Tragedy and Tribute…
I received some very tragic news this morning… Michael Morris, with whom I began collaborating in October, has passed away. Michael had survived more than 4 years with late-stage colon cancer. We discovered each other this past Fall, and for me, it was like manna in the desert… like discovering a long-lost brother… and I instantly considered him part of my band of brothers. We were both late stage cancer patients working to solve the same information management problems so that we could address our cancers more effectively – and maybe find a cure… What he had managed to do for himself as a cancer patient by single-handedly developing his “CureSoft” software platform was just incredible… I had a ton of admiration for his distinctly American, “let’s roll-up our sleeves and solve the problem” attitude. He was a huge inspiration to me and our efforts at myCancerDB.com – and though he’s now moved to the other side of the curtain, I know he’ll still be working to help, and I’ll still be counting on his assistance. I had introduced him to the world of personalized therapeutic vaccines, and he was able to interview with Ezra Cohen, the Principal Investigator for the clinical vaccine trial in which I’m enrolled, but there was no room left in the trial. That is a tragedy we can only rectify by making it financially possible for the trial to accommodate more participants. Here’s a link to the San Diego Center for Precision Immunotherapy site for that purpose. I want to honor his legacy by fulfilling our shared dream of creating a world where cancer patients can easily use and control their own fundamental health data to find cures for their cancers!
I last communicated with Michael on November 7th – just a month ago. We had hoped to meet in person that week in Boston, but his trip had to be cancelled because of his health… He gave me blanket permission to share his story with others. Please take a moment to honor his memory (and his legacy) by reading his incredible story below and then consider making a donation to the SDCPI trial above:
Michael Morris’s Cancer Journey
Cancer Rears Its Ugly Head
October 18, 2014. I’ll never forget that date. We all have one of those. For me it was waking up from a colonoscopy to find a doctor hovering over me. “You have stage 4 colorectal cancer”. I asked instinctively if I was going to die. “It doesn’t look good” and they walked away. They gave me the 6 months estimate of when I would die. Die? Nobody wants to die. I have a choice to make do I want to live or die? I wanted to live.
They decided to put me in the chemo chair right away to try and reduce the tumors. My cancer originated in my rectum and it had aggressively metastasized to my liver and lungs. After 4 chemo treatments they decided my tumors were too big and they decided to operate on me. I’ll never forget February 13, 2015. It was Friday the 13th and it was going to be my lucky day! I went under the knife for 15 hours while they removed 2/3 of my liver, ¼ of my colon and the large tumor in my rectum. I bled so much during the operation that I almost died. But somehow I survived. I lost 30 pounds, had a bag coming out of stomach, and spent 2 weeks in the hospital trying to recover. It took me a good week before I could get out of the hospital bed and take a lap around the ward. It was tough. But so was I. I had to keep fighting.
As I started down the road to recovery the cancer continued to be aggressive. They put me back on chemo before my strength returned from the surgery. I battled the cancer through 12 rounds of chemo during the summer of 2015. It was hell. You walk into the infusion center and you can see that most patients have lost their will to live – they have lost all hope. I guess when life turns into non stop chemo treatments every cancer patient starts to wonder is it worth living this life of constant pain and struggle? I’ve got to come out the other side. I’ve got to do this for my kids. I’ve got to do this for myself. I’ve got to do this for ALL cancer patients out there. How can we turn the tide and empower cancer patients with a better outlook on life? How do we fight for better treatments and better outcomes for those that don’t have a voice or don’t know that there are other options out there for them than the dreaded chemo chair. The chair saved my life but at the cost of a tremendous amount of physical and emotional and psychological pain. I am sure most cancer patients feel this way and either give up or fight. I wanted to fight.
How Can I Survive? What can I do to Cure Myself?
There must be something I can do with my background and what I have endured. Cancer patient, technologist, patient advocate. I graduated Stanford in 1993 and was lucky enough to jump right into the most exciting time in the Valley when the Netscape 1.0 browser came out and we were all trying to figure out how to code HTML. I started 2 successful consulting firms and had the opportunity to build amazing teams that deployed monitoring software for datacenters. Our customers were Apple, Tesla, Novartis, Merck, HP and others. We gained a tremendous amount of experience and it was fun.
Then cancer hit. Now what do I do? Now all of a sudden working in data centers didn’t seem that interesting at all. I wanted to work on the health care problem. I saw all the issues during my cancer fight – data siloed in different EHRs, CDs/DVDs of my scans somewhere else, and an industry that likes to STILL use fax machines and emails to get things done. Amazing this has to be fixed if I am going to survive my cancer. If I cant get to my data then how can my care team possibly treat me running blind? This problem has to be solved.
