3.0 Possibilities making a difference

We now shift to address possibilities and challenges of a new science of engagement in health research and innovation as part of the digital transformation of our aging healthcare systems in the midst of unprecedented threats to health. This section pivots from what has been accomplished to a presentation of new theory and methods that respond to the need to understand more about systemic health discrimination and a way to understand the unique interaction of identity and agency that informs healthcare standpoint theory where the need for acceptance by the system could be a matter of life and death.

When the training program was accepted as a professional certificate by the university, It quickly became clear that if PaCER was to spread, we had to disseminate the science of engagement, and the peer research methods that resulted from extensive investigation of research specifically designed for peer research. While our publication record is sound, it is not enough to publish results of individual research projects - we need to entice and engage new researchers, teams and graduate students to experiment with the concepts and methods included here. This proposed science specifically targets existing PAR, community based participatory research and new movements such as Citizen Science, Ashoka changemaking, Responsible Research and Innovation, Open Innovation in Science. It is of particular interest to those already using citizen science and open innovation in science principles to move their innovative ideas into innovation, social enterprise, commercialization and implementation.

A document called lessons learned from peer research as an social innovation in health research is included in the Resources at the end of 3.0.

Fourth industrial paradigm shift in health

I originally considered that this paradigm shift was about technology as an extension of mechanistic thinking that flourished during industrial revolutions. As I continue to study this current digital revolution, it becomes clear that the dynamic combinations and recombinations of technologies speak to the need for open innovation in science. It is certainly not about new forms of control, but about what it could mean to be human and who we can become as humans. It is about the roles, relationships and organizations that will change as technology evolves.

It is not the remit of the science of engagement to study technology per se. However, the MANBRIC rubric of technologies suggest how medical, additive, nano, biological, robotic, information and cognitive technologies might impact not only deficits and illness, but enhance our lives. The following links take you to two excellent discussions of the digital revolution if you are interested.

The following resources are presented here for those looking for more detailed information:

• HIMSS (Healthcare Information and Management Systems Society) is a member-based society committed to reforming the global health ecosystem through the power of information and technology.
• This second resource is typical of innovation in life sciences (health sciences) and demonstrates the parallel universe of healthcare outside of the typical innovation framework.

Technology advances are changing society as work, healthcare, education are redefined and our very social reality seems poised to be slipping into a metaverse reality that on Oct, 2022 was defined as ‘a virtual world in which people live, work, shop and interact with others -- all from the comfort of their couch in the physical world’. The ability to combine biological, physical and digital technologies seem particularly poised to transform healthcare as we know it. For example, primary care is migrating to multipurpose pharmacies using the scaling power of artificial intelligence diagnostics. Large delivery companies such as Amazon are investing in new diagnostics to receive, process and send medications and devices ( while being involved in localizing 3-D printing to reduce inventory and travel costs.

The following example of the Internet of things where digital devices such as robots, wearables and sensors are implanted or embedded in everyday products and activities. This is intended to increase responsive and personalized home care in general and in-home support for those living with disabilities and chronic and complex care. While proponents claim this is individualized and self regulating, you can also detect enormous ethical and privacy hurdles if patients are not included early in the development. The Internet of things has the power to become a contained loop where personal and environmental data send information to an AI driven resource that modifies medications and delivers them without processing through a health care provider.

This is just one of the predictions and advances related to managing and reducing the current acute and continuing care burden of chronic, lifestyle and stress related diseases, which currently make up the majority of healthcare costs. Patients are end users of technology that is intended to lessen the burden of illness or prolong productive life years and work life. To date, they have not been included in research and innovation, despite claims about increasing patient control through self-regulating technology and assistive devices and robots. Protocols and policy need to be created with patients, to ensure that patient control is part of all stages.

By 2018, the field of technical and biological technology in healthcare produced astounding advances in medical technologies. I take the liberty of including a report from the World Economic Forum on health and healthcare in the fourth industrial revolution.

In months of reading reports and articles and attending digital social media presentations, I found only two specific mentions of actual patient and community inclusion, although all documents point to personal control and community based service enterprises. A current example of cardiology points to the rapid technological advancement in stem cells, implants, robotics, 3D bioprinted heart tissue and artificial intelligence that will continue to alter current treatment options, and this is being repeated for other non-communicable diseases and stress related precision medicine options. The benefits seem to be many: cost containment, reduced systems costs, lower burden of disease for patients, and the potential for patients to be more engaged in their healthcare.

