3.11 Possibilities: A bridge between academic research and innovation

This chapter is the result of a confluence of many factors which take us to potential futures for peer research as the science of engagement finds traction beyond individualized care of health systems by communitizing science and human services. As the final chapter, we capture the urgency and complexity of innovation that looks for new citizen and community research voices to bring creativity, motivation and lived experience as part of international movements related to democratizing science to make research nimble, creative and relevant.

“As problems increase in complexity, they demand more creative solutions, highlighting the need for open and collaborative practices that involve non scientific practices that involve non-scientific actors such as citizens, companies and policy makers from a range of institutions and disciplinary backgrounds” (Beck et al., 2020).

1. Introducing New Opportunities and Players in Peer Research

We pivot now from developing peer research methods and theory to moving the science of engagement into the hands of those interested in including real life experience, new research partners and methods in their research. This goes beyond what is considered real world data about health status and health delivery derived from health system records that is statistical in nature whereas real life experience refers to lived experience from a patient perspective that reflects their priorities for making a difference.

I had come to realize that it wasn’t enough to train peer researchers if researchers and innovators wanting to explore peer research were not familiar with the science and practices underlying this new patient and community research voice. As with Salutogenesis, the new patient perspective of health systems and patient standpoint theory, the call of this chapter is for people to explore, experiment and begin to share ideas about how to capitalize on the expertise and resilience of citizens and communities. The potential for an emancipatory, action based peer research may be new to academic research but there are many international movements looking to democratize and reform science: Citizen Science; Ashoka; Eupatie; Design thinking and Experience Design; Community Based Health Research; Open Innovation in Science and Responsible Research and Innovation. All of these movements declare the need to bring unheard voices to research while taking science to communities. Section one and two affirm that peer research leads to impactful and actionable research. It also demonstrates that community based research gains influence when community members advocate for and conduct peer research as part of research projects. However, I have also seen that skilled peer researchers become research assistants employed to collect research for POR using qualitative interviews, and quantitative surveys. While this is useful, it negates the potential to capture what happens from a patient perspective and priority. It restricts the ability to explain patient and citizen concerns and it also removes the ability to test new roles and relationships for citizens. Perhaps most importantly, it diminishes the innovative/entrepreneurial spirit of peer research in that it forces the patient researcher into familiar research roles as assistants.

I offer the following diagram as a heuristic for readers to understand the three main paradigms that have the potential to trigger social change and to bridge between academic research and innovation .

The outer ring represents the forces that are driving changes in the research that informs health and social care. This is done to identify existing and emerging communities of research practice that have similar goals but different research cultures and practices.

Citizen science and open access

Health research has been criticized for its inability to complete funded studies, inform health care transformation or engage end users effectively in innovation. Citizen Science was an early example of academic and policy movements devoted to re imagining academic research as being open, flexible, nimble and relevant to society and communities. Along with other open or democratic research movements, they are including new partners in research teams.

The resurgence of citizen science resulted from computer and communication advances as part of the third industrial revolution. This opened new research options such as online communication platforms and ways to share analysis through distributed computer networks that made it possible to recruit widely and engage more effectively. At the same time the move to open access to research became a quest to make published research accessible to wider audiences. These forces combined to democratize academic research such as opening inclusion criteria for health research and the inclusion of patients as advisors on health research teams.

Citizen scientists work with academics conducting academic research because of their personal and local knowledge and access to data. They are trained and supervised by academic researchers and are acknowledged for their contributions. There has been much study of ethical issues, largely because the social contracts for engagement are often ill defined. Chapter 3, the social contract for engagement could be used effectively to clarify roles and expectations.

Peer research as defined in this manuscript is a citizen science but it takes an additional step to train citizens to use engagement strategies and research methods to engage groups of citizens in research by, with, and from a citizen perspective. They work as colleagues and are paid to co design, recruit and conduct research as part of academic research teams. In order to consolidate this difference, the peer research methods provided in this chapter are offered as a consolidated method to clarify how peer research is different from patient experience done by health professionals and disciplines. (Franzoni, Poetz & Sauermann, 2022)

The definition of ‘peer’ for Citizen Science in health research relates to health conditions, health systems and increasingly it includes peers that share systemic discrimination. It is expected that the current, end user definition of peer related to technology and innovation may also play a larger role in academic research and citizen science.

