1.4. An Emancipatory Health Science of Engagement

Emancipatory social science is a collective project with a moral purpose: elimination of oppression and the creation of the conditions for human flourishing. It includes problems of systemic discrimination, imagining viable solutions and preparing for alternative futures and change.

If the only tool you have is a hammer, you see every problem as a nail. (Maslow)

Highlights

• The increasing need for 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 is relevant, theory development, support and sustain innovation, support and challenge current practice, training and career development

Why is a Science of Engagement in health research and innovation needed?

A Science of Engagement (SoE) in health research and innovation attempts to provide structure and strategies related to the mandate of patient engagement within current health systems and to prepare for the rapidly changing landscape of healthcare. It also creates space for new flexible and collaborative forms of research to solve common problems at a community level. As an emancipatory science platform it is democratic, collaborative and action oriented, recognizing the past and present strengths while being open to alternative futures with new partners and visions of care.

This need for a Science of Engagement is supported by a number of new collaborative and open science foundations. Here we focus on two new social movements: Citizen Science (CS) and the Open Innovation in Science (OIS) that support new collaborative relationships.

Citizen Science, has re-emerged along with technical advances in information and connectivity and distributed computing of the third industrial revolution while poised to support advances in physical, biological and digital technologies that are changing the face of medicine and the roles of patients.

CS is a tool of academic and professional researchers who are committed to democratizing science by recruiting and working with citizen scientists. This broadens the range and scope of research while benefiting from local wisdom, citizen motivation and expertise. Citizen Science was among the first research platforms to embrace the use of new communication (crowdsourcing) , physical (3-D printing and computing (distributed analysis) technologies. These new technologies and the researchers using them are creating new products and processes related to social innovation and health. Peer research is a citizen science approach that collaborates with academic and professional research, is democratic and innovative.

Open Innovation in science (Beck, 2020, The Open Innovation in Science research field: a collaborative conceptualisation approach) 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 approaches. Open Science recognizes achievements in open access publishing and access to data, transparent and open review of publications. It opens debates about initiating and managing knowledge flows across organizational and disciplinary boundaries and all stages of the research enterprise and at the individual, team, organization, field, societal and policy levels.

Science of Engagement within Citizen Science and OIS

Of particular importance to SoE is recognition of the need for collaboration between academic scientists and actors such as citizens, companies, policy makers. Peer research of SoE extends this to research conducted by trained patient and community researchers in order to ‘catalyse creativity, learning to achieve different and potentially more valuable scientific outcomes (Beck).’ Since SoE supports investment in training patients to engage other patients as part of collaborative research projects it creates conceptual links between SoE, CS, OIS, especially in areas related future technology and innovation. As OIS continues to promote collaboration and creativity, SoE will continue to look for spaces within open science to introduce an interdisciplinary, collaborative research methodology designed specifically for patients and citizens.

SoE has been nurtured in a community health sciences department at the University of Calgary that embraces many forms of research from big data analytics to personal autoethnographies. It embraces health services research, qualitative research, ethnographic studies, participant action research within indigenous, immigrant and refugee cultures and institutional ethnographies of health related bureaucracies. This multi research reality has been an ideal foundation for a patient experience research incubator. Community health and health promotion research were the first to address the need for innovative and emancipatory constructivist research (Labont, story/dialogue method for health promotion knowledge development and evaluation Health Education Research, Oxford Academic) that has made significant progress in creating storied methods for practitioners, these types of methods might also be useful in collaborative groups of citizens and community practitioners or community facing health professionals.

I feel quite at home in this environment, coming from the rigors of positivist research within the early days of operant conditioning, community based development research, discourse analysis, social construction and finally grounded theory- a methodology that works comfortably with all data and research methodologies.

While including life experts in research may seem new, citizens once were scientists. Their role became sidelined when science became professionalized and affiliated with universities and governments that used grant structures to promote and manage research. It didn’t take long before there was resistance to the exclusivity of academic research that created barriers between science and society. Skepticism of the truth claims of research led to pressure to democratize science and public participation. Emancipatory social science uses scientific knowledge to equalize power imbalances within society, in order to create new partnerships for transformation. This emancipatory science of engagement in health research stands on the shoulders of participant action, critical, narrative and grounded theory as manifest within feminist and cultural research, community based participatory research, and Citizen Science.

New tools must be both rigorous enough to impact current research directions while meeting our moral responsibilities to society to produce organizational structures based on wellness, compassion and a creative spirit. We need to form nimble and responsive partnerships that are able to learn new ways of knowing while providing digital forms of care combining physical, biological and digital technologies. Artificial Intelligence and deep machine learning are already providing support in precision medicine, pragmatic clinical trials and digital homecare.

