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Kraftens hus (House of power)

Social innovation design by, for and with cancer-affected

Summary

“Kraftens Hus” is a social innovation project based in Sweden designed by, for and with cancer-affected. A collective user-driven design work led by a service designer has resulted in the establishment of a sustainable NGO, an open meeting place and a new way of working for the involved parts.

Introduction

One in three people in Sweden will be diagnosed with cancer during their lifetime, and almost 40 percent of these are children or people of working age. Meanwhile, better treatment and earlier detection mean that more people are living longer with the disease (Socialstyrelsen and Cancerfonden, 2013). However, life is changing on many levels after a cancer diagnosis.

A cancer diagnosis affects a person physically, mentally, and socially. Returning to a well-functioning life after cancer requires rehabilitation and cooperation between many different organizations in a person’s ecosystem both private and public, such as healthcare providers, social insurance company, employment agency, employers, schools, etc. However, cancer patients and relatives often experience psychosocial support as insufficient – both during and after treatment (Olsson, 2016).

Without such support, finding one’s new identity and way back to everyday life is difficult. In addition, the risk for relatives to fall sick due to stress caused by the disease increases by 25 percent one year after the diagnosis (Sjövall, 2011). Not only does a cancer diagnosis affect patients and relatives, but also colleagues at work, healthcare providers, social insurance agency, employers, school, etc. The social welfare system alone will not be able to tackle this challenge. Therefore, we need to think in new paths about how public and private resources can be integrated better to provide support for cancer-affected, in a holistic way. In this innovative design project, the gaps between the involved stakeholders in a cancer patient’s rehabilitation journey were identified and all of the actors were invited to participate in a collaborative service design project with the aim to design better-integrated solutions beneficial for both cancer-affected and all stakeholders.

The service design process was laid out in seven steps following the Double Diamond (Brown, 2009) idea. The content of the workshops was not decided beforehand but designed based on the results of the previous workshop in an explorative fashion.

Envisioning

A large number of the involved participants (51 in total) from different parts of the society were invited to join the kick-off workshop of the project. The project team – that included the service designer, a project leader, a patient, a senior advisor and a researcher – was keen to question the obvious: “Does Kraftens Hus need to be a physical place?” and challenged the participants to think more freely starting with the needs of cancer-affected rather than the solutions.

It is important to highlight that everyone in this room was a cancer-affected and cancer was defined as a life-event rather than purely a disease in order to see the situation of the patients as a whole. Through a life-event perspective, the individual’s needs and journey through the system were put into focus. The life-event perspective illustrates that multiple actors and service providers are involved in a fragmented system. And in order to explore new ways of delivering support for people affected by cancer, it was important to have all relevant stakeholders in one room for discussions.

In addition to the life-event perspective, the project group was eager to follow certain guiding principles in this service design approach. These principles were 1) being open to explore unknown terrains, 2) the best way to understand a system is to try to change it, 3) a positive and ”opportunity-oriented” approach, 4) explore possibilities for sustainable organizational models in order to achieve societal change. Firstly, the participants interviewed each other regarding their personal needs in relation to the cancer subject. One part of the interview was also about how each and every individual would contribute with their personal experiences, skills or network to support cancer-affected.

Later, in groups of five-seven, rough ideas for newspaper articles of the year 2020 about a successful establishing of a meeting place for cancer-affected were developed. This exercise made it easier for the participants to share a first, common vision of what might be to come and helped them to illustrate the needs and contributions they discovered during their interviews.

The reason why these tools were used was to assist the participants to get to know each other, to lead the first discussion around personal needs rather the solutions and brainstorm about how these needs could be met. As an effect of this first workshop, it could be observed that the participants started to build networks and got acquainted with each other, which helped with the continuation of the process. A visual map of needs and contributions was developed as well. Examples of needs of patients and relatives:

1. Get support, get activated
2. Cure loneliness, distraction
3. Get positive role models, meet like-minded in the same situation
4. Enable spontaneous meetings, have a natural meeting space
5. Learn to live with cancer, share stories and experiences

Empathy

As a next step, the main critical stakeholders - besides the cancer patients and relatives themselves – the local hospital, social insurance agency, and labour office were interviewed in focus groups by the project team in order to get a better understanding of their existing challenges and needs and to ensure their stated willingness to collaborate. It felt important that these critical stakeholders were interviewed separately to really get them onboard the project. All three organizations confirmed their support for the project on various levels. As a result, the visual map of needs and contributions was expanded. Some examples of specific takeaways:

Hospital:

• sees a benefit that cancer patients can meet others in similar situations
• doesn’t want patients to get "stuck in their disease”
• sees the value of a support function outside the hospital
• secrecy policies make it difficult for staff to connect patients
• healthcare focuses on the disease
• realizes that there is an “information problem”
• expresses that there is a lack of time to connect with patients

Social Insurance Agency:

• aware that staff often feels inadequate in handling cancer patients
• expresses a need to develop skills how to handle the system for cancer patients

Employment Agency:

• wants to offer a contact person for patients and families
• open for dialogue around job training and similar activities
• can provide information evenings

Emotional mapping

The underlying needs of cancer patients were uncovered through visually mapping feelings and emotions a cancer patient is living through during a “patient journey” (the experience from cancer diagnosis to “successful” treatment or medication). In total ten patients and relatives took part in this workshop. The workshop was set-up in a classical way – starting from documenting all steps and connected actors/emotions individually to later on create a holistic patient journey with three layers (emotions, involved actors, ideas what could have helped in various situations). This exercise appreciated the dramatic emotional journey a cancer patient is typically going through and gave the participants the possibility to express their feelings but also to leave their emotions behind once mapped in order to come to a higher understanding of their actual needs during this journey. The participants mapped which actors/persons had a positive and negative effect on them during this journey. This helped the project team to gather a valuable and thorough overview of involved actors that are often overlooked otherwise.

The main finding of this exercise was that often individual people – hospital staff, family members or other individuals – can have a major impact on the wellbeing of patients both regarding practical and emotional support. It seemed that meeting the “right person” was rather random and someone’s experience can really depend on having the luck to have met such a person.

Ideation

Next, the project team realized that is was time to create a joint vision for the project participants. The service designer and the project team set-up a collage workshop. The participants created a collage of images representing the joint vision of Kraftens hus. Through using images rather than words, the participants had a greater possibility to associate individual perspectives to this vision but also came to a deeper meaning of their joint vision since the soft values are accessed easier by taking away the layer of (written) language. The participants worked in two group, creating two collages. Surprisingly, both collages turned our very similar in both tone and meaning.

The result was two collages that were used as a point of reference in all later stages of the project. It became clear that Kraftens hus should be a calm place close to nature, that is easily accessible with public transport. Another main point was an open and inviting feeling where everybody should feel welcome. The big dining table as a central meeting place became the main “ingredient” in Kraftens hus.

Concretizing

All these intangible parts needed to find a tangible form. Considering all the research and analyzed stakeholders’ needs, it became quite apparent that Kraftens hus should be a physical space indeed. Hence, the design process was complemented with the creation of a business model canvas (Osterwalder et al., 2010). 21 participants representing all stakeholder groups were invited to think about concrete values for Kraftens hus. The different parts of the canvas were discussed in differed groups and later on documented in an enlarged canvas on the walls of the workshop space. The groups generated a number of value propositions, each of which integrated resources for the specific purpose.

The Business Model Canvas made the ideas, aims, and dependencies of this venture more tangible and lead to a concrete time plan for a way forward. For some of the participants, the idea of Kraftens hus became realistic at this stage for the first time. Furthermore, two works groups – the outer and the inner group – were established that were eager to look deeper in specific topics such as finances, sponsoring, founding of an organization, interior architecture, event planning. These two groups worked more on these topics separately before meeting for the packaging workshop.

Packaging

After working with the business model, the participants were invited to a prototyping session to create physical mock-ups of the formed ideas. Three concepts based on the size of the space and financial possibilities were developed. The participants physically moved cut-outs of furniture and appliances around an architectural drawing and created the missing furniture themselves. These concepts focused on the functions of different rooms and needed resources. The concepts were further developed in an interior design workshop discussing colours, look and feel, materials and concrete furniture. Another workshop dealt with ideas around activities that could be held in the different rooms.

In the translation of needs to spatial design, the patients and relatives highlighted the kitchen as the natural meeting place for spontaneous meetings and conversations. Like in many modern Swedish homes, an open kitchen with a kitchen island and dining table was seen as the heart of the venue. There were also rooms for consultation, meetings, workshops and physical activities planned. The prototypes were a good way to visualize ideas and were helpful as conversation starters. In this case, the
prototypes were used to create a physical or spatial expression of the identified needs. The developed concepts were then presented to the bigger group and validated.