However, citizens could remain confined to being end users, patients and care providers. Concerns seem related to compliance instead of personal control, privacy, and patient values. There are a few detailed references to increasing patient control through self-regulating technology, assistive devices and robots. It is almost impossible to find research and policy about how this might happen and how it will be adopted, let alone the role of patients in all stages of research and innovation. If cost containment continues to be the driver of innovation, we could see the hard won advances in consumer or patient control over their personal health and healthcare eroded.

Patients today are more motivated, competent, and ready to move into new stakeholder roles. Patients and citizens are moving ahead to adopt new technologies on their own. We can see this in the response to open access to medical records. While electronic health records are still cumbersome and complex, new online supports allow patients to curate their own health records, to learn how to use their records to seek treatment, research, and peer support options around the world. While the overarching slogan of ‘changing who we are’ is couched in emancipatory language, it is clear that the patient voice is secondary at this early stage.

The landscape of open science and the democratization of health research

We now return to national and international research initiatives hoping to democratize research. The Responsible Research Innovation (RRI) and the Open Innovation in Science movements (OIS) are driven by international organizations of researchers and governmental funding bodies who are committed to including patients and users, professionals, businesses and government as partners to create more lean, creative and flexible research models. This democratization of science is intended to effectively and quickly respond to the rapid changes that are defining new health approaches and demands. Both of these accept citizen science as a way to include users and patients in research because as part of academic research grants and projects.

The following players are part of emancipatory patient movements and innovation/design movements and innovation professionals that began after the war to respond to the rapid commercial growth in new products. The foundations of design thinking was grounded in alliances with users who brought ideas for products and were involved in co-design and testing protocols for commercialization.

Emancipatory patient movements.

Emancipation theory began with Frierie’s conscientization theory and participatory action theory as part of critical education of the poor in South America. His theories of conscientisation continue to influence emancipatory research today. Emancipatory goals are also prominent in the digital revolution, which aims to reduce the burden of health and enable patients to flourish and claim new roles as stakeholders in their health and healthcare.

Willianson (2008) laid the foundation for a theory of patient emancipation within health systems. This, along with her subsequent articles and her current (2021) book, provide essential reading for anyone interested in patient engagement in healthcare. Her support and involvement in the early stages of patient involvement provide first hand insights into the evolution and setbacks of patient liberation. The patient emancipatory movement is distinct from feminist, civil rights and Indigenous studies, which were able to quickly recruit and train community members to advocate for change.

In particular, her ten principles of patient emancipation - respect, equity, access, information, safety, choice, shared decision making, support, representation and redress - provide the foundation for patients as radical agents in healthcare reform at the level of care, relationships, programs and policy. They focus on the aspirational role of patients and the expectations patients have of the care providers and the health system. Interestingly, JEDI principles that suggest the need for justice in the face of all forms of systemic discrimination through applying the principles of equity, diversity and inclusion and these resonate with the above emancipatory goals. JEDI principles have gained focus internationally as part of global healthcare reform and may motivate new impetus to the proposed new method of this last section about making a difference by including peer research.

Williamson claims expertise of patient groups based on their shared experience as part of their emancipatory approach. She also supports patient advocacy groups for their potential for discovering new knowledge by studying common concerns and relationships with professionals and dominant policies that cause concern and harm. The recent promotion of JEDI means professionals and administrators are more sensitive to patient concerns and systemic discrimination.

This last section tends to be radical, that is to say, to challenge existing assumptions by looking beneath accepted procedures and policies and the relationships they perpetuate. Radical challenge aims to increase the freedoms of those impacted by the power of the entrenched status quo of health systems. In research and innovation, emancipation makes sense because peer research claims an expertise that brings value and authority to a patient's perspective and thus to their research as respecting JEDI principles.

Peer research, where patients are trained to engage others in rigorous research processes, gains recognition by using a coherent action based narrative data system based in inductive reasoning and an engagement strategy. It is pragmatic, able to focus on common concerns and finding solutions ready to be tested. This focused approach is efficient, productive and pragmatic. The science of engagement supports radical and emancipatory action in health research and innovation.