Most of these advances require personalized approaches and the ability of patients and their families to become more involved in both prevention and chronic health management that includes responding to risk factors, personal health care, decision making, planning and monitoring the effectiveness of treatment and care plans.

This emancipatory science of engagement in health took shape through the study of new sciences:  Feminist Social Science Feminist philosophy of science: history, contributions, and challenges , Indigenous science Chapter 6 – Indigenous Science: Proven, Practical and Timeless ),  the re-emergence of citizen science  (Strausser https://sciencetechnologystudies.journal.fi/article/view/60425/37504  ), Sustainability Science (Intern ational Encyclopedia of Geography: People, the Earth, Environment and Technology: Sustainability Science ) and Global Health sciences.  These new sciences intersect through social justice themes and critical theory foundations of disability studies, and supported by our National Strategy for Patient Oriented research Strategy for Patient-Oriented Research - Patient Engagement Framework - CIHR  and our Strategic Clinical Networks™ which promote collaborative, open science and innovation.

Credit where credit is due: the pioneers of an Emancipatory Social Science

As an emancipatory social science, we have the benefit of the history and experiences of new social movements in health that have been the pioneers of emancipatory study and research. In this category the following persons with lived experience (PWLE) have become innovators and experts in health and health care. PWLE are a large, diverse group, experiencing disability, mental health and addictions, aging, disadvantaged or chronic illness and groups experiencing access and equity issues related to Indigenous, racial, gender, religious and culture.

• Chronic and complex care patients represent a large segment of health care users and as such have been involved in projects designed to improve care while reducing costs through creating new nursing and paramedic roles, creating allied health chronic care teams in primary care, community health programs. In the last few years, new unified online health care models such as Maple, https://www.getmaple.ca/for-you-family/how-it-works/ are providing personal healthcare and wellness supports that include physician care, local home care, specialist services.
  
  Many patients have learned to curate their own health records, coordinate teams and monitor their treatments and conditions. Options such as Zamplo are emerging to update the ability of patients to curate their data, connect with others and with research. I have included a news report here to capture the power of patients to become innovators in digital health futures: Using Technology to Put More Power in the Hands of Patients, the Globe and Mail
• Disability: focus on rights, function and adaptation PWLE of disabling conditions were among the first to challenge the medicalization of their lives. They became champions of inclusion and rights, innovators of adaptive technologies and social organizations. Persons living with developmental disabilities, their families and 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 and their funding. They were early inventors and adopters of many of the technologies we commonly use today – from telecommunications, oral transcriptions, robots.
• Aging: life expertise and social capital The initiation of mandatory retirement of the baby boomers, created a discourse of aging that justified terms such as decrepitude. The study of seniors' resilience that is highlighted in the first chapter demonstrates the depth of senior’s resilience and social capital Grey Matters: a guide to collaborative research with seniors . ‘It is time to see aging adults not as a threat to economic stability, but as a source of social capital, capable of finding new solutions to the challenges that society faces’. As the values and beliefs surrounding aging are dismissed as part of anticipated life expectancy stretches to 130 plus, we can expect the social and economic capital of seniors to re-emerge. Adaptive devices and robots will become common to manage challenges that can’t be mitigated by implants and artificial replacements.
• Mental health: peer support, social enterprise, neurological and therapeutic digital technologies have been led in Canada by the survivors of ‘deinstitutionalization’ who banded together, adopting recovery models of self help and started social enterprises that forced social change. Bell Let’s Talk campaigns and MAD theory and research initiatives challenge current research practices with research conducted by those living with knowledge of mental illness. This began with SURE in the UK and more recently with Canadian MAD studies Sanism, 'Mental Health', and Social Work/Education: A Review and Call to Action. The field of implants for mood disorders however highlights the privacy and control issues inherent in many digital health emerging treatments. It is imperative that patient peer research become a permanent feature in digital techniques. Alcoholics Anonymous was a pioneer in peer support and has spawned many related treatment options which combine rigorous attendance at meetings, sponsor support and the role of a higher power to bolster personal strength.
• Indigenous science, Participant Action Research was forged in low income countries and forms the base of participatory research in health promotion and community development. Traditional science of the land and ancesters. Indigenous education, healing and the environmental stewardship are becoming recognized during this period of pandemics, climate disasters and loss of identity. PaCER research with its focus on story, collaboration, adapting and creating methods benefited from indigenous ways of knowing. Research led by communities and elders leads the way to participatory research
• Racial inequality: civil rights, race based and religious stigmatization, systemic discrimination, reconciliation and antistigma approaches Keith Banting and Debra Thompson’s insightful discussion of racial inequality in Canada as part of the Double Blind task force report provides a powerful expose of the factors that challenge our international reputation for tolerance and social equity. The landscape of Canadian inequality is changing rapidly as the dialogue shifts from societies needing to make things right to recognition of the rights of communities to determine their own relationships within Canada. The search for recognition and equality will lead to new forms not only of governance but of health care and research.
• Economically disadvantaged 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 and particularly policy tools to ‘problematize, 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 all of the rest of social determinants drop off the table.

