September 11, 2014

Movember: changing a system collaboratively

This story, of Movember’s evolution from a fundraising organisation to one that is changing the trajectory of men’s health, speaks to what can be achieved if you strategically harness the collective wisdom of diverse stakeholders, develop a shared perspective and galvanise those disparate players to collaborate.

Movember raises funds for men’s health: primarily prostate cancer, testicular cancer and mental health. A lot of funds. In only 10 years it has grown its annual fundraising to $130 million (internationally).

Observing gaps in the care of men diagnosed and living with prostate cancer, the team at Movember decided they wanted to do more.

With a clear strategy and a lot of persistence and patience…

The prostate cancer field is complex, and stakeholders’ perspectives differ widely. So how has Movember managed to develop a shared perspective amongst stakeholders, a national registry to gather and share data, and a collective redesign of the system which supports people living with prostate cancer? With a clear strategy and a lot of persistence and patience is one answer. This article tells the story and highlights some of the insights and learnings.

The problem with prostate cancer

Every year in Australia, around 20,000 men are diagnosed with prostate cancer.[1] Other than skin cancer, it is the most common type of cancer in men.

And while the mortality rate for those diagnosed has halved since the mid 80s, in 2011, close to 3,300 men died of prostate cancer, more than the number of women who die of breast cancer each year.[2]

The number of men living with these conditions is growing.

As with other cancers, the medical system’s focus is on removing the cancer and the treatment needed to keep men alive. Less emphasis is placed on the quality of life post treatment. The system treats prostate cancer as an acute disease rather than a chronic illness.

Paul Villanti
Paul Villanti: “It’s about working collectively… to bring about the change we all want”.

With prostate cancer there’s a range of post treatment conditions and side effects which have a major impact on the quality of a survivor’s life. Conditions include bowel problems, urinary incontinence, sexual dysfunction and pain. All and any of these symptoms can contribute to anxiety and depression. This suffering has been exacerbated by the fact that men frequently don’t expect these conditions, remain silent about them, and don’t access support.

The number of men living with these conditions is growing. It was estimated in 2007 that 130,000 men lived with prostate cancer.[3] This figure continues to increase as the incidence of diagnosis rises.[4]

The Movember story

When Movember started in 2004, it provided all the funds it raised to the Prostate Cancer Foundation of Australia – the leading organisation addressing prostate cancer in Australia. A few years later, having realised that mental health was another significant issue for men, Movember provided block funding to beyondblue.

As an organisation formed by young entrepreneurs, it had always been very results-focused and it knew it could be smarter about getting more bang for its buck.

Elaine Farrelly
Elaine Farrelly: “We wanted to challenge the way things are done.”

By 2011, Movember knew the system dealing with prostate cancer was complex. The field included not only men and their families with personal experience, but the clinicians (oncologists and urologists), other medical practitioners, support organisations, researchers and academics, and the allied health practitioners who address the resulting conditions.

It knew there was a lot of overlap; that innovation in one hospital or area rarely scaled or migrated to other areas. And it knew that data on the health of men living with prostate cancer– their health outcomes – was poor or non-existent.

Movember was clear that it wanted to address the quality of life for survivors. and to do it well. “We wanted to challenge the way things are done,” says Elaine Farrelly, on Movember’s Board and until earlier this year its Chair.

But Movember needed to know what the specific goal that would reflect that quality of life was and how it could be achieved.

Strategic plan to improve health outcomes

Movember brought SVA Consulting on board to contribute to the development of a strategic plan to improve health outcomes of men with prostate cancer. The project was led by Paul Villanti, Executive Director, Programs who had been Movember’s first chair until 2011.

Movember needed to address the whole system and that meant bringing all parties along on the journey.

With a background in high-growth telecommunications companies, Villanti was familiar with working in a complex environment with many stakeholders.

He knew that to have more impact, Movember needed to address the whole system and that meant bringing all parties along on the journey. Everyone needed to share the same perspective on what needed to be achieved and, some at least, had to be galvanised to change the system.

So the process to create the strategic plan that Movember and SVA Consulting designed was highly consultative.

The first step: developing a common goal

The first part of the strategic plan was to talk with representatives of every group and profession in the field to start to define the health outcomes that matter for people with personal experience of prostate cancer – to come to a shared vision and understanding of what everyone wanted to achieve.

… it needed to be defined by the men living with this disease in a language that they could use and understand.

“To improve quality of life,” says Villanti, “we needed to know what the desired state is. And it needed to be defined by the men living with this disease in a language that they could use and understand.”

Based on interviews with 50 stakeholders plus existing data, the team identified the most important needs and grouped these into 12 themes, for example: ‘making a treatment decision’, ‘urinary function and bother’, and ‘acceptance of and preparation for possible consequences’.

