A Philosophy of SoE

Preparing for a change that is already taking flight is difficult at the best of times, but in this climate of crisis, the very systems that are needed to plan for change are struggling with crises that threaten the very innovative systems that had made Alberta’s evidence-based health planning an international leader in health research innovation. All health systems are struggling to keep existing systems functioning while patients increasingly work outside of health systems to find ways to use technology to conduct their own research. JEDI-A challenges systemic discrimination and works toward justice in health research and healthcare, but without action soon, equity-seeking groups currently marginalized will lose ground in securing appropriate healthcare. We need patients, advocacy groups, and community groups as partners in research and planning to prepare.

Recalibrate What a Science of Engagement Can Provide

The elements of the philosophy of this emancipatory science of engagement shift, in light of the anticipated transition from chronic and stress-related care to prevention and promotion to build patient capacity to take up new roles (goal of research) as old roles become less prevalent. It is predicted that future patient roles will have greater control over managing health and healthcare. An emancipatory SoE may support democratizing science through including patients and communities in health research, if JEDI-A challenges systemic discrimination and promotes emancipation for equity-seeking groups and if technology achieves its goal of moving the focus to prevention and promotion with new emancipated roles for patients and citizens.

The scope of engagement includes managing technology and a major shift in educating students and citizens for an extended life span and new ways to contribute to society.

Epistemology of human knowledge shifts as the nature, origins, and limits of human knowledge adapts to the unpacking of systemic discrimination, and the very nature of our bodies will shift as technology becomes incorporated in who we are and can become and the inclusion of citizens in research. Narrative and storytelling, marginalized currently, will return as an accepted, effective knowledge foundation that promotes engagement and shared analysis. The iterative nature of peer research will become accepted as co-researchers find solutions to concerns of importance to patients.

The ontology of this work is simply that while evidence-based medicine and quantitative and qualitative research are essential in health research, so is the expertise of patients who live with illness, trauma, and loss. Patients rely on access to healthcare and are interested in ensuring that healthcare is effective, secure, and available. They want to contribute to quality healthcare and inclusive research by sharing their experience from their perspectives.

The narrative methodology of SoE is emancipatory, co-designed to capture patient experience in healthcare and research from their perspective. They conduct research that is important to them based on what happened and what could have happened to make a difference.

This will take serious commitment from all parties to champion peer research as salutogenic, pragmatic, and action-oriented to facilitate innovation as part of transforming healthcare and funding options. These will include individualized funding for patients and families to secure the supports they need and emerging collaborations of patient-led research, personal health research networks, and especially local, national, and international health agendas to make science open and innovative.

What is required to promote change? The following agents and environments have been identified in Grey Matters (Marlett & Emes, 2010, https://press.ucalgary.ca/books/9781552382516/) and final PaCER reports for funders.

• Researchers motivated to experiment with new ways to use technologies as part of social innovation, enterprise, and transformation.
• System champions and transformation networks such as Alberta’s Strategic Clinical Networks, willing to use policy to build or reframe new systems and support new roles, partners, delivery, and funding approaches. Note: In the space of preparing this book for publication, the Alberta Government virtually eliminated the Strategic Clinical Networks and took political control of health care and research. This loss of a planning network will make the roles of Academic networks even more important to support health research planning.
• Ethical theorists and pragmatists who take up the challenge to ensure adherence to legal and ethical issues such as copyright, data-sharing agreements, confidentiality, reciprocity, traditional owner rights, and the environmental impact of new research options and healthcare delivery. During the time when PaCER was a social enterprise, the university system worked with us to deal with these issues that seemed insurmountable.
• A community- and population-focused culture of health that recognizes the challenges and seeks justice for patients and support for equity, diversity, and inclusion in health research and innovation.
• Trained patients as peer researchers ready to become part of transformation networks and research projects. Our experience found that these trained patient researchers become leaders and can support patient and community change. It almost seems that these graduates are being trained for the anticipated direction of healthcare.
• Action teaching methods where patients and community members co-design and conduct peer research using participatory, narrative, and inductive research approaches.

What Has Been Learned

The characteristics identified in Chapter 8 defined peer research as part of emancipatory research that is co-designed and conducted by citizens who share a common identities defined by them. A co-research process ensures that they are included throughout, that they share their experiences, opinions and creativity safely. They are acknowledged as co-researchers and participate in actions that have the potential to make a difference. The following table introduces us to the basic characteristics of peer research to set the stage for this chapter that highlights how peer research differs from most general qualitative research.

The following summarize the main findings and inform how emancipatory research works.

Salutogenesis / Action / Orientation

Most North American health systems feel that ‘health’ is about the achievement of health by overcoming illness and disease. Salutogenesis, the search for health and human-centred in response to illness, builds capacity for resilience, confidence, and human-centred. Salutogenesis has been found to be a theory of patient expertise that guides the analysis and eventual solutions to problems. However, in a strange reversal, we discovered that focusing on a common concern as the focus of peer research provided the motivation and shared stories that enabled people to understand how problems worked as a way to design solutions. This led to open discussion about how to confront and build positive action and capacity to meet challenges. Both PAR and grounded theory use this approach to motivate people to find solutions that reflect who they are, what they are facing, and what they need. This becomes the key to action and making a difference.

Interaction of Co-research, Inductive Iterative Research, and an Engagement Strategy Define Action Research

Peer research, an inductive search for solutions for main concerns, is most effective when an engagement strategy is followed. During SET, peer researchers reach out to citizens to collect stories of concerns related to the study. A SET co-design team of patients prioritize potential topics and advise on the politics and resources needed to conduct research along with recruitment strategies and potential impact. COLLECT is an iterative process with the results of the first set of data informing the next step. Each step moves closer to understanding the concern and how to address it. REFLECT re-engages the SET design team and others interested in discussing the findings to consider potential solutions and next steps to make a difference. As PaCER became more involved in research projects, there seemed to be a possible INNOVATE phase that reflected the involvement of design thinking specialists to prototype test the finding.

Narrative Data and Analysis / In Vivo, Real-Life Language / Meaningful Outcomes

Sharing stories not only activates personal neural and endocrine systems, it also builds collaboration and creativity.

It was expected that stories would also ensure the use of real-life language that reduces reliance on formal academic theory. This enabled peer research to produce results that were practical and relevant to a wide range of audiences. This is the most difficult component for quantitative researchers, who have come from deductive methods and standardized questions. Theory conveyed in real-life language leads to pragmatic, action-focused theory that is meaningful to the general public.

These characteristics reinforce not only the search for new views of health research but also an understanding of what emancipation involves in health research.

A Blended Peer Research Methodology

The goal of Sections 1 and 2 was to provide options for academic qualitative peer research, and now we formally blend three qualitative research methods to create a blended methodology to involve patient co-researchers throughout all phases of research. It combines and creates research methods that are intended to ensure the inclusion of justice, equity, diversity, inclusion, and access (JEDI-A), to create an emancipatory social science and theory. We begin with an overview of three research traditions that have been most effective in supporting participatory and emancipatory action-based outcomes from the first formal study with innovators of new social movements through to analysis of current research projects. These methods include:

• Applying participatory action research principles and understanding participatory relationships.
• Collecting narrative data to ensure real-life data of real-life solutions.
• Using classical grounded theory to explain concerns of populations to find solutions.

The careful combination of these three traditions produces robust action-based methods for solving systemic problems while supporting innovation. Glaser encouraged experimentation with classical grounded theory methods (Holton & Walsh, 2017), and Figure 12.1 looks to futures informed by both JEDI and health technology. I offer the same challenge to readers—to experiment with the following model.

Figure 12.1 A Peer Research Combination of Participatory Action Research, Narrative Data Foundations, and Classical Grounded Theory Analysis

These combinations of three distinct research traditions produced three distinct qualities of peer research—engage, focus, and act—that capture the shared focus between pairs of methods. Secondary analysis of methods looking for evidence of PAR, narrative and grounded theory in combination concluded that combinations were common and theoretically sound. PAR provides both the principles and equity-based relationships that are central to peer research. Grounded theory’s iterative nature and analytic rigour are easy to understand and increase confidence in co-researchers. The power of narrative to engage using everyday language and the consistent story structures reinforced the intent to engage, focus, and act.

The overlap between each pair reinforces the integrity of the engagement. PAR principles, when used with narrative data systems, create a depth of collective meaning that can capture cultural nuance and instill creativity. Grounded theory, when using narrative data, opens theory to publicly accessible coding of real-life experience. When participatory values and grounded theory standards are combined, the detailed and consistent analysis enables smaller samples to achieve quality and relevance. Engagement research responds to all three traditions to offer a new voice to health research.

Peer methodology focuses on patient experience of what happened or is happening to explain why and how it happened. It provides the structure to make a difference in what might happen in the future. The inductive nature of peer research as described below enables peer researchers to focus carefully on the concern or topic of research to find simple and direct recommendations for action.

While it is possible to teach patients general qualitative research, the methods are more likely to be deductive, with analysis taking place after data is collected. It was clear, early in the research related to co-design and narrative, that grounded theory or thematic analysis could be done in a participatory way, but it was prone to becoming theoretical and abstract and thus lost common language and meaning. The findings tended to be descriptive and expansive and difficult to translate into clear action. Some trained peer researchers, especially those with qualitative research training, felt it important to use thematic analysis to be recognized by academic researchers, and, as in emancipatory research, researchers are encouraged to adapt methods to the situations they encounter.