Outcomes and impact

The project can be seen as an interesting example of a truly co-created innovation process. The project team developed a rough project plan, but this plan was iterated and adapted ongoingly; the content, set-up and layout of each workshop were designed driven by the needs of the participants. This required expertise from the project team in listening to the underlying and explicit needs of the participants but also the ability to translate these needs into concrete tasks in the workshops. The service designer’s expertise led to a variety of visual artifacts that made it
easier for the diverse stakeholders to understand each other and communicate with each other. The service design facilitation was particularly important since human- or user-centred design is a philosophy, not a precise set of methods (Norman and Verganti, 2012) which is why experience and expertise in both designing but also facilitating these workshops was crucial to the success of the project. The results of the venture can definitely be seen as driven and created by all stakeholders involved. The project team, including the service designer, acted rather as
facilitators of the process. Another reason why this is a real co-created project is that two project participants now solely run Kraftens hus. This supported real co-creation where new solutions are created together with people – not for them.

A central part of the project has been to develop locally adapted design principles for achieving successful integration of social innovation with a broad network of stakeholders. This has led to a reflective approach of the
design process, making adjustments that fit the specific situations. The work has also been pervaded by a positive and opportunity-oriented view and has emphasized dialogue about positive yet challenging ideas of change from a patient perspective. This dialogue was not only fostered within the project group but also on a higher, local level due to a lot of media reports and active integration of local and social media in the design process. This can also be seen as one of the positive outcomes of this project.

The project created a network of representatives including cancer patients, relatives, local hospitals, politicians, primary care, Social insurance agency, Employment agency, patient associations, and local businesses. The reason for this “systems thinking approach“ was that the project team realized that any problem is part of a larger whole and that the solution is likely to require understanding of the entire system (Norman, 2010, online). With the “whole system in the room” (Huzzard et al, 2017) during service design workshops for six months, the actors co-designed a joint understanding of what resources would be required and how the typical interaction patterns could look for a better rehabilitation. The aim was not to add any larger extra resources, but instead to integrate existing resources
in the society in a more appropriate, innovative and effective way. The creation of this network can be seen as a positive outcome in itself. This network – since locally rooted in a joint experience – exists also outside this project and can lead to additional fruitful ventures.

The user-centred view contributed to creating engagement and involvement of various actors. The user perspective helped to transform the system and made that rules, traditions, and status were challenged. Such activities require openness, acceptance, and ”controlled risk-taking”. As a next step, the project group would even like to open up the further development of this project and include groups with non-swedish backgrounds as well.

Expected impact/effect for patients and relatives:

• Collection point for information
• Increased participation in social life
• Reduced sick leave and financial loss
• Energy from meeting others with similar experiences
• Open meeting place with a focus on health and well-being
• Increased self-confidence due to involvement in development process
• Reduced healthcare consumption for relatives
• More educated patients who can play a role in welfare development

Expected impact/effect for society:

• Platform for collaboration regarding cancer-affected patients 
• More equal welfare
• Increased knowledge and empathy for patients and relatives
• Reduced sick leave costs
• Complementary care focusing on social, emotional and practical support
• Changed demand for welfare services

Conclusion

On February 8, 2018, Kraftens Hus - the first support center for cancer-affected in Sweden of its kind - was opened. A space of 300 m2 with an initial budget of three Mio. SEK over three years was secured by public funds. Financially the main funding comes from the regional healthcare board and local industry, with the aim to reach fifty-fifty funding in private versus public. A website and three videos were produced during the project. A total of 70 people were involved in creating Kraftens hus. The opening night counted almost 100 guests. Regular activities for visitors have been scheduled and local companies sponsored furniture and other appliances. Two half-time employees, one with long experience of psycho-social support in cancer rehabilitation and another one with first-hand experience of cancer, could be employed and Kraftens hus is open three days a week. A number of interns and volunteers were willing to support Kraftens hus with their manpower. An NGO with eleven board members was established.

International collaboration with similar projects was initiated. A number of newspaper articles and radio news were published. This work has been nominated for the Swedish Design Award 2018 in the category sustainable
development and the “goldskapell” from Sweden’s Dagens Medicin. In the words of a project participant: “Healthcare deals with the tumour, Kraftens hus is there for everything else!”