The above list of contributors to emancipatory science is not intended to marginalize the rest of society but to acknowledge that they have been the one’s in the trenches that have born the brunt of systemic discrimination and challenged existing practices to find space to flourish.

The need for an emancipatory science in health research and innovation

Patient Engagement inherits moral and economic promises of emancipation. Research, done by, with, and for patients creates space for new vision, real life patient perspectives, patients as researchers and agents for change. The following are some of the specific contributions that patients bring to SoE and healthcare.

• Patient and Community Expertise. With experience comes important knowledge and expertise of how care is delivered and how it can be changed. Patients are perhaps the best source of data about roles, processes, pathways and transitions because they experience care across systems, services and health care providers. While the current focus on care pathways and modelling require standardized information to create accurate models, real life experience provides data diversity needed to inform machine learning.
  • Apps to record consultations and meetings with health professionals such as the App recently released by AHS that can be given to family members
  • Zamplo.org, a platform developed by the husband of a cancer patient brings health records, health planning, connection with others sharing similar challenges, and most importantly, patients can become their own scientists, choosing treatment, activities or supplements.
• Patient complexity. It is difficult to find a patient over the age of 40 with just one condition. We are currently dealing with a dramatic increase in the incidence of seniors within our population and this is creating a surge in complex and chronic care medicine (CCM) and yet we continue to study and provide care within distinct care silos. As primary care pivots to provide CCM, patients can become our advisors on living with complexity. This complexity relates to the JEDI principle of diversity that is called for in most variations of Open Science and Open Innovation to reflect the essential diversity that could inform biological medicine to break from narrow criteria in research that adds to systemic discrimination.
• The diversity of families, communities and cultures. The myth of the nuclear family is giving way to fluid relationships. This is most evident in the current focus on indigenous science is clarifying the importance of traditional health culture and practice as we continue to include diversity as criteria for exclusion in conventional research. New forms of health research, such as pragmatic clinical trials include realistic inclusion of diversity, be that by gender, status, race or culture to test new pharmaceuticals, appliances and technologies. By broadening health research to include all sectors within a patient landscape, we are open to more inclusive innovation.
• The growing uptake of technology by patients and community options. Patients and communities see technology as a way to assert more control over aspects of health that they are interested in. They were early adopters of online medical information, peer support through computer networks. They are early adopters of wearables that track activities and health signs. They are interested in how technology can reduce the burden of their current and expected health. Citizen Science uses information and communication technologies to collect and share data, analyze data and make new technologies. The fourth generation of technology sees physical, biological and digital technologies in new ways that will change the identity of patients and the role of communities and social enterprise as technology of telehealth becomes the hub of health for populations.

How a science of engagement brings new strengths to healthcare.

The following list addresses how the current role of patients could change if the SoE became a feature of health research and innovation. While this focuses on research and innovation, these are the drivers of healthcare transformation. These categories also include how EDI principles of equity, diversity and inclusion grow through the following actions that balance power. The categories also provide a glimpse into how the legitimacy of a science of engagement fosters personal growth and collaboration.

• Reframing the role of “patient” to become a key stakeholder, partner and colleague in health and health care - This includes the EDI values of Equity, gaining social identity as a stakeholder and, Inclusion as part of the team. Active and competent patients who learn how to conduct action based research will challenge bureaucratic systems and create the conditions wherein patients can reclaim the decisions that impact their lives. For example, PaCER emancipatory and action research, works alongside health care systems to promote changes in roles, relationships, organizations and policy. Patients could gain equity through technology but the threat of loss of control is also a reality.
• Demonstrating the social impact of patient engagement in research. Justice is the result of EDI and denotes a balancing of power. Patient engagement will remain a moral imperative or a tool to improve economic efficiency, unless there is a way to capture the social impact of engaging patients and communities to guide research and practice. Unless this is done by patients it will remain another situation where professionals speak for patients. Balancing power is hard, particularly in healthcare. We found that developing champions and safe working spaces that promote opportunities to plan, act, accomplish and learn together through the Strategic Clinical Networks enabled the beginning of shared power. It also worked when patients were able to present their research to guide research grants and inform research directions.
• Promoting and informing social innovation and social enterprise in health, health care, planning and research. This focuses on Inclusion - patients become part of the team. From a design thinking or social enterprise perspective, innovation relies on clear analysis of the barriers to change, real life experience and expertise of the population concerned. This can only be realized when communities and patients are part of the team.

