Transforming charity – How a 35-year-old organisation changed it’s game

A Case Study of Sylva's reinvention story: Making impact and new services by applying a framework of vision, culture, skills, governance & data, and approaching organisational reinvention using basic service design methods

Practical case studies of organisational reinvention are often hard to find – not because transformation is not being actively done, but because companies tend to be protective about how they’ve tackled the challenge. While I’ve had the privilege of helping organisations across industries in transformation, most cases can be referenced only in broad terms.

"Reinvention is built around strong human factors: bruising of egos, accepting vulnerability and recognizing that behaviours that made organisations successful in the past need to be left behind."

I believe one factor causing this is that reinvention is built around strong human factors: bruising of egos, accepting vulnerability and recognizing that behaviours that made organisations successful in the past need to be left behind. In the corporate world, these are matters less discussed.

This is why I’d like to share in more detail a transformation from the non-profit sector: the story of Sylva, a 35-year-old cancer charity, that has been through a radical journey of reinvention in the last 1,5 years.

In her history, Sylva has been instrumental in helping transform the care of children and youth with cancer in Finland. Subsequently as survival rates have increased, the focus has shifted to guaranteeing access to long-term follow-up care after treatment, and in mitigating the impact of cancer to the lives of the patient and family. 

Back in early 2016, the charity faced numerous challenges: fragmentation of the Finnish cancer non-profit sector, inability to fully embrace and expand new radical opportunities such as the “Fuck Cancer” youth campaign, a stagnant service offering, as well as a talented core organisation that was overworked and held back by a lack of modern processes. 

It’s very easy to draw parallels with the business world.

Luckily Sylva was in a good position to start a transformation journey, thanks to prudent fiscal stewardship and a solid reputation. The long-serving core group of Sylva, including many original founders and multiple-term board members, saw the need for change. Breaking with tradition, they decided to invite a new Chairman of the Board from the business world. I have written about surviving cancer in my early twenties as a regular columnist for the Finnish Cancer Society’s magazine, and had organised fundraising and video game donation campaigns for the children’s wards in Finnish hospitals, so I had the honour of being appointed Sylva’s chairman in May of 2016, with a mandate of helping the charity reinvent itself for the next 35 years.

At the same time, our director Anne V?h?kyl?-Aulo was retiring, and the organisation was looking for a director from the new generation, with strong experience from the non-profit sector. We recruited Marika Aro, whose learnings from her work at Helsinki Missio (an NGO for social services) and experience in building a framework for volunteer work proved invaluable in the transformation journey.

Finally, we set out with the intention of developing the work of the organisations executive board. A key decision was made to expand from the history of appointing only people with first-hand experience of childhood or youth cancer. Our first member of the board who joined as an external expert was Katja Metsola. Her career in digital consultancies driving the digitalisation of the Finnish health care sector helped shape Sylva’s approach to tackling many challenges such as outdated internal processes, fulfilling privacy requirements set by the GDPR rules and setting up common digital platforms for the cancer non-profits.

With new leadership in place, Sylva set out to shape her vision.

Setting a Vision builds Shared Ambition

I believe that organisational renewal needs to start from setting a vision that makes it clear for everyone why we are embarking on the transformation journey. While Sylva’s mission – to provide support and a chance for a good life for children & youth with cancer and their loved ones – is inscribed in the rules of the charity, we wanted to also set an ambitious but achievable goal to aim for in the future.

While similar organisations such as Sweden’s childhood cancer fund Barncancerfonden state visions of eliminating childhood cancer, we wanted something that’s completely in our hands within the decade. 

Through group workshops and surveys, we built an understanding that even though only 160 children and roughly 300 youth are diagnosed with cancer annually, every year we had roughly 225 patients participate in our events, courses and benefit from our other services. There were many who we couldn’t reach and support.

This made us set a vision: “We reach and support every child and youth with cancer, and their loved ones”. By committing to serve everyone, the vision impacts all our activities as a charity, from challenging us to take a proactive approach in outreach, to shaping our role through each individual patient’s journey. How can we make sure every patient and family knows that we exist, and also find those who don’t know? How do we actively seek out the ones who don’t have the strength to come to us? And since this is impossible to achieve alone, how do we build the network that enables the vision to become reality by co-operating with hospitals, other NGOs and volunteer groups?

