Prologue: An Invitation to Explore New Relationships in Health Research as part of a New Science of Engagement (SoE).

I would like to begin by acknowledging the health research traditions that involve patient engagement. These include Participatory Action Research (PAR), Community Based Participatory Health Research (CBPHR), Patient Oriented Resarch (POR) and Citizen Science CS. These have all informed SoE, and may, in turn, include the SoE in their future research options.

Patient engagement in healthcare, planning, and research has roots in the civil rights and emancipation movements of the past century that brought to light inequities, now defined by the social determinants of health and systemic discrimination. Building on the radical traditions of the Chicago school and writers like Paulo Freiri, emancipatory pedagogy, research and civil action provided the impetus for change in marginalized groups. Early examples of emancipation included community health centers in the US that gave rise to community health research that explored participatory methods and relationships Blumenthal, 2014.

The emancipaory research traditions of PAR and CBPHR have flourished from these early beginnings, providing space for incubating new relationships, methods, and theory on the outskirts of institutional health care, research, and planning. These traditions are evident in the science of engagement, especially in the Peer Research program manu job descriptions or the Wellesley Centre and the leadership roles evident in The Pacific Aids Network.

PAR and CBPHR have guided and sustained my continuing work in community development and community rehabilitation. They continue to provide the principles and emancipatory expectations that inform the science of engagement and the theories and methods that have emerged. However, I have focused this manuscript on the belly of academic health research to expand the science of engagement of citizens and communities to foster new research roles, relationships, methods, and theory through research that is participatory, action oriented and rigorous. Patient engagement in SoE focuses on peer or patient-led research as the general term that denotes co-research done with, for, and by patients and citizens. It captures the final empowerment stage of patient and citizen engagement where citizens and leaders become full partners in research that informs evidence-based decision-making.

Patient Oriented Resarch (POR) grew from the need in medical research to create rigorous and standardized measures of patient outcomes for clinical, healthcare effectiveness, efficiency, as well as health systems research. Canada’s national Strategies for Patient Oriented Research (SPOR) and the United States’ and the US Patient Centred Outcomes Research Institute (PCORI) that focus on the data science of POR to contrast, compare and track patient experience changes in health research. They also include patient engagement as part of their POR mandate. Both have begun to include patients in the co design of POR measures and use POR surveys to track program and client change. POR data science has generated a strong, reliable and validated data science to capture patient experience, outcomes and satisfaction. Perhaps SoE that focuses on patient-led co design and co research methods of real life experience of personal health and healthcare will inform their commitment to the patient engagement committment in their mandates.

Citizen Science provides an umbrella for research that includes citizens as scientists in academic and professional research. While it was grounded in natural and environmental disciplines, the developments in online research including recruitment and distributed analysis have opened many routes into health research. In health research CS generates options for more diverse recruitment and new relationships with patients as citizens collect local and personal data but still use formats determined by the academic research team. Increased authority of citizens as part of research teams aligns with SoE. SoE will support co design of research methods and training options to bring a patient research voice to research teams and conduct citizen led research.

SoE consolidates the following principles and components related to citizen led research as part of CS. SoE has been informed by a career in emancipatory community research and development, published articles and a curated research hub of student and contracted peer research reports, and an online university approved program of studies in patient and community engaged research for patients and community members. The specific features include

1. A co designed and co-produced framework where patient and community members are trained to build co researcher relationships in health research.
2. Focus on real life experience and expertise to answer the question ‘what is happening here, how and why is it happening now?’
3. Tested engagement methodologies that include PAR principles, narrative data science and a grounded theory iterative constant comparison analysis method designed to find solutions to main concerns of populations.
4. Adapted and new theory specific to patient perspective of their experience as part of healthcare systems and anticipated new technology futures.
5. Emancipatory principles of equity, diversity and Inclusion (EDI)
6. A pragmatic science that asks the question ‘what works, how and why’ to build bridges to innovation and social enterprise.
7. Links to International research and innovation social movements: Design thinking (Innovation science), changemaking (Ashoka), Responsible Research and Innovation (RRI), Open Science in Innovation (OIS)

SoE seeks ways to collaborate with existing health research platforms to find new ways to support health research as it transforms to recognize the need to foster emancipatory patient roles to adapt to technology.

