By Tom Marsilje, May 17, 2017
Visit Tom’s blog, Adventures in living terminally optimistic
1,000 Hits… my mind was blown away. My cancer had returned and I was now diagnosed recurrent Stage IV. I knew at that moment that standard of care therapies would only buy me so much time – I would need to have Clinical Trials in my treatment plan. Being a planner, I immediately started to search the main database of clinical trials, www.clinicaltrials.gov to see what trials were possible, to start making a list to consider & keep an eye on.
But even as an oncology drug discovery researcher, I was a “deer in the headlights”. I had no idea where to even start with the >1,000 hits my first search generated! I started to go through the list. I immediately saw problems – of course, there were not >1,000 reasonable trials to consider – my CRC search terms had pulled up many trials that were completely inappropriate. I stopped going through the list – I gave up – this would take forever I decided, there must be a better way…
There is a very low patient participation rate in clinical trials for adult solid tumors, only about 3% of patients participate. Especially in the age of experimental immunotherapies, I think this is an absolute travesty. Often patients have to research potential trials for themselves. There are numerous reasons behind the low participation rate but I firmly believe one of them is how difficult it is for the average patient to use clinicaltrials.gov to find potential trials. Even as an oncology drug discovery scientist, I wanted to give up on it: the results of my basic search were incredibly intimidating. Imagine how a cancer patient without a scientific background, often under emotional and physical strain, would feel!
I tried to think through a better way to find trials for myself. At a very basic level, I began to ask myself a series of questions:
- Which clinical trials would have the highest potential benefit?
- Which clinical trials would be less likely to fail?
For point #1, in my mind, the answer was immunotherapies. Often the odds of response are quite low – but when they work – boy can they work well!
For point #2, at first I tried to judge scientific merit. I soon gave up. The number of possible ways to attack CRC is too large, drug discovery is too complex – I had to simplify & not make scientific judgments. I decided to follow basic statistics: about half of Phase I clinical trials don’t succeed. Experimental therapeutics that pass Phase 1 clinical trials and that have entered Phase 2 trial testing against CRC by definition had a higher chance of success.
I had my trial guidelines – I started to search clinicaltrials.gov and began to develop a list of trials I wanted to keep an eye on. The list was a mixture of immunotherapy trials that accepted MSS-CRC patients as well as Phase 2 or 3 trials (of any type of novel therapy) directed towards treating CRC. I added to it as new trials were announced – my list steadily grew…
It All Started with Friends
The Stage IV CRC patient world is tight & close knit. We get to know each other well. Friends started to ask me which trials I thought were best. I always answered: I’m not a MD so I can’t give medical advice & it is impossible to know which trials are “best” because drug discovery is so complex… but here are the trials I am keeping a close eye on for myself. I then gave them a copy of my spreadsheet. Word of my personal list spread and more patient friends started requesting it.
As I became more and more involved in CRC patient advocacy, I came to the realization that it felt morally and ethically unfair for me and patients that “happened to be my friends” to have this information – trials I honestly thought were in the patients’ best interest to consider if they agreed with my overall trial guidelines – while other patients did not. So I started to post my spreadsheet file in a number of CRC patient support groups online. It wasn’t an ideal way to spread the information but it was the best I could do.
Maria Cecilia Antunez is simply known as “Maia” or “Cee Cee” in the CRC online communities. From her home in Argentina, Maia has been a patient advocate online for years, helping to spread clinical trial information to CRC patients. She sent me a text asking if I would be interested in having my curated list as an App instead of a spreadsheet file. Would I?? That would be awesome I told her! Maia went to work and within days she had a working app. It was simple, very grassroots, but fully functional. I was amazed. We decided, now as a patient advocacy team, that the App was too important of a resource to keep bottled-up in support groups – it needed to be available to the general public. We enlisted a fellow Stage IV patient friend of ours, Jana Downing, to design a simple web page to house the link to the App. Our website went live last January and patients loved it!
Flatiron Health and Fight Colorectal Cancer
The impact of my curated list of trials was starting to hit much higher levels than I had ever imagined. The app was great for a grassroots effort but I knew that the potential to help many more patients was much greater. Maia and I needed help.
Through a mutual contact I connected with Flatiron Health. I presented the project to see if they could bring it to the “next level”. They were immediately enthusiastic to help! They had a “Hackathon” scheduled for March where they could devote their resources to convert the simple v1.0 grassroots app Maia had made into something much, much, more – a professional-quality app with much greater functionality! All for free! I was blown away by their incredible generosity! A full description of the software engineering that went into the new app can be read here. By chance the Hackathon took place the exact same day as my Charlie Rose Show interview while I was in New York City for a doctor’s appointment. It is amazing how sometimes the stars align in just the right way!
At the same time, I knew that to reach as many CRC patients as possible, Maia and I needed more than our simple grassroots website – we needed an advocacy organization partner. I have worked with Fight Colorectal Cancer for several years as a writer and science consultant – they immediately sprang to mind. Their mission is focused on patient education and empowerment, and they have a strong commitment to research. I decided that teaming up with Fight CRC would create a perfect partnership for our curated MSS-CRC trial finder. I contacted them and told them about the project – like Flatiron they were excited to take part. We worked together to determine how Fight Colorectal Cancer could house, maintain and support the new curated clinical trial finder Flatiron was developing. I was excited how the project was coming together with amazing speed!
Announcing: The “Late Stage MSS-CRC Trial Finder: A curated list powered by patients”. I am excited to announce the release of this incredible new app (thank you Flatiron Health!) of my curated MSS-CRC clinical trial list for the MSS-CRC patient world to explore! It follows the very basic curation criteria that I follow when I look for clinical trials most interesting to me. With Flatiron’s help, this tool is now accessible to patients in a highly-functional app – which I believe is an extremely user-friendly trial finder for MSS-CRC patients. Because of the high “potential” benefit curation parameter, it has a focus on immunotherapy clinical trials – an area of oncology research I am particularly excited by right now. This is also an area of trials that are not easy to find through clinicaltrials.gov searching – but an area of clinical trials I know many fellow patients are also very interested in exploring! On a broader level, there is nothing “CRC-specific” about the curation methodology, I would love for it to spread to other cancer types via appropriate advocates – contact me anytime if you have questions or interest!
Today an activist dream of mine all comes together on the Fight Colorectal Cancer website… all starting from a simple spreadsheet of trials I was interested in as a patient-scientist myself…