When we hear previously unheard voices, systems appreciate, understand and relate to patient expertise with open mindedness and empathy. This is hard to achieve in research that reduces experience to scores. Both are needed: ‘experience based evidence’ augments conventional methods that promise ‘evidence-based practice’ In a future where the roles of patients and professionals are being realigned, the space created will allow innovation and collaboration in research to be seen as the gold standard. However, while funding is slowly shifting to value innovation, funding committees still are steeped in tradition that reinforces the less threatening concept of quality improvement of professional practice.

A cannon 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 now move to a first attempt to conceptualize the elements of this new science. The cannon consists of the following criteria.

Figure 1.  Elements of a cannon of emancipatory social science.

1 Basic structure of a New Science

1.1 What are the values, goals and principles of the science of Engagement

Values, goals and principles guide research practice. 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.

The golden rule of a science of engagement captures the current work of Jer Thorp in Living in Data, a citizen’s guide to a better information theory (2021) which informs and invites citizens to become engaged in data and information technology. This is an example of how democratizing science supports the mandate of participatory action research, emancipatory social science, and the fourth industrial revolution. Citizen Science welcomes citizen scientists who are experts in collecting naturalistic and environmental data and has moved dramatically into health and health care research. This is further supported by the Responsible Research and Innovation (RRI)policy begun in the EU) as an “on-going process of aligning research and innovation to the values, needs and expectations of society” [link RRI). The current iteration of Open Science as a research social movement, Open Innovation in Science (OIS0 asserts the need for collaboration with non-traditional researchers such as patients, business and governments. Most of the ‘non-traditional’ collaborators have a research base to draw on, and opens the door to patients adopting a peer or patient led research approach to be included and gaining equity in these new movements. This will dramatically shift the existing power balances within healthcare.

1.2 Goals of the science of Engagement

The following is a high level overview of goals and values of science in Canada, as part of the overall goals of peer research.

• Research that reflects all Canadians from the perspective of citizens, patients and communities. This includes not only research about inequities but 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 designed to promote practical, creative and realistic social innovation in concert with input from citizens, patients and communities.

1.3 Values of Partnered Research

These values, identified during the Grey Matters research only come with openness, hard work, trust and practice (Grey Matters, 2010).

• 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, and by association, those they represent grow in confidence and capacity with shared power.
• Shared work. To share expertise there needs to be a willingness to use common language, model and mentor expertise. Learning to share means time for reflection on the process and joint ownership of successes and failures.

1.4 Principles of Citizen Health

Doherty and Mendenhall (link to 2006 site: Citizen health care) frame Citizen Health as democratizing healthcare, and in doing so reflects on how Citizen Health Care leads to engaging citizens as co-producers of Health. These principles apply to most emancipatory social science options such as CS, CBPR, PaCER.

Table 1: Citizen Health Research core principles (adapted from Doherty and 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, health care, health research and their communities not merely as patients or 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 contemporary medical systems.
6. Citizen health and health research initiatives should have a bold vision while working pragmatically on focussed, specific projects.

Look now at the principles as part of the international movement of CS that value the competencies and contributions of citizens. 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 Science of engagement in health research. These principles speak to the relationship between academic scientists and citizen scientists.

The Australian Citizen Science Association defines citizen science as: public participation and collaboration in scientific research with the aim to increase scientific knowledge. These principles apply equally to peer research in any sphere, including health and health care.

1. Actively involves citizens in scientific endeavors that generates new knowledge or understanding as contributors, collaborators, or as project leaders, and have a meaningful role in the project.
2. Provides genuine science outcomes such as answering a research question, informing conservation, action, or facilitating policy decisions.
3. Benefits science and society through learning opportunities, research outputs, widespread evidence to influence policy, and connecting the wider community with science.
4. Developing research questions, designing methods, gathering and analysing data, and communicating 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. Open access format and potential for data sharing.
8. Acknowledgement in project communications, results and publications.
9. Inclusion of engagement in communication and evaluation of projects.
10. Adherence to legal and ethical issues such as copyright, intellectual property, data sharing agreements, confidentiality, attribution, participant safety and wellbeing, traditional owner consultation, and the environmental impact of any activities.

