Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.
What motivated you to start RCRF?
I am a rare cancer survivor, and I was diagnosed with ocular melanoma at the age of twenty-eight in 2012. Following my diagnosis, I tried to learn more about why we weren’t treating patients with ocular melanoma and other rare cancers adequately. I thought there would be scientific questions that we hadn’t been able to work through yet, but instead I heard repeatedly that researchers don’t have any data, models, and resources to lead to the work of testing these scientific radical hypotheses. Similarly, the narrative I heard from the physicians who were treating my dad, who at the time was diagnosed with glioblastoma, was that researchers don’t have the fundamental research infrastructure to do their jobs.
How has your experience in global renewable energy project development and solar product distribution translated to your leadership role at RCRF and in the rare disease space?
When I look at the rare cancer research ecosystem, a lot of organizations and researchers struggle with having to reinvent the wheel over and over again. The metaphor that I like to use is imagine that you were set out to publish a book and came to the conclusion that you needed to invent the printing press in order to get the book published. What we have tried to do is create shared service solutions that can support the research efforts of researchers and clinicians by doing the nuts and bolts or back-office work that must be done for the research to progress, which may not be the highest and best use of researchers.
A big part of what we’ve done in some of my global renewable energy firms is think about how to enable consumers to contribute and participate in solving climate change more directly. A lot of what Pattern.org does is the same, by empowering patients to be proactive in trying to contribute to the research that is happening on their rare disease, the development of new therapies and ultimately cures. If we can unlock patients as resources in that effort and enable them to contribute more fully to the development of new therapies, we have high conviction that we can get to better solutions much faster. A lot of what Pattern.org is about is moving patients from being recipients of care to being active stakeholders and trying to push the rare cancer research movement forward to get better therapies faster.
How does your team’s diverse backgrounds and expertise contribute to RCRF’s mission of enabling rare cancer research?
Our team might be small, but our stakeholder community is large. Pattern.org is driven entirely in an online format for the patient informed consent process, which means that anyone in the country, regardless of where they are, can sign up and participate. They don’t have to go to a comprehensive cancer center or a center of excellence. They can go to a regional health center near their home and still contribute to the research enterprise. This has enabled us to address a much larger and more diverse patient population than what most comprehensive cancer centers can pull from locally, or from those who are fortunate enough to have the means for travelling for care.
We have folks from a range of different backgrounds within our team and from partner organizations that address many different patient communities. It is similar to NORD’s Rare Cancer Coalition.
A great opportunity we have been focusing on is working with the Veterans Administration to collaborate with certain hospital groups who work with underrepresented populations, especially in the medical research enterprise whether that’s due to race, ethnicity, socioeconomic status, etc. With Pattern.org, we can over index on these underrepresented populations in medical research and increase their participation rates because we have the flexibility with the online model to reach them where they are, instead of needing them to come to us. This has been the focus for us in determining how to enable historically underrepresented communities to participate more in the research enterprise and make sure their unique attributes are being reflected in these libraries of data sets, where they haven’t shown up before.
How does RCRF include diversity and health equity in its research initiatives and infrastructure?
Pattern.org was virtual before COVID-19 hit and that model of “patient informed consent” was a founding part of our operating model. COVID-19 was hard for Pattern.org in certain ways because people deferred elective surgeries – and we can only collect a fresh viable sample of a tumor, for example, after a surgery. Our patient volumes dropped because people weren’t going in for surgery for a big chunk of last year.
This year, we have started to turn a corner. The volume of surgeries has recovered and our research partners, including the MD Anderson Cancer Center and Memorial Sloan Kettering Cancer Center, have become more comfortable with telemedicine as a result of the pandemic.
We had historically thought of Pattern.org as a one-way highway driving from patients and their surgeries to research centers or moving viable tissue samples and medical records from patient to researcher to help drive research. We are now getting better and faster, which allows for a growing number of our research partners to generate actionable insights to potentially inform patient care. For the first time we can start to think about building the second lane of the highway from researchers and leading cancer centers back to patients, who have historically struggled to gain access to care for cancer.
We recently did a collection at a rural hospital in Alabama where a patient did not have the resources or means to travel to a comprehensive cancer center for care but did have the opportunity to donate their tumor sample to a research initiative with one of our research partners. The goal is to identify targetable mutations in a rare cancer which hopefully will lead to a drug combination that could be the most impactful for that patient based on their unique molecular profile. For that rural Alabama patient, we hope to identify those mutations and drug combination in time for them to make their next treatment decision. What usually happens is a rare disease patient visits a hospital in a rural area where the oncologist doesn’t get enough volume of any given rare cancer to really build the expertise to treat it. If Pattern.org can enable us to do molecular profiling at a center of excellence and get data-backed treatment recommendations to a patient and their local provider fast enough, we can start to reduce the disparities in patient outcomes in rural settings.
We are excited about our research partners, who are thinking of new ways to deliver medical services remotely, which was partially driven by having to do telemedicine during the pandemic. I am excited about reducing disparities with our research partners’ increased willingness and ability to generate treatment insights fast enough for patients and their clinicians to have better treatment options and make better treatment decisions.
Preferred social media:
I most frequently check my LinkedIn.
What is a hobby you picked up or enjoyed a lot during the pandemic?
I have been playing the game Go a lot recently and it’s been hard trying to find people in the US to play with. It is quite popular in East Asia, and I played it when I lived in Shanghai for about four years, where I worked on utility scale renewables, inter-industrial energy efficiency, and carbon financing under the United Nations. The game has white and black stones on a grid/board, and it has been known to be the hardest game, after chess.