Patient research builds patient capacity to be part of social change. Descriptive thematic findings, while often in publications, are not easily translated to social action or social media. Patient research, in an era of rapid technology transformation, needs to be widely understandable and action-oriented if it is to influence innovation. Interestingly, grounded theory is a popular methodology for health administrators because it is easy to understand and action-oriented. In the end, social change relies on public and policy support, and peer research that is poised to provide clear, pragmatic, focused, and action-oriented research appeals to policy makers.

In summary, participatory action research provides principles that ensure research equity, narrative provides the data platform, and grounded theory provides the focus and iterative analysis methods to ensure rigour. The goal of this combined method is to reinforce citizen science and social enterprise, reach unheard populations, reduce systemic discrimination in health, and support health research and innovation.

The following is a summary of the current understanding of each research tradition as it contributes to making a difference. In introducing each separate method, we look at the history and how it works with the other methods. It also includes how each method informs the science of engagement, changemaking, and citizen science.

Participatory Action Research Principles

We start by revisiting the values of participatory action research that align with peer research as an emancipatory science of engagement. The most obvious is the right to participate so that personal and local knowledge is heard and acted upon. In peer research we acknowledge that methods must adapt to and use cultural ways of knowing and learning to conduct and honour research. When working with equity-seeking groups, the use of language is best left to language speakers who understand the nuances of these groups.

I began using participatory action research with marginalized populations early in my career and adopted its principles to focus my early use of classical grounded theory. Figure 12.2 is a common diagram describing the interaction between participation, action and research that resonates with peer research principles.

Figure 12.2 The Multiple Linked Facets of Participatory Action Research

Note: Source: Allen (2016, https://learningforsustainability.net/post/par/). Reproduced with permission.

These principles are now expanded to include the participatory action research model adopted in Grey Matters that aligns with JEDI principles. These values are particularly important when dealing with group intersectionality in systemic discrimination related to both healthcare and research. To understand this concept as part of critical disability theory, read the entry in the Stanford Encyclopedia of Philosophy (Hall, 2019, https://plato.stanford.edu/entries/disability-critical/).

• Equity The research process allows each participant to gain new skills and perspectives that enhance their own abilities and power. The group also gains shared knowledge and capacity by virtue of the use of JEDI principles that are central to emancipatory research within health systems.
• Diversity refers to different ways of knowing that capture the value of participatory research with those marginalized and honours cultural ways of knowing and personal knowledge and expertise. This also includes new perspectives that emerge through peer research improvisation. People have different ways of expressing what they know, and in peer research the group is responsible for creating nuanced and collective understandings that incorporate these differences.
• Inclusion refers to the processes that ensure that communication is continuous so that participants always know what is going on, what it means, and where the process is taking them. This informed belonging enables groups to welcome different perspectives even if they challenge ‘group think.’ Inclusion assumes equity within each group.
• Action is the result of any participatory project. Action is legitimized here as part of JEDI because the engagement strategy of peer research promotes ownership of the data and findings. Implementation and innovation are the end goal of participatory action research.

The above participatory principles are manifest in co-design where patient consultants review and prioritize concerns during the SET or co-design phase. Co-research participants provide and share storied data and take part in analyzing their own and collective stories in COLLECT. During a REFLECT process, they are involved in reviewing the total findings. The roles peer researchers play depend on the project, how it is related to health research teams, and which streams of research they are part of. Participatory and social justice traditions of identity research are deeply held and treasured; some examples include ceremony in Indigenous research, or working in solidarity with those pathologized for their bodies and minds to refocus on social and environmental barriers or sexual preference as part of gendered research.

Participation is also the common denominator in all the new social organizations devoted to open and collaborative research, especially HIV communities and gender-based alternatives. Most critical research projects speak to the need to include patients as stakeholders or collaborators; citizen science goes so far as to describe ways to include citizens in research, although the uptake of peer research has generally been cautious. This could be linked to the former lack of strategies, engagement, theory, or the adapted methods that would make collaboration of equals possible. Chapters 4, 5, and 8 facilitate some confidence and comfort that a new collective patient research voice in health research and innovation is ready for implementation.

Participation, when combined with narrative, ensures shared meaning. When combined with grounded theory, it supports rigour of iterative data analysis and a focus on action. Grounded theorists have questioned a pairing of PAR and grounded theory, but the goals are the same: making a difference.

Narrative Data Support Both Research and Leadership

The importance of narrative methods was first identified in the new social movements research (Chapters 2 and 3) and was expanded by seniors who created storytelling focus groups and story templates as part of Grey Matters. During the incubation phase of PaCER, it was discovered that the story templates could be used for data collection interviews, focus groups, observations, public data, and art as data. Story templates provided a way to use storied data to connect all phases of research.

Narrative is a comfortable companion to participatory research because storytelling is what people do when they get together to share ideas and solve problems. The combination of narrative and grounded theory is less common, but produces robust real-life data and analysis, based on in vivo or everyday language and concepts. The uncertainty in combining classical grounded theory and narrative existed because classical grounded theory focuses on conceptual analysis, which was not easy for non-traditional learners without disciplinary theory to ground the concepts. This was resolved by Holton and Walsh (2017), who identified units of analysis in classical grounded theory as ‘incidents,’ which included stories, along with metaphors, story fragments, and alternate forms of stories. This provided support for the use of stories as data and story templates as preliminary analysis.

An example of narrative used in community research occurred in 2013, when Alberta was overwhelmed with unprecedented flooding. Psychology and ethnography researchers used Facebook to gather stories of trauma related to the flood in small towns. The platform produced rich data sources that were then used to analyze the stories told, the storytellers, and the resources they used while supporting the need for citizen experience data as part of climate change. Discussed later in this chapter is a structured story template that PaCER researchers use to collect stories online and also social media stories as research opportunities.

Narrative, when combined with PAR, reinforces the ability to produce shared meaning of diverse populations that increase the ability to include diversity in innovation. When combined with grounded theory, narrative intensifies rigour and the relevance of real-life experience.

Classical Grounded Theory Analysis with Narrative for Innovative Grounded Action

Classical grounded theory shares key action-based features with participatory action research and narratives, providing opportunities to create new data science based on real-life experience. The inductive nature and iterative cycles of data collection, analysis, and interpretation reinforces participation and decision-making at each step. Grounded theory provides a robust data analysis and decision-making protocol that teaches shared analysis and planning at each consecutive cycle.

The use of grounded theory analysis opens avenues for collaboration with qualitative researchers and patient-oriented researchers (POR) who use both quantitative and qualitative methods. Most social sciences, health, and culture studies programs that use emancipatory and critical theory have research traditions that include grounded theory, narrative, and participatory action features that may also be of importance for open innovation in science and crowdsourcing methods.

In closing, I might offer a short summary of peer research as an integrated whole. Participatory action research sets the stage for authentic engagement. Narrative data ensures that real-life data and frameworks inform co-design and analysis. Classical grounded theory guides analysis to ensure each step is focused on explaining the main concern of the population to find solutions using consistent cycles of collection, analysis, reflection, and planning.

The Possibilities of an Extended Narrative Data Science

The use of narrative has been hampered by the lack of options for analyzing stories that take analysis through to interpretation and publication. Qualitative narrative research options include thematic analysis of language, movement analysis of the incidents within stories, developing categories and types of stories, gathering events and from various forms of inquiry to create explanatory story types and strategies. This last section on methods introduces an attempt to consolidate an integrated narrative research method that moves from identifying a research topic, collecting and analyzing data, and ways to share interpretation of stories.

This is important because narrative peer research methodology can support a range of health research options: developing and testing, POR, clinical, intervention and outcomes, and even research grants that include patient experience. This leads to planning research with communities and patient groups along with community participatory projects and grants, citizen science, and the list continues. This is because stories reflect time sequenced real-life experience about what happened, what is currently happening, and perhaps what might happen if things were different. The concern about stories as patient experience is that there is no sequence or path that enables analysis at different stages of research. While most studies use narrative to collect data, the unfolding analysis and interpretations are not included.

Recently I was using PaCER research reports and publications to understand how to provide a logical way to categorize the functions of stories as data, and I discovered that the engagement strategy, along with a new stage of INNOVATE that is introduced in the last section of the book, provided an easy way to focus stories as data and the analysis options at each stage. The following list uses the peer engagement strategy to tailor narrative methods to the research being done.

The process of storytelling and sharing stories was consistent during the co-design stages of new social movements, Grey Matters, and PaCER in the following ways:

• Co-design of the topic (SET) collects stories of potential concerns that are important to patients, communities and frontline staff. These stories are used by a design team of patients to prioritize stories of a main concern as the topic of research.
• During COLLECT, stories are gathered and shared to explain the main concern of co-researchers in order to explore solutions. It is here that other methods of analysis became part of the training program.
• During REFLECT, it seemed easier to revert to thematic analysis to identify themes or categories that described patient experience instead of focusing on solutions. This moved peer research from action research to qualitative research.
• During INNOVATE, stories are already used in design thinking and human-centred design and methodology will be explored in the last section of this final chapter.

I realized that qualitative thematic analysis had been adopted by the PaCER curriculum because it was difficult to analyze stories in a way that promoted descriptive categories to describe patient experience. I decided to see if it was possible to use the story templates to create a consistent narrative methodology that was able to identify a topic of research from a patient perspective, collect and analyse data, and interpret findings within a co-researched emancipatory research approach. This had become possible in part because of the two new theories (patient perspective of health systems and patient standpoint theory) that, along with salutogenesis, provided the impetus for using theory to explore new tools to support analysis, interpretation, and innovation.

This section is divided into three components related to what we know about peer research to date. Each starts with a diagram that sets out the process involved followed by a story template that can be used to guide data collection and analysis.