From Europe on the ECSA website (https://ecsa.citizen-science.net/) ACSA links: Website: www.citizenscience.org.au

1.5 What is the basic philosophy of this emancipatory science

The philosophy is grounded within social construction traditions that underlie most post modern 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 tenants: 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 proposed philosophy of the new science of Engagement in Health includes ontology (what we can know), epistemology (how we study experience), methodology (strategies and skills)

This Science of engagement in health is located in the domain of patient, family, caregiver and community experience of personal health and health care. It focuses on experience, knowledge and expertise informed by the contextual wisdom of the community or culture from a patient perspective (ontology). We use real life invivo storied data of what the teller thinks happened, is happening or could happen that enable detailed shared analysis with patients and communities.(epistemology)

We do this by training researchers, patients and community members to engage patients and communities in participatory, inductive and narrative methods that are adaptable and flexible (methodology). We do this in order to explain/analyze concerns identified by patients and communities. We do this in partnership with health, planning and care teams to promote individual and collective empowerment and support health innovation (goal of the research) to improve health care systems and initiate community based and social enterprise alternatives.

Patients and communities are fundamentally historical and cultural beings. Personal views and identities could have been different, and they can change over time. Knowledge is created through social interactions in which we construct common truths that compete with each other for power. Data collection and analysis is a process that evolves with engagement. Peer research data includes stories (incidents of what is happening, context (the who, where and when) and properties of (why and why now and then)of data. This data is fertile ground for fostering creativity, innovation and social change

Patients construct their understanding of health and health care through experience, language and interactions with other patients, caregivers, health care providers, all in the context of cultural and social values. The insights of each group are unique and should be considered essential for research purposes. It is more complex, as David Morgan, a proponent of pragmatism or research that is useful (link) suggests “On the one hand, our experiences in the world are necessarily constrained by the nature of that world; on the other hand, our understanding of the world is inherently limited to our interpretations of our experiences. 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 independent yet recognized within a conventional science tradition. Peer research is conducted alongside traditional 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). https://cihr-irsc.gc.ca/e/50476.html) that promote methods that are ‘verifiable, accurate and consistent’.

The scope of pillars three and four expands what we can study to include not only what is happening, but what happened in the past and what could happen in the future. It is here that grounded theory applies. It sets out to study 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. By sharing and analyzing these experiences together, it is possible to create a common understanding that recognizes diversity as part of collective experience. The following definitions become possible within this expanded scope of research

• Patients and communities are fundamentally historical and cultural beings. Personal views and identities could have been different, and they can change over time.
• Knowledge is created through social interactions in which we construct common truths that compete with each other for power.
• Data becomes a process that evolves with engagement. Peer research data includes stories (incidents of what is happening, context (the who, where and when) and properties of (why and why now and then) of data. This data is fertile ground for fostering creativity, innovation and social change

The goal of most engagement projects to date is the expansion of what we can know about patient experience for conventional researchers and program planners. These studies are designed around pathologies and the experience of patients are related to the loss, vulnerability and fallibility.

As such patient experience is a composite of symptoms and outcomes, health care interactions, interventions and systems captured in standardized, quantifiable ways.

In an emancipatory science, the focus shifts from a system or professional perspective to a pragmatic patient perspective of what works and what doesn’t. Because it is narrative, stories make possible knowledge about what might be or who we might become. For more, easy to read information on research paradigms and philosophy Paradigms of Instruction and Assessment - TRED 330 that includes the following comparison of

2. Nature of a New Health Science of Engagement

In this we move from the foundations to the scope, the methodology and the ethics.

2.1. What is 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 of health systems to identify priority areas for improvement based on data about existing systems. This research involves quantitative research with increasing use of patient experience data as part of qualitative research. It is a well developed research tradition that has served the systems and practices of health care as part of modern medicine based the systematic study Jer Thorp in Living in Data, a citizen’s guide to a better information theoryof the nature and behaviour of the material and physical universe, based on observation, experiment, and measurement, and the formulation of laws to describe these facts (accessed from internet, 202108,26).

The scope of the Social Movements study, Grey Matters and PaCER included the challenges of the health care system but also ventured out of the healthcare system into community options and social movements. This expansion opened the scope by looking at the reasons for starting new or missing services. By learning how other options worked, we expanded the scope of our studies to increase the potential for sustainability and spread. In this we used the methods of community and participatory action traditions that have been strong advocates of the importance of community input in health promotion, prevention and community health options.

