The Cancer Research Leadership Forum project funded by the Macquarie Group Foundation demonstrates how a funder can support collaboration between non-profits as well as some of the inherent challenges.

Driver for the collaboration

The leading cancer charities initially came together to form the Cancer Research Leadership Forum (CRLF) in 2009 to exchange information and share learnings. However, after months of meeting and networking, the Forum was keen to focus on enhancing its collective investment in research.

“The idea was to bring the key national cancer research charities together to explore any collaboration which would maximise the impact of collective funding and get better outcomes for people with cancer,” says Carole Renouf, CEO of the National Breast Cancer Foundation (NBCF) one of the organisations instrumental in setting up the Forum.

“As cancer is defined by body part, for example, bowel, melanoma, prostrate and breast, and organisations have evolved around these cancer types, the sector’s structure does not support collaboration.”

Funders of this sector see it as increasingly fragmented, crowded and not working in solidarity.

“We all get comments from our donors: why don’t you work together?” says Professor Ian Olver AM, CEO of Cancer Council Australia, another Forum member. “The CRLF was set up to find new ways of funding research that could benefit all.”

The funder is necessary as the catalyst for change… You need that accountability, otherwise it could just be networking.

As well as NBCF and Cancer Council Australia, members include: Australian Cancer Research Foundation, Bowel Cancer Australia, Cure Cancer Australia Foundation, Leukaemia Foundation, Melanoma Institute Australia, and Prostate Cancer Foundation of Australia.

In 2011, these charities collectively contributed $83m of the approximately $300m total funding for Australian cancer research by government, private philanthropy and the charities.

The Macquarie Group Foundation (MGF) had granted funds to a number of the charities individually including the NBCF whose CEO at the time, Sue Murray, approached MGF about the possibility of funding a specific project with the Forum.

As the head of MGF, Lisa George says, “We’re a flexible funder, so people know that they can bat ideas around with us”.

MGF was excited by the opportunity to fund collaboration around research in a sector that had so many organisations and a reputation for fragmentation.

Both Renouf and Olver believe that in funding the project, MGF provided impetus for a specific outcome.

“The funder is necessary as the catalyst for change,” says Renouf. “I believe that the CRLF would have kept on meeting, but I’m not sure it would have been adept at producing such outcomes without the pressure of accountability to a funder. You need that accountability, otherwise it could just be networking.”

Olver concurs: “The funding gave the group a purpose and direction. During the earlier stages we were getting to know one another. But you can’t just sit around and talk, you’ve got to have a project.”

MGF’s neutrality was also important. “It’s absolutely ideal to have an organisation that has no vested interest in the outcome to put up funding,” says Olver.

Developing a national cancer research plan

The initial scope of the funded project was to develop a plan for national cancer research which could be of use to all funders. MGF chose to have one lead organisation to deal with. “Macquarie wanted someone who could steward the relationship with the funder and had the responsibility to deliver,” says George.

The $136k grant for the project was administered through NBCF which was held responsible for the key performance indicators (KPIs). The grant paid for various resources during the project and in addition, MGF hosted the project’s main event.

The grant was only a part of what contributed to the outcome… that’s the additional leverage you get.

Renouf took over this responsibility when she was appointed NBCF’s CEO at the end of 2010. Within the Forum, she chaired the Project Steering Group, which included executives from NBCF, Cancer Council Australia, Cure Cancer Australia Foundation, a consumer representative and a representative from Cancer Australia, the Federal Government’s national cancer agency.

As well as the grant, participating organisations contributed in kind in terms of CEO, Director of Research and other staff expertise and time, or the members who could not contribute in this way put up some funds.

“The grant was only a part of what contributed to the outcome. A lot of organisations put time and other resources in; that’s the additional leverage you get,” says George.

The first stage was to call for public submissions and develop a white paper, Towards a national cancer research plan, which was published in February 2012. All members of the CRLF contributed to the paper which identified the main issues in cancer research. It was distributed to all key stakeholders (including government) for feedback. Several government agencies advised the CRLF to focus their plan on the charity research sector rather than all research nationally.

In redefining its scope, the group chose to develop a resource that identified gaps, overlaps and critical needs in research funding rather than a plan.

“It was less ambitious and probably more sensible than the original scope,” says Renouf.

However, the intention remained to help inform investment decisions by any cancer research funders.

To help identify the key issues and opportunities, CRLF invited a broad range of participants, including cancer researchers and clinicians, consumers, research institutes and funding organisations, to the National Cancer Research Summit in September 2012.

In the one and a half days, multidisciplinary groups identified issues and challenges related to the cancer research workforce, infrastructure and funding mechanisms, priorities and gaps that are not being addressed, and potential solutions.

