Highlights

• The increasing value of a science of engagement in health research
• Values, goals, and principles of emancipatory science traditions
• Foundations of all new science: philosophy, scope, methodology, and ethics
• Why the science of engagement is relevant: theory development, supporting and sustaining innovation, supporting and challenging current practice, training, and career development

Why Is a Science of Engagement in Health Research and Innovation Needed and Who Is Leading the Charge?

While including citizens in research may seem new, self-taught citizens were scientists long before science became professionalized and affiliated with universities and citizen science was sidelined. While funding reinforced this professional monopoly of science, it didn’t take long before there was resistance to the exclusivity of academic research and the barriers between science and society, creating pressure to democratize science and make it more open and relevant to society.

In this chapter we present a proposal for an emancipatory social science that brings practical and action-based patient voices to health crises of high costs, depleted workforce, politicization of health policy, and systemic discrimination. Patients in the middle of the turmoil bring fresh insight to imagining alternatives and preparing for alternative futures and change (Wright, 2009).

A health science that brings new energy and ideas also creates space for inclusive, flexible, and collaborative forms of research to address the problems at ground level. This recognizes past and present strengths while being open to alternative futures and visions of care. This need for an SoE is supported by new collaborative and open science movements such as citizen science (CS) and open innovation in science (OIS) and community health sciences that support new collaborative health research relationships.

Citizen science attracts academic and professional researchers who are committed to democratizing science by recruiting and working with citizen scientists, civil society, and business to broaden the range and scope of research, to include local wisdom, citizen motivation, and expertise (Strasser et al., 2019, https://doi.org/10.23987/sts.60425). Today this includes not only biological, physical, and natural research to address current crises of degradation of our planet. CS was among the first research platforms to embrace the use of new communication technology (crowdsourcing), physical 3-D printing and distributed analysis technologies. Peer research could be considered citizen science with the difference it trains citizens who are patients to engage other patients in engagement research which aligns with innovation of new forms of treatment and health care delivery.

Open innovation in science (Beck et al., 2022, https://doi.org/10.1080/13662716.2020.1792274) sets out to respond to complex social, environmental, and technical challenges that can’t be solved by current linear, disciplinary research. OIS strives to increase creative, collaborative, flexible, and open research approaches by introducing new partners such as business, government, and users of research such as professionals and citizens. OIS began with open access publishing, access to data, and transparent and open review of publications. It now invites debate about initiating and managing knowledge flows across organizational and disciplinary boundaries at all stages of the research and at the individual, team, organization, field, societal, and policy levels.

Deeper interactions between scientists and patients have increased the motivation of scientists to engage in innovation activities (Beck et al., 2022). They recognize the need to prepare new partners to bring their research traditions to new OIS teams. Because of the impact of technology on health, patients with SoE training would be poised to achieve different and potentially more valuable health research (Beck et al., 2022).

The science of engagement could provide the conceptual links between SoE, CS, OIS, and innovation science by introducing collaborative research methodologies designed specifically for patients and citizens.

Community health research pioneers in innovative and emancipatory constructivist research have made significant progress in teaching participatory methods to health researchers and practitioners (Labonte et al., 1999, https://doi.org/10.1093/her/14.1.39). SoE originated within the Community Health Sciences department at the University of Calgary that combines many forms of research, from big data analytics to personal autoethnographies. It encourages health services research, qualitative research, ethnographic studies, critical research, narrative and participant action research within Indigenous, immigrant, and refugee cultures, and institutional ethnographies of health-related bureaucracies. Community health departments tend to be incubators of emancipatory patient experience research and are supportive of blended methods that combine participant action, critical, narrative, and grounded theory methods within historical roots in feminist and cultural research, community-based participatory research, and narrative traditions.

Community health sciences incubate approaches that are rigorous enough to impact current research directions, while meeting our moral responsibilities to society to produce health systems that promote wellness, compassion, and a creative spirit. During this time of change, we need to form nimble and responsive partnerships that can learn new ways of knowing, while exploring technology-informed forms of care. Artificial intelligence and deep machine learning are already providing support in personal medicine, pragmatic clinical trials, and digital chronic collaboratives, all of which need a strong patient research presence.

This emancipatory science of engagement in health took shape through the study of new sciences: feminist social science (Richardson, 2010, https://doi.org/10.1007/s11229-010-9791-6), Indigenous science (Snively & Corsiglia, 2016, https://pressbooks.bccampus.ca/knowinghome/chapter/chapter-6/), the re-emergence of citizen science (Strasser et al., 2019, https://doi.org/10.23987/sts.60425), sustainability science (Kates, 2016, https://doi.org/10.1002/9781118786352.wbieg
0279) and global health sciences. These new sciences intersect through social justice themes and critical theory foundations of disability studies, and are supported by our national Strategy for Patient-Oriented Research (Canadian Institutes of Health Research, 2019, https://cihr-irsc.gc.ca/e/48413.html) and our Strategic Clinical Networks (SCNs), which promote collaborative patient engagement and innovation.

The Pioneers of an Emancipatory Social Science

As an emancipatory social scientist, I have had the benefit of the history and experiences of the pioneers of emancipatory research and action. People with lived experience includes a large, diverse group, experiencing disability, mental health and addictions, aging, disadvantaged or chronic illness, and those experiencing access and equity issues related to Indigeneity, race, gender, religion, and culture. The following taps into the contributions of the pioneers of emancipation in health.

