Section 1

This section is about the evolution of patient roles in health research that begins in an institution and ends with a science of engagement based on my career in health research. The roles of patients evolve from compliance and institutional control to becoming researchers of patient experience. The next chapter outlines the co-research results of an experimental thesis from international founders of new social movements. The thesis used grounded theory that identified narrative as the essential element of the data collection method for engagement. Chapter three applies the social contract that had emerged in the thesis as an engagement tool that can be used to negotiate goals, roles, and endings of the stages of research from recruitment to publication. Chapter four proposes a science of engagement in health research based on 40 years of collaborating with marginalized groups to explore the nature of emancipatory research.

The evolution began mid-century, as the industrial and military structures of the World Wars were adopted by new social institutions in education, health, justice, welfare, and science. Quantitative and positivist research grew rapidly within these systems, because it provided a quick and verifiable research system to support evidence-based practice. During this time, critical methodology supported emancipatory politics, and citizen health movement were gaining traction with the early social work research of Moreno (1953), to improve the integration of immigrants and marginalized citizens.

Citizens were included in data collection and interpretation of their data, and, in doing so, introduced the importance of data that was action-oriented and made sense to participants.

This was followed by the work of critical sociologists, including the seminal work of Paulo Freire, Pedagogy of the Oppressed (its 30th anniversary edition was published in 2000), which introduced a critical analysis of language that turned education into participatory action research and continues to inform emancipatory social science and community-based participatory research.

The science behind these emancipatory methodologies reflects capacity and resilience-based approaches with patients and communities to broaden the science base into patient engagement in health research. A literature search for ‘patient engagement’ in research in 2012 yielded 34 hits, and most of these were related to patient-centred care. Today, this same literature search would include patients as advisors, partners, and researchers, as well as apps and technology to engage patients in their own health and healthcare (Nagappan, 2024, https://www.weforum.org/agenda/2024/02/health-tech-healthcare-telangana/). Many new journals have started dealing with patient engagement in research, including:

• Frontiers in Healthcare Research (https://www.frontiersin.org/journals/health-services/sections/patient-centered-health-systems and https://frontiersin-healthcare-research.org/index.php/id)
• Journal of Patient Experience (https://journals.sagepub.com/home/jpx)
• The Patient—Patient-Centered Outcomes Research (https://link.springer.com/journal/40271)
• Research Involvement and Engagement (https://researchinvolvement.biomedcentral.com/about)

It is hoped that the development of a science of engagement and the ability to train patients to work with researchers and social entrepreneurs will lead to innovative partnerships to inform this growing research about the emerging roles of patients in health research.

Theoretical Constructs That Inform Research

The following theories are basic ways of thinking about emancipation that guide the chapters in Section 1 and lay the foundations for the rest of the book.

1. Emancipatory Social Science and Intersectionality

Research related to civil rights and justice has been located within critical theory as it relates to emancipatory social science (Wright, 2006, https://www.sscc.wisc.edu/soc/faculty/pages/wright/Published%20writing/New%20Left%20Review%20paper.pdf) and more recently intersectionality (Collins et al., 2021, https://doi.org/10.1057/s41296-021-00490-0) as tools for social change and liberation from systemic discrimination related to race, gender, age, disability, labour, environmental, and economic security. The purpose is to use science to identify and explain the systemic features of oppression with a mandate to use science to create and support the conditions for human flourishing. These calls to action align with participatory action research and more recently the movement to JEDI—justice that is achieved through equity, diversity, and inclusion.

2. Role Theory

Culture within social organizations and everyday activity are socially created and defined (e.g., teenager, patient, customer, churchgoer, expert). Each role is a set of rights, duties, expectations, norms, and behaviours that a person has to face and fulfill. These roles develop into relationships that test boundaries with roles held by those in positions of power. Contested roles exist when values, policies, and procedures change expectations and relationships. We use role theory to focus on the role of the patient or citizen within various systems. In particular, we see a series of patient role changes and predict these roles will continue to change as health systems are impacted by emancipatory social innovations in healthcare and community support. Role theory enables these roles to be studied and supported. This is particularly apparent in Chapter 2, which is a detailed study of how roles are changed as part of new social movements.