Results of the Summit combined with feedback on the white paper were incorporated into the report, Maximising the impact of cancer research funding in Australia: a national resource to guide research investment and improve cancer outcomes published in January 2013. It gave specific recommendations across six areas:

• Enhance collaboration between research funding organisations
• Develop novel funding approaches, mechanisms and criteria
• Identify and fund research priorities and gaps
• Establish and maintain research infrastructure
• Support and build the research workforce and
• Engage consumers and other stakeholders in research planning and funding.

Macquarie was accommodating. They focused on the end results rather than the details of the process…

As the entire grant had not been used at this stage, NBCF proposed conducting conversations with community groups in 12 cities nationwide to understand whether the report matched the reality of people’s cancer experience. A further report will be prepared incorporating this community response and distributed once again to the national cancer research community in March 2014. The Federal Department of Health has granted $10k for production and dissemination.

“The Community Conversations weren’t in the original scope,” says George, “but it worked out. The change came partly as a result of the leadership change at NBCF, and also what the organisations in the Forum thought was best.”

The project also took longer than was planned. The grant, signed at the end of 2010, was for one year. However the final, additional stage wrapped up at the end of 2013.

The CRLF valued MGF’s flexibility when faced with these changes to scope and timing.

“Macquarie was accommodating,” says Olver. “They focused on the end results rather than the details of the process which was important as all sorts of things can and did happen.”

What are the results of the collaboration?

The CRLF is now acting on the report’s recommendations and exploring the possibility of funding some research across cancer types.

“We want to define a research question that cuts across the majority of tumour types that at least some of the organisations are willing to fund,” says Renouf. “It could be work at the molecular level, or how to stop the spread of cancer from the primary organs. This would produce an incredibly positive public reaction.”

There are other sub-groups of the CRLF looking at other recommendations such as how organisations could measure research impact in a more uniform way. And there has been one new partnership: NBCF and Prostate Cancer Foundation of Australia are co-funding a new fellowship.

While the impact of the report will be realised over time, Olver observes that it will be difficult to measure. “We won’t know what has been guided or informed by the report unless organisations tell us,” says Olver.

Lessons learnt from the collaboration

Value of collaboration

Within months, the group learnt how large its collective funding was relative to the national spending on cancer research – almost a third. With this came the awareness that its collective strength was considerable.

“We hadn’t realised that before,” says Renouf. “We saw that if we were to flex our collective muscle we could do something different, because we could be more agile and free than government and private funding. We could even look at disruptive funding models.”

Renouf had high hopes for what the Forum could achieve by way of structural change and efficiencies. However, she says so far there is little talk about back-office mergers even though “it’s probably one of the best things we could do from the point of view of the donor community”.

“The science is moving away from cancer being defined by body part, so changes to structure have to come.”

Renouf believes that this will change in time.

 … we’re not born collaborators. Collaboration needs to be practiced.

What worked well in the collaboration was the diversity of organisations it brought together.

“The breadth of views worked well,” says Olver. “There were large organisations like the Cancer Council Australia representing cancer organisations, small ones like the Cure Cancer Australia Foundation, and many that are disease specific. Being able to pool all these views gave strength to the final result.”

Olver also believes that many of the researchers and other experts who participated in the Summit were inspired by what the collaboration promised. “I think they felt that, because of the collaboration, there was the potential that the recommended changes would happen.”

Insights into collaboration

Regarding the process of collaborating, Renouf sees it a bit like parenting.

“In the same way that you’re not born a parent but become one, we’re not born collaborators,” says Renouf. “Collaboration needs to be practiced.”

“You have to practice it and practice it and practice it; your tolerance level and skill grows with practice.”

You start by sniffing each other out. Ideally you move up the ladder to the point where you’re all equally accountable and equally leading.

With high expectations for the level of collaboration, Renouf has learnt some valuable lessons. “You’ll always have some that do the heavy lifting and some that are there for the ride. At different times, perhaps always, people will have different degrees of commitment to the collaboration,” she says. “I realised that I had to accept that. But the formation of the group itself, and its ongoing willingness to meet, stands for something.”

In plans to co-fund research areas, Renouf doesn’t expect 100% of the group to participate.

“Group work is always like that. It’s about the individuals and the relationships between people.”

She also came to understand that in collaboration there’s a spectrum of participation.

“You start by sniffing each other out. Ideally you move up the ladder to the point where you’re all equally accountable and equally leading. We’re somewhere about a third of the way up.”

She sees co-funding research projects as another step on the collaboration ladder.

