shared their health status without being prompted. Also, the number of times patients engaged with other posts, comments and likes similar to other social networks like Facebook, and we also looked for correlations between the number of times patients engaged on the platform and their quality of life scores.

Our goal was to show meaningful improvement in outcomes metrics by using and engaging the CancerLife digital health solution and sharing the data collected with the care team.

We hypothesized that using digital data capture and communication platform can improve quality of life and enhance physician–patient interaction in patients with cancer and their caregivers. Our study showed that CancerLife optimized self-monitoring and reporting of symptoms and showed promise in reducing symptoms in highly engaged participants.

Our study showed that empowering patients by using a digital information and communication platform that could be logged into at any time (24/7) would create similar data collection observations that could present to the care team at the time of consultation without the need for clinical intervention. 78 Patients in our study logged onto CancerLife and posted and shared their health status on average 2.2 times per week for up to 20 weeks. This data highlights the benefits of the digital communication platform showing a reduction in symptom burden in patients diagnosed with cancer. Patient-reported outcomes (PROs) collected longitudinally by the patients are equally effective at lowering symptom burden and improving the patient’s quality of life. For those who were the most active (top 25% of users) on the Cancerlife platform, saw an average improvement in QoL metrics (FACT-G survey) was 24.7 % while reducing their symptom burden by 79%.

Conclusion

In conclusion, these results show the importance of digital communication and improving quality of life and symptom burden using the CancerLife platform. One of the key goals of this study was to prove that cancer care outcomes can be achieved when the patients can collect better data themselves and present their data to the care team at the time of consultation.

Although Remote Patient Monitoring systems have clear benefits, the resource constraints on the care team’s daily workflow make implementing these RPM systems a burden to many health systems or independent offices, especially in the community oncology setting. Our theory has been that the issues with symptom management within cancer care is partly a data collection and sharing problem. Empowering patients with a platform to easily collect and report this data back to care teams without the workflow burden of asynchronous messaging would achieve meaningful outcomes. Ultimately the ideal state in any high burden disease is real-time communication with the patient’s care team and doctor. But in practice, this is highly unrealistic. Even in the most patient-centric practices the cost and burden are incredibly high. CancerLife is designed to empower patients to share this burden in an easy-to-use app that creates reports that are shared manually at the time of face-to-face or online consultation. We believe Cancerlife achieves meaningful outcomes with limited workflow and operations burden on practices and ultimately will be preferred by cancer practices with limited time and resources.

After the study conclusion and analysis, we are expanding our current study protocol and changing the QoL measure to the EQ-5 European scale, which will be better suited to a digital solution like Cancerlife. Furthermore, we add a randomization component to our virtual study and expand to over 1000 participants. We believe that after the results of this randomized control trial, we will be the first and only direct to consumer app that is clinically validated to improve QoL through better patient driven symptom management and engagement.

Virtual Reality used in Cancer Care …coming soon to a headset near you!

Charlie Coleman here, CEO and founder of Cancerlife today’s video blog, is about some exciting research that just came out at temple from temple university and Dr. Antonio Giordano and D, who with his Italian team created a virtual reality experience that lowered anxiety and stress in patients undergoing chemotherapy.

This is important in two ways; one, it’s a vindication of the power of virtual reality as a method to improve mental health outcomes specific to a disease. We know that getting chemotherapy in an infusion center is stressful for patients. Just the whole experience of going to the doctor with the reality of, Oh my gosh, you know, here I am, again, sitting in the chair. Cancer centers have tried for years to make the experience better. And yet, using this virtual reality headset and experience, they measured, you know, stress levels and anxiety measures and saw incredible outcomes.

So I think that’s exciting just from a VR perspective on, on this type of technology. The second thing is specific to cancer. You know, we know that cancer outcomes have a direct impact on stress levels. Dr. Lutkendorf out of the University of Iowa showed that the more social support or, or more loneliness that patients have the worse, outcomes. Because then the stress level induces tumor growth. \

Whatever we can do to lower stress for patients is a good thing for cancer Carol across the board. The second thing is that many patients are experiencing stress levels, not just in the infusion chair but when at home. Right? So, you know, they typically, and it, a lot of the times, it’s two in the morning in our experience at castle life.

A lot of the times when patients express their extreme level of, of anxiety and worry, you know, it’s because it’s two in the morning and it’s the night before they’re getting there, you know, major scan or they’re getting results of a blood test, or, you know, a genetic marker. These are all critical decision points for patients. And they’re experiencing this excitement, anxiety, and stress when no one else is around right there. They’ve got no options to engage with, you know, a social worker or some type of coach. You know, although our patients can interact with each other late, late in the, in the middle of the night. What’s interesting with this VR technology, this is something that I assume over time will be scalable to the home where patients can feel that anxiety and then, you know, put on the headset and go through some breathing exercises, some mindfulness and instead of just a visual recording, they’ve got a full virtual reality experience. That’s going to calm them down.

So I just think it’s really exciting information and, and research and looking forward to talking to Dr. G about potentially partnering with his organization and scaling this technology. So anyway take care and best of all to my wonderful members of Cancerlife.

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 LUNGevity 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 Myleoma Foundation is probably the premier cancer nonprofit in the space today. And they’ve been working in genetic cancer data for like five years now when it comes to research. But I’m telling you all you, non-profits out there. If you’re not thinking about data research specific to patients, you’re going to be closing offices. So for those 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 are a million places to take it.

If you are a Cancer Nonprofit and need a resource here is a link to Harvard Precision Medicine Accelerator which provides a guide to migrate to a data-driven research company, with support from Multiple Myeloma Research Foundation which has led this data revolution for years! Click here to download the tools and guide. https://www.hbs.edu/kraft-accelerator/use-the-tools.html