When we first shared our vision to the Finnish cancer non-profits, there was healthy skepticism whether or not it was achievable, but it created a mutual sense of purpose between Sylva, a national organisation, and the numerous local charity clubs, groups and foundations by turning the focus towards the patient and their families. 

It also served as the North Star through which we could start looking at the four key components of transformation: culture, skills, governance and data.

Culture Drives Change

Together with the new director Marika Aro and the board, we identified culture as the key component that we wanted to set as the linchpin for the organisation. In addition to setting the vision, we defined four key values that we hoped would start ushering in a new sense of identity.

“Trustworthiness” is crucial for a charity, but we believe it has to be stated out loud to constantly remind us to be good stewards of the money entrusted to us by the donors and to have maximum impact on the patients’ and loved ones’ lives. “Empathy” followed, to make sure we understand the difficult circumstances and individual stories of each of our clients.

But for the last two, we wanted to make a break with the past: “openness” meant committing to transparency, co-operation and becoming more accessible. “Bravery” defined the attitude we needed to have for the future – not being afraid of change, but daring to invent new forms of support and engagement and to let go of the past.

With these values, we began first transforming the culture.

"A lot of cultural change comes from small acts."

One chafing point in the co-operation between Sylva and local charities had been the distribution of money from national fundraising campaigns. We decided to make sure locals got to keep all the money they had raised with our support, while Sylva shifted her fundraising focus towards the national level. By making sure that the local teams got maximum benefit from their efforts, it shifted our dialogue to helping the patients and their loved ones instead of squabbling over money.

Culture is also built by the space an organisation occupies. Sylva had her headquarters in a beautiful old building in one of Helsinki’s prestigious neighbourhoods, but the location was hard to access by families and not suitable for events. As on office space (see image on the right), it was cramped and didn't promote cooperation or teamwork, as well as lacking modern meeting and project spaces. A key initiative to turn “openness” to practice was the sale of the old offices and a move to a new office space.

Working together with COREspace, a Helsinki-based startup specialised in designing spaces that support organizations’ strategic goals, we scouted different locations, ultimately deciding to renovate an office right next to the major public transport hubs of Helsinki. COREspace also connected us with other organisations that donated their services and products pro bono or at a discount, for example allowing us to have a Smartblock working space in our office.

The main philosophy for the new space was that Sylva needed a place that could open it’s doors to the outside world, in addition to providing functional and inspiring facilities for our employees. That meant building an office around a communal kitchen/living room space. 

We accepted that we couldn’t plan beforehand what uses the space would find, and instead believed that by creating an opportunity new activities would emerge.

Since the move in summer of 2017 that has proved true many times. Sylva’s offices now host monthly coffee meetups for youth with cancer, art therapy for parents of kids with cancer, and it has become a place which brings NGOs together around a common table. Our joint planning days with local charities have taken on a different character since we are not stuck in a hotel conference centre and are able to work in a home-like atmosphere.

Changing the culture also required tough and brave decisions. We wanted to make sure the whole team of employees felt responsible for continuous development of Sylva, so we terminated the separate development function that was assigned to a single employee. This also allowed us to set clear areas of responsibility based on patient segments instead of organisational functions. Although firing and hiring always creates turbulence in an organisation, it also made sure we didn’t just change things in theory, but wanted a new start for the team.

A version of the framework we applied at Sylva. Vision is supported by the four building blocks of transformation, and at the core is the combination of customer needs, value creation and technologies we can leverage.

Your Employees Lift You

In addition to focus on culture, we needed to start building on the three other building blocks of transformation: governance, skills and data.

For governance, Marika Aro introduced a new way of leadership, built around personal goals and autonomy in working towards them. Involving the whole team in both building the big picture and sharing the operational workload, she was able to make sure we retained key employees and were able to hire top talent from the market.

