Dr. Mark Buzza, the Director of Movember’s (https:// us.movember.com/) Global Biomedical Research Programs, is one of the driving forces behind the organization’s international collaborative approach and an evangelist for accelerating patient outcomes through global collaborations.
Prostatepedia spoke with him recently about Movember’s approach to funding global research consortiums.
Everybody knows about Movember’s annual moustache fundraising campaign, but I think few people know what you actually do with the money. Can you talk a bit about the research you fund?
Dr. Mark Buzza: Movember started back in 2003, almost as a bit of a joke amongst a couple of friends having a drink one Sunday afternoon. They were joking about fashion trends and how the moustache had gone out of style. They thought it would be fun to bring it back. From that joke, they built a moustache-building themed month-long campaign with 30 friends.
They didn’t raise any money the first year, but did start a conversation around men’s health. The next year, they realized that their friend’s mother was raising money for breast cancer research and they thought maybe they could raise a few thousand bucks for prostate cancer research with this idea. That’s how it started.
In the twelve years since, we’ve raised $800-plus million. Millions of people have grown moustaches and millions of conversations around men’s health issues have likely been had.
The money raised gets split into three main areas: prostate cancer, testicular cancer, and mental health/suicide prevention.
We see ourselves as the leading global men’s health charity. Everything we do has a gendered lens. Our focus is on men’s health. Our vision is to change the face of men’s health by ensuring that men lead happier, healthier, longer lives. Our raison d’etre is to stop men dying too young, whether by prostate cancer, mental health and suicide issues, or testicular cancer.
Within our prostate cancer portfolio we focus on three main areas: biomedical research, clinical quality registries, and clinically integrated survivorship services. Clinical quality registries can be an enormously powerful way to rapidly improve the lives of many men by systematically understanding treatment practices in different markets and what drives improvements and excellence in outcomes. Armed with this knowledge and learnings, Movember (in partnership with clinical stakeholders) seeks to influence positive changes in clinical practice. If we know from a clinical registry that a subset of patients in a particular population is doing poorly in terms of patient reported outcomes—sexual dysfunction or incontinence after surgery, for example—then we can develop or connect interventions that effectively address these issues. It’s all about better outcomes as reported by patients, not just what doctors say is good for patients.
We work with a lot of clinicians, patients, and epidemiologists and use patient-reported outcome tools to ensure the data is actually coming from the patient’s perspective.
The other side of the prostate cancer equation is survivorship. We’ve got an exciting flagship program called TrueNTH that has a global investment of $45-plus million aimed at significantly improving the lives of men diagnosed with prostate cancer, as well as their families. We are funding a substantial portfolio of programs aimed at addressing and reducing the key physical and mental side effects of treatment across all disease stages. Interventions include decision support, tailored exercise programs, and symptom tracking that enables men to compare their progress against men at a similar stage of treatment and provides tailored tips and resources. TrueNTH is a holistic, multidisciplinary survivorship program that aims to provide support from diagnosis all the way through the prostate cancer journey.
For testicular cancer, we focus on translational research and understanding the biology of relapse. Ninety-five percent of testicular cancers are usually curable, but we think losing 5% of those men is unacceptable. We want to understand why some men relapse so that we can optimize their treatment options in the future.
Finally, in the mental health space, we fund prevention and early intervention projects aimed at keeping men mentally healthy and taking action early when times get tough. The projects that we invest in all have the potential to scale within and across countries if they are successful.
Why does Movember focus on funding global initiatives rather then individual projects within individual countries?
Dr. Buzza: To be honest, in the very early days we were making this up. I put my strategy-consulting hat on and thought we’d be able to benchmark collaborative efforts around the world. In the beginning, there was very little happening to actually benchmark.
From 2004 to about 2010, Movember didn’t have any in-house investments, instead we funded research through our Men’s Health Partners. Funds raised in Canada went to Prostate Cancer Canada. Funds raised in the United States went to the Prostate Cancer Foundation. Funds raised in Australia went to the Prostate Cancer Foundation Australia or BeyondBlue, the national mental health initiative. All funds went to partners.
After talking to our partners, clinicians, patients, and the community, we realized there was very little consolidation within the global research effort. Everybody had a national lens. No one was taking an international approach.
In 2011, Movember was growing exponentially from a fundraising perspective. We were operating across 21 countries, had quite a large global footprint, and thought we had an opportunity to take a leadership role on collaboration.
We started investing some of our own funds. There are now 27 of us around the world in the in-house program team.
We didn’t have any models for global cooperation. The Michael J. Fox Foundation was doing some interesting things in terms of global clinical research collaboration, but that model didn’t quite work for us in the biomedical and translational research sphere. There was a company called The Myelin Repair Foundation that was doing some interesting collaborations between industry and academia, but it was mainly United States-focused.