When PaCER developed as a social enterprise to provide research training and services, we were aligning with new university social enterprise networks devoted to developing changemakers and changemaker research that included universities and communities. With this bridge to social enterprise and innovation using community business models along with natural and main street services we were able to open new opportunities for research as more citizens become involved in their health, health care and health system transformation

Perhaps the most intriguing space is the middle ground that includes both health systems moving closer to community and population healthcare and communities and main street services expanding into healthcare options. This space is the ideal space for peer and community research because citizens and patients provide the bridge between the two. Most patients have become ‘equal opportunity’ health seekers using both healthcare systems and complementary, traditional and natural or main street services.

The scope of the Science includes funded health care, health associations, community and complementary health options, health professions such as pharmacy, dentists, patient safety, academic health disciplines and social justice programs such as disability and aging studies. We have established a publication portal for peer research and innovation to encourage people to read about existing examples to spur experimentation. 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.

2.2 What is the basic methodology of this science

Peer methodology is grounded in emancipatory social science and critical theory which 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 considered to be acceptable within common research standards. These are covered in the following diagram.

2.3 Foundations of Peer Research

The methodology of peer research emerged during a long period of incubation wherein research traditions and methods were incorporated into research training sessions (seniors, patients, indigenous communities, disadvantaged populations, PWLE with disabilities, aging and mental health issues. The platform for incubations was classical grounded theory because it focuses on social organizations (roles, relationships, programs and systems) and novel situations. Grounded theory allowed us to research methods while we were conducting peer research about the social concerns of patients.

In the end three primary methodologies were combined to create a unique emancipatory method that could be taught to patients and community members. This combination enabled peer researchers to engage others as co researchers in health research and innovation. The three methodological traditions were participant action research, classical grounded theory and narrative research. Participant Action research brings communities together to identify concerns and explore ways to understand and solve the concerns. It is a powerful but informal research method that underlies most participatory research today.

I was trained in quantitative research but found it lacked the nimble creativity needed for the innovative work I was doing. 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 innovation. Grounded theory once challenged qualitative research but the analysis process has been taken up by most qualitative researchers who are looking for inductive approaches. I came to narrative reluctantly during my PhD thesis. Stories exist at the personal experience level, they encourage sharing stories of experience to create collective narratives and they are prominent at the organizational or meta narrative (discourse) level to understand how systems maintain the status quo. In new social movements and innovation stories are the driving force where new narratives are created that challenge the past constrictions and in the process reframe and transform potential futures. Narratives are windows to the past, they construct the present and design the future. It is the inherent magic of peer research. The power of narrative enables peers and communities to reclaim their stories as knowledge and examples of expertise.

3.0 Peer Research methodology

While the following strategy points to a basic methodology, it must be recognized that these strategies apply to most, if not all, research in health. In the spirit of CGT, peer methodology is intended to continue the search for novel ways to build research capacity and new research voices.

3.1 The nature of data - from standardization to diversity

Data has become a commodity to be taken, used and reused often without the knowledge or permission of the person it represents. Anonymized digital data is dangerous when used in machine learning as part of AI technology that uses existing data to inform algorithms that make decisions about triage, treatment protocols and funding. These algorithms are considered effective but technology can’t overcome the bias and gaps that exist in data without clearly understanding where the data came from, how data can be misleading, how it will impact the decisions made.

This underlines the essential role of peer research as a means to collect real life data that is relevant to algorithms in healthcare treatments and decisions. Just as it was essential that physician records and notes informed treatment algorithms, so patient real life data must be part of the algorithm design teams to be able to customize the algorithms so that they remove the white, male bias that plagues existing data sets. For example, algorithms in triage have used financial data to make decisions, facial recognition was based on while male data sets which marginalizes all other faces.

It is particularly critical that as new digital health approaches grow outside of existing systems that ignore the cost of creating and updating appropriate data for machine learning be taken into account. Without this the promises of a digital health future will repeat the problems that are built into current health systems. Auditing algorithms to ensure that they reflect the true nature and diversity of the data being used to make life affirming decisions is a start but interdisciplinary audit teams that include patients will be needed to ensure data integrity.

Data marks the difference between traditional health science or emancipatory science. Traditional quantitative data is discrete, observable, numerical and can be combined and contrasted to create probabilities of difference in clinical trials. Patient Oriented Data has come from this tradition. Experience data are distinct units that represent observed or remembered events, behaviours or feelings that can be combined into ‘measurements’ (a collection of data elements that stand for a concept). These elements can be sorted into general categories such as experience, outcomes and satisfaction where measurements can be carefully studied for their ability to describe and predict differences in conditions, treatments and situations . Much of POR tends to these discrete data units and processes used to build trust in the collected data as concepts that inform clinical trials.