We begin by considering the utility of the original story template that was created during new social movements and used by Grey Matters and PaCER.

This basic format can be used whenever stories are being collected, but it lacks ways to analyze the data. It is here that we look at how properties, used in grounded theory constant comparison analysis, can provide a way to efficiently explore elements of comparison that do not require themes or categories. It moves peer research from descriptive categories to a deep understanding of process and properties that expose what is happening and then leads to why it is happening and what might be next steps.

The SET

The following figures describe the narrative process for each stage, and each includes a story template that can be adapted to track analysis during each stage of set, collect, and reflect. The first figure, SET, begins the research agenda that collects stories of patient concerns related to the research and the expectation that the topic will prompt stories that suggest future options for change.

This process maximizes the level of participation of patients as co-designers during in-person and online recruiting, contacting organizations to support research and ethics approvals. The above process can be modified depending on the nature of the topic and the target population for research. The following simplified story template is designed as the first step in peer research that engages patients and community members in collecting and prioritizing stories of their main concern. This story is then used as part of research grant proposals or an ethics proposal to clarify the SET co-design process.

From the recording or notes of an interview or observation, create the following description of a story related to the topic of the research. If feasible, share this document with the storyteller and record their reactions to the story. At this stage, the narrative is focused on collecting a variety of stories that identify concerns or topics patients feel are important. These stories are then used to select the topic for peer research from a patient perspective as part of the SET focus group or process. This template establishes the language and categories used to describe peer research.

Story Template to Engage Patients in the Topic of Research

Context: Fill in the following information that sets the stage for the story:

1. Sponsoring, planning, research team, or patient-led research, date
2. Student or peer researcher
3. Storyteller: how recruited
4. Focus of the interview (concerns related to the contract or sponsorship topic from a patient perspective)

Story elements using properties of stories:

1. A working title and summary in 40 words or less
2. When and where did the story happen: ‘When’ locates the event in time and ‘where’ is both the situation and the health systems involved.
3. Who was involved (roles not names)
4. What happened (including what triggered the story, what then happened and what was the outcome). This is based on your notes and listening to tapes; in this peer research follow grounded theory practice about detailed transcript.

Analysis of the story as part of SET that creates the topic of the study:

1. How is it related to the general topic of research?
2. Why is it important to research this and what might happen if it was researched?

If you’re using this for your report, use the following space to track the trajectory of the story as it informs the final results.

COLLECT: Collection and Analysis of Narrative Data

It seems natural to use narrative when collecting data, but it has been more difficult to implement an analysis strategy that maintains the integrity of the story. Data collection is based on identifying incidents of what happened. At this stage, incidents or single acts of occurrences provide the structure for data collection with a sequential, numbered list of experiences. This method was first explored during the new social movements study, formalized during Grey Matters, and used at the beginning of PaCER co-design. These single incidents can be analyzed according to grounded theory properties that apply as well to basic narrative analysis. Incidents can also be combined to categorize experience. These properties provide the foundation for analysis of stories. The following describes the steps to use stories as part of both data collection and analysis.

Story Template During Data Collection and Analysis

The consistent use of a story format encourages the categorization and the detailed analysis of incidents using grounded theory properties that resonate with storied data. While it is easy to use story templates for data collection, the revised story formats focus on analysis at various stages (SET<COLLECT>REFLECT). Early in COLLECT data and analysis, the focus is testing a number of data options in order to move to stage two analysis, which uses analysis to consider options for each subsequent data collection and analysis. It has become common when training patients to become peer researchers to focus on one focus group for each set, collect, and reflect with optional individual interviews. However, if working to explain a main concern and a viable solution, it will likely take more than one data collection and analysis cycle. The story template accommodates many options to customize the template to your process.

Story Template for Data Collection and Analysis

This template includes the same stages of context and analysis.

Context: Record the following data in the space provided.

1. A working title and summary in 20 words or less
2. Date and location of data collection
3. Sponsoring planning, research team, or patient-led research
4. Student or peer researcher
5. When and where did the story happen: ‘When’ locates the event in time and ‘where’ is both the situation and the health systems involved.
6. Who was involved (roles not names)

Analysis of the story as part of COLLECT using properties of incidents and stories:

Stage 1: Who (roles), where (location and system), and when (what was happening when the story was triggered)

This iterative stage of data collection and analysis process has resulted from co-design opportunities and reading reports from the co-design stage of PaCER. The formalization of analysis is not intended to be prescriptive but to provide opportunities to use a more formal narrative analysis based on the use of properties from grounded theory. Feel free to explore your own properties that more closely reflect your area of study and participants. This approach is one of the possibilities that enable analysis by peer researchers and co-researchers that are not familiar with qualitative analysis or academic theory. The focus remains on the discovery of common stories that explain concerns and their solutions.

REFLECT: Interpreting and Publishing Peer Research

When narrative is consistently used, it is natural to explore aspirational stories and their potential alternative outcomes. This last step has been a keystone moment in consolidating the last piece of the puzzle that moves peer research closer to the original intent to use in vivo language, concepts, and theory throughout the peer research process.

This last stage brings back the original goal of an emancipatory science for peer research. The first obstacles to peer research, identified in the new social movement co-research, identified the need for a narrative foundation to achieve a partnership. The next obstacle arose in the need to focus on action-based research. Then came the challenge to ensure real-life language in data collection and analysis to maintain contact with peer storytelling. To ensure contact with real-life action based on all three stages, we had prepared for moving more effectively to a unified research methodology.

This is a particular challenge during REFLECT that brings the original co-design team of the topic of research together to consider the results and implications. We soon realized that the use of stories in prioritizing the concern for study was important in REFLECT because the use of abstract and descriptive themes broke the link to early SET decisions about what to include and how to do it. To accomplish this, we brought posters of the stories that identified the main concern and posters of the identified solutions. These were used to prioritize the best solution and how to implement the actions suggested. This process when using thematic analysis shifts the focus to abstract categories and away from action that resulted from using thematic analysis during analysis of stories collected during the COLLECT phase.

The following storied alternative completes a storied sequence of research with real-life language and action included.

This REFLECT stage could be an action-based alternative to the common practice of combining themes from analysis, interpretation, and preparing findings as reports and publications. The reason for this returns us to the basic premise of peer research and the emancipatory and action-oriented goals of peer research that includes re-engaging the co-design team to evaluate the process, understand the findings, and be part of considering the feasibility criteria for next steps. This has been a defining characteristic of peer research from the first stage of testing the ability to conduct research as peers where those who the target of research set the goal and were part of creating the results.

This sets peer research apart from most qualitative research and citizen science processes that use methods and data and analysis chosen by the academic lead. The story template for the REFLECT focus group is an agenda that includes the stories related to the findings of the research and the action options. The agenda is shared prior to the meeting with goals and expectations for what will be accomplished. It connects to the principles of participatory action research, the narrative data science, and the grounded theory goals of focusing on results that make a difference. This final process motivates participants to learn more and get involved in the next stages of peer research INNOVATION.

Agenda for REFLECT Focus Group in Preparation for Next Stages

Prepare final story templates of chosen stories that explain the main concern and identify solutions to distribute before the meeting with the co-design team and sponsor.

Details of meeting and expectations:

• The original working title of research proposal and the main concern.
• Summary of what happened during the research project.
• List of options for solutions to the main concern or how the social innovation could work.
  • Use either a short summary of why the solution might work or action scripts.

Agenda of work to be done:

• Review of each option according to priorities based on potential impact, patient roles, systemic discrimination reduction, feasibility, cost, and potential focus.
• Choosing the top solution and making any changes to it.
• For the final choice consider:
  • Relevance to equity-seeking groups and target medical condition.
  • Social innovation or enterprise potential.
  • Political obstacles and sensitivities.
  • Language for marketing.
  • Effort involved in reaching end users.
  • Costs involved.

This section has attempted to consider possibilities for future peer research as part of a curriculum for training patients, providing experiential learning for graduate students, research and planning team exploration of emancipatory and JEDI-informed research, and a chance for researchers to consider ways to prepare a research option where patient roles will shift to prevention and promotion.

Peer Research and Innovation

We begin this final topic with the implications of the fourth industrial technology paradigm for patients. We then propose an integrated peer research methodology that can act as a bridge between academic research and design thinking. The new theories, health systems from a patient perspective and patient standpoint, are then incorporated into peer research. With these elements in place, we explore how peer research aligns with experience design to unleash the untapped resources of academic research working together to respond to our changing future.

Technology-Informed Healthcare Opens Doors for Innovation

Here we return to technology because it has the best potential to significantly influence health systems and to open doors to other forces for change, including JEDI and democratizing science. One could consider tech-informed healthcare as increasing community-based and patient-focused care that will keep patients well instead of waiting for problems to mature.

Learning how to use technology needs to move beyond the instructions on packaging as it is currently. This learning may occur as part of school curricula, health technology professionals, or in the emergence of online and community-sponsored training connected to the transition to smart technologies. Health technology coaches are already part of online chronic care networks, and hopefully research will identify the benefits for patients and families. There might also be options for current online data curation platforms and personal research such as Zamplo (https://www.zamplo.org/), condition-specific patient networks in the Netherlands, and condition-specific patient networks such as Bladder Cancer Canada (https://bladdercancercanada.org/en/about-us/).

This is often referred to as the consumerization of healthcare that will be delivered as a seamless continuum of care, away from the clinic-centric point-of-care model. Broadly defined, the consumerization of healthcare is the trend of individuals asserting more influence and control over their medical and wellness care. To address this, non-traditional companies such as those in the retail, technology, and consumer goods sectors are looking to address consumer and patient needs (UBS, 2020).