Acknowledging my experience that informs this journey of emancipation.

During the writing of this manuscript, I discovered that my career as a researcher had been molded by a birth condition now identified as anaphantasia that leads to difficulty imagining and visualizing. This impacts visual short term memory. Early on my mother realized that I had difficulty with letters and reading, and we set out to learn how to identify what I needed to do to avoid being labelled with a learning disability. Luckily, my family moved often, and I was able to study what teachers did and what they expected. I learned more about how education worked with each new school.

My years of observing and understanding how things worked to compensate for my difficulties prepared me for an undergraduate interdisciplinary degree where I learned how disciplines worked and researched. While I was an outsider, I was able to create assignments that I could manage. I was then accepted to a master’s program because of my diverse background and psychology consolidated my knowledge base and research skills. I was then hired as a research assistant in a psychiatric research token economy project and then developed a vocational rehabilitation project for the hospital that spread to all units.

When I moved to Alberta as an independent psychologist, my career included working with government and community programs, at local, provincial, national, and international levels, with all ages and many disabling and health-related conditions. I was hired by a Centennial Research Institute of the University of Calgary, now VECOVA, to develop a person-centered assessment and curriculum for adults with disabilities -- the Adaptive Functioning Index. This experience allowed me to then focus on how to build the capacity of people and communities who were searching for ways to access, inform, and control the decisions that impacted their lives. I learned that new ideas, while engaging, are risky and prone to being undone unless there is ongoing funding and champions to manage implementation.

I was hired in the early 1970s to use participatory research within disability communities to co design a curriculum for an innovative, interdisciplinary disability studies program that included Education, Medicine, Kinesiology, Social Work, Nursing, and Continuing Education at the University of Calgary. I was able to use my interdisciplinary research background to work across faculties with communities who motivated us to conduct research that could make a difference. I researched new approaches to legal guardianship, adaptive devices, community health programs, community development and social enterprise models of employment. We developed new interdisciplinary projects with psychology and environmental design, nursing and social work and an international curriculum in community-based rehabilitation as part of the International Association for Rehabilitation Counselling. I was privileged to be in a university that valued innovation and transdisciplinary studies and enjoyed the freedom to challenge systemic discrimination as part of new social movements related to disability, culture, and economic discrimination.

When our disability studies program moved to the faculty of medicine as part of the Cumming School of Medicine, Community Health Science department, I realized that health research provided a unique opportunity to change the role of patients in their own health and the health systems they relied on. Then my experience with the Independent Living Center of Calgary and the international Clubhouse movement intervened. They shattered my assumption that professionals identified and solved problems for persons with lived experience. Their belief in peer support and peer-led communities sent me back to do a PhD to explore new social movements in England and Canada. I used grounded theory to co create and study co-research partnerships in New Social Movments . This resulted in an integrated narrative methodology and a social contract for research partnership at each step of research.

When I returned, a group of seniors at the Centre of Excellence of the Kerby Centre in Calgary suggested an innovation grant from the Canadian Institute of Health Research to test the narrative methods from by PhD for seniors-led peer research model. The results of the four-year study were published as Grey Matters (Marlett and Emes, 2010).

Grey Matters was published as Alberta’s innovative Strategic Clinical Networks™ were looking for innovative ways to train patients to bring a new research approach of patient experience to health transformation. This led to another national innovation grant from Canadian Foundation for Health Innovation to see if patients could be trained to conduct research that engaged other patients using Grey Matters as a curriculum. This Calgary partnership consisted of the Alberta Strategic Clinical Networks, the Cumming School of Medicine at the University of Calgary’s Community Health Sciences department and a small social justice program, Community Rehabilitation and Disability Studies. This steering team supported the project through the incubation years. Graduates joined SCNs and health research teams as advisors and peer researchers.