Design thinking

The industrial revolution, after the Second World War, created a need for new products to fuel innovation and economic recovery. During this time, customers were encouraged to propose innovative products and they were able to work with designers and engineers to develop products for an eager market. Over time, the designers created innovation models and courses that attracted ‘innovators’ who employed design thinking, and as the process became professionalized, the roles of customers were formalized into group discussions and activities and their roles were reduced. Innovation professionals now define the landscape, and end users are called in for specific functions.

The creativity of designers supports the economic value of market research. There have been several cycles that bring more attention to real life experience and problem solving with end users, and the current design thinking process that is used in the next section, re-establishes an essential engagement for end users, in this case patients and family members.

As a tool of commercialization of ideas, products and services it has grown exponentially as a profession, the use of design thinking in product design and courses in design thinking. Increasingly countries are supporting innovation by providing funding. There are, in fact, two branches of design thinking - user experience, with the code UX, and experience design, with the code XD, where ‘X’ stands for ‘experience.’ The following is a short outline of the two, and although there has been some blending of the two approaches, the use of design thinking in this section leans more to experience design processes.

• User design (UX) focuses on digital or 2D products and processes to improve useability, accessibility and satisfaction. This user interface is developed ostensibly from the perspective of the user but, in reality, it is more aligned with programmers using digital tools in business and big data. The data systems have made major advances as part of online digital methods
• Experience design (XD) is 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, based on satisfaction, using all senses and 3- or even 4-dimensional data.

Chapter 11 introduces ways to combine experience design and academic research, but from the perspective of patients and seniors. They are the main targets of user design and should be key stakeholders throughout the design process to meet the need for new patient/user data systems for research and digital literacy for seniors as life expectancy increases. There are interesting calls to overcome poor user interface and to use deeper engagement strategies as reliance on technology increases.

The language of Co Research from Design Thinking

The following language is a summary of participation options when working with citizens, especially when the focus is commercialization or innovation. This list combines both citizen science and design thinking. This language is often used in health research articles that involve patients.

Co-design has been widely used in health quality improvement research. It is a creative practice that includes an ongoing collaboration. Patient advisors are considered co-designers because they participate in clinical, planning or policy making. McCarron et al.'s (2021) research article research on building a co-design team provides a first hand guide to this type of co-design collaboration with patient partners. The Strategic Clinical Networks, where patient advisors are included in development of priorities or research, are also engaged in co-design.

Co-production: Involve UK is a variant of co-production at the commercial level, where patients are involved in testing prototypes or implementation plans. It has developed a community service version of the typical commercial co-production, which focuses on the involvement of consumers during the prototype or production stage of products or services. According to Involve, “the term ‘co-production’ refers to a way of working where service providers and users work together to reach a collective outcome. The approach is value-driven and built on the principle that those who are affected by a service are best placed to help design it.” Co-production also includes the role of patients and communities in proposing novel ideas and, as such, it is aligned closely with social innovation projects and movements involving citizens, communities, business and government to change existing or inadequate organizations.

Co-research is a relatively new term in the space of engagement, and there is little written about it. It is most easily understood in the work of citizen science, which is the most familiar form of co-research that is guided by strong and enforced principles that ensure that citizens are recognized and given the ability to contribute. Peer research is a form of radical citizen science because patients are trained to conduct research with other patients, in collaboration with formal research teams. Because peer research aligns with citizen science, it also helps identify how peer research informs other levels currently being practiced in peer research.

The confluence between design thinking, citizen science and innovation has grown during the writing of this section, and a recent publication by Goi and Tan demonstrates the natural links between the research methodology of design thinking applied to social innovation using citizen science. The University of Dundee has also spearheaded an initiative to use design thinking to bring new innovation tools to healthcare.

Peer research, citizen science and patient engagement

Citizen science provides a foothold for including citizens as volunteer scientists, because citizens were interested, committed, and had access to data that would otherwise be difficult to access. The growth of citizen science now includes most research domains, but the control of the research topic, methods and publication of results still remains within the academic community. Nevertheless, citizen science has helped motivate new models, such as maker spaces, where citizens and people from many disciplines come together to solve problems and create solutions for the marketplace. Higgins, 2019 discusses the importance of Citizen Science in Health and Biomedical science.P atient engaged research, as seen in Callard and Perego (2021) is an excellent example of peer led research in healthcare

Open innovation in science began with the challenges of academic research cultures and silos that focus on making journal articles accessible to citizens as part of open access. The most recent article (Beck et al, 2021) create the framework that makes it possible for citizen scientists and other key stakeholders to be part of academic research that is government funded.