• Disability: Persons with a wide range of disabling conditions were among the first to challenge the medicalization of their lives. They became champions of inclusion and rights and, in doing so, innovators of adaptive technologies and emancipatory social organizations. Persons with sensory disabilities founded patient organizations and provided adaptive tools for independent living. Families of people living with developmental disabilities, and their allies, established community services, inclusive education, and individualized funding. Persons with physical disabilities established advocacy and international civil rights, accessibility legislation, and were among the first social entrepreneurs, managing their support staff through individualized funding. PWLE were early inventors and adopters of many of the technologies we commonly use today—from telecommunications to oral transcriptions and robots (Martin, 2012, https://cjnr.archive.mcgill.ca/article/view/2348).
• Chronic and complex care: These patients represent the largest segment of healthcare users and, as such, have been involved in projects designed to improve care while reducing costs and more recently to support emancipatory practices. Patients and their families were active in new nursing and paramedic roles, allied health chronic care teams in primary care, and community health programs. In the last few years, new, unified online healthcare models, such as Maple (https://www.getmaple.ca ), are providing personal healthcare and wellness support that include physician care, local home care, and specialist services.
• Patients have promoted tools to support each other through social media platforms to curate their own health records, monitor their treatments. Options such as Zamplo (https://www.zamplo.org/) provide technology to curate their data and connect with others and take part in research. A Globe and Mail article about the use of technology in healthcare captures the power of patients to use technology to curate their own health and become innovators of digital health futures (Moore, 2021, https://www.theglobeandmail.com/business/article-using-technology-to-put-more-power-in-the-hands-of-patients/).
• Aging: Mandatory retirement soon created a discourse of aging that justified terms and labels such as the ‘grey tsunami,’ ‘burdens to society,’ and ‘decrepitude.’ A study of seniors’ resilience (Marlett et al., 2010, https://prism.ucalgary.ca/server/api/core/bitstreams/36332647-33ed-48a6-9d89-ad5baa29d96b/content) demonstrates the depth of their motivation, capacity, and social capital. However, as health technology targets the early identification and prevention of disease, the burden of chronicity and lifestyle conditions will decrease, and the social and economic capital of seniors will be needed to address the dip in working age population as the post-war bubble grows. Already, adaptive devices, robots, and 3-D printing of joints and organs and particularly the internet of things seem set to become commonplace to manage challenges that can’t be mitigated by current implants and artificial replacements. Seniors are becoming personal health researchers but will quickly need to gain access to innovation teams who are producing technology targeted to them.
• Mental health and addictions: Peer support, social enterprise, neurological, and therapeutic digital technologies in Canada have led the survivors of ‘deinstitutionalization’ who banded together, adopting recovery models of self-help and starting social enterprises that forced social change. This began with SURE in the UK, and more recently with Canadian Mad studies (Poole et al., 2012, https://doi.org/10.48336/IJDBHR4913). The field of implants for mood disorders highlights the privacy and control issues inherent in many emerging mental health treatments. It is imperative that patient peer research become a permanent feature in digital mental health technique development.
• Indigenous science: Participant Action Research (PAR), was forged in low-income countries and has become part of Indigenous science, which is grounded in the land, family, and ancestors. Indigenous science informs education, healing, and environmental stewardship that is becoming recognized during this period of climate disasters and the urgent need to protect our natural world. Most universities now have Indigenous teaching and research capacity, and PaCER research has been informed by numerous Indigenous PaCER teams that reinforce the focus on story, collaboration, and adapting and creating methods to align with customs that are informed by Indigenous ways of knowing. Research led by communities and Elders leads the way to participatory research (Martin, 2012, https://cjnr.archive.mcgill.ca/article/view/2348). The search for recognition and equality will lead to new forms, not only of governance but of healthcare. One reason for this is the strong example is Indigenous research guided by principles of ownership, control, access, and possession (OCAP) that support strong information governance on the path to First Nations data sovereignty. Recent examples of Indigenous collaborations as part of patient-led research in western Canada are taking back Indigenous ways of knowing and sharing information to promote health and sovereignty of health practices and research.
• Racial inequality: Civil rights, race-based and religious stigmatization, systemic discrimination, reconciliation, and anti-stigma approaches in Canada are often minimized. An article by Banting and Thompson (2016, https://politicalsciencenow.com/the-puzzling-persistence-of-racial-inequality-in-canada/) provides a powerful exposé of the factors that challenge our international reputation for tolerance and social equity. The landscape of Canadian inequality is changing, as the dialogue shifts from societies needing to make things right to the recognition of the rights of communities to determine their own relationships within Canada.
• Economic disadvantages: The social determinants of health define social disadvantage, but the key factor is poverty. We need to create policies to reduce economic inequality in Canada, particularly policy tools that problematize poverty, target, and alleviate inequality, particularly the urgency of poverty. Those living on the margins of society have often lost motivation to change their lives because, without money, the rest of social determinants drop off the table. This remains a population looking to become equity seekers.

The above list of contributors to emancipatory science is not intended to marginalize the rest of society but to acknowledge that marginalized populations have been the ones in the trenches, borne the brunt of systemic discrimination, and challenged existing practices to find space to flourish. Within each of the above categories, there are movements toward community or peer support workers that demonstrate the power of shared experience in managing complex problems at the local level.

A Canon of a Novel Emancipatory Health Science of Engagement

This section includes the basic framework for a new science, the nature of the science, and finally, the relevance and impact of a new science. We move to a first attempt to conceptualize the elements of this new science. The canon consists of the following criteria, outlined in Table 4.1.

1. Basic Elements of a New Science

1.1 The Overview of Why an Engagement Science

Values, goals, principles, and ethical standards guide research practice and provide the reasons why this is needed. The overarching golden rule of peer research might be researching as you would want to be researched. This does not happen easily, because it challenges the power differentials between researchers and patients. This golden rule of an SoE is captured in the current work of Jer Thorp, Living in Data: A Citizen’s Guide to a Better Information Future (2021), which informs and invites citizens to become engaged in data and information technology with the question: How do we stop passively inhabiting data and instead become active citizens of it? When we become part of science, we are our data, we understand our data, use our data, and share it to make a difference, and in the process, science is democratized.

This is further supported by the Responsible Research and Innovation (RRI) policy, begun in the EU to align research and innovation to the values, needs and expectations of society. The current iteration of open innovation in science asserts the need for collaboration with non-traditional researchers such as patients, business, and governments. Most of the ‘non-traditional’ collaborators bring ways of conducting research to the table. SoE suggests a peer- or patient-led research approach that will facilitate patient research equity with research partners.

1.2 Goals and Principles of the Science of Engagement

The following is a high-level overview of goals and values of science in Canada that sets the tone for peer research.

• Research that reflects all Canadians from the perspective of citizens, patients, and communities. This includes not only research about inequities but also research to promote health equality for all.
• Enhance the common good to make a difference in health, global health, and the health of the planet.
• Inform decisions in public policy, systems change, innovation, and applications of knowledge. Engagement research is designed to promote practical, creative, and realistic social innovation based on input from citizens, patients, and communities.

Citizen health provides an overarching framework to democratize healthcare by engaging citizens as co-producers of health research (Doherty & Mendenhall, 2006, https://doi.org/10.1037/1091-7527.24.3.251). These emancipatory engagement principles apply to most emancipatory social science options and provide a standard of emancipation for health research.

Citizen health research core principles (adapted from Doherty & Mendenall, 2006):

1. The greatest untapped resource for improving healthcare is the knowledge, wisdom, and energy of individuals, families, and communities who face challenging health issues in their everyday lives.
2. People and communities must be engaged as co-producers of health, healthcare, and health research, not merely as consumers of services.
3. Professionals and researchers can play a catalytic role when they build the capacity of citizens and communities to co-design and produce research to improve and implement new ideas.
4. Citizen-led and co-created initiatives lead to initiatives that are ‘owned’ or co-owned by citizens. Research led by established programs and citizens cannot share ownership.
5. Local communities must retrieve their own historical, cultural, and religious traditions of health and healing and bring these into dialogue with medical systems.
6. Citizen health and health research initiatives should have a bold vision while working pragmatically on focused, specific projects.

These principles of health care and delivery could also apply to research if it was ready or interested in critical and emancipatory research and peer or patient-led research. This short summary accurately describes the science of engagement as a goal for health research. I would expect that this might concern or embolden readers because it paints the reality of what most would call emancipatory research.

1.3 Values Guiding Partnerships in Research

We begin with the values identified during the Grey Matters research. These only come with openness, hard work, trust, and practice. They resulted from iterative discussions about what seniors valued as they learned to become researchers. These values apply as well to PaCER and other emancipatory research movements.

