Introduction to Section 1
Tracking the foundations for a new health science
The roles of patients changed dramatically mid-century, and this section tracks the roles of patients though a sample of research experiences in health and community services and through the search for new roles for patients in health research and innovation. It begins in an institution and ends with a science of engagement. The roles of patients evolve from compliance and institutional control to patients as researchers supporting innovation and change.
This fledgling science is based on a long history of participatory action research, citizen science, emancipatory social science, design thinking and the recent rise of a fourth industrial revolution that combines technical, biological, and physical domains to support new forms of healthcare. Section 1 aligns with the evolution, democratization, and empowerment of citizens in all sectors of society that challenge systemic discrimination through new social movements. This work aligns with feminism, the civil rights movement, critical theory and cultural, disability, aging and mental health or mad studies.
When we began to engage patients in health research in 2012, a literature search for patient engagement yielded 34 hits and most of these were related to patient centered care. Today this same literature search would include patients as advisors, partners and researchers as well as apps and technology to engage citizens in their own health and health care. Many new journals have started dealing with patient engagement in research (ResearchInvolvementandengagement.biomedcentral.com), The Patient: patient-centered outcomes research (https://www.springer.com/journal/40271), The journal of patient experience: Sage journals (journals.sagepubl.com ) Patient-SCI Journals (www.SCI journal.org). And this is merely the tip of the iceberg as new players within community business, social enterprise and new technologies enter the ‘health space’.
There are signs of major changes in health delivery because of the democratization of medical information and the dramatic increases in computing that made precision medicine and genotyping, and artificial intelligence supported by machine learning. The landscape of health delivery itself is also changing, complementary, commercial (Hello Health), traditional, culture specific medicine and now autonomous health continues to grow. We are now experiencing a similar awakening in health planning and research, this time led by patients and citizens who are ready to reclaim their voices in personal health and health care. These changes coincide with the growth of citizen science and the Responsible Research and Innovation that focus on the importance of including citizens and society in research priorities, the practices of research and the outcomes. This is particularly important given the lack of realistic diversity in data and the serious repercussions of sidelining cultural, gender and disability experiences.
Most of these advances in health care and health systems require more personalized approaches. The potential for more empowered health care relies on the ability of patients and their families to become more involved in health promotion and prevention (upstreaming), in responding to risk factors, and becoming more involved in personal health care planning, monitoring and evaluating treatment decisions. This is not some future hypothesis, today, embedded sensor’s and monitoring devices are able to connect to a variety of analytic hubs as needed while informing health care providers and patients of the options. Society is at great risk of losing this momentum if we do not invest in building the capacity of patients, researchers and health care providers to work together and be part of the design and evaluation of these new technologies. 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 these innovative partnerships and insights.
We can call on Citizen Science (link), The Responsible Research and Innovation policy of the UK (link) to provide academic and political framework for this new science platform and the growing use of emancipatory and sustainability science templates to provide models and principles. The time is now to take action to strengthen our ability to stay ahead of the wave.
Theoretical constructs that inform Foundations
The time period of this section that begins in the 1960s to the present captures the power, turbulence and escalating social and technical change. The changes have been cast as the move from modern to postmodern thinking. Modern thinking developed after the world wars that used industrial and military structures to create new social systems in education, health, justice, welfare and science along with the emergence of professionals within these social institutions that promised rational and lasting structures and roles that would evolve through systematic observation and experimentation.
We see examples of Modern thinking in the psychiatric and long term care institutions, community training programs as part of university campuses, the challenges to health care for adults with disabilities, hospital care of the dying and political systems that constrain the rights of people with disabilities, aging, mental health and a variety of clinical pathways in health care. Social innovation during this time exists to challenge these constraints through alternative ways of thinking seen below
1. Postmodern thinking
Postmodern thinking challenged modern ways of knowing and gaining acceptance in the late 1960s. This evolution privileges movement, emergence and change and the study of social, historical and cultural contexts according to the realities of the individual, place and politics as opposed to primacy of meaning that resides in the reality of the physical and observable world.
2. Social construction and related theories
Social construction has been a major influence in emancipatory social science and collective 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 (Mead, Blumer, Herman and Reynolds, 1994 in Gergen links). This means that, instead of being responsible for things, or for people, we are responsible for engaging with others in a way that opens the possibilities of finding common ground and conceiving of shared futures. The tenants included:
- 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
- The study of roles and scripts that people play (Goffman)
Social construction is both relational and action based as evident in the early feminist and civil rights movements and the research that emerged. The power of groups and the moral mandate to act have influenced not only social change but postmodern research approaches.
3. Systems theory.
There are a vast number of systems 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 the 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 when the focus becomes challenging health care systems and a theoretical proposal of a patient perspective of health care systems.
4. Role theory
Actions within social organizations and everyday activity are socially defined categories (e.g. teenager, patient, expert). Each role is a set of rights, duties, expectations, norms, and behaviours that a person has to face and fulfill. We become socialized into the roles we play either explicitly or by testing boundaries with 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 with various systems. In particular we see a series of patient roles through emerging social innovations in health care and community support. The role of the patient and the reciprocal role of the ‘other’, professional, patient, natural support provide a template to understand role theory. This is particularly apparent in chapter two which is a detailed study of how roles are changed during through new social movements which are social innovations.
4. Asset and Deficit based approaches.
A major shift in health promotion occurred as the impact of post-modern thinking seeped into health care during the latter half of the 20th Century. The impact of the shift from deficit to asset foundations are outlined in this 2010 powerpoint from Glasgow Centre for Public Health (https://www.gcph.co.uk/assets/0000/2627/GCPH_Briefing_Paper_CS9web.pdf ). This has enabled a shift from less than effective 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 led to the adoption of community based participatory research which is the hallmark of most community health promotion initiatives.
The above theories supported new emancipatory social sciences, social justice and civil rights movements, community based participatory research, salutogenic strategies that are described throughout the book.
Introduction to the topics
As the first section in this science of engagement, we look to the natural evolution of patient roles in health using health research as the common denominator to note the rapid changes in patient roles. The first chapter provides a brief historical review of examples from my research career to demonstrate the evolution of patient roles in health care beginning with institutionalization and ending emerging paradigms that will change the roles of patients significantly. The second chapter is an article based on my first formal attempt to understand the feasibility and processes of peer research in a grounded theory study of social innovators and the new social movements they fostered. The third chapter is a compilation of experience with peer research partnerships to consider the benefits to both researchers and patients when engagement occurs and checklists to track personal progress. The final chapter introduces the emergence of a new science of patient experience that incorporates general approaches to engagement created specifically to support social innovation through social innovation and peer research.