Physical, biological and digital technologies

This relates to the fourth industrial revolution that is moving more quickly than anticipated due to the pandemic that broke down our reliance on traditional ways of providing healthcare. All aspects of the diagram are impacted by this current escalation of technology that creates new platforms for innovation. Social enterprise and commercialization are combined here to focus on innovation.

The goals of technology innovation in health include: prevention of chronic conditions; extending productive life span; patient control and community based support realities Achieving these goals will accelerate change within systems and create new health delivery options. Already we see provinces including national digital health options to backstop the lack of physicians, especially in rural areas . This harkens to the earlier trials in the 1990s of using internet connections to access specialists in rural and remote areas through telehealth.

Innovation professionals are trained in design and design thinking courses. These courses are increasingly being taught to academic researchers looking to translate their research into profitable tools and implementation strategies.

End users of innovation are most often seen as customers, although this is conflicted when the innovation becomes adopted by health systems that become payors or customers. When design thinking became the standard for innovation, end users were invited to suggest products that would appeal to customers. This gave them stakeholder status. Over time, innovation professionals, engineers and marketing specialists found ways to include end users in the various stages from empathy through to fast fail commercialization. End users in this chapter include peer researchers, capable of translating academic research peer findings into design thinking. They become innovation specialists in recruiting and engaging end users in all aspects of design and innovation including empathy and engagement, defining problems, ideation, prototyping and commercialization. As part of social innovation or social change in health organizations, peer researchers could be involved in implementation strategies that involve patients as end users.

The last section of this chapter is devoted to advances in physical, biological and digital technologies as a peer research bridge to social enterprise and commercialization. Peer researchers become brokers recruiting patients and bringing engagement strategies and skills to design thinking as engagement professionals.

The definition of peer in this scenario relates to the target market and use of the product or service. In most cases the definition of peer is similar to the definition of peer in academic health research in that the end user is defined by condition, age, health system or service and includes whether the patient, family or health system becomes the customer.

JEDI (justice in healthcare systems through equity, diversity and inclusion).

The final segment of the heuristic opens the door to emancipatory research to challenge existing systemic discrimination in health and health research. I have combined community research and social innovation and social enterprise. such as the changemaking networks of Ashoka and Social Innovation Networks, Institutes and Centers. These challenge the hierarchies of entrenched systems by supporting communities and not for profits to find solutions to real life problems. All are open to creating alliances with citizens, business, policy, civil society and the not for profit sector. They see citizens and communities as key stakeholders in the alliances they form and the community social enterprises they foster. For example, providing information and space as collaboratories, distributing low cost healthcare devices such as eyeglasses, supporting action and peer support groups for marginalized healthcare populationsons, online primary care, specializations, home care and chronic care networks.

Community based health research is a staple in community health science departments in medical schools and they have fostered health promotion and prevention research at the local level. Communities are included in co design and community leaders often work as brokers that bridge between community health research and the community. Community members can also work as citizen scientists, assisting in conducting research and keeping communities informed of findings and possible impact. The strength of community health research is the ability to adapt culturally appropriate research methods from indigenous and communities and countries without western health care systems.

Everyone in Ashoka is considered a changemaker from primary, secondary and post secondary education, patients, community members, local government, business associations and governments. Ashoka Fellows and Institutions are supported by Ashoka staff that act as brokers bringing potential partners to the table to solve problems and implement solutions. Students learn first hand about science by working in community science projects developed by communities. This is an example of the power of community engagement in science that also activates young learners to the importance of science and changemaking. If Ashoka became a pillar of science curriculum at the elementary and secondary level, more university students would be interested and capable of STEM training and would be able to join university research projects.