In a review of literature on citizen involvement in community-based health research, Isreal, (1998) tracks the movement from positivist research to emancipatory research in health promotion and identifies methods that show promise for co research. However, apart from the work of the Wellesley Institute related to Peer research in community research, little attention was paid to training community members to conduct research. The exceptions, used throughout this book, included PaCER research, which trained patients to conduct research with patients and community members; Wellesley Centre at York University, which trained community members to recruit and co research with institute members; and the HIV training unit at the University of British Columbia, which trained HIV patients as community researchers. The British Columbia SPOR unit hosts a patient voices network to share experiences that relate to planning and health decisions with healthcare partners and health researchers, and has recently announced interest and preliminary explorations into a patient-initiated research assistance program.

The most advanced move to peer research and full research collaborations have emerged as part of Indigenous nationhood and the ability to form equitable relationships with Indigenous nations. In this regard, the UN declaration on Indigenous nationhood has created international alliances of Indigenous nations and academic units. In Canada, two-eyed thinking, as articulated by Jeffery, Kurtz and Jones and Kurtz (2021), and in other countries with strong indigenous traditions such as Australia, New Zealand, South Africa and the US, there have been dramatic shifts in a data system to recognize data and ownership of results through the lens of sovereignty. One project in particular depicts the results of over 20 years of collaboration to create a partnership based on two equal nations.

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

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

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

Theory supporting transition to innovation

The following theories and approaches have been refined from those in Section 2, which were adaptations to more traditional qualitative research. The chapters in Section 3 introduce and facilitate a more focused action research that addresses how systems are implicated in social concerns, and alternate views of systems that are important to acknowledge if patients are to be full partners in health reform. This allows research to include health options outside of the established systems when looking for solutions to current problems.

Patients and communities need to be able to consider how systems influence their identity and agency in relationship to their health in order to consider what needs to be changed to flourish and manage their healthcare. This leads to the final chapter that focuses on user experience design and interactive design options within design thinking that dominates most product and service innovation processes. It is a proposal to link the peer research of academic research solutions with design thinking processes that provide links to changemaking (Ashoka), social innovation and social enterprise within the domain of open innovation in science.

Emancipation and empowerment theory

We have seen the alignment of peer research goals and emancipation, that focus on recognizing the capacity of patient researchers to challenge systemic discrimination to achieve equality. Salutogenesis provided the foundation of theory related to the search for positive outcomes and this focus is expanded to include a patient perspective of health systems to recognize the existence of health options that are salutogenic, along with a standpoint theory that extends salutogenesis to include the influence of agency within healthcare.

Peer research provides a way for patients to be part of the digital revolution by bringing patient voices to the table. The current practice of emancipation is described by Tygel and Kirsch (2016) as the modern equivalent of emancipatory research in a time of technological change.

The most recent conceptualization of emancipatory theories in relationship to patients can be found in Gibson, Britten and Lynch(2012), which describes the complexity of distilling theory related to patients in public engagement initiatives in Great Britain. It appears to be the most comprehensive, for those interested in this social policy.

JEDI theory

The adoption of JEDI principles in Canadian academic institutions and many health authorities has been a conceptual leap into emancipatory science, systems reform and social innovation. The link between JEDI, the emancipatory theory of Paulo Freire and digital literacy is clearly outlined by Tygel and Kirsch (2016).

While adherence to JEDI principles is expected to improve existing systems, it will also promote the need for peer research bridges between health research and data systems that promote justice and change. New health services and products in the future will hopefully begin with a quest for justice in data systems. Emancipatory peer research is able to produce real life data from diverse and unheard populations for machine learning to reduce the digital divide. Without an understanding of the power of JEDI principles that guide peer research, the future will continue to marginalize the capacity of patients and prolong marginalizations. Before encountering this section, readers are encouraged to access the EDI toolkit This provides a guide to implementing JEDI in health systems.