Improving Patient Experience as Part of Improving Health Outcomes Through Health-Related Technologies

The following goals of health-related technologies returns to the emancipation of patients in their health and healthcare as full partners in healthcare transformation from numerous media and research literature.

• Shifting modes of diagnosis and treatment
  The distinction between diagnosis and treatment may become blurred as health monitoring shifts treatment from pharmaceuticals and direct intervention to early detection and prevention. Biosensors could become a part of human existence, as they scan and transmit information to systems for action or, more likely, regulate messages to citizens about medications, physical activity, and diet. The challenge with healthcare delivery then becomes how the monitoring and regulating functions are organized. This becomes a wholesale reconceptualization of ethics of privacy and control. What will be the role of patients in this new society driven by maximizing health by self-regulating systems? (Grinin et al., 2017, https://doi.org/10.1007/978-3-319-49604-7_13).
• Shift from acute care to prevention and promotion. Precision medicine holds great promise for prevention and public health, by identifying predisposed or high-risk patients for specific conditions and quickly developing treatment and remediation options to reverse or manage potential illness. This is particularly important for non-communicable disease, which accounts for 75 to 80 percent of healthcare costs. This also targets stress-related disease by targeting the source of stress and improving stress management. These two alone would dramatically change the configuration of what we know today as healthcare (Schwab & Davis, 2018).
• Changing the current magic bullet equation assumes that a diagnosis identifies the treatment model. Biosensors will initiate links with data systems and options for treatment such as the internet of things (IoT) that link all forms of health technology from physical, biological, and digital sources to inform patients and providers about options. This is being investigated by home care and chronic care networks to reduce professional cost. It is essential that health research find new ways to create stakeholder roles for patients (Grinin et al., 2017, https://doi.org/10.1007/978-3-319-49604-7_13).

The above narrative methodology now aligns with the inclusion of citizens in design thinking/human-centred design to complete a peer-derived solution that is able to make a difference. The last section of this chapter creates the bridge between peer research and design of new processes and products. Both peer research and innovation by design begin with identifying the right question to capture the main concern of patients; patients are included in both methods from the beginning of the process through to implementation.

Canada’s medical system is realizing that patients are the most underutilized resource in a digital health reality, but important decisions must be made if patients are to be stakeholders in their future on who owns patient data and who controls technology.

1. It has been said by many that the patient is the most underutilized resource in medicine. How can we accelerate the adoption of virtual care and the expanded capability of electronic healthcare records so that patients’ time is valued and they are enabled to be more actively engaged in their health and healthcare?
2. How can we ensure that all Canadians have equitable access to new health technologies regardless of their geographic location and their socioeconomic/cultural characteristics?
3. The private sector clearly recognizes the value of connected health data, as evidenced by recent announcements by companies such as Apple and Google. What will it take for Canada’s 70 percent publicly funded health sector to expand beyond its siloed legacy data systems and invest in big data and analytics?
4. How can Canada better support innovation and commercialization in the healthcare sector?
5. In an era where health information is being captured and linked across many points of the healthcare system and beyond, who effectively are the owners and stewards of personal health information?

Design Thinking, Human-Centred Design

I began to see design thinking and human-centred design creeping into community health research and realized that the theories related to SoE were applicable to design thinking as well because partnerships with end users of technology is a defining characteristic of design thinking (Abookire et al., 2020, https://doi.org/10.3389/fpubh.2020.00459). For example, design thinking in health technology development involves end users at the beginning of innovation to ensure that the right question is being studied and that end users are engaged during prototype testing that is iterative. The end of Chapter 12 explores the design thinking/SoE research approach not only as part of health technology innovation but as a model that can support patient research roles in JEDI, along with community health science looking to include patient-led research as part of research grants and projects.

Finally, the rapid development of digital health will impact patients in unprecedented ways, and they need to be included in these changes to ensure that data used in machine learning includes diversity and that patient autonomy and privacy is respected in the design and management of new technology. Patients can and should become citizen scientists of their own health-related data and data monitoring, to inform their healthcare decisions, especially as these decisions relate to personal devices and linked IoT. The following suggestions identify where SoE intersects with app development, design thinking, and lean product testing:

• Engage users as stakeholders to maximize consumer input in product and process development.
• Ensure diversity of data and data science to inform machine learning.
• Facilitate patient and community networks to support social innovation and social enterprise that build patient and community support of research and digital literacy.
• Create training in inductive research that includes iterative cycles that are the foundation for both peer research and product development for students and researchers.
• Include stakeholders in the process of identifying who uses, chooses, benefits, and pays for change.
• Use stories of innovation to support grants, team building, recruitment of real users, impact, and marketing.
• Explore individual funding and citizen education that ensures that all citizens have the resources to be part of the next stage of healthcare.

This section draws on the work of Valentine et al. (2017, https://doi.org/10.1080/14606925.2017.1372926), who introduce the use of design thinking for social innovation in healthcare using the Glasgow Public Health model that uses contextually sensitive narrative approaches to focus on community health, diversity, and inclusion. Those working or interested in community health are encouraged to read this foundational study of the need to explore alternative research approaches.

We now take a giant step in suggesting that peer research methods provide the tools to support the natural connections between academic research and innovation represented by design thinking. The analysis of each approach considers strategies, focus, data, and goals. This figure is provided to consider research approaches to understand the alliances according to processes, focus, data and goals related to design thinking.

Each of the approaches above come from very different research traditions, methodologies, and epistemologies, but all aim to understand and solve common real-life problems of communities and citizens. This rich diversity of approaches was included to show creativity in achieving new research partnerships and methods. Peer research is designed to work alongside formal research projects to add an authentic patient voice to the research or planning topic of concern. It also provides a research methodology that is designed specifically for patients, citizens, and communities. It shares many characteristics with community-based participatory health research and Indigenous science while bringing inductive practices to the more common deductive methods of medicine. Peer research as part of PaCER methodologies has been considered qualitative research that employs grounded theory iterative cycles to ensure that research methods can be adapted to a broad spectrum of participants. This is done to maximize diversity and ensure authentic inclusion that builds patient research equity as part of academic research teams.

We can now look at how SoE supports innovation. The following references provide a quick overview of design thinking in social innovation that is written for community and academic readers.

• The Stanford Social Innovation Institute seems to provide the most widely accepted summary of design thinking that reflects the emancipatory goals of peer research (Brown & Wyatt, 2010, https://doi.org/10.48558/58Z7-3J85).
• The hybrid model combining evidence-based practice and design thinking done by the library services at the University of Alberta is an excellent resource for beginners interested in design thinking (Howard & Davis, 2011, https://doi.org/10.18438/B8TC81).

In this section we propose a short version of the science of engagement for academic research to locate peer research in the realm of social innovation, social enterprise, and commercialization of health (Sebastianski et al., 2015, https://doi.org/10.2147/IEH.S60790). They suggest that publicly funded healthcare systems may reconcile “the tension between delivery of publicly accountable health care services, innovation development, and commercialization” (p. 78).

Patients will be the end users of future healthcare technology and, therefore, should be key stakeholders in the development and implementation of social innovation, social enterprise, and commercialization through peer research partnerships. This is facilitated by a bridge between peer research and design thinking. The bridge enables solutions that explain the main concerns from a patient perspective using peer research to inform design thinking ideation and prototype processes. Peer research could be used to continue to support design thinking, prototyping and implementation or commercialization after completing academic research projects.

Design Thinking Innovation and the Science of Engagement

Peer co-research methodology aligns with the inclusion of citizens in design thinking/human-centred design to find solutions that can make a difference. We now create the bridge between peer research and the design of new technology and health products. Again, we must begin with identifying the right question to capture the main concern of patients and then include patients from the beginning of the process through to completion. I also notice that some community health research is exploring design thinking and hopefully community researchers might explore peer research.

With the above foundation, this section pivots to design thinking as an “interdisciplinary collaboration that uses designers’ creativity and user centred approaches and methods to match people’s needs with what is technologically feasible and what a viable business can convert into a customer value and market opportunity” (Brown, 2008, p. 84, https://pubmed.ncbi.nlm.nih.gov/18605031/). This includes not only direct consumer purchasing but adoption by health systems as part of treatment options. Design thinking is characterized by a consistent set of steps that begin with engagement processes with potential consumers of new products and services and a series of steps to identify problems, potential solutions, and iteratively prototype options for social innovation or commercialization.

Design thinking is generally not considered a research method; it is, however, a set of standardized methods that are applied in a systematic scientific manner. We focus mainly on experience design (XD) as a holistic design approach where the designers are holistic problem solvers dealing with the ecosystem of the issue being investigated. It focuses on engagement of people and, therefore, employs a more narrative style, using all senses and multiple levels of data.

University-based Industrial designers and innovators from science backgrounds are trying to find ways to connect with the economic possibilities as new technologies emerge. The movement from individual products to integrated processes such as IoT may provide support for university innovation teams that have university support to bring new ways to focus on experience design, even with an incredibly large commercial sector.

Experience designers appear to have an advantage in the upcoming transformation of health in which value is created on a local level by addressing broader societal issues with all the stakeholders involved (Kleinsmann et al., 2017, https://www.ijdesign.org/index.php/IJDesign/article/view/2771/780). For example, RED, a ‘do tank’ that uses innovative design to tackle social and economic issues, was set up by the British Design Council in 2004 (Overbeeke & Hummels, 2011, https://www.interaction-design.org/literature/book/the-encyclopedia-of-human-computer-interaction-2nd-ed/industrial-design). These thoughts are reflected in a recent YouTube video by Tim Brown, one of the leaders of experience design who supports design approaches to foster emancipation (Brown, 2009, https://www.youtube.com/watch?v=UAinLaT42xY).