When the grant ceased, we realized that Peer Research was creating new research approaches, methods, and relationships that held the promise of a sea change for patient engagement. We established a social enterprise to support Patient and Community Engagement Research (PaCER) that consisted of three interrelated programs: the training program; peer research contracts; and research development. The first two components functioned with academic oversight and a PaCER advisory committee with business, university, and health experience. The goal of studying research and scientific development led to this manuscript.

The training and research contracts grew rapidly, and PaCER training was adopted by Continuing Education to formalize the training of non-traditional students. The curriculum was recognized and approved by General Faculties Council at the university. The patient engagement platform of the Alberta Strategies for Patient Oriented Research (SPOR) unit, located at the O’Brien Institute for Public Health assumed PaCER academic leadership.

The need for a Science of Engagement in Health Research and Innovation

The pace of change is increasing, and, unlike former industrial paradigm shifts, this shift builds on advances in computerization and communications that have led to the combination of physical, digital, and biological technologies. This paradigm shift will impact the roles of patients and professionals and the very nature of who we are, our health and healthcare. Patient involvement in technology is needed to address the relationships, programs, and treatments of the future. Change won’t wait until academic researchers, patients, and communities are ready. We need to prepare patient researchers to co design, prouce and evaluate outcomes of future health and wellbeing technologies.

At the global level, we are bombarded by growing wicked problems -- pandemics, climate changes, rapid and unfettered technological change, aging institutionalized systems, and civil unrest. As with most wicked or intractable problems there is an urgency to find ways to untangle, explain, and take action at local levels where the complexity and challenges can be understood and addressed. The concept of ‘local’ itself is shifting as patients and online patient groups curate and share their data and discoveries. The Canadian Maple Health Network (getmaple.ca) seems to capture this notion of an online community with real-time doctor visits, links to specialists, local homecare, and diagnostics. Online chronic illness communities are forming that use technology to support treatment options, peer support and new technology with new professional health facilitators emerging.

Anticipated change will need robust and diverse patient/citizen data systems based on potential futures, real-life patient experience that is able to anticipate and respond to change as it evolves. Citizen science, Social Innovation, Social Enterprise, Change making (Ashoka), Open Innovation in science (OIS), Responsible Research and Innovation (RRI) are but a few of the new social movements in science that are attempting to democratize science so that it can respond to future challenges by actively recruiting new partners capable of joining research teams. These forces of transforming and democratizing science are moving to approaches that include citizens, communities, governments, and business as research colleagues and full research partners.

Unfortunately, citizens and patients are the only partners currently without a research tradition that captures their lived perspective and expertise. Peer research, as typified by PaCER and other patient led initiatives, has produced an inductive, adaptive, and engaging method that produces real-life data co-created with patients. These approaches began within communities from diverse and unheard populations. It is located in participatory and action goals and equity, diversity, and inclusion principles (EDI). Not only does peer research inform research and innovation, but it is building a literature of how patients and communities can build confidence and capacity for change through co design and co production of research that contributes to decision making and new health relationships.

Democratization of Science aims to increase the diversity of partners to increase research relevance, creativity, and improve the rate and effectiveness of innovation and enterprise. However, Canada’s international ranking in startup success has dropped in the past four years from 15th to 22^nd, and it is time we utilized our growing national experience in patient engagement to reverse this trend.

Peer research supports practical, relevant, and creative research that will make a difference by creating and validating ideas for innovation. Other factors in democratizing research include: supporting researchers with cultural competence (Indigenous, Black, gender diversity, disability) that can drive peer research; encouraging social enterprise leaders to use peer research; and, government policy makers who can look at new forms and relationships as care delivery changes.

Frank, 2022 provides an overview of the four countries that have established patient engagement in research at national levels: Canada, United Kingdom, United States, and Australia. You might want to look at this article.

Format and use of this book.