Systems theory

Systems theory is the study of the impact of systems on patient identity and agency as part of their experience of professional expectations and relationships, policies, programs and resources. Systems theory creates space for topics for peer research that are identified by patients, citizens and communities. This includes the impact of the official systems that are used by patients, along with related services and systems of health and wellbeing. Systems related to the topic research would be created through a co-design process involving patients, clinical and community values and resources.

For example, when looking at ongoing support for young adults with inflammatory bowel disease (IBD) and their relationship to food, the system from a patient perspective might include the IBD specialist, the clinic nutritionist, the primary care network diet specialist, the naturopath and a holistic nutritionist, a store specializing in special diets, and friends who are living with IBD who are available through personal videos, blogs and online communities

New Theory of patient’s perspective of health systems

Chapter 9 introduces a theory based tool to engage patients, programs and relationships in constructing a health system specific to particular experience and needs. This is important because what we call the health system confuses and threatens citizens in its complexity, which then engenders the impression that it is all powerful and cannot be changed.

The matrix includes levels, from medical science to mainstreet support, in four elements: medical system, personal system, healthcare focus, and technology. The tool creates a visual representation for patients, programs, care providers, navigators, administrators and planners. This assists in identifing gaps, areas of concern, community and commercial options when conducting co-design consultations. It also focuses attention on the level and type of support, care and intervention that relate to the main concern of the study. This is an attempt to concretize the sources of systemic discrimination so that they can be analyzed more clearly.

Social construction theory and discourse analysis

Meaning and memory arise from ongoing conversations, at all levels of society, that enable people and communities to develop a sense of identity. If we are to study roles and relationships as a way to understand systems, we need to have a way to study interactions.

Discourse analysis is just that - the analysis of language in all its forms, including speech of professionals, documents, protocols, research papers, procedural manuals, and increasingly, social media. The language and how it is used helps us understand how we make sense of the world. Systems themselves create a series of guidelines that are written as policy and procedure. In effect, these proclamations are the storylines identifying what is expected, how service and support will be delivered and paid for, and how service will be evaluated. From this, we can deduce the formal, systems approved roles of patients and professionals.

New patient standpoint theory

Chapter 10, A patient standpoint theory is necessary because of the complexity of health systems. It provides a step twoard making a difference because it identifies current status or standpoint and the goal for change. This standpoint employs the salutogenic bipolar axes related to patient identity and adds a vertical axis representing agency. It deviates from the two dimensional feminist standpoint theory to create a four dimensional grid that guides co-design, analysis and prototypes of solutions through four psychological social environments and four transitions.

The final chapter,11, introduces innovative linkages and synergies between peer research and design thinking that links efforts toward health implementation and innovation. It deals with the context of change, the players and an adapted design process that reinforces the essential role of patients in future citizen science, open innovation in science and social enterprise.

Summary

We have hopefully laid the foundation and expectations for this next phase of transformation as part of a science of engagement in health care with a focus on innovation. During the first reviews of this new content, we found it helpful to read this section with colleagues and patients that are part of your research. It will hopefully be disruptive but intriguing and creative, while motivating experimentation to build trust and contemplate radical social change. Peer research, like social innovation projects, needs to form alliances with experts in systems, business and governmental funding and support that are simple, practical and meaningful. It also needs to build capacity by focusing on assets, skills and expertise and, finally, it needs to remain natural and narrative to be able to include non-traditional learners and researchers.

You might find the questions and examples at the end of each chapter useful as you encounter a focus on systems as seen by patients and their health communities, and how the psychological spaces of healthcare impact patient identity and agency of patients.

References

Beck, S., LaFlamme, M., Bergenholtz, C., Bogers, M., Brasseur, T.-M., Conradsen, M.-L., Crowston, K., Di Marco, D., Effert, A., Filiou, D., Frederiksen, L., Gillier, T., Gruber, M., Haeussler, C., Hoisl, K., Kokshagina, O., Norn, M.-T., Poetz, M., Pruschak, G., … Xu, S. M. (2021). Examining open innovation in science (OIS): What open innovation can and cannot offer the science of science. Innovation, 1–15. https://doi.org/10.1080/14479338.2021.1999248