Design thinking, human-centred design, and innovation are being adopted by science movements that are looking to democratize science to make products and processes relevant and economically sustainable as an antidote to the current commercial structures of the industrial revolution. Health systems increasingly struggle under the pressure of political structures and funding, aging health facilities that struggle under the increasing population of those in need of care that call for programs to finance innovation. Nevertheless, there are signs that new technologies are creeping into the existing structures and new health systems based on greater use of technology that are percolating beneath the surface to provide options for transforming health and healthcare.

The new medical science platforms such as pragmatic clinical trials and precision medicine, the Gates’ global health programs in developing countries, and EUPATI, are a sign of political restructuring of health technology. In Europe and are examples of democratic health innovations that support new patient research opportunities. The goal is to infuse existing medical science with flexibility, creativity, quicker uptake, and relevance.

The following is a highly optimistic and hopeful proposal to focus on the urgent need to prepare for inevitable change. It is also important to include a recent project in the EU to canvas commercial innovation companies that identified that most were not using end users as part of their work on health devices and products because they were unsure about the ability of patients to understand the design process. Experience design engages citizens and communities as part of the process, but it has yet to explore training citizens to work with end users to increase and support recruitment, consumer involvement and confidence in prototyping. Considering the significant impact of merging technologies on the lives of patients, it is time to increase the role of end users in design and implementation methods at all levels of health research and innovation.

Citizen science has helped motivate new models, such as maker spaces, where citizens and people from many disciplines come together to solve problems and create solutions for the marketplace. Wiggins & Wilbanks (2019, https://doi.org/10.1080/15265161.2019.1619859) discusses the importance of citizen science in health and biomedical science. Patient engaged research, as seen in Callard and Perego (2021, https://doi.org/10.1016/j.socscimed.2020.113426) is an excellent example of peer-led research in healthcare.

Open innovation in science began with the challenges of academic research cultures and silos that focus on making journal articles accessible to citizens as part of open access. The most recent article (Beck et al., 2022, https://doi.org/10.1080/13662716.2020.1792274) creates the framework that makes it possible for citizen scientists and other key stakeholders to be part of academic research that is government funded.

In a review of literature on citizen involvement in community-based health research, Israel et al. (1998, https://doi.org/10.1146/annurev.publhealth.19.1.173) tracks the movement from positivist research to emancipatory research in health promotion and identifies methods that show promise for co-research. However, apart from the work of the Wellesley Institute related to Peer research in community research (Roche et al., 2010, https://www.wellesleyinstitute.com/publications/peer-research-in-action/), there are few published examples of how to encourage community members to conduct research. The exceptions, used throughout this book, included PaCER research, which trained patients to conduct research with patients and community members; Wellesley Centre at York University, which trained community members to recruit and co-research with institute members; and the HIV training unit at the University of British Columbia, which trained HIV patients as community researchers. The British Columbia SPOR unit hosts a patient voices network to share experiences that relate to planning and health decisions with healthcare partners and health researchers, and it has recently announced interest and preliminary explorations into a patient-initiated research assistance program.

The most advanced move to peer research and full research collaborations have emerged as part of Indigenous nationhood and the ability to form equitable relationships with Indigenous nations. In this regard, the UN declaration on Indigenous nationhood has created international alliances of Indigenous nations and academic units. In Canada, two-eyed seeing, as articulated by Jeffery et al. (2021, https://bcmj.org/articles/two-eyed-seeing-current-approaches-and-discussion-medical-applications), and in other countries with strong Indigenous traditions such as Australia, New Zealand, South Africa, and the United States, there have been dramatic shifts in a data system to recognize data and ownership of results through the lens of sovereignty. One project in particular depicts the results of over 20 years of collaboration to create a partnership based on two equal nations (Brunger & Wall, 2016, https://doi.org/10.1177/1049732316649158).

We have much to learn from these early Indigenous pioneers of authentic research partnerships. Siksika Nation in Alberta was the home of Henry Three Suns, who was part of the co-design of new social movements case studies. He fractured many of the original epistemological beliefs I brought to the new social movement research. The value systems of the Siksika Nation embraced the primacy of the land, collectivity of community, and ancestors as essential elements of the cosmology. These were in stark contrast to assumptions that were grounded in the present and future as values of Western and European nations. This contrast fractured the values and meaning underlying the study and sent me back to each of the other co-researchers to test out how their basic values informed their co-research experience. There were many changes made that brought depth to the emerging theory to reflect their understanding of individuality and collectivity, the past and the present and their role in change.

Early in PaCER, an Indigenous community worker took the training and was able to identify the common links between PaCER and Indigenous ways of knowing. There have been six Indigenous cohorts in PaCER to date, and these have not only been grounded in their Indigenous values, but Indigenous values have resonated with many of the research teams.

We have attempted to introduce the importance of new partners and ways of thinking as we shift to a method tailored to address the links between peer research, culture, academic research, citizen science, design thinking, and social change.

Peer Methods Meet Design Thinking

This section explores a hybrid peer research approach that uses peer research as a bridge between academic research and design thinking. Peer research, as a method for engaging patients in academic research, can increase the credibility of experience design and human-centred design by using rigorous methods to identify priority concerns of patients and communities. Skilled patient research roles can be introduced to extend current capacity to bring a patient perspective of what needs to change and how to make it happen.

Table 12.7 compares peer research, citizen science, open innovation in science and design thinking as part of social innovation and social enterprise. The table begins with the goal and role of patients and researchers, and then outlines the categories of design thinking, to lay the foundation for discussion of how SoE relates to social change.

The stages of experience design are:

1. Engage and establish empathy with community—aligns with SET
2. Define the problems—aligns with SET
3. Ideate options—combines COLLECT and REFLECT of peer research
4. Test prototypes for feasibility and marketability, which uses end users to test products
5. Test and scale for commercialization

These steps are proposed to open discussion with collaborative researchers and their networks who are interested in cross-sectional research. PaCER and peer research has demonstrated that patients are a reliable source of innovation, and their research shows that concerns and needs can be identified and studied by patients to produce solutions that will be effective and adopted by patients. The nascent academic, peer research partnerships have the potential to be the bridge between academic communities and greater innovation and commercialization in health.

While evidence-based medicine tends to be deductive to test for significant effects of hypothetical situations, inductive research uses cycles of explaining problems to find solutions. Experience design cycles of prototyping and field testing include input from end users at each step. In looking at the results of PaCER studies to date, peer research like experience design can use abductive research because both celebrate intuition and creativity in finding solutions and opportunities as part of innovation.

Citizen science opened options for inductive experimentation and observations in the natural world, while maintaining deductive evidence-based protocols and disciplinary frameworks of science. Peer research is a form of citizen science that suggests an opportunity to bring peer co-design approaches into experience design stages of engagement and empathy. This then opens common ground for both peer research and design thinking using iterative cycles of data collection and analysis.

The potential of a parallel framework for peer research and design thinking is captured in Figure 12.4 that provides links between existing design and peer processes.

• The top line represents design thinking stages, the second line represents the engagement strategy for peer research that is extended to reflect the final prototype testing phase. This model suggests that peer research can begin as a companion to academic research that has some expectation of innovative results. The top line represents experience in design thinking.
• The second represents peer research.
• The bottom represents the research processes involved.

Both experience design and peer research are committed to engagement and the resulting empathy. Here empathy is seen as a powerful communication skill of understanding and being aware of what other’s experience, which is a way of appreciating and fostering authentic research where end users’ views are sought and valued. Peer research would take this perhaps one step further to include end users in decisions about the need for and characteristics of technology.

Figure 12.4 Hybrid Model of Peer Research and Design Thinking

This can now be translated into a functional hybrid of peer research and design thinking in the links between the two. This hybrid brings the academic credibility, JEDI focus, publication potential of academic research to design thinking innovation and commercialization. An academic research team could use peer research stages of the new hybrid model to inform an innovation grant that would use the peer research already completed to meet the stages of engagement and empathy, defining the problem, and ideating options. The grant could then focus on using marketing and engineering resources of experience design to set up rapid prototyping, testing, and commercialization. This would complete design thinking, conducted by design thinking specialists in collaboration with an academic research team with peer research that would act as a bridge of patient input throughout.

Peer research could also be started as part of design thinking funding that is interested in conducting peer research to augment aspects of design thinking processes. This could be done to enhance the engagement and empathy stage, to meet JEDI and citizen science principles. This could increase the probability that the product, process, or service is indeed designed in conjunction with patients and citizens. A peer researcher could be hired to design a process in keeping with the expectations of the designer. The methods and theory of the science of engagement can be streamlined to accommodate a combination of design thinking and peer research, using methods and theory from both.

The following sections address design thinking and how science of engagement and peer research might contribute to it. We have adopted the stages of design thinking, as used in the above figure to structure this section because it extends beyond the current scope of peer research.

Empathy and Engagement

These are the hallmarks of peer research, the science of engagement, and design thinking/experience. Both include the values and experiences of citizens in order to engage authentically and deepen understanding of the real-life struggles and motivation to make a difference. Co-research reinforces not only empathy but also the equity of peers within the research process. In the future, patient identity and control will be transformed through technologies that are preventive, augmentative, and promote wellness and longevity. This also includes JEDI emancipatory principles of equity, diversity, and inclusion that could guide future design options.

