Section 3

Democratization of Health Research and Planning

This force combines initiatives that have come from within existing health systems and policy. Responsible Research and Innovation (RRI) and the Open Innovation in Science (OIS) (Beck et al., 2021, https://doi.org/10.1080/14479338.2021.1999248) movements and citizen science are examples of international movements to democratize science to create more lean, creative, and flexible research models that respond to the rapid changes in healthcare and research. These changes emerge from within health systems, government policy, and funding structures. Participatory health science movements such as citizen science (CS) provides a way to include users and patients as citizen scientists who collect data as part of academic research grants and projects. Citizen roles focus on extending the scope of research and are governed by engagement principles. The emergence of community science as participatory science is making significant emancipatory moves to support communities to identify research to address pressing needs and conduct research to make a difference. These are possible because of volunteers who are motivated to support change and learn new skills. PaCER and other emerging patient training models are in effect citizen science but have focused on training and co-designing methods to bring a unique and emancipatory citizen science voice to health research. Many of the graduates continue to volunteer and others are paid to conduct research as part of health research and planning teams.

Democratizing science began by including patients and other stakeholders in health research teams to bring new perspectives to research. Emancipation theory began with Freire’s participatory action theory as part of critical education of the poor in South America. The move to democratize science also includes ways to include an authentic patient research voice to inform current research practice. The concept of emancipation of patients was first promoted by Charlette Williamson (2008, https://doi.org/10.1111/j.1369-7625.2007.00475.x), who laid the foundation for a theory of patient emancipation within health systems and research in the UK and led the way to public and patient involvement in health and social care at all levels in the UK to counter harmful experiences and systemic discrimination in healthcare and research.

Health Technologies

Health technology migrated from the third industrial revolution, which saw the adoption of single innovation technologies such as computers and online communication, to the fourth industrial revolution, which combines these single technologies with digital, physical, and biological technologies. While thousands of new health technologies are created every year, we are focusing on technologies that relate to patient engagement in personal health and health care. This includes devices that diagnose, prevent, monitor, and alleviate suffering. One example is precision medicine and personalized medicine that combine technology with biological systems and organisms. Patients already use smart phones that are becoming hand-held laboratories, smart contact lenses have been developed to test blood sugar, and Kardia heart monitors analyze and share information between patients and physicians. The list is large and has the effect of creating new roles for patients to coordinate diagnostic and monitoring devices that produce real-time data for patients to use and share with care providers. Artificial intelligence (AI) provides real-time data to detect early signs of health conditions and tools to improve diagnostic and therapeutic accuracy.

Increasingly, technology uses early detection and preventive care to reduce chronic and stress-related conditions in order to promote wellness options for patients to live longer and better. This is not to say that there are not serious obstacles inherent in healthcare that uses costly technologies that may increase the gap for those unable or not familiar with technology. In my reading of this opportunity, it comes down to making technology literacy and personal health care part of all educational programs and insurance packages (Bhatia, 2021, https://doi.org/10.1177/0972063421995025).

JEDI Principles Challenge Systemic Discrimination in Health Care and Research

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, https://openjournals.uwaterloo.ca/index.php/JoCI/article/view/3279/4304).

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 equity-seeking groups. Emancipatory peer research is able to produce real-life data from diverse and unheard populations. Readers are encouraged to access the EDI toolkit, which provides a guide to implementing JEDI in health systems (Equity & Inclusion Office, n.d., https://equity.ubc.ca/resources/activating-inclusion-toolkit/).

JEDI also acknowledges the importance of group identity in understanding the value of real-life narrative data that captures the context, structure, language, and outcomes of identity as part of the experience. SoE reinforces emancipatory theory and social identity in these final chapters by providing new theory to encourage patients and their allies to identify and analyze systems from their unique perspectives and to show how language can be used to understand the intersection of patient identity and agency in health care and research situations, policies, and practices.

Theories and Models That Inform ‘Possibilities’

The following resources underlie the social change, theory, and methods of the future. The resources from the introductions to sections 1 and 2 are also relevant.

Emancipation, Liberation, and Empowerment Theories

These theoretical models recognize the capacity of patient researchers to challenge systemic discrimination to achieve equality. Salutogenesis provided the foundation for the search for positive outcomes, and this focus is expanded in this section to include a patient perspective of health systems 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, https://openjournals.uwaterloo.ca/index.php/JoCI/article/view/3279/4304) 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 et al. (2012, https://doi.org/10.1177/1363459312438563), 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.

Design Thinking for Innovation

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. Over time, ‘innovators’ who employed design thinking 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.

Increasingly countries are supporting innovation by providing funding. The particular practice of 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 12 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.

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 also 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.

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. In this final section there are examples of discourse analysis of health documents and communications to understand how systems influence patient identity.

The integrated narrative science proposed in Chapter 12 ensures that data collected as stories continue through analysis and interpretation in order to preserve language and the properties of language as in grounded theory.

Systems Theory and Patient Identity

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 of 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 well-being that are outside of traditional systems. 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.

Summary of Chapters

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 leaves the impression that it is all powerful and cannot be changed.

The matrix includes levels, from medical science to mainstream 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 identifying gaps, areas of concern, and 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.

New Patient Standpoint Theory

In Chapter 10, a patient standpoint theory is necessary because of the complexity of health systems. It provides a step toward 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 2-dimensional feminist standpoint theory to create a 4-dimensional grid that guides co-design, analysis, and prototypes of solutions through four psychological social environments and four transitions.

The theory also incorporates transitions between the four psychological spaces that help patients and allies consider options for change. This simple and colourful visual tool can be easily used with individuals, groups, professionals, and researchers to explore the power of understanding how identity and agency create messages of competence, crisis and change, learned helplessness and refuge, and belonging and acceptance. It helps professionals and allies understand that these psychological states are real, that their dominant psychological state of competence gets in the way of those who live within different realities, and the transitions from these realities may have unexpected consequences. For example, Bob has been stuck in learned helplessness and his teacher has decided that it is important for him to stop blaming others and take more control of his actions. If Bob tries to take control, it will push him through defenses and into crisis. A better solution would be to improve his self identity by finding a sense of belonging.

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

We have much to learn from these early Indigenous pioneers of authentic research partnerships. Siksika Nation in Alberta was the home of Henry Three Suns, and, as part of the co-design of new social movements case studies, fractured many of the original epistemological beliefs that I had. 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.

References

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Bhatia, Rajesh. (2021). Emerging health technologies and how they can transform healthcare delivery. Journal of Health Management, 23(1), 63–73. https://doi.org/10.1177/0972063421995025

Brunger, F., & Wall, D. (2016). “What do they really mean by partnerships?” Questioning the unquestionable good in ethics guidelines promoting community engagement in indigenous health research. Qualitative Health Research, 26(13), 1862–1877. https://doi.org/10.1177/1049732316649158

Jeffrey, T., Kurtz, D. L. M., & Jones, C. A. (2021). Two-eyed seeing: Current approaches, and discussion of medical applications. BCMJ, 63(8), 321–325. https://bcmj.org/articles/two-eyed-seeing-current-approaches-and-discussion-medical-applications

Tygel, A. F., & Kirsch, R. (2016). Contributions of Paulo Freire to a critical data literacy: A popular education approach. The Journal of Community Informatics, 12(3), 108–121. https://openjournals.uwaterloo.ca/index.php/JoCI/article/view/3279/4304

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