GBM Agile: How Cure Brain Cancer used Co-Design to Transform Global Cancer Research
‘This is not my story’, Catherine Stace said when we sat down to talk. Humility is a common trait among leaders of Catherine’s caliber. They check their egos and stress the great work other people are contributing to the cause. This is not Catherine’s story; although it begins with Catherine, and it would not have unfolded without her. It is the story of an international network of culture hackers, consultants, and moral campaigners, scientists, doctors, and cancer patients, CEOs, government and Big Pharma representatives who gifted their powers in the service of a breakthrough medical innovation. It is the story of a community at the forefront of the new innovation culture, where collaboration is the key to a better world, reality is something to be hacked, and innovators aspire to greatness.
Catherine is CEO of Cure Brain Cancer (previously Cure for Life), an Australian not-for-profit responsible for disrupting the global cancer research system. When Catherine came on board, in 2013, Cure Brain Cancer had three full time staff members and was focused on sourcing grants and sponsorship for research. It was a grim and dispiriting mission. Brain cancer has low incidence rate, accounting for only 2–3% of cancers. The mortality rate, however, is sky-high. In Australia, one person dies from brain cancer every 7 hours. The average life expectancy for the most aggressive form of brain cancer, Glioblastoma Multiforme (GBM) is 15 months. Less than 10% of patients survive more than 5 years. Brain cancer kills more children than any other disease, and more people under 40 than any other cancer.
Brain cancer is a brutal and unforgiving affliction. Yet, because of the low incidence rate, it receives far less research funding than other forms of cancer. Brain cancer is low on the radar at most medical research facilities. Meanwhile, patients are dying in droves, and organisations like Cure Brain Cancer must work overtime trying to keep the search for therapies alive.
Catherine joined Cure Brain Cancer with a new vision for the organisation. In 2009, she helped steward a think tank called Transform Australia. Through Transform Australia, Catherine was introduced to US collaboration consultants Matt and Gail Taylor, who ran the session. MG Taylor’s Design Shops enable large, diverse groups of people to produce breakthrough insights and new strategic visions. At Transform Australia, they enabled 80 academics to co-design a new strategy for nationwide whole systems change.
Catherine toyed with an improbable idea. What if MG Taylor could help Cure Brain Cancer co-design a new global strategy for brain cancer research? The current system is clearly failing to produce the kinds of results patients need and deserve. The problem, Catherine emphasizes, isn’t the science — it is the system of research. Around the world, scientists devoted to brain cancer research are shut in their specialist silos, struggling with similar challenges but rarely collaborating to solve them. Year after year, they meet at international colloquia to compare statistics and results and agree that more collaboration is required. But the global medical research system is not set up to enable collaboration. The system evolved in an ad hoc fashion through a combination of national and private medical research schemes. As of 2013, there was no systematic coordination of brain cancer research at a global level. The situation cried out for disruption.
The challenges involved in designing (much less implementing) a new global strategy for brain cancer research seemed well beyond the capacities of a tiny not-for-profit like Cure Brain Cancer. But Catherine had seen collaborative magic happen at Transform Australia. She felt certain that, with MG Taylor’s help, they had a shot at success. Catherine ran her idea past Jo Quin, the Chair of the Board. Jo’s father died of brain cancer. Catherine describes her as ‘fierce and gutsy in a wonderful way’. Jo saw potential in the idea. When Jo and Catherine pitched the idea to the rest of the board, they were impressed as well. The board mandated the idea — an ‘incredibly courageous act’ — and Catherine’s plans for the Design Shop were underway.
It wouldn’t have happened without Catherine and Jo working as a team. With Jo’s tenacity and Catherine’s passion for co-design and whole systems change, they were the right people to get the project started. ‘It takes the right pairing’, Catherine reflects. ‘You can be the lone wolf, but when you work in partnership with others, it strengthens and fortifies. … You get a through line and you rise when you find that powerful combination’.
Matt and Gail Taylor were deeply inspired by the challenge of co-designing new a global system for brain cancer research. They accepted Catherine’s offer to design and lead the workshop. The project had moral authority, and Catherine, in their view, had the leadership skills to pull it off. Matt and Gail Taylor have decades of experience designing and facilitating large-scale problem-solving workshops for governments and corporations. Advocates of a holistic, whole systems approach to organisational change, they are known for creating immersive environments that unlock the creative potential in groups. They call this ‘group genius’.
The Taylors signed up to the project prior to any real planning taking place. With their wealth of experience and their international network of connections, they made an incredible difference from the start.
Catherine, at this point, needed all the help she could get. Lisa Carlin and Jo Quin, at Cure Brain Cancer, and Alex Klat Smith at The Difference, offered invaluable support in planning and organizing the Design Shop. But no sooner were the plans announced than a small army of detractors came out of the woodwork. For every person who was supportive of the idea, there seemed to be two people ready to tear it down. Some people didn’t understand why the CEO of Cure Brain Cancer wanted to invest money in a workshop rather than putting it into scientific research. Members of the local scientific community didn’t see the opportunity. ‘A “co-design session” — what is that?’ they’d ask, when Catherine tried to spruik the idea. ‘Sounds like a talk-fest’. Catherine herself struggled with doubts. Would anyone turn up to the workshop? ‘It was such an unknown’, she admits. ’Who was going to attend a think tank, giving up two days of precious time? That’s a big ask’.