Movember - Figure 1
Figure 1: The 12 themes for the quality of life conditions that men with prostate cancer seek – grouped into three categories.

These themes were then grouped into three major categories: access to high-quality information, care, treatment and support needs; physical wellbeing; and mental wellbeing (see Figure 1).

Identifying these patient reported measures is the foundation on which everything we do is built…

From these themes, the project defined the results statements and the indicators that reflect the key quality of life issues.

“Identifying these patient reported measures is the foundation on which everything we do is built and was a critical part of the work with SVA Consulting,” says Villanti.

Movember’s results statements

  • I had access to well-coordinated advice, treatment and care
  • I made a well-informed treatment decision that I do not regret
  • I had access to the treatment of my choice
  • The practical support needs of my partner, family, caregivers and I have been met
  • I have fully recovered from any urinary dysfunction that I had
  • My partner and I are satisfied with the level of sexual function I have
  • I have fully recovered from any bowel dysfunction that I had
  • My partner, family, caregivers and I are effectively managing any pain, fatigue, nausea and other symptoms experienced
  • My partner, family, caregivers and I are not depressed or anxious
  • My partner, family and caregivers and I know what to expect during and after treatment, including when and where to seek help if specific issues arise
  • My partner, family and caregivers and I are able to live a meaningful life in the community of our choice
  • I have accepted and am prepared for the possible consequences and possible outcomes of my cancer and my treatment(s).

The project with SVA Consulting also identified to what extent data on these outcomes was already being gathered around the country. Basically it wasn’t. The Prostate Cancer Registry serving Victoria and based at Monash University had started to collect some of this information, as had a registry in South Australia,[5] but it wasn’t comprehensive and the other states and territories had nothing equivalent.

Identifying initiatives that would impact quality of life

The next part of the project was to identify the initiatives that would have the greatest impact on these outcomes.

Movember consulted again with stakeholders to gather perspectives about where the gaps were, and where significant impact could be made. These ideas were gathered and rated by Movember for:

  • Specificity: was the idea specific enough to be implemented?
  • Reach: was the action feasible and affordable?
  • Leverage: how much difference would the proposed action make on the indicators? – the most important factor.

After further consultation and testing with stakeholders, the resulting plan recommended two initiatives:

1. To set up a national prostate cancer registry to address the gap in the quality of life data. It was clear from the consultations that neither Movember, nor any other initiative, could know if it was having an impact without this data.

2. To work collectively to design, test and scale a new model of care for men living with prostate cancer that would be sustainable across the country. This initiative Movember called the Australian Survivorship Action Plan (ASAP).

…needed to not only harness the collective wisdom of the stakeholders… but to galvanise them to action – as a group.

Clearly for both of these initiatives to succeed they needed to not only harness the collective wisdom of the stakeholders and their representative organisations, but to galvanise them to action – as a group. Movember enabled the collaborations by coordinating and supporting participants through the design and implementation process.

Shared measurement: a national data registry

The goal of the Australian Prostate Cancer Clinical Registry, as it is now named, is to have 90% of men who have been diagnosed with prostate cancer on the registry by 2017. The registry will collect treatment and clinical data, population data including age and socio-economic data, and the patient reported outcomes and make this data available in a de-identified way to stakeholders.

Monash University won the tender to be custodian for administering the registry on behalf of all stakeholders, nationally. There are also state/territory groups who gather the data in their area and pass it to the national registry.

Getting key stakeholders to believe it was a good idea was an important first step…

The registry builds on the pilots and existing work in Victoria and South Australia and expands that work into the other states and territories.

“Getting key stakeholders to believe it was a good idea was an important first step,” says Villanti. “We needed to get the clinical community onboard – and spent time talking with the leaders of different groups as well as survivors.”

Not only will the data track how things are improving for survivors, it will also provide data which could start to address the variations in post-treatment effects between different treatments and clinicians. (To date clinicians have no access to data about the consequences of differing treatments.)

Mark Frydenberg
Mark Frydenberg: “We wanted to ensure that all prostate cancer patients were getting quality and appropriate care”.

As Mark Frydenberg, Vice-President of one of the key stakeholder groups, the Urological Society of Australia and New Zealand says, “We wanted to ensure that all prostate cancer patients were getting quality and appropriate care.”

“Many urologists don’t know how they are performing compared to their peers. It’s important that they have that information. If the results are very different they can look at their techniques and see what they can improve,” says Frydenberg, who has been a champion for the registry.

To develop the registry, Movember set up two working groups: one to define the registry’s operation, the other to define the data it would collect.

If the key clinical representatives hadn’t felt that the balance was right, the initiative would have been stillborn.