Salutogenesis is a theory of patient expertise in how to handle medical and health challenges. It underlies their potential to be engaged in research that aims to improve patient experience. The new theory template of a patient perspective of health systems opens debate about what technologies are included in each of the health systems now in place. Standpoint theory brings the importance of both identity and agency to the design of new products.

Today, in both peer research and design thinking, empathy and engagement include expectations to become familiar with the lived reality of individuals and groups and to learn from people who know first-hand the problems, preferences, and hopes of populations. An example of this using crowdsourcing might include the peer research team creating an online video about who they are and their interest in finding stories about patient concerns related to a research project or innovation. They could introduce a downloadable story template and demonstrate filling it out. The download would include a link to declare the level of their interest in being involved along with the completed story templates. The teller’s story could also be told by video, which allows the peer research team to find common goals and expectations of technology that could then be shared with the storytellers.

Engagement is considered part of the SET stage in SoE, and as such, it spans engagement and problem identification of design thinking. The empathy/equity in peer research continues throughout, deliberately including participant co-researchers in data collection and analysis of both the research topic and the eventual solutions for change.

Finally, the basic philosophy of this SoE is framed by cognitive empathy that refers to our ability to identify and understand other people’s experiences and reactions. It has been clear that peer research is ideal for achieving cognitive empathy with communities of interest. This is an opportunity to appreciate and share concerns and negative experiences early in the process. Cognitive empathy requires researchers to ensure the level of diversity and inclusion necessary to achieve equity and justice in future technologies.

Patient standpoint theory is an effective tool for building cognitive empathy among health professionals and citizens involved in research. This new theory enables all parties to analyze patient stories about real-life problems in ways that suggest solutions that relate to potential technologies and how to use them. Also useful in experience design is the ability to use a patient standpoint theory to analyze stories using two axes of identity and agency.

Identity helps define how technology might make people feel good about themselves. Here I am reminded of my work with people who were disabled who would show me a closet or a room of technologies that someone thought they should use. It was not something they wanted or needed or something they would use in public. The axis of agency from avoiding failure to approaching success is seldom used in technology design that focuses on the instrumental value instead of how and why patients use technology. Without an understanding of more than function or cost, technologies will continue to live their lives in closets.

Standpoint theory also breaks through dominant discourses of patient experience of vulnerability to glimpse how health situations and systems impact the identity and agency of patients. Instead of considering patients as vulnerable because of their conditions, the focus shifts to how the systems, relationships, and services impact patient identity as vulnerable and dependent. When citizens are included early in the design process, they are more able to regain confidence and agency to become resilient and competent in their health and healthcare. Co-design and technology can support health promotion and equity in health.

Define Problems

In design thinking, problems are identified through connecting with a subset of the target population. Problems are then identified and discussed by the design team to create statements of the problem from a citizen perspective. This creative process uses stories, games, ice breakers, and focus groups.

This is where peer research differs. The last stage of SET is the convening of a co-design team of patient consultants who prioritize the problems identified by patients and their allies. The priority is identified according to its importance to patients and the potential for change. Concerns are often embedded in healthcare relationships, policy gaps, access to appropriate care in addition to access and exclusion from the services or products needed. There are circumstances when the question for co-design is enmeshed within health systems that are difficult to identify, and this is where the iterative cycles of peer research come in to clarify the nature and site of the concern.

Analysis of blockages or gaps in health systems has proved difficult using standardized survey measures, mostly because the instruments are written by professional researchers from their research focus. Here we focus on some methods that can be used to identify and analyze concerns:

• Consultations with expert patients, community resources, clinics online or in-person.
• Survey of grey literature and patient experience literature.
• Patient researchers shadow procedures that have been identified as concerning using story templates.
• Open crowdsourcing of solicited stories using a story template or short descriptions of difficulties, gaps, delays.
• Sorting these into categories that can be prioritized using group decision-making or framework analysis.

The problems chosen are written from a citizen or end user perspective, and these become part of the ethics proposal. The co-design team advises on potential recruitment, language and politics to provide a full understanding of the problem chosen. This option could inform complex problems that seem appropriate for technology support or solutions.

Ideate Solutions

In experience design thinking, problem statements from the problem definition stage inform the design team, who typically generate ideas about how to solve the problems, sometimes in collaboration with citizens. This process can also include large brainstorming and creative decision-making collaborations with stakeholders. At this point, engineering and marketing is included, but there is a caution that this detail might limit creativity or criticize ideas prematurely.

In peer research, searching to explain how problems emerged and are perpetuated leads to focusing on understanding the problem in detail in order to effectively uncover solutions that resolve or reframe the concerns. This occurs during the inductive process of COLLECT, which includes iterative cycles of storied data collection and analysis. This process uses individual and group research methods that encourage in-depth and wide-ranging explanations of problems. Groups and individuals are also encouraged to improvise as a way to think about potential solutions.

Grounded theory’s constant comparison and iterative analysis supports the search for solutions. Patient stories that are meaningful to patients and communities are constantly compared and studied to identify similarities and differences to identify common narrative properties (who, when, why, what, how). The use of narrative throughout also ensures that the solutions are real-life solutions to the problems of importance to patients.

The theory of salutogenesis provides a strong asset-based foundation for ideating new solutions. Salutogenesis suggests solutions that build confidence in handling medical problems and provides a structure for ideating solutions in peer research. These include:

• Cognitive actions related to identify and find help and support.
• Coping strategies that build options for managing problems.
• Finding meaning and motivation and a sense of purpose.
• Social connections that build wellness and support.

Standpoint theory suggests the use of patient identity and agency to identify problematic psychological spaces and the nature of the situations. This supports understanding goals and possible options for innovative solutions. This is a new theory that promises to move current analyses to evidence-informed choices for action:

• Challenging health problems to find new ways to overcome them.
• Resisting the loss of agency.
• New relationships and roles that improves one’s sense of identity.
• Opportunities to contribute and take control of problems.

These powerful new engagement tools are part of SoE in support of data-informed solutions. Peer research works well within qualitative health research to bring evidence-based collective experience narratives into existing research agendas. It is also able to dive deeply into personal and community-lived experience by including unheard populations in community science. This work could bring informed and innovative patient solutions to design thinking. This is likely the most important contribution to the goal to build bridges. Health problems are entrenched and difficult to understand. Peer research could bring new rigour and detailed analysis to ideas for solving difficult and complex health-related problems in ways that will resonate with patients and lead to technologies that will be accepted by end users.

Develop Rapid Prototyping, Test, and Scale

At this stage, peer research as part of academic research takes a different direction. The action-oriented focus in PaCER research led to dissemination and, in some cases, to implementation studies that arose out of the findings.

One of the founders of PaCER, Dr. Deborah Marshall, sponsored a series of peer research contracts to study new ideas related to knee osteoarthritis (Mackenzie, 2022, https://ucalgary.ca/news/ucalgary-researchers-lead-international-program-develop-value-framework-socioeconomic-impact-living). The findings suggested a patient app that would enable patients to track their symptoms and treatment results, stay in touch with new ideas, and prepare reports for their physicians. These findings were then moved into a collaborative innovation team consisting of patients, family physicians and researchers, and technology innovation specialists.

Design thinking, on the other hand, excels at taking good and needed ideas through fast, low-risk incubation that consists of iterative testing of mock-up digital and physical products in person or online. The development and testing of possible solutions using low impact trials minimizes health risks, and this is essential in health innovation. Testing includes usability, acceptance by the user/patients, and the market variables related to who pays and how much.

The iterative design prototyping practices are similar to the iterative constant comparison cycles of peer research, which might suggest that the peer researchers could become an important feature in design thinking at the rapid prototype stage.

Instead of testing THE solution as part of academic research, design thinking uses a process of incubation that is based in low-risk experimentation cycles within safe test sites. This avoids the academic reluctance or inability to change prototype directions where, if THE solution fails it is considered a failure of the concept.

The ideas of low-risk incubation and modification may hold the answer to the difficulties in the uptake of health research findings. On the other hand, peer models could easily be modified to include prototype testing because the methods are iterative and a natural fit with moving from reflection to testing and marketing. This would extend the process to SET-COLLECT-REFLECT-INNOVATE engagement strategy.

Design thinking is customer- and user-centred, and by introducing peer research and patient-led options, it is possible to include theory-informed direct experience research. This would include a storied approach to interviews, observations, focus groups, collaborations and arts-based projects. The most salient feature, however, is that peer research reinforces engagement and empathy by acknowledging patient expertise in analyzing and interpreting input throughout design thinking, just as peer research reinforced engagement in academic health sciences.

The rigour of peer research can provide new options for design thinking/social enterprise and citizen science. As a new option that builds research capacity at the personal and community levels, peer research provides ways to build community alliances and partners in social change.

This capacity can be employed by communities as they try to understand systemic barriers in order to influence policy and economic decisions. This can also be used when negotiating with research teams interested in forming RRI and OIS partnerships, citizen science research, and changemaking projects.

Next Steps

The above suggested collaboration could include peer research iterative cycles, supported by a university team with initial ethics approval for implementation. The options for prototype testing would have to be negotiated to include iterative cycles that would or could produce changes to the prototype. The other way to include peer research would be to become part of a design thinking prototype testing team covered by the regulations of innovation funding.

This chapter has evolved dramatically and, to this end, it has become a process of thinking about the social innovation of peer research/design thinking alliances that could have a major impact on healthcare transformation and social enterprise. By capitalizing on the connections of peer research to citizen science, peer research could become an active research partner in OIS and related RRI models.

Summary

This final chapter opens the door to many discussions and opportunities to include patients and communities in the major healthcare options of transformation as part of medical science, and design thinking. There are many questions that might be asked.