The role of the peer in this community section is determined by community affiliation and population health interests. Their roles as changemakers harken back to the power of participatory action research and reinforces the ability to build capacity by taking part in community and population research. The role of peer researchers here is likely best understood within the PaCER training of indigenous community members who have been able to adapt peer research to honor indigenous ways of knowing and indigenous science. As other culture groups complete peer research training, either through a university program or through developing models based on the science of engagement, the potential of JEDI increases.

2. Consolidating an Emancipatory Science of Engagement

After more than 50 years conducting research with citizens, communities, institutions, systems and governments, I recognized that my quest had been to unravel how the systems that are intended to support people, end up creating barriers to wellness and personal agency. This chapter focuses on how to emancipate people from restrictive practices.

Philosophy

It will take serious commitment from all parties to champion peer research as salutogenic, pragmatic and solution focused to facilitate innovation as part of transforming healthcare and funding agencies.

• Researchers willing to experiment with new ways to use technologies as part of social innovation, enterprise and commercialization of health.
• System champions and transformation networks willing to use technology to build or reframe new systems and support new roles, partners, delivery and funding approaches.
• 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 any activities.
• A community focused culture of health that challenges existing and potential systemic discrimination by seeking justice for patients and support equity, diversity and inclusion in health research and innovation.
• Trained patients as peer researchers ready to become part of transformation networks and research projects.
• Action teaching methods where patients and community members co-design and conduct peer research using participatory, narrative and inductive research approaches.

Peer Research and wicked problems

Peer research moves from advising and collecting data for health teams, to conducting research that is specifically designed to engage patients and communities in relevant and robust action research. It introduces a new patient produced research voice that builds research equity in research. We have found that peer research is local, focused and action oriented. This is particularly important when research involves wicked problems with opportunities for testing solutions. Peer research as represented in this book embodies local research as defined by issues that impact a narrow research focus based on condition, age, system and service. Peer research activates engagement of participants who experience and have expertise related to the focus of the research. This is done by peer researchers who are trained to co- design research that identifies patient concerns related to local problems and the politics and underlying ways of knowing and understanding these problems. They then conduct iterative research to ensure focus and engage throughout the research process to ensure that the research includes diverse experience and values in order to increase creativity, relevance and uptake of findings.

There are numerous movements that recognize community inclusion as an antidote to understanding wicked systemic problems. Community health is already established as being a citizen centered alternative for underserved populations and this is supported by Community based health research which supports communities to identify concerns and participate in the research to understand and resolve their health concerns. However, the foundation remains the delivery of quality, system approved care and research tends to be promoted by health researchers.

In education, we have conflicting pressures to return to rote learning of facts but are rethinking how students learn to be citizens through community education. One of the ideas that capture this is STEM where students need to learn more about science through the study of science basics and theory. The alternative would be to leave the teaching of facts and theory to universities where science is actually being practiced and to encourage school curricula that reflect Ashoka school programs that engage students in community research that is meaningful to them and their communities. This would capitalize on natural learning and understanding the principles of science as tools for living before moving to abstract theory and concrete practices.

Community policing which challenges the culture of power and military control that has been used to handle civil unrest. Community policing promotes community contacts and understanding, providing support for issues important for health and productive communities.

Peer Research methods

The goal of Sections 1 and 2 was to provide many options for academic qualitative peer research. As we move into new territory, it seems important to propose a consolidated peer methodology based on the experience with three major studies of methodology (as in Chapter 1) and over 50 peer research projects with founders of new social movements, seniors and patients in acute care, chronic care, public health and health promotion.

We begin this by suggesting peer research is designed to involve patient co-researchers throughout all phases of research and innovation. It combines and creates research methods that are intended to ensure the inclusion of justice, equity, diversity and inclusion (JEDI) principles and emancipatory social science and theory.

We begin with an overview of three research traditions that have been most effective in supporting action outcomes:

• Participatory action research principles
• Narrative data ensures real life data for real life solutions
• Classical grounded theory explains concerns of populations to find solutions

The careful combination of these three traditions produces a robust action based method for innovation. Glaser encouraged experimentation with classical grounded theory methods (Holton & Walsh, 2017), and Figure 11.2 is a result of our experimentation over 25 years. I offer the same challenge to readers - to experiment with the following model.