Why not use all the technical skills I learned in the Valley and use them to create an integrated health dashboard for cancer patients and solve the problem? Why not monitor and manage patients in near real time – why do we have to wait 2 weeks for the 10 minute appointment we get with our oncologist. Why not look for other treatment options other than chemo and give cancer patients HOPE that there are alternatives to dying from chemo toxicity.
The picture below depicts the standard chemo cycle every cancer patient goes through. Notice how there are gaps in care once treatment is given and you go home. There is basically minimal monitoring of the patient and almost no data captured on a patients condition during a chemo cycle. This is one of the challenges that we cancer patients face. How do we stay out of the ER when chemo toxicity sets in and we go to the ER? My white blood cell count was so low in January 2018 when I checked into the ER because chemo had destroyed my blood counts. Every person that came to visit me in the hospital during that time had to wear a Hazmat suit because my risk of infection was so high. Basically if I got sick I would probably die because my body had very small levels of white blood cells to fight any infection off. (See figure 1 attached)
The Road from Protocol to Personalized Treatments
Back to the summer of 2015 and my chemo cocktail stories. After 12 rounds of chemo I had developed sores in my mouth where I couldn’t eat. I was DONE with chemo. I didn’t want protocol chemo treatments anymore. I was looking for other options. I was looking for personalized medicine. I didn’t want to see others suffer as I have over the last 4 years going through countless chemo treatments, surgeries, procedures etc. What if we could provide personalized care based on a patients own tumor and cure them? This is where cancer treatment is going. The problem today is many providers do not offer personalized care and payers are not yet willing to reimburse expensive genomic tests yet. Further compounding the problem is technology hasn’t caught up yet. We are still facing issues with getting our data and dealing with privacy concerns and risk. Why doesn’t a system exist so I can see all my data and work with my oncologist to come up with a personalized plan via dashboards not fax machines and emails. And why should I have to login to 5 different systems to figure out where my data is and how to make sense of it. And what if I want to share my data with someone else…why cant I do that easily? I quickly became depressed when I realized that the integrated health system that I was looking for just simply didn’t exist.
I figured…why not build it? I decided to use all the technical skills I learned. Instead of monitoring servers and applications in a datacenter, why not monitor chronically ill patients. I’ll start with myself since I don’t have to worry about privacy concerns. I can get my own data and share it with my own consent. I decided it had to be done so I quit the consulting company I had founded 10 years ago and created Curesoft. The goal was to develop an Integrated Patient Portal that provides not only an integrated health record but also proactive monitoring and management of the patient via intelligent alerts. If I get all my data in one place then my oncologist should be able to see trends and alerts that give more insight into my cancer and what is happening in my body. Is the treatment working? Why do I have to wait 2 months for a scan – can’t the data tell us whether its working BEFORE I get scanned. Time is everything to a cancer patient who doesn’t have time. This was my life’s mission. It became clear to me. At Curesoft we would build a system to help cure my own cancer to start. And in doing so if we can provide the same tools/data to other cancer patients let’s do it! In the end if we can help save lives and give cancer patients HOPE – that is what it is all about.
Breaking Down the Siloes
On the technical side it’s been traditionally very difficult to integrate with healthcare systems. Large vendors such as EPIC and Cerner have built their products as more of a billing and scheduling system not a health management system. APIs were not an important feature in terms of creating interoperability across siloed EHRs. What we need is an integrated platform where all my data is consolidated and available to me in near real time.
Today it is possible to break down the EHR siloes by leveraging standards that have developed over the past few years. FHIR is one important standard that the community has worked hard to define and now technologists can implement to get data out of EHRs. Utilizing other standards such as oAuth we can now create integrated applications that are data driven based on patient consent. Privacy is a big issue – the patient must be in control of their data and authorize consent to those they would like to share their data with. With FHIR, we can now integrate multiple vendor systems (eg EPIC, Cerner, AllScripts, etc) on behalf of the patient via consent to create an integrated health record. FHIR resources are returned via API calls to a REST endpoint which sits on top of an EHR.
At Curesoft we’ve been able to integrate my data from 5 different EHR systems and consolidate them into one view (see below). I almost cried when I saw all my data from Oct 18, 2014 when I was diagnosed with cancer through today. All in one place across multiple providers. I finally had my data in one place! (See figure 2 attached)
I now realize what the power of having your own data really means and the potential benefits to all cancer patients (or really any patient):
- More time with my doctor, less time looking for data (manual and across systems)
- Better patient outcome and more personalized experience – shift from protocol to personalized treatments/techniques such as genomics based on my tumor
- Predictive outcomes – utilizing big data and machine learning we can start to predict outcomes
- Stay out of the ER – caregivers can manage patients more proactively through real time dashboards alerts/events. This will keep people out of the ER.