We established a Global Scientific Committee of key opinion leaders in the prostate cancer field. Professor Colleen Nelson, Queensland University of Technology, the Chair of our Global Science Committee, has been a real champion for this collaborative model and continues to be an advocate for collaboration today.
It was a very organic process. In the early days, our Global Scientific Committee reached out to key opinion leaders in the Netherlands, Ireland, the United Kingdom, the United States, Canada, and Australia. Everybody on the committee reached out to four or five respected clinicians and scientists in their own countries. We grew exponentially. Word spread that we were trying to work collaboratively.
We started talking to people in each country. We’d have teleconferences with up to 10 or 15 people in a country and it became clear very quickly that many people in different countries were working on almost identical research projects. From the very onset you could hear that people were stunned as they all went around the room saying, “We’re working on that as well.”
At that moment, we knew that we were on to something. We learned very quickly that there was so much duplication of effort and that hundreds of thousands of dollars were being spent on duplicate research projects with almost identical aims. We asked the question: why not get these teams of researchers to work collaboratively, dovetail their efforts, and integrate their research when it makes sense?
Once we got going, we realized there was an opportunity to expand our global teleconferences, so we split the conversations into different themes in the GAP1 biomarker project: urine biomarkers, blood-based biomarkers, and tissue biomarkers. We then separated everyone into global crossfunctional, multidisciplinary teams.
We came up with a large team science model. We’ve got teams of researchers with very similar interests working on clinical questions that either matter to patients or will matter to patients downstream.
Operationally, we have a Movember Project Manager at the epicenter of each project setting the agenda and driving the project forward. Our Project Managers all have a strong background in science and project management. Many have a PhD in their field.
In those early days, that person was me. I was overseeing seven GAP1 projects. GAP1 is now essentially finished. Now my team members play the roles of Project and Program Managers.
What started off of as a $5 million investment in 2011 turned into a $9 million investment as we expanded out some important areas of the biomarker projects.
After the first year was successful—and we thought that we had the biomarker space well covered—we decided to expand the model out.
Now, each year or two we start to invest in a new GAP project. In 2012, we started the GAP2 imaging project by bringing the radiology, nuclear medicine, and medical oncology communities together. We brought on my colleague Sam Gledhill to lead that initiative, given his strong imaging background.
We funded four clinical trials under the banner of GAP2, each looking at new PET tracers to better detect metastasis and relapse after initial therapy. (The premise was that if clinicians could see metastases at a more granular level using cutting-edge PET technology, they could optimize treatment decisions that impact patients).
That area of research has exploded in recent years as PSMA and other tracers have moved from research to prime-time. We are pleased that we were able to catalyze this field and are thrilled that we invested in PSMA in the United States and Canada very early on.
We’ve invested in some really interesting tracers, one of which was Fluciclovine (Axumin). A biotech company called Blue Earth Diagnostics picked up Fluciclovine (Axumin). We divested some of our funds and let them run with it. Instead, we initiated our testicular cancer program.
We see ourselves as a catalytic funder. Sometimes we fund research for the long-term, but other times we catalyze a particular area and then let it grow organically. Blue Earth Diagnostics have since gotten Fluciclovine (Axumin) FDA-approved, which is a really pleasing outcome or our early investment.
For our GAP3 project, we invested in a global Active Surveillance initiative because we wanted to ensure that men with truly low risk prostate cancer avoid a lot of the side effects associated with active treatment if at all possible. For our GAP4 project, we invested nearly $10 million into a large international clinical trial looking at the survival and quality of life benefits of exercise in men with advanced prostate cancer. Dr. Rob Newton co-chairs our GAP4 steering committee with
Professor Fred Saad in Montreal. (See Prostatepedia April 2017 for a conversation with Dr. Rob Newton.)
GAP5 is our first testicular cancer initiative.
In essence, everything we do is about getting better outcomes for patients faster.
GAP1 is complete. Does that mean you won’t fund more biomarker research?
Dr. Buzza: This question comes up a lot and it’s a good one. The key consideration is: do we continue as a seed funder or do we pump more money back into a particular area of research that we feel is particularly promising? We assess this on a project-by-project basis and make a decision with our expert advisory committees as to what will likely have the greatest return on our investment for the men that we serve.
We focus heavily on the concept of knowledge translation and think about how we, as an organization, facilitate the knowledge generated from our projects to move through the development pathway so that the outcomes can hopefully change patients’ lives quicker.
One thing we are exploring at the moment is the concept of a GAP knowledge translation symposium where we get GAP-funded researchers, industry representatives, policy makers, patients, and insurers or payers into the same room. Researchers will present their findings and say: this is the data from our projects. How can we push this forward in a collaborative way that leverages partnerships?
Behind everything we do is the concept of collective impact. (Read Dr. Buzza’s article on collective impact.)