This combination of three distinct research traditions produced three distinct qualities of peer research - Engage, Focus and Act. This reinforces the unique contribution to health research that comes when engagement strategies (SET, COLLECT, REFLECT) take center stage. While it took significant secondary analysis of peer research studies, it soon became clear that the PAR, Narrative and Grounded theory combination was theoretically sound for engagement research. PAR was the foundation for the extended study of engagement research. Grounded theory was the method underlying the study of co research and migrated into engagement research because of its iterative foundations which were essential if patients were to be involved throughout the peer research. Narrative emerged as the essential element for engagement at the end of the first case study and grew in importance throughout the remaining stages of incubating a peer research methodology.

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 is able to capture cultural nuance and instill creativity; grounded theory using narrative foundations is an innovation that opens grounded theory theory to in vivo coding of real life experience while providing a bridge to comparative analysis with more theoretically oriented research approaches; when participatory values and grounded theory standards are combined, peer research celebrates the opportunity to uses smaller samples to achieve quality and relevance levels not often seen in deductive research. Engagement research is a unique methodology because it responds to all three traditions to offer a new voice to health research.

The peer methodology focuses on patient experience of what happened or is happening to explain why and how it happened in order 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 in order to find simple and direct recommendations for action.

While it is possible to teach patients general qualitative research, these 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 the outcomes of qualitative research done in a participatory way, tended to become expansive and difficult to translate into clear action. Thematic analysis in studies where there are small sample sizes are difficult to justify especially when publication is the goal. While it is easier to be noticed using a familiar method, it is also necessary to create a peer based method that is emancipatory. Patient research represents patient capacity to be part of social change. It is intended to be useful for patients who can see clearly the value of research that could make a difference. Complex findings, while often in publications, are not easily translated in social media. Patient research, in an era of rapid technology transformation, needs to be clear and action oriented if it is to influence innovation and become part of the future. Interestingly, grounded theory is a popular methodology for health administrators because it is focused and action oriented. In the end social change relies on public and policy support and peer research is poised to provide clear, pragmatic, focused and action oriented research.

In summary, participatory action research provides principles that ensure research equity, Narrative provides the data platform and Grounded theory research provides the focus and iterative analysis methods to ensure rigor. 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 short summary of the current understanding of each research tradition as it contributes to making a difference. In introducing each 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 part of an emancipatory science of engagement. The most obvious is the right to participate so that 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 as a way to conduct and honor research.

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 11.3 is a common diagram describing the interaction between participation, action and research that resonates with peer research principles.

These principles are now expanded to include the participatory action research model adopted in Grey Matters (2010) that align with JEDI principals.

• Equity The research process allows each participant to gain new skills and perspectives that enhance their own abilities. 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 and honors 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 end result of any participatory project. Action is legitimized 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. Co-research participants provide and share storied data and take part in analyzing their own and collective stories. During a REFLECT process, they are also involved in reviewing the findings. The roles peer researchers play depend on the project, how it is related to health research teams and streams of research they are part of.

Participation is also the common denominator in all of the new social organizations devoted to open and collaborative research. While all speak to the need to include patients as stakeholders or collaborators, and citizen science goes so far as to describe ways to include citizens in research, the uptake has generally been cautious. This has been linked to the lack of strategies of 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 rigor of inductive analysis focused on action.

Narrative data systems as real life data

The narrative methods were first identified in the new social movements research (Chapters 2 and 3) and were expanded by seniors who created storytelling focus groups and story templates. During the incubation time 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. Narrative provides the data science 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.

Citizen scientists use crowdsourcing and social media adapted to increase the analytic potential of crowdsourced stories. In 2013, Alberta was overwhelmed with unprecedented flooding, and 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 could also be used to analyze the stories told, the storytellers and the resources they used and supported the need for experience data as part of climate change.