Questions for Discussion

1. What would it take to create interest in the science of engagement in health research and innovation in your situation?
2. Is your health research prepared to open conversations with design thinking, and, if a maybe or a yes, how might that conversation be initiated?
3. Is design thinking, social innovation, and social enterprise motivated to explore ways to move academic research ideas closer to innovation? If so, how might the risks be managed?
4. Is it possible to scale up peer research through existing training models in social innovation, social entrepreneurship, or design thinking to create adaptations that would focus on peer research, participatory research, changemaking research, and research as part of social innovation?
5. Are there informal ways to embed peer research engagement strategies and peer research roles in either academic research or design thinking projects that have the interest in training a patient or community member to be a mentor to work with team members to create a customized training program?
6. What would it take to test and scale a PaCER model for design thinking?
7. Are there informal ways to embed peer research engagement strategies and peer research roles in either academic research or design thinking projects that have the interest in training a patient or community member to be a mentor to work with team members to create a customized training program?

Resources

This is the final report of the casebook using design thinking to inform social change. This example summarizes the resources in Chapters 9 and 10, as an example of design thinking for moral injury to inform rapid testing and commercialization.

Social Innovation and Moral Injury: A Design Thinking–Informed Casebook

Cera Cruise

CORE 591

University of Calgary

September 18th, 2020

Introduction

Design thinking requires the same attributes in its users as is the mission of the Community Rehabilitation and Disability Studies (CRDS) program at the University of Calgary—to instill in its students the empathy with innovation with consumers to challenge mainstream perceptions of ability that separates those who benefit from design thinking from those who do not. Like anything that is human-focused, design thinking is an iterative process and students in the CRDS program are well equipped to adapt their training, both academic and practical, to create social innovations in their field of choice. A focus on social innovation in health reflects a growing consensus that social needs are not being met by current practices within the healthcare system and that patients are a wealth of knowledge to create stronger healthcare systems.

As a fifth-year completing a combined degree in Community Rehabilitation and Political Science, I feel very fortunate to have an opportunity to apply skills I have developed in both fields to create a patient-informed innovation for those with moral injury. Studying political science has taught me how to apply theory and use it as a tool to enhance my understanding of structural inequalities, while the CRDS program has instilled in me the belief that individuals are experts in their own experiences. Therefore, in my mind, solutions ought to come from the bottom-up rather than the top-down. This is the basis of social innovation.

Moral injury is intriguing to me in that it’s a deeply personal injury that requires an individualized response—there is no “fix-all” cure. As someone with post-traumatic stress disorder (PTSD), I have empathy with those with moral injury, recognizing that their hurt is significantly different than my own, as the cause of their injury is an internal violation of what it means to be a good person. Everyone wants to think of themselves as good and kind and brave—to have that taken away is to experience a loss of self. Being encouraged to step into the patient’s shoes while proposing a social innovation was a huge change for me, as that’s something that I’m able to do easily but is usually discouraged in an academic context. Actively reading individual stories allowed me to understand the extent to which moral injury harmed them and to share several theoretically informed observations in this casebook that could impact how healthcare providers with a moral injury experience recovery.

I looked at three systems that individuals with moral injury potentially act within—treatment and diagnosis, community inclusion, and peer and natural support. The treatment and diagnosis system traditionally takes place in psychiatric settings—the patient comes with a problem and the professional helps them fix it. To understand this system, I used an open-access PowerPoint for professionals, instructing them how to treat moral injury through the National Association for Alcoholism and Drug Abuse Counselors’ (NAADAC) website.

The system of community inclusion occurs when disability-specific programs are created within communities. Prior to searching for such programs, I wanted to understand the community itself— moral injury is usually an injury associated with members of the military, but I wanted to look at healthcare providers, due to the extraordinary circumstances they are currently in due to the COVID-19 pandemic. I used Bailey’s (2020) online newspaper article, which reported physician’s claims of moral injury and then found a career-specific resource currently offered to healthcare providers—the Whole Health Medicine Institute. This qualifies as a community inclusion program because it has specific inclusion criteria, centred on both the feeling of dissatisfaction with the medical system and the profession of the individual. It was created by a physician with a moral injury, and many of the contributors to the program also identify as having a moral injury as a result of their career in the healthcare profession.

Finally, I used a peer support program in Ontario, Project Trauma Support, as an example of the effectiveness of peer support in the hopes that this model could inspire my innovation. Together, the three systems came together to share various perspectives and allow me to observe the impact of power on the human-centred of those with moral injury. From a standpoint theory perspective, individuals with a moral injury in the military are in the crisis and change quadrant—they have negative self-regard and internalize the cause of their injury. In other words, it is their fault the event occurred, and they do not deserve to be well. However, in a brief review of the literature, there is little to be found to point to how healthcare providers differ from members of the military in their experience of moral injuries; it is presumed they experience it the same way. Evidence from Bailey’s (2020) article points to physicians recognizing that their actions are limited by external restraints, but that the consequences of these institutional restraints lead to them having a negative self-regard. This set of reactions points to physicians being in the learned helplessness quadrant and, therefore, needing a different set of support from the military members in the crisis and change quadrant.

Patient roles and experiences within each of the three systems were focused on, as power relations can tell us the extent to which a patient is empowered within the system. When creating a social innovation, analyzing the patient’s role is crucial to reveal social gaps within the system. Standpoint theory, which combines a salutogenic perspective of well-being with the degree to which an individual feels control of their circumstances is internal or external, acts as an indicator of how effective intervention is. Salutogenesis reconceptualized health as being on a spectrum—the aim of my proposed intervention is to assist the individual to be well, rather than simply ‘not ill.’ Markers of transition from unwell to well in users of my innovation for healthcare providers with moral injury will be increased self-regard and a lessening sense of needing to control emotions internally. After sharing the findings of my collective analyses, I will share my social innovation proposal to create a story sharing online platform that is intended to create an anonymous community of individuals with moral injury. Potential barriers and theorized motivations of individuals to participate in the innovation will then be discussed, prior to a reflection on the value of a design thinking-based social innovation course.

Day One

Findings

In the deficit-based diagnosis and treatment system, the patient is passive and responsible for changing their world view to correct the deficit, while being guided by a professional who decides when acts of amendment are sufficient or insufficient, thus decreasing the patient’s agency. The relationship dynamic is about conformity, with the professionals probing patients and focused on the achievement of patients graduating from being ill to not-ill. While in the peer system, the patient is also responsible for changing their worldview; it is done both for themselves and to help others who are experiencing similar emotions as a result of moral injury. The example of a community inclusion system, the Whole Health Medicine Institute, acts against the hegemonic medical system by training healthcare providers to understand health holistically. Healthcare providers enrolled in the Institute have more agency than patients in the treatment and diagnosis system but are still acted upon by the program. Countering this model of participation is the peer and natural support system. In the peer system, the power lies with the patient; they decide if they want to share their experiences with others and there is no expectation that they do anything except support others. Supporting others can facilitate new self-narratives. The peer support system changes the role of patients from morally corrupt individuals to people who can help others and make meaning out of their experiences. Peers understand the unique factors that lead to moral transgressions and create a non-judgmental environment through which parties can redefine themselves. Power is horizontal rather than vertical, and the dynamic is one of relationships and learning.

Day Two

Salutogenesis was introduced to us on day two of our block week course and is significant for my innovation in that the application of a salutogenic lens gives my innovation both a measure of self-described patient progress and breaks down components of resilience, so that my innovation can target the specific needs of patients. Rather than aiming for a lack of illness, I hope for patients using my innovation to gain expertise of their own well-being.

A process of salutogenesis is the building of generalized resistance resources (GRRs) to stressors. Challenging a propensity for individuals and medical systems to pathologize stressors, salutogenic theory encourages the development of GRRs to respond to, instead of combating inevitable stressors. Resilience is created when an individual has a variety of GRRs, this results in an internal sense of coherence (SoC): stressors are met as challenges rather than obstacles. The three components of SoC are a sense of meaningfulness, a sense of comprehensibility, and a sense of manageability. A sense of meaningfulness is created when an individual determines that overcoming the stressor is worthwhile and will result in personal spiritual, emotional, or physical gain. Comprehensibility occurs when internal and external environments are understood by the individual to be predictable. Finally, having resources to respond to stressors leads to a sense of manageability. The aim of my innovation is to strengthen the SoC of patients using program resistance resources (PRR) to assist patients in developing their senses of meaningfulness, comprehensibility, and manageability in response to the stressor of a moral injury.

Findings

Using a salutogenic lens, I observe that those with a moral injury have very little sense of coherence. If a professional is going to treat a patient and try to assist them in moving out of crisis, creating program resistance resources (PRR) for each of the three components of sense of coherence would be innovative for this population. Professionals in the treatment and diagnosis system understand that healing is a spiritual endeavour, and that little meaning is attributed by those with moral injury to the harmful event. In the community inclusion system, a sense of comprehensibility is encouraged in program participants, and this sense of comprehensibility is assumed to heal healthcare providers who came to the program when they felt that the medical system was not allowing them to fulfill their moral obligations as healthcare providers. The peer support system aims to create support resources that enhance an individual’s sense of manageability by knowing that there are peers who understand what they are experiencing as a result of moral injury. Because shame is such a big component of having a moral injury, having a place where others will not express disgust or anger over one’s actions is a significant resource. This finding in particular inspired the creation of my innovation.