Two international guests turned the situation around. The first was Professor Webster Cavenee from the Ludwig Institute at the University of California, San Diego. Web was the ideal person to launch the North American arm of the network. ’Web is a distinguished and coveted scientist’, Catherine explains. ‘He has clout. He can call anyone and get their blessing and stewardship’. But would a scientist of his stature have time for the project?
Catherine shed blood to convince Web that the workshop would be a game-changer. ‘We had a four hour phone conversation on Xmas eve’, she recalls. ‘It was tough for both of us because that’s a time for family. But we demonstrated our dedication. Something about that conversation Web trusted’. Web was convinced and signed up for the workshop too.
The second guest was Dr Sarah Cattick, Principle Neuroscience Advisor to Lord Sainsbury of Turville, in Britain. Sarah has a stellar record as a neuroscientist and board member for several major medical foundations. She was the perfect person to consolidate the European arm of the network. Sarah immediately saw value in the co-design idea. She decided that the project was worth supporting and committed to attending the workshop.
Web and Sarah’s commitment turned heads. The project acquired significant reputation capital. The combination of scientific authority and outrageous ambition was an intoxicating mix. The team rapidly secured a third international guest: Kees Kleihues van Tol, a web architect at the International Agency for Research on Cancer at the World Health Organisation. Kees brought an unparalleled insight into data science to the group.
Meanwhile, Professor Charlie Teo, the Founder of Cure Brain Cancer, was opening doors at the top level of the Australian cancer research system. A couple of months earlier, no one had time for the workshop. Now everyone wanted to be part of this prestigious and important event, which had been christened by this point: the Global Brain Exchange (GBX).
The GBX took place over three days in March, 2013, at Cure Brain Cancer’s Sydney office. There were 60 participants, comprising a cross-section of the major stakeholders in the global cancer research system. They included patients, oncologists, neuroscientists, Big Pharma execs, and social activists. It was undoubtedly the most diverse and supremely well-qualified group to have been gathered in a room to discuss brain cancer research.
Charlie Teo opened the event with a short speech, and then invited the participants to step through a portal to the year 2024, where a successful global brain cancer research system existed, which was pioneering new research and piloting innovative cures. The first step was to map out the system of brain cancer research as it had existed in 2013, so as to discern the journey that led from the past (2013) to the present (2024). Dividing into teams, the participants set about researching different aspects of the brain cancer research system in 2013, pinpointing key features of the system and trying to identify the barriers that stood in the way of change. This initial phase produced a tremendous amount of information for the participants to mull over. In the process, it brought to light a range of contentious issues and diverging points of view. This seriously complicated the task at hand.
For Matt and Gail Taylor, complicating things is part of the process. Their strategy is to bring out the broadest possible range of perspectives on a problem in order to reveal the blocks and sticking points that stand in the way of change. Instead of avoiding these blocks, the Taylors make them central to the process, using them as starting points from which to seek synthesis on key issues. This takes the conversation to a new level. ‘You can’t get to synthesis without understanding the whole’, Catherine explains. ‘Otherwise you’ll have a viewpoint from one part of the system, a partial view on the problem and its potential solutions’. To plot a course towards systems change, it is necessary that everyone appreciates the total set of barriers to change. When people begin to explore ways of circumventing these barriers, their group genius kicks in, and they start reflecting on new ways of structuring the system.
For two days, the participants at the GBX brainstormed, butted heads, deliberated, and explored the myriad elements of the existing brain cancer research system. Meanwhile, they were generating ideas, synthesizing them, iterating, and collating indications of how this system might be redrawn. Hour by hour, the participants learned to better understand one another, and to empathize with the challenges that each of them were facing. The more clearly they understood the current system, the clearer it became how elements of the system might be adapted and reconnected, enabling new linkages between research projects that added value for everyone involved.
Everything came together on the third day. The energy in the room was electric as the participants at the GBX discovered their group genius and identified a breakthrough solution. A collaborative global system of research was both possible and achievable. Moreover, the people in the room were precisely the right people to make it happen.
Systems innovation doesn’t happen in a flash. The participants left the GBX with a strategic design for restructuring the global brain cancer research system, complete with timelines and projected budgets. The challenge now was to implement it. Cure Brain Cancer followed up the workshop by hosting an international scientific meeting in Australia. Web, meanwhile, returned to the US and briefed the National Brain Tumor Society (NBTS) on the strategy. Catherine flew to the US and China and introduced the plan to senior scientists and research executives. At one event, hosted by Dr Anna Barker at Arizona State University, 150 scientists broke into resounding applause after Catherine briefed them on the plan, following a workshop. Anna invited 140 of them to join the global movement — and all offered their services pro bono. Catherine left the event with a glowing sense of triumph.