Callard, F., & Perego, E. (2021). How and why patients made long covid. Social Science & Medicine, 268, 113426. https://doi.org/10.1016/j.socscimed.2020.113426

Gibson, A., Britten, N., & Lynch, J. (2012). Theoretical directions for an emancipatory concept of patient and public involvement. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 16(5), 531–547. https://doi.org/10.1177/1363459312438563

Isreal, B, Schulz, A., Parker, B, (1998) . Review of Community -Based Research: Assessing Partnership Approaches to improve Public Health. Annual Review of Public Health 19:1, 173-202l https://www.annualreviews.org/doi/full/10.1146/annurev.publhealth.19.1.173?url_ver=Z39.88-20

Jeffery, T., Kurtz, D. L. M., & Jones, C. A. (2021). Two-Eyed Seeing: Current approaches, and discussion of medical applications A review of which Indigenous health care themes are present in Western medical literature. BC Medical Journal, 63(8), 321–325. https://bcmj.org/articles/two-eyed-seeing-current-approaches-and-discussion-medical-applications

Stilger, B. (2014, September 24). New stories summit. New stories. https://newstories.org/new-stories-summit/

Tygel, A. F., & Kirsch, R. (2016). Contributions of Paulo Freire for a critical data literacy: A popular education approach. The Journal of Community Informatics, 12(3). https://doi.org/10.15353/joci.v12i3.3279

Wiggins, A., & Wilbanks, J. (2019) The Rise of Citizen Science in Health and Biomedical Research, The American Journal of Bioethics, 19:8, 3-14, DOI: 10.1080/15265161.2019.1619859

Williamson, C. (2008). The Patient Movement as an emancipation movement. Health Expectations, 11(2), 102–112. https://doi.org/10.1111/j.1369-7625.2007.00475.x

Resources

Lessons learned to date

These lessons inform the next steps in linking academic science movements to democratize science by including patients in new social economies such as co-operatives and user owned business, social innovation and social enterprise. This was developed as an overview of PaCER for a presentation to health researchers in the UK.

Broad Impact of peer research

While publications, citations, research reports and presentations are fundamental for academic recognition, here we address the impact of graduates and examples of how researchers have used peer research to create new networks through research done by patients.

We begin with the impact of graduates of the PaCER program, for they are new influencers of change. They become leaders in patient engagement because they have moved from telling their personal story to using their story to engage others to create new patient research voices. They have specific skills and an emancipatory approach that enables them to engage with research teams to identify potential peer research opportunities in grants and projects. Their training allows them to challenge systemic discrimination by suggesting ways to include marginalized voices in health research to reach JEDI goals. Whatever their career path after PaCER, they bring team skills of participatory and action research strategies to understand social problems. They treat those they work with as equals and acknowledge the expertise that comes with being in relationship with health professionals and systems. The following are some examples.

This article in the University of Calgary news suggests an important way to create impact. Deborah Marshall, a co-founder of PaCER, has found ways to include patients as colleagues in health research at the national level. This study addresses the trajectory of growth and inclusion of radical new ideas. Note how the capacity of young researchers is celebrated as part of their internship and how the presence of young peer researchers helped extend research networks. A just published article (https://pubmed.ncbi.nlm.nih.gov/35383400/), also sponsored by Dr. Marshall, addresses priority concerns related to inflammatory bowel disease patients' relationship with food.

In a 2021 article, patient partners and biomedical researchers explore the issues of using patient oriented research methods co design using James LInd Alliance methods. It provides an excellent example of researchers reaching out to include patients in established research methods.

Citizen scientists create space for building relationships that include novel perspectives and, as such, promote creativity and flexibility within research teams. For example, Tarun Katapally from Saskatchewan provides an example of how participatory citizen science opens new doors in community-based systems science, in preparation for the coming digital age health promotion.

The Canadian Strategies for Patient Oriented Research, through national research teams, has the flexibility to innovate and promote social innovation and social enterprise. These teams are also able to support and experiment with peer research. If patient partners are to succeed, champions - be they individuals or teams - must work to build a case for trialing patient inclusion.

Impact of emancipatory science of patient engagement

The patient emancipatory movement (Williamson, 2008) is distinct from feminist, civil rights and Indigenous studies, all of which quickly recruited and trained community members to conduct research. Patient emancipation lags behind because patients have yet to achieve acceptance as partners in their healthcare.