The book is divided into three sections: Section 1 lays the foundations for a proposed Science of Engagement; Section 2, Engaging, explores existing peer and patient-led research literature, adapts theories related of narrative and salutogenesis (the study of wellness) and presents a compendium of methods tested for use by researchers interested in expanding peer research as part of their research plans; The third section, Possibilities, presents two new theories to deepen the planning, conduct and analysis of real life, storied data, and ends with a chapter devoted to future additions to the science of engagement and partnerships between academic and design thinking innovation.

The focus and the format of this book encourages you to explore, review, and join reading groups to discuss ideas or form communities of practice. Each chapter is self-contained so that you can browse chapters that interest you with resources, questions and opportunities to add your experience or examples .

The concept of patients as peer researchers was originally met with skepticism. Hopefully, there is now a body of research done by and with patients to allay this reluctance. Examples of citizen science, changemaking, and peer research are included throughout the book to help understand the scope of peer research.

While the book was initially written for academic researchers, it soon became apparent that the content included ideas from many disciplines and could be difficult and confusing for readers. The decision was made to adopt the style of Grey Matters that was written for a diverse audience, using a journalistic, narrative style with many examples and links to resources. Formal referencing is included at the end of the book, but you can open almost references and resources directly as long as they are open access.

The University of Calgary Press has been a pioneer in open access publishing (Grey Matters was its first open access publication) and an early adopter of an innovative publishing platforms, called Manifold that is dynamic and interactive. We decided to test the potential and liabilities of open-source links to academic, professional, and popular sources. This has been a major challenge as links can be fragile unless there is a DOI link as well. We realize that inconsistencies may arise and ask readers to notify the author to re-establish a link to articles.

The availability of embedded resources may be new for some readers. Resources, research excerpts, student assignments, articles hard to find and gray literature about peer-led initiatives are included at the end of chapters. You are encouraged to suggest potential resources or examples for discussion. All of these innovative publishing features allow for discussion groups that can meet separately and also meet with the author.

The Science of Engagement in this book supports health researchers, providers, and planners to connect and learn about the future with patients, citizens, and communities. This brings local, real-life experience to difficult problems. Patients and community members who are advocates and advisors or trained in peer methods are welcome to join any reading group or create their own groups.

The science, theory, and methods will undoubtedly raise some uncomfortable questions or intriguing opportunities. It has been developed to provoke discussion, independent study, and courses in health research.

From the University of Calgary Press

As part of our commitment to accessible scholarship, The University of Calgary Press is pleased to make the unedited draft of A Science of Engagement in Health Research and Innovation available for public review.

This draft has been made available via Manifold at UCalgary Press, and is available to read for free, without paywalls or limitations. We welcome public comments, which will be shared with the author as part of the formal review process.

We believe that, by sharing manuscripts during their editorial process and opening review beyond the traditional system, the opportunity to advance scholarly knowledge will be strengthened and sustained.

Visit https://ucp.manifoldapp.org/projects/health-research to read the manuscript version of A Science of Engagement in Health Research and Innovation and sign in with your Manifold account to make your contribution to the revolutionary process of open review.

Outline of The Science of Engagement (SoE) in Health Research and Innovation

The first section is expansive, exploring a broad base of co-research with patients and communities that leads to a proposed emancipatory science of engagement. The second section presents published examples of peer research, theory, and methods for academic researchers that are also applicable for health professionals, students, patients, and citizen groups. The final section introduces new theory and a coherent peer research methodology for academic researchers and social innovators and entrepreneurs.

Each chapter is summarized with a quote from a reviewer in italics.

Section 1. Tracking foundations

Topics orient and inform students, researchers, innovators, and citizens about the history, research traditions, practice, and science of engagement.

1.1. A personal narrative of social innovation in health research

Emancipatory movements such as civil rights and feminism challenged the balance of power in the latter half of the last century. Shifts in healthcare are tracked through a personal research journey depicting the evolution of roles over the past 50 years, ending with an introduction to the fourth industrial technological revolution.