“You want to get to the point in a collaboration where the leadership is shared. Initially that doesn’t happen. You need a leader to get it going,” says Renouf. “As the lead organisation, it can be tricky to get things moving without being perceived as taking over. It’s an interesting balance.”

It shouldn’t matter where the funding sits. It’s a three way partnership: the funder, the body holding the money and the others.

MGF was invited to attend a couple of meetings to help remind members of their responsibilities to the funder and steer them back to their purpose and deliverables.

Renouf wonders if a rotating chair would have supported greater shared leadership and accountability. The Forum doesn’t use a chair to run meetings but is facilitated by an external facilitator.

“It means an organisation can sit back,” says Renouf. “A rotating chair might help to share the responsibility and leadership and hence the accountability. Ultimately the question is ‘does everyone share the same sense of accountability?’”

Renouf thinks that even when the funding agreement is with one of the organisations, this is possible. “It shouldn’t matter where the funding sits. We don’t deploy it for our own purposes; we’re just the stewards of it. It’s a three way partnership: the funder, the body holding the money and the others.”

As the funder, we saw these organisations as being quite brave saying, ‘it’s not just about our cancer, it has to be about the bigger picture’.

Going against the traditional loyalties of their organisation can elicit negative reactions from colleagues and present challenges for the collaboration’s members. This became apparent when Renouf spoke publicly for the CRLF.

“People don’t necessarily understand that you’re speaking with a different hat on,” says Renouf.

“When I said publicly, ‘we need to raise more money for other cancers,’ some other breast cancer organisations and the media heard this as ‘breast cancer gets too much money’. They couldn’t see that I was representing the Forum.”

George believes that it’s these attitudes that make collaborating hard.

“As the funder, we saw these organisations as being quite brave saying, ‘it’s not just about our cancer, it has to be about the bigger picture’,” says George. “It’s a real barrier if, in your world, you’re going to get into trouble for not sticking to your knitting.”

Renouf has already observed some push back from members of the public and the research community on plans to explore research across cancers likely due to their involvement with a particular cancer. However, she is keen to keep the focus on the most efficient and effective ways to serve.

“At the end of the day, we owe it to the community to give them the very best bang for their buck. By and large the money comes from the community, and it’s the community’s problems we’re trying to solve.”

How to fund collaboration

MGF acknowledges that the funding system, which provides grants to individual organisations, deters collaboration. As George says, “It’s competitive from the outset”.

By funding a group of organisations, the funder can leverage its own contribution and draw on the range of expertise and resources in multiple organisations.

You’ve got to have accountability and it has to be with one institution; it’s very difficult to share that out.

The funder needs to be patient and flexible with both scope and timing.

“Things change and you need to be willing to renegotiate the KPIs. It requires a more hands on involvement,” says George.

“We’ve also learnt that the timing might blow out with collaborations. It takes twice as long to get something off the ground with 10 organisations. In this case, it probably took eight months for them to get comfortable with each other. That’s the nature of collaboration.”

MGF has funded two other collaborations in the last year and a half both of which have changed more in scope and timing than normal grants, according to George.

MGF chose to fund the collaboration through one organisation so that it could steward the relationship with the funder and carried the responsibility to deliver.

Olver saw this funding arrangement as the best structure. “You’ve got to have accountability and it has to be with one institution; it’s very difficult to share that out.”

Olver also believes that having accountability to the funder is important for governance purposes in a collaboration. “It tightened up our methodology and formalised the reporting process. It was particularly helpful that the funder had skills in that area.”

… the lead organisation can’t deliver on the cooperation without the people around the table.

MGF chose NBCF as the lead organisation for two main reasons: the relationship it already had and NBCF’s strong reputation in the sector – both amongst the charities and the cancer field more broadly.

“NBCF was a big player and well respected by the other organisations. You needed to have someone with credibility to be the leader to get the group to do the work,” says George. “If it had been one of the smaller players, it might not have had the same influence and got the same outcomes.”

Having said that, George stresses that it’s important to understand that the lead organisation can’t deliver on the cooperation without the people around the table.

On a couple of occasions, MGF was asked to attend meetings to help muster focus – at the same time giving George a reality check on the group’s progress.

“Attending the Forum’s meetings was beneficial in understanding their level of commitment and the expectations around the deliverable,” says George.

Another suggestion to encourage dialogue and enhance the spirit of collaboration between organisations is for the funder to bring together representatives from the members’ Boards. “Given that, from a funding perspective, the Boards are probably thinking territorially, it could be another way to overcome resistance to these collaborations,” says Renouf.

Summary

Collaboration offers a way to address the broader community’s needs and overcome vested interests. A funder has the potential to catalyse change in a sector by focusing efforts on common interest and holding the group accountable to a specific outcome.

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