This learning was captured vividly in the inability to continue Grey Matters after the catalyst funding ceased. The visionary director of the Kerby Center of Excellence, a fierce seniors advocate, was replaced shortly after the book was published, in part because Grey Matters was considered an example of advocacy that was not acceptable in their funding as a Seniors’ support center. The reality was that the concept of trained seniors as researchers was considered disruptive and counterproductive by academics and senior’s service providers.

PaCER, on the other hand, had champions that fostered innovation because they were part of developing the program. While PaCER became known for the research it produced, it is to be expected that the science and methods contained in this book will worry researchers who have not had a chance to work with PaCER graduates or colleagues who have experienced this option.

Peer research challenges disciplinary research traditions

Peer research combines three compatible research approaches: grounded theory, participatory action research and narrative data. The blended qualitative methodology became the target of those who challenged the need for a new qualitative method or, more seriously, the right of patients to conduct pragmatic research designed to explain existing practice and suggest novel solutions.

It is difficult to place this patient centric method within one discipline, but it shares aspects with disability and other culture based studies, sociology, ethnography, health promotion, psychology, nursing and education. The science of engagement will likely resonate with emancipatory and participatory research within these disciplines once the inclusion of patient led research becomes more accepted.

Co-design

In each of the three foundation studies, new social movements, Grey Matters and PaCER, co-design defined the goals from the perspective of the participating community or group of patients. The case studies of new social movements were defined as co-design of a participatory action method. Grey Matters was conceived through a collaborative co-design planning process and seniors took the lead in creating a focus group method and a way to manage data that demonstrated the interest in finding ways for seniors to modify research to ensure

PaCER began with a clear mandate to see if it was feasible to train patients to conduct patient experience research. Each internship and research project begins with co-design by patients, to ensure that the topic and methods are patient driven. Co-design is central to every PaCER internship and research project and the participants develop a keen interest and ownership of the research and the findings.

Action research is inductive and iterative

Peer research is specifically designed to adapt to patient and community experience and strengths. It is therefore inductive in theory and iterative in nature to enable citizens to have input throughout. It also builds capacity among peer researchers and participant co-researchers who become co-owners of the research.

Grey Matters used an action teaching model as part of an iterative process of teaching and testing traditional research methods for their relevance and usefulness. This enabled each team to learn, practice and conduct research with a partnership agency, present their findings to the Grey Matters class, and make changes to the method before applying what they learned to the test of the next research method.

PaCER incubation was inductive and iterative, both in active learning and in contract research where patients and sponsors were involved at each step in planning adaptations for the next step. Grounded theory was used during the catalyst funding to identify the process of patients becoming researchers. We see in Chapter 11 how user design for innovation depends on successful iterative testing of prototypes to prepare products and new roles as part of social enterprise and social innovation of new relationships.

Narrative provides consistency in method and opens space for improvisation and innovation

Narrative data systems ensure engagement and a way to focus on action. A story as data is an incident of what happened. Sharing individual stories of what happened, is happening or could happen creates common stories that become units of analysis with meaning in the past, present and especially, the future. Narrative was first identified during the new social movements case study. The methods were expanded and refined with Grey Matters and tested throughout the engagement strategy of PaCER. Narrative informs co-design (SET), conducting research (COLLECT) and finding solutions to the problems of interest to patients that could be told in new stories.

Narrative methods and analysis use in-vivo coding and categories reducing reliance on theory. Storied data systems, open access to hidden cultural data and interpretations that are not often captured in quantitative or standardized data systems. In health research, narrative and the use of stories are gaining credibility as the vehicle to inform systemic discrimination, innovation and uptake of new ways of doing and being.

Co-research spans co-design through to co-production

Patient consultants select the research topic and advise on the politics of conducting the research. Peer researchers recruit participant co-researchers, and at the end of each data event (interview, group, observation), participants are invited to share what they have learned about themselves and the topic. They are invited to consider who or what might be researched as part of the next cycle. Patient consultants return for the REFLECT focus group to work with the peer researchers to test the solutions identified during the COLLECT stage and to consider next steps. If peer researchers are included in testing the prototypes, they recruit from their pool of participants and join the design team to take the solutions to market or to implementation.