The review team was surprised by how far we have come in only 60 years, but they also found that most of the stories were still being told.

1.2. Negotiating co-research

My classical grounded theory PhD developed an integrated narrative methodology with six international founders of new social movements. This proved that co-research could both engage collaborators throughout the research process and produce sound research findings.

I think I would take this to the research team I am currently working with.

1.3. A social contract for engaging patients in health research

This chapter supports researchers and teams who are already or intending to include patients throughout the research cycle from grant writing to implementation. A social contract negotiation tool and a checklist called Acts of Engagement is included.

This encourages negotiation of expectations and ways to plan and track engagement.

1.4. An Emancipatory Health Science of Engagement

A canon for a new science was crafted using the experience of other new emancipatory sciences such as feminist and Indigenous science. It includes principles, philosophy, methodologies, new theory, and applications to promote and sustain innovation, transferability, training, and career opportunities.

A novel way to understand peer research from an academic stance while being written in plain English. As patients, we can see the value of innovation while the system may feel somewhat reluctant.

Section 2: Engaging

An overview of the research that supports a Science of Engagement. It includes recent publications, salutogenic, and narrative theory and methods along with tested engagement research methods that can be used as part of most health research projects.

2.5. The state of engaging patients and communities

Summaries of recent published research and reports that include motivating patients, international peer research initiatives, peer researcher job descriptions, social impact on health planning teams, blending patient and researcher roles, and peer leadership.

The job descriptions were what I needed to understand what I could do as a peer researcher.

2.6 Salutogenesis as patient expertise in health and health research

Salutogenesis provides a coherent picture of patient expertise in searching for wellness despite medical problems. As such it balances the dominant experience theories of illness and the sick role. The process of achieving resilience and sense of coherence informs co-design, data collection, and analysis and suggests action and design thinking.

I struggled wrapping my head around the theory, but it lays a foundation for the book and the science.

2.7. Narrative theory and methods in Peer Research

Narrative is the key to an engagement science because of the power of story to support identity, agency, relationships, and change in social institutions. This chapter explores narrative in peer research to increase social impact through stories as incidents for data collection, analysis, and shared meaning as part of narrative theory.

I didn’t realize how many ways narrative works in research. It brings people together to find meaning and courage to implement change’.

2.8. Peer Research for Qualitative Researchers

As a compendium of tested methods and strategies, it explores research options for citizen science, peer research as part of academic health research, community-based health research, and patient-led research initiatives. Basic adaptations and new methods are included for data collection, analysis, and interpretation.

The Set, Collect, and Reflect model is well broken down so it gives more clarity to how this type of peer research would occur.

Section 3: POSSIBILITIES: new theory and options for future partnerships

This section increases the potential for evidence-based research by expanding the range of theory and partnerships to deepen analysis and implementation of peer research.

3.9. Patient perspectives of health systems

Systems analysis and system change lead this section by studying examples of system templates that can produce a patient perspective of health systems. Patient and group analysis of their specific health system help focus the choice of research priorities and directions of system change.

The diagrams about patient perceptions of the Primary Care Network from a casual user and people with chronic concerns was like a breath of fresh air. The template captures what we so often experience but can’t really voice.

3.10. An Emancipatory Patient Standpoint Theory

This theory began as part of a self-assessment tool. It extends the Salutogenesis continuum of health identity to include a vertical axis of agency to reflect the realities of healthcare more closely. It can be used to map current experience and identify goals in research, practice, and social innovation.

The patient and disability standpoint map helped me to map where I have been. The brilliance of this is that, with needed support, almost anyone can use this map and the theory, it is a powerful tool.

3.11. Peer research and design thinking: the bridge to making a difference.

This final chapter combines the existing methods of peer research with new theory and methods to build bridges between academic research and innovation using design thinking. This is done to promote creative, flexible, relevant, and rapid translation from research to social enterprise of products and services and social innovation in health.

Contact: N.J. Marlett, marlett@ucalgary.ca