3. Postmodern Thinking

Postmodern thinking challenged modern ways of knowing and being. The evolution of systems privileges movement, emergence, and change. This includes the study of social, historical, and cultural contexts according to the realities of individuals, places, and politics that take place in the physical and observable world. Phenomenology and the research of experience are examples of this approach.

4. Phenomenology

A phenomenon is a situation, happening, or experience that is observed. Phenomenology, therefore, is a general philosophical stance that supports research about the world we experience (hear, see, understand, feel). It is also about the language we use to communicate our experience. Engagement through peer research enables us to explore the personal and collective experience of patients. Phenomenology keeps us focused on understanding experience and seeking unheard voices in health research, to broaden our understanding of the diversity of health and healthcare experience (Zydziunaite, 2019, https://www.rsu.lv/sites/default/files/imce/Dokumenti/prezentacijas/vpa_2019/2019_27_04_VZydziunaite_workshop_phenomenology.pdf).

Phenomenology is particularly important when considering patient experience within healthcare systems because healthcare systems seem to be permanent and immutable. Patients with lived experience in health systems are the only resource we have when it comes to research expectations and values that create counter narratives and stories about past, present, and future patient experience.

5. Social Construction and Related Theories

Social construction has been a major influence in emancipatory social science and collective social action. As a philosophy, it suggests that meaning is created through language shared by groups. It began as a radical challenge to objective and rational science by declaring that people were active in shaping the social world rather than simply being acted upon. This means that we are responsible for engaging with others in a way that opens the possibilities of finding common ground and conceiving of shared futures. The tenets included the following:

• Reality is what humans cognitively construct it to be.
• Social constructs include not only language but roles, relationships, social organizations, systems, and policies.
• If social constructs are created, they can be studied, challenged, and changed through the study of social interactions, using various lenses, such as:
  • Patterns and strategies of interaction;
  • Power and conflict (critical theory);
  • Usefulness (pragmatics); and
  • The study of roles and scripts that people play.

Social construction is both relational and action-based, as evident in the early feminist and civil rights movements and the research that emerged from these early social movements. The power of groups and the moral mandate to act have influenced not only social change, but also postmodern research approaches.

6. Systems Theory

There are a vast number of system approaches. Most professional disciplines have crafted systems theories that organize their practice, ecological, and management beliefs. For this chapter, we use the term ‘systems theory’ as a focus on social organizations and how they are maintained and challenged by environmental pressures, both internal and external. In this chapter, we use the concept of systems theory in several ways:

• The exercise of power and structure to establish compliance of patients and citizens within health-related systems.
• The changes that occur within social organizations when established patterns are challenged.
• Systemic discrimination that occurs when access to care and the care provided is determined by differences not related to health needs.

Systems theory re-emerges in Section 3, where the focus becomes challenging healthcare systems and a theoretical proposal of a patient perspective of health care systems.

7. Asset-Based Approaches

A major shift in health promotion occurred as the impact of postmodern thinking seeped into healthcare during the latter half of the 20th century. The impact of the shift from deficit to asset foundations are outlined in this 2011 PowerPoint from Glasgow Centre for Population Health (https://www.gcph.co.uk/assets/000/000/189/GCPH_Briefing_Paper_CS9web_original.pdf?1700036392). This has enabled a shift from less-than-effective public campaigns to change the deficit, problem, or behaviours of populations, to engaging with communities to co-design innovative solutions to systemic barriers. The early successes of community-based participatory research became the hallmark of most community health promotion initiatives.

8. Citizen Health Movement

The citizen health movement is included here because it is the healthcare equivalent of engaging patients, families, and communities as co-designers, co-producers, and co-researchers. The citizen health movement aligns with the narrative health and the citizen movement as well. It provides a link between the above theories and healthcare (Doherty & Mendenhall, 2006, https://innovation.umn.edu/citizen-professional-center/wp-content/uploads/sites/66/2020/09/citizenhealth2006.pdf).

The above theories supported new emancipatory social sciences, social justice, and civil rights movements, community-based participatory research and salutogenic strategies that are described throughout the book.