The structured story template discussed in the engagement chapters. Peer researchers facilitate many levels of analysis using structured online social media research formats. This is included in the PaCER education program, which teaches online engagement research.

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 rigor and the relevance of real life experience.

Classical grounded analysis

Classical grounded theory shares key action based features with participatory action research and narrative provides a new data science based on real life experience that has proved ideal for constant comparison and analysis. 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 next cycle.

The use of grounded theory analysis opens avenues for collaboration with qualitative researchers and patient oriented researchers (POR) who may use both quantitative and qualitative data. Most science and social sciences, health and culture studies programs (emancipatory and critical theory scientists) have research traditions that include grounded theory, narrative and participatory features. Within the collaborative networks of OIS, these shared methods will provide bridges between citizens and scientists on an equal footing. OIS teams or projects could invest in training citizens in peer research or in encouraging groups of patients interested in science to form patient-led studies as part of OIS projects.

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 in order to find solutions using consistent cycles of collection, analysis, reflection and planning.

Readers who are not familiar with qualitative research might be interested in a current compendium of research methods from business and management done by Henderson (2016. It provides a new insight into qualitative research as adaptable and able to respond to difficult problems and innovative ideas.

The role of theory in developing new research methods

The following theories offer new perspectives to peer research and innovation:

1. Patient perspective of health systems provides an ecological tool to inform all phases of peer research in order to locate the main concern in the services involved. One of the difficulties encountered in peer research to date is the over generalization of “the health system”. Without a way to clearly define which levels of the health system are of concern, the overarching rheortic seems to lead to confusion or lack focus. This is where new theory adds a new dimension to the SET co- design process. The sample chart of a health system in Chapter 9 can be adapted to include the scope of health services and systems for any target group of patients. This theory can also be used when looking for alternative solutions to existing problems
2. Patient standpoint theory is a powerful visual tool at all stages of co design and analysis, particularly when focused on understanding potential solutions. Not only does it help identify the psychological space of four main patient experiences within social institutions and systems, it also identifies potential goals and transition strategies for change. As outlined in chapter 10, it also informs JEDI principles that are impacted in the theory.

Patient standpoint theory is an ideal tool to use when analyzing stories according to properties using language that identifies identity and agency. The story lines can be easily plotted on the standpoint map by participant co-researcher and peer researchers. When done at the end of a focus group with common stories, groups engage in analysis of the impact of the story and also can look at directions for change.

3. Peer research for Innovation

We begin this topic with the implications for patients of the fourth industrial technology paradigm. We then propose an integrated peer research methodology that can act as a bridge between academic research and experience design. The new theories of this section, 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 in concert to respond to our changing future.

Technology informed healthcare, opens doors for innovation

The following news reports are included to provide a snapshot of the transformation of health care as advances in technology impact our understanding of health and what it means to be human. Patients have much to gain and much to lose depending on the willingness to include them as stakeholders at all stages of digital transformation. It may appear to challenge the current health system, but it is an attempt to set the stage for the next iteration of peer research which seems to focus on the need to add INNOVATE to the peer research SET, COLLECT, REFLECT engagement strategy

• Increasing community-based and patient focused care: Health and healthcare delivery will be present in its own ecosystem, with a greater input of people or patients themselves, often referred to as the consumerization of healthcare will be delivered as a seamless continuum of care, away from the clinic-centered 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 packaged goods sectors are looking to address consumer and patient needs (UBS, 2020).
• Improving patient experience as part of improving health outcomes: This is the first industrial revolution that is about who we are and what we need to do to make life better for everyone. This is also the first industrial epoch relating directly to medical advances and self care (Schwab & Davis, 2018).
• A greater focus on patient control and management: It’s not just telling them what to do (most people who smoke know that it’s bad for their health), it’s truly engaging them, providing them with smart technology so they can closely monitor themselves. They can have devices that will constantly measure the likes of their heart rate, blood pressure, breathing, weight or activity levels. While there is much rhetoric about patient control, most of the attention is still focused on the doctor-patient relationship. The exception is patient ownership of records, and how this creates conflicted ownership within the healthcare system (Miller, 2016).
• 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 -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 diagnosis and treatment model of care. 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 are these information and regulating functions 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 through self regulating systems? (Grinin, Grinin & Korotayev, 2017).