• Equal but different: The thoughts and beliefs of everyone are equally valid in negotiating research direction, outcomes, and goals.
• Trust: Trust is hard to earn and is quickly lost. Actively acknowledging the contributions of each participant leads to greater understanding and an openness to hear and learn from others. With familiarity and appreciation comes trust.
• Shared power: Nobody decides for somebody else. Sharing power comes with the expectation to listen and the freedom to express opinions. Each person and, by association, those they represent grow in confidence and capacity through shared power.
• Shared work: To share expertise, there needs to be a willingness to use common language, model, and mentor expertise. Learning to share work necessitates time for reflection on the work of research and joint ownership of successes and failures.

The principles of the international movement of citizen science brings the value of the competencies and contributions of citizens to research. This set of principles were developed in the UK, adapted by the Australian Citizen Science Association and further adapted and shortened for consideration as part of the principles of the SoE in health research. These principles speak to the relationship between academic scientists and citizen/patient scientists.

The Australian Citizen Science Association defines CS as “public participation and collaboration in scientific research with the aim to increase scientific knowledge” (n.d., https://citizenscience.org.au/who-we-are/). These principles have been adapted to focus on what is achieved or valued through conducting citizen science in health research (https://citizenscience.org.au/10-principles-of-citizen-science/).

1. Actively involves citizens in scientific endeavors that generates new knowledge or understanding as contributors, collaborators, or as project leaders. They have a meaningful role in the project.
2. Provides genuine science outcomes such as answering a research question, informing action, or facilitating policy decisions.
3. Benefits science and society through research outputs, widespread evidence to influence policy, and connecting the wider community of science.
4. Develops research questions, methods, gathers and analyzes data, and communicates results that are relevant to the public and science.
5. Engages citizens and populations in how their data are being used and the research, policy or societal outcomes.
6. Increases access to science as a normal part of life.
7. Promotes an open access format and has the potential for data sharing.
8. Acknowledges citizens in project communications, results, and publications.
9. Promotes citizen engagement in communication and evaluation of projects.
10. Promotes the development of legal and ethical practices such as copyright, intellectual property, data sharing agreements, confidentiality, attribution, participant safety and wellbeing, traditional owner consultation, and the environmental impact
    of any activities.

As well, the European Citizen Science Association (ECSA) (https://www.ecsa.ngo) and the Citizen Science 4 Health Working Group (https://www.ecsa.ngo/working-groups/citizen-science-for-health/) websites both offer valuable resources.

These main principles are suggested as ways to ensure justice for those marginalized by the service systems they rely on. The lack of attention to these principles in research enables systemic discrimination, poor representation of end users in research and care, and costly failures because of inadequate sampling. While justice is the end goal of emancipatory science, the following values and structures of power reflect imbalances in:

• Equity: The lack of equity is highlighted by restrictive criteria for recruitment in health research. When exclusion is built into research recruitment, society in general is compromised.
• Diversity: Diversity in recruiting for research leads to essential representation of assets, obstacles, and opportunities for healthcare transformation.
• Inclusion: Inclusion brings a sense of belonging that honours differences in voice, perspectives, and experience, leading to a growth mindset that sees everyone as a contributor to social identity and collective action.
• Access: JEDI-informed research and practice in medicine often includes an additional principle to reflect a primary obstacle in health care as seen in Indigenous and disability access to timely, appropriate, equal health care that is culturally and conditionally informed.

Further information on JEDI is included in Maureen Metcalf’s resource that focuses on JEDI as an antidote for systemic discrimination in healthcare systems (2021, https://www.innovativeleadershipinstitute.com/justice-equity-diversity-and-inclusion-jedi-innovative-health-care-leadership/). It is written for healthcare administrators and staff.

1.4 What Is the Basic Philosophy of This Emancipatory Science?

The philosophy is grounded within social construction traditions that underlie most postmodern emancipatory and critical theory approaches. Social construction asserts that reality is created by interactions of people sharing ideas through language and symbols. There are three main tenets:

• People react in situations according to the meanings they ascribe to those situations.
• Meaning is created and maintained through interaction with others.
• Recognized meaning can be challenged and changed.

This applies to any science that addresses basic issues related to knowledge; what can be known, what are the sources of knowledge and what these sources illuminate. The following philosophy of the new science of engagement in health research is broken down by ontology, epistemology, and methodology.

• Ontology (what we can know). Citizen, family, caregiver, and community experience of personal health and healthcare through their experience, knowledge, and expertise is informed by the contextual wisdom of the community or culture from a patient perspective.
• Epistemology (how we study experience). We use real-life, in vivo narrative data of what the teller thinks happened, is happening, or could happen that enables detailed shared analysis and interpretation with patients and communities. We use real-life, in vivo narrative data of what the teller thinks happened, is happening, or could happen that enables detailed shared analysis and interpretation with patients and communities.
• Methodology (strategies and skills). We do this by training researchers, patients, and community members to engage citizens and communities in participatory, inductive, and narrative methods that are adaptable and flexible.
• Goal of research. We do this to explain and analyze health-related concerns identified by citizens and communities in partnership with research, planning, care, and support teams to promote individual and collective empowerment and support innovation in order to improve health and wellness systems and initiate community-based and social enterprise alternatives.

Patients and communities are fundamentally historical and cultural conceptualizations (Lumen Learning, 2016, https://courses.lumenlearning.com/suny-realworldcomm/chapter/8-1-foundations-of-culture-and-identity/) that are not permanent. These have been different, and they change as expectations change and people encounter relationships that enable them to be in control or to be controlled. Peer research data includes stories (incidents of what is happening), context (the who, where, and when) and properties of data (why, why now, and then) that initiate and track these changes.

Patients construct their understanding of health and healthcare through experience, language and interactions with other patients, caregivers, and healthcare providers, all in the context of values and the systems they are part of. The insights of each group are unique and in this context problems and solutions are detected. However, we are not free to believe anything we want about the world if we care about the consequences of acting on those beliefs.

This brings an action or critical focus into play. Our mandate is to influence health transformation through a patient research voice that is separate but recognized as authentic within conventional medical science traditions. Peer research is generally conducted alongside traditional health or community health research. This includes research about health practice, health systems, and social, cultural, environmental, and population health (pillars 2, 3, and 4 of Canadian health research) (Canadian Institutes of Health Research, 2017, https://cihr-irsc.gc.ca/e/50476.html), and promote methods that are verifiable, accurate, and consistent.

The scope of pillars 3 and 4 expands what we can study from what is happening, to what happened in the past and what could happen in the future. It is here that grounded theory applies. It sets out to study all facets of experience in a careful and scientific way that is grounded in data and tested at each step (iterative) to ensure that the emerging concepts can be defended. This allows us to embrace differences in experience in each person’s history, characteristics and connections, and their aspirations. By sharing and analyzing these experiences, it is possible to create a common understanding that recognizes diversity as part of collective experience.

In an emancipatory science, the focus shifts from quantifiable outcomes to a pragmatic, patient perspective of what works and what doesn’t, to what might be or who we might become. For more easy-to-read information on research paradigms and philosophy, see “Nada’s Island”: Resources for Teachers and Students (Salem Abisamra, 2011, https://www.nadasisland.com/doc/paradigms/#1).

