Asking the Right Questions: Cancer Wellness and Stroke Care

Abstract

This chapter provides a reflective lens on two separate projects from the HEAL initiative, which were both undertaken by HDR Intern and Experience Designer Jessica Cheers. The first, Cancer Wellness at the Princess Alexandra hospital, describes the experience of being a designer coming into a partly-planned solution to the problem of there being too much wellbeing information available in too many places for cancer patients, to the point that they were overwhelmed and could not select what they needed. By taking them through a design thinking process, the team were able to identify the critical information that cancer patients needed at different stages of their journey. The second project, on Stroke Care, comprehensively mapped the different experiences (including waiting times) that stroke patients had across the state of Queensland. This tool enabled clinicians and decision-makers to prioritise the best solutions for each case.

“There is nothing more frustrating than coming up with the right answer to the wrong question.”

—Tim Brown, IDEO [1]

Imagine you are presented with two questions. The first: how can we support the wellness of cancer patients at the Princess Alexandra hospital? The second: how can we provide Queenslanders with equitable access to timely stroke care? These questions have some similarities—they are both about healthcare, they are both about access, and they both impact the wellbeing of patients. Yet, when an Experience Designer from HEAL was presented with these problems, she approached them very differently. Through these two case studies, this chapter will explore the notion of asking the right questions—using design thinking to dig deeper than the initial problem, uncovering the questions, methods, and people that will lead to the right solution.

1 Case Study 1: Cancer Wellness

1.1 The Problem

The conversation around wellness as a crucial compliment to medical cancer treatment is ever-growing. Yet, in Queensland there is currently no public cancer centre specifically designed to holistically treat all aspects of the self—mind, body and spirit. The Cancer Wellness Initiative (CWI) was established by Princess Alexandra Hospital’s (PAH) Cancer Services and funded by the PA Research Foundation to “advocate and innovate towards the provision of integrated, streamlined wellness support to all cancer patients receiving care at the Princess Alexandra Hospital” [2]. Initially, the vision was to establish a physical centre where wellness programs and support could be delivered. However, with the sudden and unexpected wide-spread shift towards online modalities in 2020 due to the COVID-19 pandemic, the team needed to reimagine the service delivery model to meet the wellness needs of people with cancer at the PAH without the ability to provide in-person care.

1.2 The Process

1.2.1 Reimagining

Before the CWI approached HEAL to collaborate, they had already held multiple consumer workshops and begun to scaffold ideas for the design of their service. They had decided to establish a physical centre within the hospital that offered wellness support, creating a website that alluded to this centre. The website was simple, offering information about the initiative and other wellness programs at the PAH. Realising that a brick-and-mortar centre was no longer viable in the foreseeable future, in 2020 they approached HEAL with their vision and journey thus far.

When I first sat down with Jodie Nixon, Elizabeth Pinkham, and Emma McKinnel from the CWI to understand which areas of their service might benefit from a designerly lens, it was clear that the team’s aspirations for the initiative had become hazy in the transition from physical to digital delivery. Together we untangled their initial purpose and goals from their imagined outcomes, mapping the future of the service. They reviewed the current online presence, analysed similar platforms, and created personas around the different types of people who the service might cater for. They also began to map the journey of people with cancer—from diagnosis to treatment and long-term care—to understand when and where patients currently needed support. It was immediately clear that their understanding of patient needs was outdated and didn’t reflect the current state of their care. They had already begun to imagine the possibility of a digital solution; however, they hadn’t asked patients if this aligned with their needs. They needed to re-connect with end-users—people with cancer and patients at the PAH—to better understand if and how their current and emerging needs could be met with an online offering.

1.2.2 Co-designing

The team invited four people with cancer—previous or current patients of the PAH—to the hospital for a co-design session (Fig. 1), exploring their wellbeing needs at various points throughout their cancer experience. It was important that the team didn’t pre-empt or assume a need for online resources by asking the wrong questions. Therefore, they developed a new set of questions, including:

• 1. Where and how have you sought wellness information in the past?

• 2. What are the scenarios in which you might want or need wellness information?

• 3. What would your ideal cancer wellness resource look like? Including:

  • (a) What would make this information more beneficial than what already exists?