To end this section, 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.

Design Thinking and innovation

This section draws on the work of Valentine et al. (2017) 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 i. 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 qualitative research and Innovation represented by Design Thinking. The analysis of each approach considers strategies, focus, data and goals. This figure is provided to consider existing research approaches along with peer research 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 but all aim to to solve common real life problems of communities and citizens. This rich diversity of approaches promises creativity in achieving new research partnerships and methods. Because peer research 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 classical 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 the science of engagement 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 be the most widely accepted summary of design thinking that reflects the emancipatory goals of peer research

● 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.

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). They suggest that “publicly funded healthcare systems may reconcile the tension between its roles in the delivery of publicly accountable healthcare services, innovation development, and commercialization” (p. 69).

Patients will be the end users of future healthcare and 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 current health 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 continue to support design thinking prototyping and implementation or commercialization after completing academic research projects.

Design thinking innovation and the science of engagement

With the above foundation, this section pivots to design thinking as an “interdisciplinary collaboration that uses designers’ creativity and user centered 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). Design thinking is characterized by a consistent set of steps that begin with co-design 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.

The digital economy of the fourth industrial revolution focuses on innovation, especially in healthcare. 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 considered to be holistic problem solvers dealing with the ecosystem of the brand or issue being investigated. It focuses on engagement of people and, therefore, employs a more narrative style, using all senses and 3- or even 4-dimensional data.

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 brings new focus to experience design. Experience designers appear to have a new role in the upcoming transformation of health in which health and value is created on a local level by addressing broader societal issues with all the stakeholders involved (Kleinsmann, Valkenburg & Sluijs, 2017). 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). 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.

Design thinking and innovation are being adopted by science movements who are looking to democratize science to make it relevant and economically sustainable as an antidote to the structures of the industrial revolution that increasingly struggle under the pressure of political structures and funding, aging health facilities, and programs. Nevertheless, there are signs that new technologies are creeping into the existing structures and new health systems are percolating beneath the surface.

The new medical science platforms such as pragmatic clinical trials and precision medicine, Gates' global health programs in developing countries and EUPATI, a political restructuring of health technology in Europe, are examples of democratic health innovations. 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.

Experience design engages citizens and communities as part of the process but it has yet to explore training citizens to work with end users, whereas we focus on patients trained to recruit and engage patients and communities using JEDI standards. In light of 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 research and innovation.

Peer methods meet design thinking

This section explores the hybrid peer research approach that uses peer research as a bridge between academic research and design thinking. New patient research roles are introduced that extend current capacity to bring a patient perspective of what needs to change and how to make it happen.

Figure 3.11.6 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 the science of engagement relates to social change.

The stages of experience design are :

1. Engage and establish empathy with community that aligns with SET
2. Define the problems that also aligns with SET
3. Ideate options combines COLLECT and REFLECT of peer research
4. Test prototypes for feasibility and marketability, and
5. Test and scale commercialization

These options are proposed to open discussion with collaborative networks who are interested in collaborative, cross sectional research. PaCER and peer research has demonstrated that patients are a reliable source of innovation. PaCER 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 in order to test for significant effects of hypothetical situations, inductive research reflects the cycles of explaining problems to find solutions, and cycles of prototyping and field testing as part of experience design. In looking at the results of PaCER studies to date, peer research, like experience design, is capable of using abductive 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 which 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 11.8 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.

This can now be translated into a functional hybrid of peer research and design thinking. The first line tracks the design thinking processes. The second aligns peer research research with design thinking. The third line consolidates the goal of both, and the fourth line identifies empathy and engagement, which is the first step in design thinking but is essential throughout peer research.