2. Nature of a New Health Science of Engagement

In this section, we move from the foundations to the scope, methodology, and ethics of the science of engagement.

2.1. The Scope of Study of This Science

Most of the patient engagement in health research has been focused on understanding patient experience within the systems and programs that provide care in order to identify priority areas for improvement using quantitative POR research, with increasing use of qualitative data.

The scope of research included in this book is included in the introduction to Section 1 of this manuscript, which documents over 50 years of research that provided a unique incubator to increase the potential for social change. In this, we built on health care and traditions that search for wellness, emancipation, prevention, and community health and to find patients who have become ‘equal opportunity’ health seekers, using healthcare systems as well as complementary, traditional, natural, and even mainstream services.

We encourage readers to visit the PaCER PRISM publication portal for peer research and innovation (University of Calgary, n.d., https://prism.ucalgary.ca/handle/1880/109933) that is part of the O’Brien Institute for Public Health and Cumming School of Medicine PRISM platform. There you will find early examples of peer research student projects and contract research that speak to the scope of peer research. At this stage, the scope is best summed up by the phrase ‘could be.’ As in any new conceptual science, scope is determined by its usefulness, and that is yet to be tested fully.

2.2 The Basic Methodology

Peer methodology is the topic of section two that provides details of published research, narrative, and salutogenic theory informed methods and a compendium of engagement methods for qualitative research informed by emancipatory science and critical theory. This methodology section provides the context and foundations for the strategies, methods, and theory that guide not only the process of engagement but how research is conducted, how risk is reduced, and ways to understand what is acceptable within common research standards. The basic qualitative methodology is inductive and iterative and therefore flexible and adaptable in order to focus on priorities for patient populations in order to promote meaningful engagement.

2.3 Foundations of Peer Research

The methodology of peer research and this science of engagement have been co-designed throughout a 50-year research career of finding ways to include citizens in the research that impacts them as a moral right, a way to use research to inform social change, and increase personal agency through building research capacity. The foundations grew from the realization that institutions diminish personal capacity through a focus on deviance and negative control, whereas shifting the focus to positive behaviours and meaningful occupations changed staff behaviour and patient conduct. As a psychologist I used this to build progressive community health alternatives and research adaptive assessments to staff training. I was hired to design a disability studies program that began as affirmative action and soon adopted emancipatory research methods to build capacity of marginalized groups to challenge systemic discrimination. This led to supporting new social movements run by members of equity-seeking programs to provide support and services to their peers. In studying these movements, I realized that qualitative research could be done through co-design and co-research methods. These methods were used to establish research approaches and methods for peer research as part of community and academic research projects and to train students and patients in these methods to bring a research-informed patient voice based on co-designed peer research methods. The PaCER program is the result of this research path that is defined by an engagement strategy of SET, COLLECT, REFLECT, and now INNOVATE, using a combined qualitative research methodology. These particular methods are Participatory Action Research principles and relationships, narrative data, and grounded theory constant comparison as iterative analysis and interpretation. The nature of this combined peer methodology is part of the final chapter of the book, but the following provides a basic description of the three methods.

• Participatory action research principles: PAR provides the principles and research relationships for the science of engagement and encourages groups to share experience. As action research it allowed us to focus on concerns chosen by patients that they intended to change. I had used PAR throughout most of my career, engaging those relying on social institutions such as education, medicine, and social welfare.
• Narrative data: In new social movements and innovation, stories are analyzed and interpreted to create new collective narratives that focus stories on potential solutions. Narratives are windows on the past; they construct the present and design the future. It is the magic of peer research. The power of narrative enables peers and communities to reclaim their stories as knowledge and examples of expertise.
• Classical grounded analysis: I was trained in quantitative research but found it lacked the nimble creativity needed for the innovative work I seemed to attract. I searched for a qualitative method to study co-research methods and finally discovered classical grounded theory (CGT) that was inductive and, therefore, flexible and adaptive, while being rigorous enough to support a new patient research option. In the beginning, grounded theory was still seen as a challenge to qualitative researchers. Over the intervening years grounded theory constant comparison processes have been taken up by most qualitative researchers who are looking to include inductive approaches and increase the flexibility and rigour of their research.

3. Peer Research Strategy

3.1 The Nature of Data in Peer Research: From Standardization to Diversity

Data has become a commodity to be taken, used and reused, often without the knowledge or permission of the person who provides it. Anonymized digital data is dangerous when it’s used in machine learning, as part of AI technology, because existing data sets not aligned with health care conditions have been used to inform medical algorithms that make decisions about triage, treatment, or research data. While algorithms are important, current machine learning technology can’t overcome the biases and gaps that exist in data without clearly understanding where the data came from, how data can be misleading, and how it will impact the decisions made.

This underlines the essential role of peer research as a means to collect real-life data that expands options for healthcare transformation and big data solutions in healthcare. Just as physician records and notes have informed treatment algorithms, so must real-life patient data be part of algorithm design if they hope to remove the white, young, male biases that plague existing data sets. For example, algorithms in triage have used financial data to make treatment decisions, and facial recognition was based on white, male data sets, which marginalizes all other faces. Auditing algorithms to ensure that they reflect the nature and diversity of the issues is a start, but interdisciplinary audit teams will need to include patients to ensure data integrity and accuracy of algorithms going forward. A flipbook called A Special Power for Good Tech (Ashoka, 2021, https://issuu.com/ashokachangemakers/docs/goodtech_ashoka2020) opens the debate on technology to draw attention to the downsides of purchasing big data sets in research.

The nature of data captures the difference between traditional health science and emancipatory health science. Traditional quantitative data is discrete, observable, numerical, and can be combined and contrasted to create probabilities of difference in clinical trials. Patient-oriented research (POR) has come from this tradition of measures that represent outcomes, experience, satisfaction, and quality of life that can be combined into ‘measurements’ (a collection of data elements that stand for a topic of interest). These elements can be sorted into general categories to quantify and predict differences in conditions, treatments and situations and clinical trials. This marks peer research qualitative data as different from qualitative data within most health disciplines that use transcripts to conduct conceptual or thematic analysis of patient experience. This research is deductive or abductive using the language of formal interviews or questionnaires to inform theoretical debates about patient needs, preferences, and outcomes.

Data within a science of engagement is real-life data in all its complexity and diversity. In vivo, or the language of the person or community, is used throughout the processes of capturing data that consist of notes and stories about what is seen, heard, or shared. These narrative data sets are combined to create abstracted, common, and shared experiences to explain the concerns of the target population. As such, it draws upon grounded theory assertions that ‘all is data,’ and data diversity is needed to understand complex and conflicted social problems to support innovative ideas. When citizens see their experience as knowledge to be shared and analyzed with others, experience becomes valued as representing patient expertise in healthcare, protocols, and policies. Real-life data captures the process of adapting to lives changed by illness, trauma, and loss, and, in the process, opens real-life options for wellness.

The call for diversity casts the data net widely to tap into unheard voices and reinforce different experiences. Peer research within communities (CBPR) breaks these barriers by giving voice to neglected cultures, to build capacity within their culture-based communities. Attention to data diversity from a patient perspective reflects the democratization and realignment of science, in accordance with the RRI and OIS principles.