Day Three

On our third day, the premises of the theories we used the first two days, systems analysis and salutogenesis, came together in the form of patient standpoint theory. Patient standpoint theory comes from Marxist origins and is intended to emancipate patients and assist them in challenging the traditional passive patient role in healthcare systems (Marlett, 2020). Creating a grid, self regard or dis-ease and ease, influenced by a salutogenic understanding of health, are measured on the horizontal axis, while the vertical axis measures agency, referred to as the locus of control. Using scripts from the three systems—treatment and diagnosis, community inclusion, and peer and natural support—used standpoint theory to understand where on the grid patients are at the onset of their moral injury and where on the grid treatment or programs attempt to guide patients towards.

Because life stories are not static, everyone moves from quadrant to quadrant throughout their lives. Where the quadrants overlap—challenge, defensive, transformation, and contribution—is where transitions occur, when one journeys from one quadrant to another. For example, for someone who has a lack of self regard that is highly internalized (i.e., some in the crisis and change quadrant, giving up control and understanding that they cannot control everything will invoke a highly defensive response, as they transition towards learned helplessness). Standpoint theory is a valuable foundation for my innovation because it shows how individuals currently view themselves and what they experience as self regard and agency change.

Findings

Using standpoint theory to understand how patients feel about themselves and the amount of control they perceive to have on their circumstances is useful when creating a social innovation, as it shares what patients need in order to feel good about themselves again. Someone in the competence quadrant is confident and feels in control of their life. Their SoC is strong, thus they are equipped to handle the usual stressors they experience in their everyday life. People with a moral injury may have been in the competence quadrant prior to the morally injurious incident, but the incident proved to be too great a stressor for their GRRs to work effectively. They then rapidly transitioned to the crisis and change quadrant—their self-regard was negative and highly internalized. Within members of the military, who were the focus of my treatment and diagnosis and peer and natural support system examples, individuals seemed to be in the crisis and change quadrant when the intervention was introduced to their lives. However, at the Whole Health Medicine Institute and in my review of the grey literature, healthcare providers seemed to predominantly be in the learned helplessness quadrant, as they had negative self regard of their professional performance but felt that this was out of their control. Control instead lay with the medical system itself. Because moral injury in healthcare providers is only emerging as a field of study, this is significant because it shows that interventions that work for members of the military may not be as effective as for healthcare providers: healthcare providers attribute the cause of their negative self-regard to external forces and, therefore, have different needs to eventually transition back to competency.

Concept Proposal

A finding of my analyses was that people with a moral injury seemed to lack a sense of coherence: there was no meaningfulness, manageability, or comprehensibility attributed to the morally injurious event. Combining this observation with the observation that healthcare providers with a moral injury typically exist in the learned helplessness quadrant points to PRRs needing to be created to meet the needs of healthcare providers with a moral injury to allow them to create a sense of meaningfulness, comprehensibility, and manageability about the stressor that is the moral injury. Specifically, the stressor/cause of moral injury seems to be the individual being unable to overcome the stressor created by the morally injurious event, rather than the event itself. This premise leads to two conclusions: firstly, to prevent moral injury, healthcare providers’ generalized resistance resources (GRRs) need to be sufficiently developed to respond to potentially morally injurious events, and secondly, those with moral injury would benefit from an intervention that specifically develops their sense of coherence so that they can develop their own resistance resources.

Using design thinking, I have shown above the process by which I came to create my innovation for healthcare providers with moral injury. The COVID-19 pandemic has illuminated to many the unique stressors that come with being a healthcare professional. Healthcare professionals face time constraints, long shifts, patient quotas, and pressure to increase billable services, resulting in less time being spent with patients and the knowledge that they are structurally unable to do their job in a manner that they see as morally permissible. Stories shared by physicians include being unable to treat patients without insurance, sending patients into debt because of unnecessary testing, and patients dying because they were unable to find the cause of their illness or treat their injury (Bailey, 2020; Kay, 2018). The intention of the innovation is to strengthen personal agency and improve self-regard of healthcare providers: to assist participants into the competence quadrant. Standpoint theory informs the innovation by using data gained from the above analyses to insert patient voices into the innovation. The accumulated analyses above point to healthcare providers with moral injury predominantly being in the learned helplessness quadrant, as opposed to members of the military who are firmly entrenched in the crisis and change quadrant. Standpoint theory shows us that if we increase healthcare providers’ agency prior to their self-regard, they will be pushed into the crisis and change quadrants. This quadrant is characterized by the individual feeling traumatized and guilty; it was where the individual was immediately after the morally injurious event. Instead, healthcare providers’ self-regard should be improved first, followed by encouraging a more internal locus of control. From learned helplessness they transition to a place of acceptance prior to using contribution to regain their feeling of competency.

The innovation is a PRR that takes shape in a website where users can anonymously post their stories of moral injury caused while working in the healthcare sector. Stories are not limited to be shared in written essay form—participants will be encouraged to use any medium they find meaningful. Because so many healthcare professionals, notably home care workers, are immigrants, sharing stories in English may not give the participant the ability to express themselves fully. Reddit was considered as a sharing platform, but the ability of users to upvote and downvote stories could open up the potential for shame or comparison to others with more popular stories. For example, a story about passing COVID-19 on to residents in a long-term care home may receive more sympathy from others due to the fact that it was unavoidable and unintentional, than a story about a doctor forgetting surgical sponges in a patient who eventually passes away from sepsis. The idea of the website is not to cure the patient, but to assist them in beginning their healing journey in a space where they don’t have to be afraid of judgment. These are individuals who may genuinely feel that they are not worthy of feeling joy or being treated with kindness or experiencing any kind of recovery. By creating space for participants in my peer support project to share their stories in a way they define as meaningful, participants have agency to share what they determine as important to share, as opposed to within the treatment system where the professional demands that the patient is completely open with the professional. Sharing stories moves the participants away from the crisis quadrant by lessening their internalization of shame over their actions. Opening up to a community can introduce new narratives being shared by others (i.e., for the individual who passes COVID-19 on to a resident at their place of work, repeatedly hearing that they are not morally at fault could combat the self-perception of them being a terrible person). The intention of creating a tangible product is so that participants can see that they have something physical to contribute to others, helping them transition from acceptance of their actions to a sense of competency.

Barriers to participation could be participants believing that they don’t deserve to recover from moral injury as a hallmark of injury is a negative self-regard. Having participants at various stages of recovery—acknowledging that recovery is not an end point but a lifelong journey—could encourage those whose moral injury has left them entrenched in the crisis and change quadrants to try something new with the motivation that they could improve the healthcare system for others. This doesn’t require them to believe that they are worth helping, and I think this could overcome that particular self-created barrier.

Stakeholders that could be involved in discussing my moral injury website are: healthcare professionals who self-identify as having a moral injury; healthcare administrators; former healthcare professionals; writers, artists, singers, and others who have experience sharing stories in alternative ways to verbally in a conversation; civil servants from the Ministry of Health who both impact and are impacted by the innovation; and members of the military who could share their experiences of regaining their sense of coherence and competency after suffering a moral injury.

McCarron et al. (2020) hypothesize that there are seven motivations for patient engagement in healthcare. The seven motivations are self fulfillment, improving healthcare, compensation, influence, learning new things, perks, and conditional (McCarron et al., 2020). I found it helpful to place these motivations onto the standpoint theory diagram in the way that I understood individuals in the four quadrants to be primarily motivated. For those in the crisis and change quadrant, they are motivated to get out of the crisis; they need emotional compensation and conditionally participate on that basis. Those in learned helplessness are characterized by their lack of motivation and need to improve their self regard to transform in accepting themselves and their situation, thus they had the least number of motivations out of all the quadrants. I determined that their motivation was conditional on the basis that there was some perceived benefit to the individual as this seemed the strongest motivation in terms of a mental cost-benefit analysis by the individual.

In order to promote this innovation, I would aim to contact the human resource departments of private healthcare companies such as Sienna Senior Living, who managed Altamont Care Community prior to it being taken over by the Ontario government due to mismanagement during the COVID-19 pandemic; hospitals with busy intensive care units and emergency departments; medical associations; and nursing unions to spread word of the website to their employees/ members. This innovation exists within the peer and natural support system, but for it to be effective there needs to be sufficient ‘buy-in’ for there to be a community.

Reflection

I am thankful to have had this course as my last CORE course needed for my BCR, as I think it captures all of the components that make the CRDS program so necessary in a time of radical social change. Faith was placed in us as students to take theory and quickly learn to use insights gained from theory application to create a product that has data to back up its legitimacy as an effective innovation to solve a social problem. Based on conversations and class discussion, it seems that students embraced the opportunity, and the skills learned went beyond those necessary to continue in the field of design thinking and social innovation. Having patients assist in teaching the course was a highlight for me in that the course ‘walked the walk’ that the CRDS program has been instilling in its students that individuals are experts of their own experiences. To me, it helped confirm the belief that the role of a critical studies academic is to use the institutional power gained by their position to amplify marginalized voices.

As we see, post the Me Too movement and during the current Black Lives Matter protests, information is becoming more open and accessible and allows for the empowerment of groups that feel unheard and unseen. Design thinking capitalizes upon this to allow for users of services to have a voice in the services that they use. When systems are not designed to meet the needs of groups or result in some groups receiving beneficial treatment over others, the system is inherently undemocratic and is not fulfilling its purposes. Design thinking and subsequent social innovations shape systems so that they work for the people rather than shape the people so they can work for the system. This type of knowledge is lacking from traditional university courses, and the exclusion of applicable knowledge seems to me to further ingrain academia as an ivory tower, with little understanding of the real world. When students graduate with real skills, they are better equipped to succeed in their roles and make lasting change to the systems that they will begin to shape

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