  • (b) How would you like the information to be structured?

  • (c) How can we make this resource accessible to you?

The workshop began with an introductory discussion around “Dr. Google” and participants’ relationship with online information. Following this, participants were asked to explore scenarios in which they have sought or would seek cancer wellness information, creating scenario cards for each and sorting them into four phases: diagnosis, during treatment, after treatment, and long term. Scenarios are employed across a number of broader Participatory Design (PD) techniques, for example Theatre for Design [3], the Scenario Oriented Design Game [4], the Character game [5] and SPES (Situated and Participative Enactment of Scenarios) [6], as well as in the process of methods like journey mapping. In these scenario-based design methods, scenarios are constructed either around the participants’ everyday life or fictitious situations, allowing participants to explore the use of a product, service, or technology, contextualised in a meaningful setting. In this instance, scenarios were used to understand the complexities of all stages of the cancer experience, identifying moments in which participants might seek wellness information. This generated a rich discussion around moments in which wellness information may be more overwhelming than helpful, as well as points at which people with cancer seek opportunities to regain some element of normalcy and integrate wellness techniques.

Fig. 1

Co-design session

The original intention was to use these scenarios as the foundation for a Scenario Game [4]—a type of Exploratory Design Game in which participants physically act out scenarios. Participants would select a scenario and act it out, using props like computers to demonstrate how they would seek wellness information. However, the discussion generated from the scenarios alone was so rich that this stage was deemed unnecessary. Instead, the group organically shifted into an informal journey mapping process, laying the foundation for participants to explore potential design solutions. Selecting scenarios one-by-one, they mapped out their information-seeking steps, using paper-based prompts like empty Google search boxes, web domain entry fields, and speech bubbles. This uncovered instances where more support was needed, or the current information was either overwhelming or inaccessible.

The next stage of the workshop was inspired by PICTIVE (Plastic Interface for Collaborative Technology Initiatives through Video Exploration). PICTIVE was devised as an experimental participatory technique for systems design, with plastic simultaneously referring to the literal plastic pieces offered for explorative making, the malleability of the interface concepts, and the artificiality of the low-level prototypes that emerge as a result [3]. In the PICTIVE process, participants first devise scenarios and discuss the design problem/constraints before being supplied with a number of low-tech materials (office supplies, paper-based mock-ups of interface elements, and tools like scissors and pen) to create low-fidelity mock-ups (prototypes) of design solutions (Fig. 2). Following the session, higher fidelity prototypes are presented back to users for further discussion and testing. The methods used in the co-design workshop were largely inspired by PICTIVE, with some modifications to suit the context. Given the short format of the workshop, much of the PICTIVE process was collaborative, and emerged organically from the discussion of scenarios. Designs were actively tested and critiqued by all participants, and were resolved throughout the workshop to produce a unified vision. Materials consisted of printed paper-based interface elements—for example text fields, drop-down menus, videos etc.—with space for participants to label each element and imagine specifics like the type of imagery, search terms, or length of videos. Participants could also create their own elements, or select from existing photographs or icons.

Following the informal PICTIVE session, the group considered how these solutions might practically meet the needs of the original scenarios, as well as how information could be organised in an online platform to suit all four stages of the cancer experience.

Fig. 2

Low-fidelity prototype

1.2.3 Sensemaking

To make sense of the workshop outcomes and translate them into actionable recommendations, the team went through a process of thematic analysis. Multiple data sources were used, including audio and video recordings as well as tangible workshop outcomes like scenarios and PICTIVE prototypes. The process of thematic analysis followed a six-phase approach: (1) familiarising ourselves with the data, (2) generating initial codes, (3) identifying themes, (4) reviewing potential themes, (5) defining and naming themes, and (6) producing the report [7]. This analysis formed the basis of a report presented to the CWI team, which included initial goals, documentation of workshop activities, six key themes supported by workshop quotes and related codes, a series of recommendations based on each theme, and preliminary website wireframes.