This hybrid brings the academic credibility, JEDI focus, publication potential of academic research to design thinking innovation and commercialization into this alignment. An academic research team could use the 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 evidence based aspects of design thinking processes. This would be done to enhance the engagement and empathy stage, in order 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 and the science of engagement, and also essential to design thinking. Both peer research and design thinking 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. Participatory action research principles of co-research reinforce not only empathy, but the equity of peers within the research process. In a future where patient identity and control will be transformed through technologies that are preventive, augmentative and promote wellness and longevity, JEDI principles of equity, diversity and inclusion will become possible.

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 their interest in being involved along with the completed story templates. The story could also be told by video which allows the peer research team to create templates that could then be shared with the story tellers.

Engagement is considered part of the SET stage in science of engagement 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 topic (for ethics) and the eventual solutions for change.

Finally, the basic philosophy of this science of engagement is framed by cognitive empathy that refers to our ability to identify and understand other people’s experience 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 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 health systems and relationships. 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. Citizens are thus more able to regain confidence and agency to become resilient and competent in their health and healthcare.

Define problems

In design thinking, problems are identified through connecting with a subset of the target population. Problems are identified and discussed by the design team to create statements of the problem from a citizen perspective.

This is where peer research differs. The last stage of SET is the convening of a co-design team of patient consultants who come together to prioritize the problems previously identified according to their importance to patients and the potential impact of research.

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 the research perspective. 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 gray 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 framework analysis

The problems chosen are written from a citizen 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.

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 uncovering solutions that resolve or reframe the concerns. This occurs during the inductive process of COLLECT, which includes narrative 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 in order 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 in order 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 solve the problems of importance to patients.

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

• Cognitive actions related to finding 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 space and when the nature of the situations are explained, it is possible to set 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 problems
• 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 are powerful new engagement tools that add to the science of engagement 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 the engagement strategies. This work could bring informed and innovative patient solutions to design thinking.

Developing rapid prototyping and 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. 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. The resultant app was developed by an innovation company, but failed to attract commercial partners.

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 researcher 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.

Next steps

The approach 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.

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.

The publication of patient informed change in academic journals and in public and social media demonstrate user inclusion in real life decisions and solutions. The following suggestions identify where science of engagement 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.

Design thinking is customer- and user-centered, 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 rigor 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 responsible research and innovation and OIS partnerships, citizen science research and changemaking projects.

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 responsible research and innovation models.

It is speculative, but in innovation the number one rule is to think BIG.

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:

1. What would it take to create interest in the science of engagement in health research and innovation in your situation?
2. Is 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?

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 designed 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. Being described as “dying inwardly”, moral injury is “the damage done to one’s conscience or moral compass when that person perpetrates, witnesses, or fails to prevent acts that transgress one’s own moral beliefs, values, or ethical codes of conduct” (Syracuse University, n.d.). 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 case book 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, centered 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 wellbeing 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 supports from the military members in the crisis and change quadrant. Rankin (2020) came to the same conclusion as me when creating the Whole Health Medicine Institute, my example of a community inclusion system.

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 wellbeing 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 reconceptualizes 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 for both 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-judgemental 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 wellbeing.

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 (Marlett, 2020). 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 - I 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, 2017). 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, will be pushed into the crisis and change quadrant. 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 judgement. 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

References

Allen, W. (2016, February 19). Participatory action research provides for multiple benefits. Learning for Sustainability. https://learningforsustainability.net/post/par/

Bailey, M. (2020, February 04). Beyond burnout: Docs decry 'moral injury' from financial pressures of healthcare. KHN. https://khn.org/news/beyond-burnout-docs-decry-moral-injury-from-financial-pressures-of-health-care