In the past months we’ve recruited a specialist focused on supporting families, a fundraising manager and are now looking to open a position for a coordinator of volunteer work. For each position, our goal is they will provide a multiplier to the impact of each euro donated to us. One form of cooperation I’d like to highlight is the work of Kati Kitti, one of Finland’s leading recruitment specialists, who donated her time to do talent acquisition in ways rarely seen in the NGO sector. Again, through her we were also able to reach other organisations who gave us their services pro bono, like RecRight and Oikotie classifieds.

At the same time, with governance committed to trustworthiness and openness, we showed Sylva was a serious organisation driven by chasing impact with our donors’ money. With every step of improved communication to contributors, we were able to significantly increase donations both from private individuals and from corporations. 

Much of the trust was also built through basic things such as engaging the services of a law firm specialised in NGO work to help us handle the cases where money was bequeathed to Sylva to help patients and their loved ones.

By communicating openly and searching for new ways of cooperation, we’ve built a strong link with the Finnish Cancer Society and Foundation, supporting their general organisation in specific cases around our area of specialization, youth & childhood cancer.

Being open to opportunity and having the bravery to help others without first thinking about the benefit to Sylva has reaped rewards multiple times. Having our occupational therapist Anna-Elina Rahikainen share her time between Sylva and the newly established Helsinki Hospital District Comprehensive Cancer Centre is a great example of planned serendipity – by allowing chances for new forms of co-operation emerge, something good is bound to happen when people who share a vision come together.

"By making sure the operational level of an organisation increases their skills, it also feeds new ideas up towards the board."

A better sharing of workload and prioritisation has also allowed the team to invest time in building their skills. Continuous development of employee skills is as crucial for a charity as it is for a corporation, so Sylva has invested in sending employees to conferences both to speak and attend, and to participate in trainings around topics like social media and NGO development. By making sure the operational level of an organisation increases their skills, it also feeds new ideas up towards the board.

Finally, we’ve started the journey to take Sylva’s handling and use of data to a modern level. With the requirements set by the new European data regulations, we took the opportunity to move to fully digital financial and operational practices.

Thanks to our relationship with the Finnish Cancer Society, we took an active role in supporting the development of common platforms across the Finnish charities in the field. In 2018, we will adopt a shared CRM system, and build a capability to understand how far we are in realising our vision of reaching every child & youth with cancer, and their loved ones. With our digital expert Katja Metsola from our board in the steering group of the initiative, we are also able to contribute by both supporting the larger initiative and sharing our vision with the other cancer NGOs.

What’s next for Sylva? Join us!

In many ways Sylva’s transformation journey has only begun by the setting of a vision, and by making sure the four building blocks of culture, governance, data and skills are in place. Now comes the truly relevant part, which we’ve only started touching upon by the new services and events Sylva has created so far.

At the core of what we do are the patients and their loved ones, and next we start designing the role we and our partners have in supporting them better through the journey of having cancer to building a good life after survival. 

Here, we will look to methods of service design to better understand the unique stories of the people who look to us for help, as well as to discover ways to find and support the ones who don’t have the resources to come to us for help.

For us, 2018 is the year we commit to understanding the impact of our work even better, and designing better services for children, youth and families.

"We can’t leave anyone at the mercy of chance."

It is an unimaginable tragedy when a child or a young person falls ill, and one that can strike anyone regardless of education, financial situation, social status or place of living; and one that I feel that as a community of citizens requires attention from all of us. We can’t leave anyone at the mercy of chance. Instead, we have to make sure we come together to be strong for the ones who have bigger battles to fight.

It’s our goal to create the framework for Finland that allows for individuals and organisations to join us in providing the support needed for kids and youth with cancer, and their loved ones. 

We all look for meaning in our work, and charity is a key way of finding that. If you have an idea of how you could work together with Sylva to making our shared vision of no one having to face their battles alone a reality, don’t hesitate to reach out to me.

Lassi Kurkij?rvi is the Chairman of the Board of Sylva, the Finnish cancer charity that helps children and youth with cancer and their loved ones. He receives no monetary compensation for his work with Sylva. In his professional life, Lassi works as a Vice President at Solita, a leading Finnish digital consultancy, supporting top Finnish companies in digital transformation and organizational reinvention.