The following insights emerged from the workshop:

• 1. Cancer wellness information should be digestible

  “We’re given so much information at once that it gets overwhelming”

• 2. Cancer wellness information should be consistent and reliable

  “I didn’t know until one of the other patients told me about…”

• 3. Cancer wellness should be presented in a way that is normalising

  “I need reassurance that what I’m experiencing is normal”

• 4. Cancer wellness should be site-specific to the PAH

  “I want to know what’s happening at the PAH”

• 5. The platform should support the shift in mindset from cancer treatment to wellness

  “In the beginning it was all about the cancer, then my mindset shifted”

• 6. The platform should support supporters of people with cancer

  “Half of the battle was communicating all of this information to “the committee”—my partner, family and friends”.

1.2.4 Developing

Over the next 12 months, the Cancer Wellness Initiative website was developed by the team. Clinicians created and organised a wealth of informative wellness resources while the platform was designed and developed. The website was designed from the ground up based on consumer needs. To aid in relevance and digestibility, consumers could order information based on their specific concerns. They could also browse information by stage, whether they were after diagnosis, during treatment, after treatment, or long term—accommodating their shift in mindset. The information provided was site-specific to the PAH, referencing local wellbeing programs and providing resources that were developed by clinicians at the hospital. The team provided resources that people with cancer could give to their family and friends, supporting supporters. All information was presented in a way that normalised their experience and was evidence-based, so that patients could feel rest assured that it was consistent and reliable (Fig. 3).

Fig. 3

Website prototype

Alongside the website design and development, a brand identity was created for the initiative, drawing from the existing branding for the PA Research Foundation to communicate familial ties to the hospital.

1.2.5 Evaluating

Once the first iteration of the website had been developed, it was presented back to one of the original co-design participants for usability testing. They provided feedback on the language of the resources and images/icons used throughout, but otherwise felt that the website aligned with their vision and would meet the needs of cancer patients at the PA hospital. Changes recommended by the consumer and clinical team were implemented in the lead-up to the launch of the website.

1.3 Learnings

The key take-away from this collaboration was the importance of engaging with end-users throughout the entire design process, especially when the initial goals change or new limitations are imposed throughout the life of the project. The team found themselves making assumptions about what people with cancer wanted and needed, and began to re-conceptualise the project based on ideas that didn’t accurately represent end-users’ current needs, rather than asking questions. Asking the right questions at the right time led to a wealth of insights—enough to build a platform that responded directly to the needs of patients at all stages of cancer. Given the overwhelming over-abundance of cancer information online—let alone general health information—it was crucial to determine if a digital solution was actually wanted and needed. The project resulted in an authoritative, evidence-based, virtual home for patients seeking cancer wellness information, programs and services, which resonated with consumers. Insights from the collaborative process were crucial in ensuring that the CWI platform would be valuable and meaningful rather than tokenistic or adding to patients’ feeling of overwhelm.

2 Case Study 2: Stroke Care

2.1 The Problem

The hours following the onset of a stroke are crucial, with each additional minute affecting the viability of treatment and potential for life-long health impacts [8]. However, a person’s experience during these critical hours can vary wildly depending on where in Queensland they are and which hospitals they attend. Arbitrary hospital transfers are one of the primary reasons for treatment delays, resulting in diminished quality of life for many patients. Currently, decision-makers within Queensland HHS often do not have a full understanding of the variation that exists across the state, including how each element of the patient journey impacts on the next.

2.2 The Process

2.2.1 Sensemaking

This project had clear goals and parameters from the outset: put simply, the team wanted to comprehensively map variations in stroke care across the State. While the problem of inequitable stroke care affects consumers the most, the source of the problem lies with clinicians and decision-makers across Queensland, who are operating in a complex system without a birds-eye view of how its parts fit together. Mapping the problem wouldn’t solve the problem of inequitable stroke care, but it was a crucial first step—ensuring that the problem itself was understood.

Knowing that the team needed support to ask the right questions of clinicians and decision-makers and accurately map stroke care, Katherine Jacques from the The Statewide Stroke Clinical Network (SSCN) sat down with me to plan the process. To truly represent the complexity of the system, it was clear that the team needed to undergo a comprehensive mapping process with multiple stakeholders across several workshops and informal consultations. Beyond this, they would need to create a series of infographics that conveyed the information in multiple levels of complexity, highlighting inequity at a glance while also providing a nuanced picture of the problems at hand.