3.2 An Engagement Strategy

The overall engagement strategy of peer research emerged during the writing of Grey Matters (Marlett & Emes, 2010, https://press.ucalgary.ca/books/9781552382516/) research and quickly became the signature of PaCER. It lays the groundwork for peer research, done by, with, and for patients. Figure 4.1 outlines the basics of a peer research engagement strategy as a method of engagement. This provides the structure for research methods that are appropriate for each stage within an inductive approach that plans iterative data collection after each analysis phase. This engagement strategy is used throughout the next sections of the book to organize methods.

Figure 4.1 Original Engagement Strategy for Peer Research as Part of Peer Research

During SET, peer researchers and advisors contact patients who have experience in the goal of the research to identify concerns that they feel should be researched and are feasible. The concerns are grouped and taken to a SET co-design team of patient consultants and peer researchers to prioritize the concerns for research and provide advice on recruitment, appropriate language, and political barriers related to the main concern. Co-design creates strong links with the field of study, reduces time and effort in starting the research, and motivates the field to become engaged in recruitment. It also is an ideal way to begin with a strong grounding in the main concern, as the focus for early recruitment for the COLLECT phase.

The SET phase could be considered the open coding process within grounded theory that explores the broad scope of the topic to identify the main concern so that the concern can be explained in order to focus on the best explanation to solving the main concern.

In peer research we benefit from the recent Canadian Tri-Council decision that determined that proposals to contact potential users of research were useful in order to understand their concerns before setting the grant proposal (Panel on Research Ethics, 2022b, https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2022.html). This locates SET in the stage of creating proposals for funded research. It has opened the door to patient input in the co-design of all stages of health research.

The COLLECT phase as presented in Figure 4.2 as an adaptable iterative data process. It can be used with most research traditions.

Figure 4.2 COLLECT Phase as an Adaptable Iterative Data Process

Note: Iterative cycles of simultaneous data collection and analysis has been adapted from classical grounded theory.

REFLECT is a group process where the original patient SET co-design team return to review findings and co-create a coherent description or explanation of the main concern and solutions from a patient perspective. They also suggest dissemination, implementation, and innovation options. In the future, the REFLECT process could be the bridge between academic research and social enterprise.

The introduction of new forms of data justify the claim to new science. Practical analysis of real-life data is the key to machine learning for artificial intelligence, just as physician patient records enabled more accurate algorithms.

The INNOVATE stage is introduced in the third section to move peer research to the implementation stage.

3.3 Ethical Frameworks for the Science of Engagement.

As with any new science, the concept of ethics is complex. The first component is overseen by someone qualified to submit and supervise ethics protocols within institutional standards. This is relatively simple when the instructor in research courses or the principal investigator covers both oversight of the research and adherence to ethical standards. Without informed oversight and a science of engagement, peer research has tended to become modified to conduct research for academic researchers or projects using the methods of the principal investigator. This was the impetus behind the development of SoE. Until researchers and teams are comfortable with the research methods of peer research, intrigued by the science of engagement, and willing to supervise research and ethics, it may become difficult to meet the potential of peer research. This chapter targets researchers who are willing to experiment with this new approach and to either sponsor formal patient training or create new options that meet their research needs.

There are four levels of ethics to be addressed in this new science:

1. Ethical procedures and standards differ from country to country, and university to university. In Canada, Tri-Council (natural science and engineering, social science and humanities, and health) standards and training are coordinated. All PaCER students must complete Tri-Council online training before they are admitted to the practicum course (Panel on Research Ethics, 2022a, https://tcps2core.ca/welcome).
2. The ethics of engaging patients in health research is covered in Canada at the national and provincial levels through the Strategies for Patient-Oriented Research (SPOR) through online guides and procedures (Canadian Institutes of Health Research, 2020, https://cihr-irsc.gc.ca/e/51910.html). Readers are invited to look at the up-to-date ethics related to engaging patient partners. Peer researchers must abide by these standards.
3. The ethics of engaging patients in health research has been a major topic of discussion because of the complex ethics related to healthcare. Wiggins and Wilbanks (2019, https://doi.org/10.1080/15265161.2019.1619859) provide an example of research related to the outstanding issues being discussed in bioethics about engaging patients in research.
4. An aspirational declaration of personal ethics of peer researchers was co-designed with a seasoned psychologist familiar with professional aspirational ethics by PaCER interns in the second cohort, as a set of declarations to guide their practice (Marlett et al., 2015, https://doi.org/10.1007/s11136-014-0845-y).
5. Perhaps the most important aspect of peer ethics is the formal statement of ethics done by peer researchers at the end of their research and training projects.

Aspirational Ethics of Engaging in Peer Research

In peer research, participants are equal partners, not anonymous sources to be protected. Therefore, peer research invites opportunities to offer a new look at ethics from a fresh perspective that highlights engagement from insider and outsider perspectives.

The following basic values were adapted from the International Declaration of Ethical Principles for Psychology that was current at the time. Dr. Jean Pettifor, the author of this declaration, conducted the ethics of engagement workshops with the second PaCER cohort. The ethics of engagement provide ethical standards to hold student interns and peer researchers accountable.

After this ethic standard is presented, it will be followed by the ethical review of a project by PaCER Interns Wellspring Cancer program in Calgary, Alberta.

Figure 4.3 Personal Ethics of Peer Researchers

Ethics Report from Peer Researchers

The last and most effective way of understanding the ethical component of peer research is to hear the deliberation of peer researchers themselves in their peer research roles after their internship research was completed. This group was particularly attuned to the importance of ethics because of their involvement in developing the ethics of engagement principles with the staff, board, survivor volunteers, and members.

The interns from the final Wellspring report emphasized five issues: the search for quality data, negotiating the engagement process, confidentiality, referencing, and transparency.

They employed several strategies to raise the credibility and trustworthiness of the study and ensure quality data was collected. In patient engagement research methodology the researcher is both an instrument and participant, so great care had to be taken to note any issues that might influence the collection or analysis of data. The interns leveraged this unique position to raise the trustworthiness of the study. Because of the common experience between the patients and researchers, there was a natural trust and openness.

Researchers worked together to examine and discuss the similarities, differences, and patterns within the data, to help eliminate individual researcher bias. Re-examination of source material, including audio recordings, flip-charts, analytical memos, and notes was an essential part of this process. They examined this from different perspectives, and made good use of the PaCER ‘reflect’ focus group to ensure that the questions and themes were adequate.

The negotiation of engagement boundaries allowed the interns to move from being interested researchers into what they described as a “charmed space where peers were sharing their experience of lives changed by the diagnosis of cancer.” This process allowed for the co-creation of knowledge between researchers and patients. The shared understanding was facilitated by the researchers’ culture and experience of health seeking and health care. This provided a different quality of research to traditional patient engagement; the latter of which can lead to strategies not well informed by patient perspectives, or even alienate patients. The patient engagement research method allowed access into a private world available to few researchers.

Participants came forward in response to communication from Wellspring and word of mouth. The confidentiality of patients was protected through a separate recording and storing of patient metadata, and the aggregation of potentially identifying markers. Other participant demographic information was not recorded for the study, and all research was carried out in alignment with Wellspring’s confidentiality agreement.