But this is not Catherine’s story. Anna Barker took charge of the movement after a second meeting in Arizona. Anna’s vision and extraordinary influence globally was fundamental to consolidating the research network, and pivotal to driving the adaptive clinical trials that unfolded from it. Michelle Stewart, Cure Brain Cancer’s Head of Research, worked closely with Catherine from the time of the second Arizona meeting to bring the movement to scale. Stephanie Owen deserves special mention as a project manager and change management consultant for Cure Brain Cancer, playing an invaluable role, not least by heading up a series of working groups subsequent to the Design Shop.
Conversation by conversation, the nodes of a global research network fell into place: the Global Brain Cancer Alliance. As of 2016, the US, China, and Australia are the main partners in the Alliance, with a European arm coming online in phase two. The Alliance is currently focused on driving an international series of clinical trials to accelerate the discovery of biomarkers for more effective forms of cancer diagnosis and treatment: GBM Agile.
GBM Agile is based in genetic research. The US National Federation for Cancer Research (NFCR), a GBCA affiliate, runs a Tissue Bank Consortium in Shanghai. The Tissue Bank provides high quality cancer tissues to The Center for Cancer Systems Informatics in the US (also part of the NFCR), which runs analyses on the specimens with a view to identifying biomarkers that could influence new treatment regimes. GBCA research teams around the world are now using this data to run a rolling series of multi-centered, adaptive clinical trials to test these regimes, targeting Glioblastoma Multiforme — GBM. Led by Australian oncologist Dr Mustafa Khasraw, GBM Agile stands to revolutionize our understanding of cancer and the way we diagnose and treat it.
Traditionally, medical trials test a single therapeutic approach on a range of patients. Typically, the therapy works better on some patients than others, but no one knows why. GBM Agile distinguishes patients on the basis of genetic biomarkers, identified through genetic analysis. When a treatment is found to work for members of a certain biomarker group, it is applied to patients with matching biomarkers. This makes it possible to test multiple therapies, and combinations of therapies, on an expanding roster of patients.
GBM Agile will run adaptive clinical trials at multiple locations around the world. Each set of trials will feed into the next, creating a ‘continuous learning system’ that circles the globe. Brain cancer patients are lining up to participate in the trials. On account of the rapid onset of the disease, these patients don’t have time to waste. The icing on the cake is that the therapies identified through these trials involve using drugs that are readily available on pharmacy shelves, thereby promising cheaper, easier to access, and less invasive treatments than chemo and radiotherapy. ‘We are repurposing FDA approved therapeutics to a new end’, Catherine reflects. ’It is profound’.
GBM Agile is the largest collaboration in the history of brain cancer research. This is a marvelous example of what can be achieved with a hacker mentality, co-design strategies, and powerful sense of purpose. Money did not make this happen — people did. Indeed, lack of money was a trigger for innovation, since it forced Cure Brain Cancer to hack the system. It is unclear that this order of systems innovation could have occurred in a well-funded research environment. As Catherine points out, the upside of the lack of funding is that brain cancer research organisations ‘haven’t had any systems in place; so we can be agile, try something new, take advantage of opportunities that exist now that didn’t exist five years ago. We can move’.
There is a profound lesson here for innovation teams. The largest and most well-funded scientific bodies in the world were incapable of changing the system of brain cancer research. Cure Brain Cancer was light on its feet with little to lose, and was thereby able to lead the redesign and act on the results. The story of its success is a great example of what can be achieved by a devoted group of people with a hacker mindset and a noble cause.
Do not underestimate the power of a noble cause. A noble cause inspires people to step into the unknown. They give everything they have. They devote themselves to a higher purpose. They dream big and act to change the world.
When our species looks back on the 21st century from the vantage point of the far-flung future, we won’t remember the products and services that fascinate most entrepreneurs, designers, and consumers today. The gadgets, goods, and amenities of the present era will have faded into history. We will remember the systems innovations. We will perceive how communications technologies and new cultural practices enabled human beings to radically reconfigure the way they lived, worked, and created. We will applaud our ancestors for their foresight and ingenuity in creating new platforms for getting things done, restructuring organisations, institutions, and whole industries to create new efficiencies and unforeseen opportunities for innovation. We will celebrate our collaborative creativity, for co-designing, testing, and implementing solutions to local and planetary crises, and for managing to maintain the thin envelope of oxygen that sits upon the surface of the planet in a state that is suitable for life. We will marvel at the innovations we wrought on the mechanisms of life itself, and how we finally managed to take control of life, saving untold human lives and becoming something more than human in the process.
Is this a story that you want to be part of? The opportunity to change the world is everyone’s birthright. To claim this opportunity, we need to look beyond the horizon of the status quo. We need to lift our eyes to the heavens and dream of systems innovation. We need to dream of greatness.