Operational issues related to defining the role and the ethical and governance responsibilities of national vs state/territory level groups; questions such as what data is shared, who can see what, who has control of what, and how do you respond if an individual’s clinical outcome is significantly different.

“It was a long conversation to define the appropriate responsibilities,” says Villanti. “If the key clinical representatives hadn’t felt that the balance was right, the initiative would have been stillborn.”

As Frydenberg says, ethics is always the issue. “Many of the sites have their own individual ethics process; a centralised process would be a lot easier.”

Movember did a lot of work to identify who was prepared to step-up locally and to encourage them to coordinate the local clinical community.

Getting consensus on what data to collect was another tough challenge. “There are significant variations in the data collected across hospitals and clinicians,” says Villanti.

“Some wanted to collect enormous amounts of data, while other groups – particularly areas that hadn’t already got a registry – wanted a smaller or a different set. And there were different instruments for gathering patient reported outcomes.”

It was important that the data set being developed here in Australia was consistent with the international data set so that it can be compared.

Part of the complexity of the project was that related work was being done internationally on defining patient reported outcomes,[6] work that is supported by Movember and involves some local clinicians including Frydenberg.

“It was important that the data set being developed here in Australia was consistent with the international data set so that it can be compared,” says Frydenberg.

This meant more consultation and more time in reaching agreement.

Building on the work in Australia, Movember is also now funding registries in Ireland and South Africa.

ASAP: a model to impact survivors across the country

The second initiative was the Australian Survivorship Action Plan (ASAP). To have the impact Movember wanted, the ASAP design for an innovative care model needed to be a collaborative effort. And it had to be scalable.

The model is designed so that the care components – be they nutrition, exercise, or psycho-social support – are provided in an integrated way and are accessible to patients anywhere in the country based on need. If there aren’t services locally, then they are provided by phone or internet.

Movember chose to manage the project itself… to learn from the process…

Two years into the process, the initial pilot is about to be tested at a number of sites and will be adapted and scaled across six sites over the next three years. If successful, Movember will seek to catalyse scaling the model across the country.

Currently, resources are dependent on which part of the country a person is in. “Access in some regional areas can be very low; either it doesn’t exist or it’s not affordable,” says Villanti. “Even where the resources exist in hospitals or cities, the care teams are not integrated.”

Movember funded 15 groups to design, implement and test the model which is based on current chronic disease care models. “The clinical leadership wrote the research protocol,” says Villanti. “They’re the principal investigators driving and implementing the model’s development.”

Movember chose to manage the project itself rather than subcontracting (as with the registry) because of the complexity of the project, and because it wanted to learn from the process to facilitate implementation in other countries. It is also investing in the information technology delivery platform.

Equivalent programs have already been introduced in the UK, Canada and, most recently, in the US. Insights from the Australian project have helped to speed up overseas implementation.

Insights and learnings

The Movember experience offers a number of insights and learnings about the process, and approach, needed to bring about change in a complex system.

Independent well-resourced organisation

One of the reasons that Movember has been successful is that it is a well-resourced, non-political, independent organisation.

Movember had the capacity to plan and manage the lengthy processes.

Movember’s funding clout was a carrot (the possibility of funding initiatives during the planning phase), and meant it had the staff, skills and resources to support and manage the collaborative process.

Time is a big constraint for many of the experts, and it was really important that Movember had the capacity to plan and manage the lengthy consultative, design and implementation processes.

“We clinicians are pretty busy trying to look after the men,” says Frydenberg. “We don’t have the time to turn up to multiple ethics commissions or different hospitals. Movember has assisted hugely so that that specialists’ time could be used effectively.”

 Be highly consultative upfront

The strategic planning process engaged with each stakeholder numerous times, in groups and one-on-one.

Movember went back to stakeholders repeatedly to report what they’d heard and ask: ‘Is that right? What more is there?’ – both in relation to the outcomes and the initiatives.

…consultation enabled stakeholders to begin to share the same perspective…

“It was always about building the collective wisdom,” says Suzie Riddell, the SVA Consultant on the strategic plan. “Movember didn’t start out with a preconceived idea of what the answer was.”

The process of consultation enabled stakeholders to begin to share the same perspective and to really engage and get behind the initiatives – because they had come up with them.

“For Movember, it was as much about bringing everyone along on the journey as it was about coming up with any specific answer,” says Riddell.

Maintain open communications; make it easy to engage

Movember made it easy for people to engage in the project and to collaborate.

The team used online collaboration systems to make it straightforward for participants to contribute. The terms of reference and current drafts of documents under review were housed on the website for all to see.

Paul painted the journey as well as the destination.

“It made the process transparent. Everyone could see who was involved and how,” says Riddell.

Villanti also made the process very clear to stakeholders. He explained the steps, what the milestones were, and what needed to be agreed on.