The researchers realized that in listening to their participants, they were being invited into their world to understand their reality, and the experiences and difficulties they confronted living with cancer. The research team acknowledged how their input as patients themselves was also a source of data. To maintain transparency, they chose to report comments as referenced to the person saying it, including those of the research team members. Due to the methodology of patient engagement research, their research voice carried a new and distinct perspective, which asked questions that came directly from patients.

The research team noted that these ethical guidelines are not only important in themselves but also improve the quality of the research, stating that “It is not only about preparing to be ethical but reflecting on how being ethical strengthens the understanding and use of the intrinsic power of research conducted by peers.”

4. Relevance and Impact of a New Health Science

This section moves from the practice of science to the impact of science to look at the questions about usefulness of the science, its relationship to existing theory, innovation, modifiability, and options for training and employment. This section will be subject to change as the science is debated and tested.

4.1. Does This Science Open the Field to New Sources of Data?

Changing demographics, costs and the use of technology require new ways of delivering healthcare (e.g., upstream, patient partnerships, computer networks). These new interventions and social organizations need an evidence base that can inform and respond to rapid change. The mandate for any new science is to be innovative and rigorous in exploring new sources of data and data systems, analyses and ways to bring engagement into interpretation and thinking about solutions to problems in ways that bring unheard voices to the forefront. To date, some of these new data sources include:

• Peer-to-peer data analysis using language of the participants instead of theoretical codes; this provides a real-life data set.
• Incidents and ‘story’ as units of analysis that can be used throughout the research phases.
• The story template replaced transcription and first analysis. Stories can also be taken apart or combined.
• Common or shared stories can be used as data using story as data for secondary analysis.

During participant observations, we created separate observer and participant roles to introduce opportunities for checking reliability of observed data and identifying bias:

• One peer researcher acted as the observer taking notes about actions, relationships, stories.
• A second peer researcher participated in the activity and immediately after wrote a memo about what happened from that perspective.
• The observer and participant shared findings noting differences and similarities and prepared a common report for the rest of the peer research team.
• The observer and participant shared ideas about the process and what they learned.

The following sources of data became common during patient-led research and peer research.

• The use of incidental and opportunistic meetings and events as data collection opportunities created opportunities for natural brainstorming and priority setting.
• Shared analysis with participant co-researchers during SET and COLLECT research activities created opportunities to include personal interpretation and meaning.

These new sources of data led to real-life theory using the concept of working theory as an alternate way of dealing with conceptual theory. It represented a real-life conceptualization of the solution to main concerns of a population that was expected to adapt to new situations or populations. It reinforces the focus on individual differences and meanings held within groups or populations.

4.2. How Have Theories Supported the Development of Science and Does Science Produce Theory?

All new science uses existing theory and methods in the beginning. Existing medical theory relates to the causes of disease, vulnerability, and fallibility. This works well within the first pillar of health, which locates health research in the causes of disease. It also informs clinical trials, treatment systems, and, finally, a catch-all category that includes prevention, promotion, cultures, and communities. Graffigna and Barello (2018, https://doi.org/10.2147/ppa.s145646) provide an example of potential theory within the realm of health science.

If there is to be an emancipatory science of engagement in health, we will need to adapt theory from other fields and create new theories to prompt debate and experimentation. This has been a major focus of the writing of this book, and it has been possible to update a number of theories that have been proposed in earlier publications. Several new theories are also proposed.

All three sections begin with a list of theories that inform the strategies and methods in the subsequent chapters. This was done to provide a theoretical frame for the chapters. Social construction has guided the development and adaptation of the majority of theories in this book because it enables theory to emerge from the people, activities, and values.

The theories presented in Table 4.2 are included throughout the manuscript. The table presents an overview of the theories used, according to the stages of evolution of peer research. Each of these theories is discussed in detail throughout the book and links are provided here to find those you are interested in.

4.3. What Makes This Science Innovative and Able to Sustain Innovation and Social Change?

The new role of peer researcher becomes a bridge between unheard populations and health research, and between conventional and emancipatory social sciences. In the process, it opens the door to innovation and social enterprise to take innovative research findings to commercialization and social innovation.

PaCER began as a Catalyst grant to test the feasibility of peer research, and social enterprise seemed the best alternative for PaCER after the initial Catalyst grant ran out. We were able to do this because of partnerships with the SCNs, skilled PaCERs, colleagues, and the Cumming School of Medicine resources and innovative business advisors. Research projects provided a way to attract researchers who were interested in training and employing peer researchers. These early adopters covered the basic costs of training and paying patients to work on research projects. This also allowed us to introduce and incubate new methods to solve patient-identified problems with the contracting research team.

4.4. How Does This Research Support and Challenge Current Practice?

The main changes in current patient engagement practices have come from the graduates of the training program who go on to become researchers, advisors, patient engagement facilitators, or coordinators in health systems. They bring a unique blend of advocacy, engagement skills, research expertise, project management, and leadership skills. They worked alongside research teams, SCNs, health associations, and professional bodies, clinics, and regional health authorities. They are employed as patient research leads and coordinators on provincial and national team grants. In these roles, they conduct research about current practice and bring fresh insight to patient perspectives about changes needed and recommendations for change.

The first two years of PaCER had Catalyst funding from the Canadian Institutes of Health Innovation that covered basic infrastructure to test the training program. The five internship projects broke ground as the Strategic Clinical Networks began. Peer research graduates were able to change patient roles by understanding, explaining, and suggesting changes to current practice from a research perspective. The following represent the funded projects of PaCER as part of innovation funding. They are included in a summary of the innovation projects as part of the resources for the book.

• Family practice management of undiagnosed arthritic pain.
• The processes of waiting for hip replacement.
• Community support for surgery after care for immigrant populations.
• The need for ways to understanding patient experience in chronic and complex health systems.
• The documentation of what works and how, in a community-based cancer wellness centre.

The first social enterprise research contracts that were negotiated after the grant funding ceased, were influential in informing policies for end-of-life care for families, the impact of the safe surgery checklist on patient feelings of security about their surgery, the development of community models of prevention to reduce surgery for arthritis and Indigenous rheumatology, and online support for teachers with chronic arthritic conditions. In each of these, current practices and future options were influenced by peer research.

Training contracts also acted as social enterprises because of the sponsorship model to cover tuition. The first contracts led to published research on how youth concussion impacted the use of sensory deprivation; support for parents of stillborn babies; losing identity when diagnosed with mental health concerns; trauma of parents and their children who take their children to the emergency rooms for mental health concerns.

The most recent projects included four Indigenous projects related to cancer prevention along with mental health support during dialysis, and three projects related to inflammatory bowel disease. Each project was done in collaboration with health systems, national research teams, community agencies, and professional organizations. Check PaCER projects on the PRISM platform (https://prism.ucalgary.ca/home) or the PaCER team projects page (https://www.ucalgary.ca/patient-community-engagement-research/research/pacer-team-projects).