The concept of the collective impact model is that it brings disparate stakeholders together within a system to address critical challenges and to drive positive change.
One of the five principles of the model is that a backbone organization connects the various key stakeholders and acts as glue that holds them together. This organization drives the agenda, sets the meetings, and is responsible for pushing the actions forward. It is a hub-and-spoke model with the backbone organization in the middle of a range of other organizations all working together. Someone has to take responsibility for bringing everybody together and driving the change. It doesn’t happen by itself.
That’s what Movember is trying to do.
My role has morphed over the last 12 months. We now try to take more of a holistic approach to the $265 million that Movember has invested in biomedical research. I work very closely with our GAP-funded clinicians and researchers, as well as with the Research Directors of our Men’s Health Partners across Australia, the United States, Canada, the United Kingdom, and Europe.
We’re broadening the collective impact model we use in our GAP projects to include broader collaboration with our partners so that we can maximize the synergies within that funded research. What might that look like moving forward? Perhaps we’ll move into theme-directed research, where a pocket of our community works on immunotherapy while another works on drug development, for example.
We will see what happens over the coming months in that regard. In the same way that we wanted to reduce duplication of effort and investment with GAP, we want to make sure we’re efficient with all Movember-funded research.
That’s the plan moving forward. Again, it’s all about improving men’s quality of life and reducing mortality.
It seems like a lot of your research projects focus on Australia, the United States, Canada, and Western Europe. Why are you not including researchers from Asia or Latin America?
Dr. Buzza: The easy answer to that is that the funds raised by Movember in each community are usually spent within that market and sometimes we have regulatory and legal obligations to ensure this. You can imagine that if you were a Mo Bro, or a donor in Switzerland, you may want that funding to go to Swiss research.
It’s not always that clear-cut, but where we raise the funds is a key consideration.
You don’t raise funds in Asia?
Dr. Buzza: We do. We raise funds in Singapore and Hong Kong. Singapore is involved in our GAP3 Active Surveillance project. In Hong Kong, we investment via a men’s health partner.
We make investments through our partners in Singapore and Hong Kong.
Those are both English-speaking populations…
Dr. Buzza: Yes, they’re English speaking.
We haven’t had a formal Movember campaign in Japan, China, or India yet.
We also haven’t had any formal involvement in Latin America through the Global Action Plan, but we’re now starting to look at involving Brazil in one of our international clinical quality registries so that the data from men from Latin America are captured.
We do invest in a men’s health partner in South Africa, but they’re not involved in the Global Action Plan.
Are patients involved in any of the decision-making?
Dr. Buzza: Yes. We’ve got a patient representative on our Global Scientific Advisory Committee. Wes Sholes, a patient advocate from Los Angeles, lives and breathes prostate cancer advocacy. He does a lot of work with the Department of Defense and advises us from patient perspective. He brings a reality check to everything we do. He listens to the discussion and weighs in whenever he wants to. He is fantastic and brings us a real world perspective that only a manwith direct experience can.
How do you inform patients about the results of your funded projects?
Dr. Buzza: We do a bit of that through our Movember marketing channels: communicating where the research funding has gone and what the project outcomes are.
But we’re now thinking through how we can do that better. We want to better articulate the research highlights.
Through the knowledge translation symposium idea we’re developing, there is an opportunity to do this. We’d like to help men with prostate cancer understand what the results are and why they will potentially be important to them down the track. One of the challenges is that this is detailed nitty-gritty science and it’s quite a skill to articulate it in a way that is easily digestible.
So not necessarily understood by a lay population?
Dr. Buzza: Yes. We have a great in-house team that helps to translate the complicated scientific output into information more palatable to the layperson. Some of this stuff that we’re funding is incredibly important, but it’s incredibly hard to talk about say immunotherapy in a way that is understandable to a layperson. It’s a challenge. That’s the truth.
Can you speak a bit more about what happens to the data you produce? Is the data open to other researchers?
Dr. Buzza: We do have an online collaboration platform that we use to facilitate collaboration across countries and between teams, but that’s not really public-facing. It’s an online Wiki.
Each year, Movember-funded GAP researchers will produce a progress report, or if the project has finished, a close-out report. This is a ten-page executive summary outlining the research outputs, high-level data, and the publications arising from it. We always publish those close-out reports on the online platform so other researchers can read it, get a sense for the key lessons learned, and avoid the challenges that others have had.
We know that young researchers have looked at those reports and then taken a slightly different direction with their own research. It’s knowledge exchange in action, especially considering that it could be a year or more from the time a researcher submits a medical journal article until it is published. We want to get better about making that data, that information, and those lessons learned available online to researchers in real time.
In terms of big data sharing, I don’t think we quite have the skillset in-house to be doing that yet, but it’s certainly something that is on our radar and something that we are keen to explore moving forward.