“Stakeholders knew what to expect and when,“ says Riddell. “Paul painted the journey as well as the destination.”

Define and return to the common goal: shared outcomes

Both the registry and ASAP depended on having a common goal – the desired state for men living with prostate cancer.

“We focus heavily on the common goal. It’s the key piece,” says Villanti. “Everything has to come back to men’s health outcomes that matter. Then everyone can align, right at the outset, on what success looks like. Otherwise, you go off in different directions, do a hell of a lot of work, and don’t get anywhere.”

“Having a really clear set of health outcome statements that drive everything has probably been the most important and significant thing that we’ve done,” he says.

He was always focusing everyone on the common objective.

Significantly, Villanti was also persistent and skilled at bringing everyone’s attention back to the outcomes whenever there was a dispute or difference.

“Paul was constantly saying: this is what we want to change; what we want to achieve,” says Riddell. “He was always focusing everyone on the common objective, and saying this is where the agreement is. It helped build the alliance.”

Build trust and take the time

In Villanti’s view, trusted relationships are at the foundation of both initiatives. “You have to take the time to establish those relationships and bring people together face-to-face early on,” says Villanti. “If people don’t trust each other, things don’t go far.”

Villanti is humbled by the “enormous trust that stakeholders have placed in Movember to construct and implement it [the registry] in a way that respects their different interests”.

Get the design right

One thing that Villanti understood from his days in the telecommunication industry was the need to get the design right. “As much as it’s complex and challenging, whatever industry sector you’re in you see the same thing: if you get the design right, your ability to implement, execute, and succeed is so much more effective,” says Villanti.

We live in a world where we want to push things out straight away and have an impact immediately…

“We live in a world where we want to push things out straight away and have an impact immediately, but sometimes you just need to take a little bit more time, particularly with collective initiatives.”

In the case of the registry, getting the design right took longer than Movember had expected. A cost Villanti puts down to living in a federated system.

“A lot of the challenge was bureaucratic and IT-based because it’s a matter of creating appropriate linkages between different states,” says Frydenberg.

Find a way to get key personnel to commit time to the project

Experts’ lack of time was a big obstacle in both projects.

… Movember paid people, once they’d committed to the project, and in return demanded a time commitment.

“Design and implementation of ASAP took nearly two years because people were so busy,” says Villanti.

In a bid to solve this in the US, Movember paid people, once they’d committed to the project, and in return demanded a time commitment.

Villanti acknowledges that this was easier to do in the US than Australia, where the clinical research infrastructure is larger. However, this strategy was key in moving things forward more quickly.

Manage the change

The other big challenge for these initiatives has been and continues to be the cultural and systemic change that needs managing. For example, with the national registry, one of the challenges is to ensure that all the urologists understand what the data is to be used for.

As Frydenberg says: “we do not want the clinicians to feel that it’s a big brother thing. They need to know that any response to results that are outside the standard deviation will be about enhancing care, not a punitive thing.”

… there’s got to be a compelling reason for people to embrace the change.

“The changes with both the registry and ASAP ask people to work collaboratively when most of the KPI’s for these people are not always aligned,” says Villanti. “Again, this takes time.”

“A lot of this work is around doing things differently, so having a pretty good radar about how to successfully manage change is important – both in terms of how people work together and in the changes to clinical practice,” he says. “You need to have the key stakeholders on board; there’s got to be a compelling reason for people to embrace the change.”

Villanti’s experience in telecommunications, where he built high-growth, high-risk businesses, helped prepare him for tackling this kind of change management.

“In the end, it’s about working collectively. Building teams with the DNA to bring about the change we all want. We rely on individuals to champion and achieve that change.”

Conclusion

The story demonstrates the power of strategic funding and collective initiatives to bring about the change sought. Movember has used its considerable capacity to enable a collective effort across different areas that would not normally collaborate in this way.

With Movember’s skillful planning, engagement and facilitation, these groups are working together to deliver the results that they all want to see. This will produce a much greater impact than could have been achieved through simply calling for grants and funding individual projects.


Endnotes

[1] Prostate cancer statistics, Prostate Cancer Australia website

[2] Australian Institute of Health and Welfare (AIHW) 2014. Australian Cancer Incidence and Mortality (ACIM) books: Prostate cancer. Canberra: AIHW

[3] Prostate cancer statistics, Prostate Cancer Australia website

[4] Australian Institute of Health and Welfare (AIHW) 2014. Australian Cancer Incidence and Mortality (ACIM) books: Prostate cancer. Canberra: AIHW

[5]The South Australian Prostate Cancer Clinical Outcome Collaborative (SA-PCCOC)

[6] Movember has funded the prostate cancer part of international group ICHOM (ichom.org) which is developing a set of patient reported outcomes for a range of health conditions to be applied internationally.