The impact of peer research on practice has been demonstrated through three independent evaluations of PaCER as a social enterprise. The first evaluated the outcomes of the Catalyst grant and noted the following:

• Graduates designed and completed ethics proposals and group research projects, including writing final reports from a patient perspective. Most joined the SCNs or health related committees.
• This work was published as a grounded theory that outlined the process of merging patient and researcher identities.
• Key stakeholders and researchers who were affiliated with the grant originally expressed serious concerns about the wisdom of teaching patients to be researchers. The follow up interviews recognized that value of peer research and anticipated future developments.
• The partnership proved successful in promoting innovation and new roles for patients as leaders in engagement and research.

The second evaluation was conducted by the Alberta health research team and analyzed by the O’Brien Institute of Public Health. This was done two years after the social enterprise was established, and it led to significant changes in curriculum that shifted from experiential learning to course structures.

• Students were looking for more structure instead of the year-long internship.
• The lack of infrastructure created uncertainty in funding, expectations, and reporting.
• While the researchers who had used the training and research services were intrigued and would recommend the service to others, they too noted the lack of infrastructure.

The third evaluation was conducted by the research liaison team representing the SCN’s, Health Researchers and Disability Studies, using the Canadian Academy of Health Sciences criteria of social impact in health research after a course structure had been established (CAHS, n.d., https://cahs-acss.ca/making-an-impact-a-preferred-framework-and-indicators-to-measure-returns-on-investment-in-health-research/). The innovative partnership when twinned with the SCNs achieved an impact in three of the five categories indicated by the CAHS impact evaluation of health research that were possible given the short tenure of the PaCER program.

• Advancing knowledge through creating and sharing research done by and for patients, about peer research and relationships with researchers, healthcare providers, and planning. This is evident in the PaCER/PRISM publishing hub projects and links to publications.
• Building capacity of patients to take up new roles in health research, care, and planning and the capacity of researchers, planners, and administrators to work alongside patients to create a new patient research voice. This is evident in the success of graduates.
• Informing health decisions and healthcare as patients and the products of their work have impacted practice and policy making.

4.5. Modifiability and Transferability

Modifiability is inherent in peer research. One of the features of this science is that it responds to and adapts to cultures, conditions, and contexts of participants and communities. The essence of the engagement strategy for peer research is its ability to work alongside health research pillars.

Transferability has been apparent within the scope of the province’s Strategic Clinical Networks and through national teams who support training and research within their provincial organizations. Publications of research projects and the publication of this book will hopefully spawn debate and collaboration, to spread the concepts of this science to new places, systems, professions, and patient engagement initiatives.

4.6 What Are the Training Opportunities?

Original concerns voiced by health researchers and funders in the early development of peer research included the following general concerns that are common before training leads to new patient research roles.

• Patients are not capable of understanding clinical health research.
• Patien-experience research is already being done by health professionals who are skilled in what patients need and what patients experience.
• Training patients is not equivalent to health research training through university graduate courses.

The following phases of co-design of training acted as an incubator to test the feasibility of patients being trained as researchers that provided the foundation for training opportunities.

• The first two cohorts were funded to test if it was possible to train patients using the Grey Matters curriculum. A year-long internship was designed as an experiential co-designed learning process that moved through the skills associated with being a researcher and patient at the same time, using the SET COLLECT REFLECT.
• The first year-long cohorts continued to revise and strengthen the curriculum associated with the experiential model. This was evaluated and the training moved to a three-course training program. The first course focused on the fundamentals of peer research ending with a research ethics proposal. The second course focused on the skills needed to conduct research. And the third (two-course equivalent) included conducting research with academic oversight of an internship to conduct their research after ethics approval.
• As the training program became known and graduates were in demand to conduct contracted peer research, the courses were modified based on the feedback from contractors. This led to social enterprise models of both training and conducting research.
• When a large Indigenous grant overwhelmed the existing social enterprise model, the training moved to the department of Continuing Education, who were able to adapt the curriculum for distance education. PaCER is now a university-recognized career diploma that still operates on a sponsorship model but is considering individual tuition.
• The current PaCER program includes up to four online classes a year, each with three to five sponsorships.

Originally the only other training option was the European Patients Academy on Therapeutic Innovation (EUPATI, n.d., https://eupati.eu) to create a research methodology and training program to enable patients and community members to conduct patient technology-based research. Given the escalating importance of technology in healthcare, it may be possible to encourage EUPATI fellows to learn research approaches to engage patients and communities in academic and innovation research. The open courses of EUPATI would also enrich the research and development foundations of academic and innovation research in ways that would expand PaCER graduate capacity to work as part of innovation and implementation teams related to technology.

EUPATI has updated their online courses to encourage open access courses for patients, patient organizations, health researchers, and healthcare providers. They are also available for general interest and certification for those who officially enrol in courses and pass an online test. This provides a strong educational platform about medical innovation and development. It is accessible worldwide, providing up-to-date information so that patients are prepared to become engaged in research and development. Graduates of the training become EUPATI fellows and are matched with projects to represent patients from an informed perspective. New courses in digital devices and digital health will ensure that the digital transformation of healthcare includes informed patient input.

Most national health authorities now have courses to promote patient involvement in health research, based on short courses for patients to learn advising and partnership skills. Many now also provide training support for graduate students in healthcare-related programs. For example, the Canadian National Training Entity, as part of the national Strategies for Patient-Oriented Research, has created a national training platform for patient-oriented research (Canadian Institutes of Health Research, 2021, https://www.canada.ca/en/institutes-health-research/news/2021/06/government-of-canada-creates-national-training-platform-for-patient-oriented-research.html). The UK initiated a national patient engagement in health research and healthcare program and has been a leader in evaluating the impact in healthcare (Russell et al., 2020, https://doi.org/10.1186/s40900-020-00239-w). The Rand Corporation continues to support patient and public involvement in research (Ball et al., 2019, https://www.rand.org/pubs/research_reports/RR2678.html) and provides a basic guide to working with patient advisors and partners. This has done much to create common language and values for patient and public engagement. See also A Researcher’s Guide to Patient and Public Involvement (Turk et al., 2017).

The development of the science of engagement draws specifically on the following training examples.