2.2.2 Stakeholder Workshops

After several initial sensemaking discussions, I produced a rough initial map that was a culmination of all existing diagrams, documents, and insights the team had gathered. The initial mapping was based around a persona, Jenny, who was a 55 year-old woman, from the central Queensland town of Emerald, with type 2 diabetes and Undiagnosed Atrial Fibrillation. While aspects of the persona were fictitious, the data was real—all figures used throughout the mapping were based on patient data collected across Queensland.

The team embarked on four human-centred co-design workshops involving clinicians from across the state, both virtually and in-person. Over the course of these workshops, a comprehensive map was developed, which encompassed every possible scenario that could occur, from the onset of stroke symptoms through to rehabilitation and secondary prevention. The map was exhaustive, even including risk factors and prevention measures prior to symptom onset. All of the clinicians and services involved in each stage were mapped, revealing unexpected questions for paramedics and other clinicians who were contacted as part of the collaborative process. After the most comprehensive map had been developed, a number of simplified maps were created to compare and contrast the care a person would receive under different circumstances. The comparison was profound, with more than a 7-hour difference in the time to initial treatment based on the location of the patient at onset. At several stages throughout the process, the SSCN Steering Committee provided feedback, as did the broader SSCN network at a Clinical Forum.

2.2.3 Outcomes

Seven Infographics were created in total, including one infographic that could be easily broken into individual stages for the sake of presentations that related specifically to one part of the process, for example imaging, transport, or post-procedure care. The final infographics are freely available from the SSCN intranet page to all clinicians across Queensland, for use in their local settings to support and enhance understanding of the variation in existing systems of care for stroke patients, and to assist them in identifying local areas for improvement. These detailed mappings include both quantitative and qualitative impacts on patients and the healthcare system, demonstrating where current practice is not meeting Clinical Care Standards and putting forward a compelling case for change (Fig. 4).

Fig. 4

Infographics used in the project

2.3 Learnings

While the outcome of this project will impact the care that consumers receive when they have a stroke, consumers were not involved in the collaborative process. This was because the problem of inequitable stroke care is a system problem, not a consumer problem, and the best way to solve it was to first understand the system itself by talking to the many clinicians and stakeholders who operate within it day-to-day. Design Thinking brought two things to this process: a series of well-designed, legible, and usable maps with varying degrees of detail; and a collaborative process that asked the right questions from the outset. Asking questions that specifically related to Jenny (the consumer persona) ensured that responses were specific and nuanced, based on real data rather than broad generalisations. Asking questions about each individual health professional involved, from onset to post-treatment, revealed additional unexpected questions, which prompted further consultations. For example, the team contacted a paramedic who explained the exact sequence of events involved in a handover, as well as the number of vehicles typically available in smaller regions. Finally, constantly questioning the presentation of the data and the format resulted in a series of maps that were easy to understand, flexible, and usable. By asking the right people the right questions, this project resulted in the most comprehensive mapping of stroke care in Queensland, which can be used by all decision-makers and clinicians to identify what needs to change and advocate for the resources that can support change to occur.

3 Conclusion: Asking the Right Questions

This chapter presented two case studies: a consumer engagement project which resulted in the design and development of a cancer wellness website, and a stakeholder engagement project which resulted in the comprehensive mapping of statewide stroke care. Both projects were undertaken by the same designer who employed similar sensemaking methods at the outset to understand the problem space—using personas, scenarios, and journey maps. However, the questions asked through this process led to entirely different project methodologies and design solutions. These examples illustrate that—regardless of a project’s context, methods, people, or outcomes—design thinking will always bring a simple strength to the collaborative process: asking the right questions. In the context of cancer wellness, this meant challenging the assumptions of the project team and asking whether a digital solution was wanted or needed by consumers. In the context of stroke care, this meant framing questions around the consumer experience, questioning the nuanced roles and actions of each clinician, and constantly evaluating whether the presentation of the data could be more impactful. Both projects resulted in usable solutions that responded directly to the needs of consumers and stakeholders—the right answers to the right questions.