Beck, S., Bergenholtz, C., Bogers, M., Brasseur, T.M., Conradsen, M.L., Di Marco, D., Distel, A.P., Dobusch, L., Dörler, D., Effert, A., Fecher, B., Filiou, D., Frederiksen, L., Gillier, T., Grimpe, C., Gruber, M., Haeussler, C., Heigl, F., Hoisl, K., Hyslop, K., Kokshagina, O., LaFlamme, M., Lawson, C., Lifshitz-Assaf, H., Lukas, W., Nordberg, M., Norn, M.T., Poetz, M., Ponti, M., Pruschak, G., Priego, L.P., Radziwon, A., Rafner, J., Romanova, G., Ruser, A., Sauermann, H., Shah, S.K., Sherson, J.F., Suess-Reyes, J., Tucci, C.L., Tuertscher, P., Vedel, J.B., Velden, T., Verganti, R., Wareham, J., Wiggins, A. & Xu, S.M. (2022). The open innovation in science research field: A collaborative conceptualisation approach. Industry and Innovation, 29(2), 136-185. DOI: 10.1080/13662716.2020.1792274

Brown T. (2008). Design thinking. Harvard business review, 86(6), 84–141. https://pubmed.ncbi.nlm.nih.gov/18605031/

Ćwiklicki, M., Klich, J., & Chen, J. (2020). The adaptiveness of the healthcare system to the fourth industrial revolution: A preliminary analysis. Futures, 122, 102602. https://doi.org/10.1016/j.futures.2020.102602

Franzoni, C., Poetz, M., & Sauermann, H. (2021). Crowds, citizens, and science: A multi-dimensional Framework and agenda for future research. Industry and Innovation, 29(2), 251–284. https://doi.org/10.1080/13662716.2021.1976627

Grinin, L., Grinin, A., & Korotayev, A. (2017). The manbric-technologies in the forthcoming Technological Revolution. Industry 4.0, 243–261. https://doi.org/10.1007/978-3-319-49604-7_13

Henderson, S. (2016). Editorial. International Journal of Sales, Research and Marketing, 4(9), 2-3.

Holton, J. A., & Walsh, I. (2017). Classic grounded theory: Applications with qualitative and quantitative data. SAGE.

Kay, A. (2022). This is going to hurt: Secret diaries of a junior doctor. Picador.

Kleinsmann, M., Valkenburg, R. & Sluijs, J. (2017). Capturing the value of design thinking in different innovation practices. International Journal of Design, 11(2), 25-40. http://www.ijdesign.org/index.php/IJDesign/article/viewFile/2771/778

McCarron, T.L., Noseworthy, T., Moffat, K., Wilkinson, G., Zelinsky, S., White, D., Hassay, D. Lorenzetti, D.L., Marlett, N.J. (2020). A co-designed framework to support and sustain patient and family engagement in health-care decision making. Health Expectations 23(4) 825-836. https://doi.org/10.1111/hex.13054

Miller, N. (2016, October 26). Could your child live to be 150 years old? The Telegraph. https://www.telegraph.co.uk/wellbeing/future-health/welcome-to-the-150-club

Overbeeke, K., & Hummels, C. (n.d.). Industrial design. The interaction design foundation. https://www.interaction-design.org/literature/book/the-encyclopedia-of-human-computer-interaction-2nd-ed/industrial-design

Saunders, M., Lewis, P., Thornhill, A., & Bristow, A. (2012). Research methods for business students. Pearson.

Sebastianski, M., Juzwishin, D., Wolfaardt, U., Faulkner, G., Osiowy, K., Fenwick, P. & Ruptash, T. (2015). Innovation and commercialization in public health care systems: A review of challenges and opportunities in Canada. Innovation and Entrepreneurship in Health, 2, 69-80. https://doi.org/10.2147/IEH.S60790

Schwab, K., & Davis, N. (2018). Shaping the future of the fourth industrial revolution: A guide to building a better world. Portfolio/Penguin.

UBS. (n.d.). Future reimagined: Consumerization of healthcare - what's in store? UBS Investment Bank. https://www.ubs.com/global/en/investment-bank/in-focus/covid-19/2020/consumerization-of-healthcare.html

Valentine, L., Kroll, T., Bruce, F., Lim, C., & Mountain, R. (2017). Design thinking for social innovation in health care. The Design Journal, 20(6), 755–774. https://doi.org/10.1080/14606925.2017.1372926

Williamson, C. (2010). Towards the emancipation of patients: Patients' experiences and the patient movement. The Policy Press.