1. Grey Matters (Marlett & Emes, 2010, https://press.ucalgary.ca/books/9781552382516/): Research and curriculum that is referenced as part of this manuscript describes the development of a curriculum for seniors and others with lived experience related to health and community well-being. This has been used as a curriculum as part of the PaCER program.
2. PaCER curriculum development and incubation led to the PaCER program of studies, offered as a distance professional certificate by Continuing Education. This is basically an internship to teach patients how to conduct peer research, as part of research teams, as contract research or as patient partners with researchers interested in increasing a patient research voice. See also Alberta SPOR Support Unit (AbSPORU) for more training opportunities (https://absporu.ca/patient-engagement/pacer/).
3. The peer research documents of the Wellesley Institute (Roche et al., 2010, https://www.wellesleyinstitute.com/publications/peer-research-in-action/) provide an important look at the roles of community members as co-researchers and the management of peer research. The peer research job descriptions (in Chapter 2.5) are included directly, because they provide a common set of responsibilities and language while planning and managing peer research.
4. The Peer Worker Support Project (Howard, 2015, https://www.cahr-acrv.ca/wp-content/uploads/2012/12/Peer-Worker-Support-Project-Final-Report.pdf) is an important research report on the training needs of peer support workers in British Columbia Canada involved in research, healthcare, and community support to help them negotiate personal and work boundaries. While not specific to peer research, this resource provides in-depth guidelines for those projects navigating the bridge between rigorous research and community capacity. This aligns with the PaCER practice of hiring PaCER leads who manage a peer research team of peer research assistants. Leads and academics support and plan together.
5. Changemaker courses are available in most countries through universities, colleges, and schools, as part of the Ashoka international network of fellows, who are social entrepreneurs (see First Book, n.d., https://firstbook.org/solutions/time-for-change/). These credit courses build community capacity through social enterprise models and design thinking innovation. Ashoka also is a modern example of open innovation in science that builds community, government and business capacity. They are leaders in a future that is more community focused.
6. Citizen science has been largely a science platform for researchers who teach citizens to conduct specific research tasks as part of their research projects. The European Citizen Science Academy training platform (https://moodle.eu-citizen.science), however, includes a large range of courses for researchers and citizens. The inclusion of citizen led research in emerging CS projects may lead to joint ventures for CS and SoE.

As the science of engagement helps to provide a foundation for peer and community research, the options for education and training will hopefully expand and diversify.

4.7. Employment and Business Opportunities

The employment of patient researchers means payment or compensation for taking part in research. From the very beginning of PaCER, graduates were paid comparable wages as research leads and research assistants. This created, and still creates much debate about paying patients who are usually expected to be willing to work as volunteers as patient advisors.

This is a minefield that includes university research financing, provincial and national grant regulations, innovation funding criteria, and venture capital. It is beyond the scope of this book to explore all the avenues, because payment options are ephemeral and situation specific. Until health research grants include criteria for paying peer researchers and peer mentors, along with budget guidance, each project will have to create its own solutions.

The payment of patient advisors and partners is tenuous, with some paying by the hour (ranging from $10 to $50 per hour). Other projects pay honoraria plus expenses. Any payment might conflict with assured income regulations that set limits for income and are difficult to change. Managing payment for part-time peer research assistants is draconian, and pay may be deducted from their benefit allowances or they may be considered no longer eligible. Patients who, by nature of their condition, are unable to work full-time but are willing to use their expertise to improve healthcare systems face serious obstacles because they can’t continue if payment is involved. The decision for patients with chronic and declining health presents too many risks. We need the expertise of these patients, but more often, they choose not to stay involved because of the increased stress about losing basic incomes or allowances.

This is even more problematic with contract peer research. PaCER became a social enterprise when the initial grant ran out and there was a demand for peer research. The original payment plan enabled people to plan their working time, but the wages were determined by existing pay scales for trained research leads and research assistants within the university.

Our internal guidelines were $40 per hour for lead researchers and $20 for research assistants. After many approaches to payment, the final solution with PaCER meant that lead researchers became vendors (contractors) who paid all salaries and expenses related to the contract. The solution for research mentors has included sessional or course-specific teaching assistant variations.

Regardless of the patient role, social enterprise contracts within academic settings need to be carefully considered to ensure that overhead costs are included as well as salary ranges. As the scope of research expands in citizen health science and Ashoka changemaking, social innovation and social enterprise initiatives may be needed, and the payment of patients and community members will need to be addressed.

The power of social enterprise is that projects begin with the expectation that they will become economically viable. These may also use the following payment guidelines:

1. A participant in research brings lived experience and willingness to share this experience as part of research processes. Payment can be by honoraria, expenses, or negotiated pay schedules.
2. An advisor brings patient experience or community context to the research team. Some projects use negotiated payments that range from $20 to $50 per hour for specific responsibilities. The research team provides research training as required, and if the advisor is expected to have research or team skills, this should be recognized.
3. A research partner is trained, either through specialized programs of study (the national curriculum, HIV training, PaCER) and/or by the research team to take part in specific research activities as part of grants, projects, and funded research. Payment seems to be related solely to the project’s ability to pay partners as part of grants for a part of social enterprise development and business development.
4. A peer research assistant is formally trained in engagement research methods and is hired to conduct specific research functions as part of research grants and projects, with oversight by academic researchers. In a social enterprise, the research assistant would be part of the innovation team and the business development.
5. A peer researcher is formally trained in engagement research methods and project management in order to co-design, conduct, and manage research as part of an academic team. In a social enterprise such as PaCER, the research lead is considered an independent project manager with the responsibility to hire and oversee peer research projects. In the future, these peer research teams would be trained to support both citizen science projects and social enterprise.

The classification of citizens, patients, and community members is based on the current range of options. This categorization also attempts to respond to the issues related to payment. The issues of payment, compensation, and honoraria are beyond the scope of this science, although the move to recognize patient expertise is inevitable.

Although this is still nascent, there are strong indications that the science and peer researchers trained in this science will lead to a variety of career opportunities related to patient engagement and contributions to health reform. We end this chapter with several examples of emerging or existing careers that are available.

This science will be of use in existing patient engagement initiatives such as patient-oriented and patient-engaged research projects where peer researchers lead and peer research assistants are employed to conduct POR interviews. Citizen organizations interested in health are growing in Canada and internationally. Health promotion and health services units in universities and Ashoka programs are expanding patient engagement opportunities for those trained in peer research and peer support.

In addition, as this book unfolded, it became clear that in health there are two forgotten populations, not one. While patients have been the clear focus, frontline and community support staff—from physicians and nurses to personal support workers and teachers—have been identified as peers as well. Some of the most impactful research we conducted included physicians researching physician experience, in conjunction with patients researching patient experience. We also see graduate PaCER researchers who are academics now using peer research to train patients to work as colleagues.

The science of engagement provides opportunities for researchers to consider ways to include patients and community members as colleagues in research. The issues of employment of trained peer researchers rests with those able to learn about, support and pay for peer research.

Summary

A science of engagement has been proposed to enable a broad range of researchers, planners, providers, and patients to see patient engagement as more than a moral imperative. It is offered to encourage vigorous debate, study, and, hopefully, challenge and change.

You might begin this study by choosing one of the sections that is most relevant to your current work and consider how having a science framework might inform your thoughts or practice. Each element of the theory is covered in detail in the chapters. You might link to the chapters that whet your appetite for innovative partnerships with patients and communities. Whatever your preference, the following questions might help guide your decisions.

Questions for Discussion

1. What individual and community resources do you have access to currently and how might they become engaged? E.g., ‘expert patients,’ advisors, or researchers who also identify as patients.
2. Do you have an existing team that is interested in engaging patients and communities in your research? Survey their interests in studying chapters or sections and set up some preliminary study groups to apply the chapter to your situation. Explore how to introduce ideas and options for experimenting with ideas. The publication platform is designed to interact with the author or representatives of peer research training.
3. Do you have students who can commit time to projects as part of their training or volunteering? How might they become part of a design team?
4. What funds do you have access to if you want to train some of the patients and community members to become peer researchers?
5. Connect with AbSPOR Patient Engagement or Continuing Education to explore training options and how to contract projects.

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