- Unlock siloes and increase efficiencies – take siloed EHRs and consolidate data into an Integrated Health Record (IHR). Save time by having all the data in one place
One important aspect of FHIR is that it is a technical solution to unlock data from different healthcare systems. But what is needed is a business solution on top of FHIR. Without knowing what data you are looking for it just becomes an exercise of getting the data and then trying to figure out what to do with it. The data loses its value unless you harness and focus in on what data is important. In my cancer battle I’ve had to focus on critical metrics that my oncologist was looking for. That way I could filter out the noise and the rest of the data that was not relevant to my cancer.
In my case I was able to ask my oncologist what she looks for in the data when we meet after a treatment cycle. “Bilirubin, ALP, AST, platelets, and WBCs” she said. “I can tell you whether a treatment is working based on whether these metrics trend up or down over time.” This was the key: if I could harness all the data around these critical metrics could I provide a view to my oncologist that would be useful? The answer is yes. Through the Curesoft app we were able to trend these metrics over time and correlate them to the treatments I was going through. My oncologist was taking a data driven approach to figure out the efficacy of the treatment. All in near real time. (See figure 3 attached)
I’ve recently undergone personalized treatment with Panitumab which is a targeted drug for Colorectal cancer patients. The dashboard above shows the treatments (T), scans (S) and other timeline events captured out of multiple EHRs. The timeline event data is correlated with ALP data which measures liver function. ALP was used as a marker for me as many tumors continue to metastasize in my liver. What you can see on the dashboard is around April, 2018 my ALP levels were trending up which is not a good sign. It meant that my liver was processing tumors that were growing. After the targeted treatment was applied around July, 2018 the ALP data was trending down. A clear sign that my tumors were shrinking and that the treatment was working! After 4 treatments with the targeted drug I was scanned and what we had seen in the data was confirmed: the drug worked and my tumors shrank. This is a great example of how big data and correlation back to treatments will help us understand treatment efficacy and allow my oncologist to possibly course correct treatment in the middle of a cycle vs waiting for the next scan.
Genomics: The Next Frontier
Data doesn’t stop with EHRs. Wearables, APIs and Genomic data are all other types of data that can be pulled in to enhance our integrated health record. Genomics in particular has received a lot of positive press because it is an effort to bring personalized care out of the labs and into the hands of patients. The next wave of personalized treatments will come from genomics and the analysis of each cancer patients tumor. Treatments today are largely based off of protocol which is typically chemo. But what if we could determine from our own cancer tumor what mutations exist and what other treatments are available based on the genetic makeup of MY OWN CANCER. Very powerful.
My oncologist and I decided to order a liquid biopsy test to find out if there were any other options for me as we move forward with my ongoing cancer battle. Liquid biopsy tests are done by a blood draw and are preferred by patients vs standard biopsies which typically involve procedures where you go under and spend a day at the hospital. Traditional biopsies are the gold standard today however liquid biopsies are quickly gaining ground and traction in terms of accuracy and ease of use (blood test vs procedure — see figure 4 attached).
We used Guardant Health as the company that provided the testing analysis and results. They looked at over 100+ cancer genes in my tumor and found that 7 of them were mutated. With each mutation there was a list of off label drugs that could work on my particular tumor. In addition, the report referenced several clinical trials that I could apply for including name, phone number and location of the trial. This is personalized medicine. These are treatment options given to me based on my tumor results. This gave me tremendous HOPE that I now had an army of options at my disposal and that I didn’t have to live a life of CHEMO!
Every patient should have access to this kind of personalized data. The challenge today is that payers are not willing to reimburse for these tests yet until other treatment options such as chemo don’t work anymore. I decided to pay out of pocket for my test after the insurance company denied my claim. If its going to help me cure my cancer then I’ll pay. But it sure would be nice to have it covered by the payer. Maybe someday… (see figure 5 attached).
My Cancerversary is coming up on October 18th, 2018. It will be my 4th year battling this terrible disease. I consider myself lucky to still be here. They say that 11% of stage 4 colorectal cancer patients don’t live more than a year. For some reason I have been able to stay alive through all the countless chemo treatments (30+), surgeries, radiation/Cyberknife, and now targeted drugs. And now new exciting treatments are coming out every month. Immunotherapy and CAR-T cell therapy are already showing huge signs of progress and have cured patients in some cases. We just have to hold on long enough and survive until these treatments are available for your type of cancer. I am confident that the silver bullet will be there soon for all of us.
To my fellow cancer patients out there – continue to fight and never give up! It all starts with owning your data. We have a right to our data so ask for it! Empower yourself with your data. We can beat this. We WILL beat this. Its only a matter of time. Strength, focus, love, HOPE. That’s all we need.