Data within a science of engagement is real life data in all its complexity and diversity. In vivo or the language of the community is used throughout the processes of capturing units or short notes and stories about what is seen, heard or shared. These data are combined to create abstracted, common or shared experiences that are then used when interpreting findings. As such it draws upon grounded theory assertions that ‘all is data’ and data diversity is needed to understand complex and conflicted social problems and innovative ideas. In peer research the basic unit of data is grounded in the natural way of communicating - stories and the elements related to story such as context and properties.

Citizens come to see their experience as knowledge to be shared and analyzed by themselves and collectively with others. In this process experience becomes valued not as a particular and concrete concept but as expertise across healthcare experiences, many professionals and transitions. 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

This call for diversity casts the data net widely to tap into unheard voices and to invite sharing between those with different experiences. Peer research within communities (CBPR) breaks these barriers by giving voice to neglected cultures to build capacity within the communities. Attention to data diversity from a patient perspective reflects the democratization and realignment of science in accordance with the responsible research and innovation (RRI) and open innovation in science (OIS) principles.

3.2 An engagement strategy

The overall method of Peer research is an Engagement strategy that emerged during Grey Matters research (link to Grey Matters, pg 178) and quickly became the signature method of PaCER. The chart below outlines the basics of a Peer Research Engagement Strategy as the basic method of engagement. This provides the structure for research methods that are appropriate for each stage.

Figure 2: Engagement Strategy for Peer research.

SET or co design has become a signature of peer research. Patient and Community experts, clinical and natural resources, online resources, policies and programmes are consulted to identify concerns related to the research topic. These are sorted into common concerns. A CoDesign team of patient consultants and peer researcher is convened to discuss priorities of these concerns for research, and advise on how patients can be included in recruitment, language and political red flags. 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 COLLECT PHASE is presented below as an adaptable iterative data process. It can be used with most research traditions.

Figure 2, iterative cycles of simultaneous data collection and analysis adapted from Classical Grounded Theory.

REFLECT is a group process where the original patient consultants return to review findings and 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 and social enterprise.

The introduction of new forms of data justify the claim to new science. Real life data that enables real life analysis is the key to machine learning for Artificial Intelligence just as physician patient records enabled more accurate algorithms.

3.3. Ethical Framework for the Science of Engagement

As with any new science the concept of ethics is complex and multifaceted. The critical element is that any training or peer research project is that it must be overseen by someone qualified to submit and supervise ethics protocols within institutional standards. This is relatively simple in research internships because the instructor in research courses covers both oversight of the research and adherence to ethical standards.

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

1. The 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 co-ordinated. All PaCER students must complete tricouncil online training before they are admitted to the practicum course. (https://ethics.gc.ca/eng/nr-cp_2019-06-05.html The details are not covered here
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 ( https://cihr-irsc.gc.ca/e/51910.html, https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019. Readers are invited to look at the up to date ethics related to engaging patients. Peer researchers must abide by these standards.
3. Aspirational declaration of personal ethics of peer researchers. This was developed by PaCER interns in the second cohort as a set of declarations to guide their practice.
4. Perhaps the most important aspect of ethics is the statement of ethics done by peer researchers at the end of their research and training projects. This follows the Aspirational ethics below.

Aspirational Ethics of Engaging in Peer Research

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

The following basic values were adapted from the international declaration of ethical principles for psychology during an Ethics of Engagement workshop with the second PaCER cohort. It was led by Dr. Jean Pettifor, the author of the ethical principles for psychologists. The declaration was developed in response to the recommendation of a working team of staff, cancer survivors and board members of the Wellspring Calgary research team. The unique nature of the interns as both insiders (cancer survivors and Wellspring members) and outsiders (peer research interns) prompted the need for peer research ethics to both guide the interns and provide ethical standards to hold the student interns accountable.

The Ethics of Engagement reflect the following aspects:

1. The personal integrity of the patient engagement researcher
2. The ethical values of relationships within patient engagement research
3. The ethical values related to competence in the engagement research process
4. The responsibility to contribute to the betterment of patients, families, communities and the health care system
5. Integrity, acting with honesty and transparency, ensuring that self or professional interest does not interfere with acting in the best interests of persons and peoples. While many patient engagement researchers are affiliated with professions, they are expected to meet both professional ethical standards and the moral framework of engagement research. Check the following markers that pertain to this research activity.
   1. Transparent, open, honest and accurate communications
   2. Disclosure of agendas using terms that can be readily understood
   3. Regular negotiations to clarify roles and changing expectations
   4. Non judgmental approach which maximizes impartiality while minimizing biases
   5. Not exploiting persons or peoples for personal, professional or financial gain
   6. Avoiding conflicts of interest and declaring them when they cannot be avoided or when failure to declare them would be inappropriate.
   7. Understanding of power structures, being clear and sensitive to “who speaks for whom” as a way of promoting meaningful engagement.
   8. Sincerity in developing a forthright and trustworthy approach to securing information
   9. Ensure that others receive credit for their work and contribution
   10. Guard against conflict of interest or its appearance: e.g., nepotism, improper outside employment, misuse of public resources, or the acceptance of gifts.
   11. Take responsibility for their own errors
6. Restraint in staying focused and current with your role in engagement researchRespect and Positive Obligation in Relationships. Grounded in fairness and justice, is a belief in the inherent worth of all, regardless of the social structures that give value to our lives. Check the following markers that pertain to this research activity.
   1. Understanding that community, family and patients are experts in their experience.
   2. Taking time to understand what patients, families, groups and communities want in ways that are inclusive, collaborative and based on power sharing, not expertise.
   3. Engage in full partnerships in research that includes free and informed consent, and the choice of recognition or privacy in sharing results.
   4. Committing to follow through with expectations
   5. Respect diversity, customs and social structures.
7. Competent and caring research practice: In undertaking engagement research, the researcher demonstrates skill in including participants at all stages of the research process: setting the research approach, co creating research data, reflecting on the research findings and sharing the results. Throughout, the PaCER researcher maximizes benefit and minimizes risk, offsetting or correcting harm. Check the following markers that pertain to this research activity.
   1. Using plain language. Proposals interactions, meetings, protocols and reports. Where technical terms are needed, meanings are negotiated, clearly defined and only used when understanding is assured.
   2. Voices are clearly recognized and documented where agreed to by all parties.
   3. Methods and language are negotiated prior to the research beginning, when changes occur and when presenting findings.
   4. Shared ownership of results honour the contributions of the partners
   5. Findings are accessible to patients, family, community at large and Health Stakeholders.
   6. Respect for the ability and capacity of individuals, families, groups and communities to make decisions for themselves and to care for themselves and each other.
   7. Openness to different perspectives and criticism in the quest to make patient engagement research more robust. Involvement in the ongoing development and evaluation of engagement methods,
   8. Self knowledge of how personal, professional and social values, attitudes, experiences and social status influence actions, interpretations, choices and recommendations
8. Contributions to Patients, Families and Communities and to Health professionals, planners and researchers. Active sharing of knowledge to improve the conditions of patients, families, groups and communities and society. This also includes conducting affairs within society with the highest ethical standards, and encouraging the development of social structures and policies that benefit all persons and peoples.
   1. Produce quality research about patient, family, group and community experience of health, illness and health care in ways that allow the promotion of well being of society and all its members.
   2. To use knowledge of research for the benefit of all and to protect knowledge from being misused, used incompetently or made useless.
   3. To demonstrate and monitor the level of training and practice, to ensure level of competency and ethical practice.
   4. To develop evaluation methods to ensure understanding of ethics by peer researchers, as they navigate new territory as patients and researchers. This is covered in the following quote from a final research report done by peer researchers.

A statement of ethical compliance from a peer research study

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. 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.

In keeping with the goal of maintaining the integrity of the patient voice, the following is presented as written by the interns from the final Wellspring report (list students). The issues we address are: the search for quality data, negotiating the engagement process, confidentiality, referencing and finally transparency.

• Quality of the data. We employed several strategies to raise the credibility and trustworthiness of the study. The Patient Engagement Research methodology, in which patients are observing and talking to patients, means that the researcher is both the instrument in the study and a participant. It becomes very important that any issues that might influence the collection or analysis of data are noted and transparent. (Bogdan & Taylor, 1975; Kirk & Miller, 1986; Patton, 1990)
  
  The second strategy to raise trustworthiness and credibility is related to the validity of the results. Patient engagement researchers are in a unique position to engage with participants to ensure that data was complete and accurate. Because we shared a common experience, there was a natural trust of peers and an openness to ‘share’ data. There were vigorous debates about meaning, and challenges to find the data to support ideas during the shared analysis process.
  
  Research colleagues examined the data records and coding to discuss similarities, differences and patterns, and to eliminate researcher bias and to increase confirmability of the results (Lincoln & Guba, 1986). We also kept returning to the audio recordings, flip-charts, analytical memos and note-takings to see if "the constructs, categories, explanations and interpretations made sense and really reflected the nature of the phenomenon" (Patton, 1990, p. 462). We looked at the data from different perspectives to uncover the essence of the experience, and questioned the possibility of rival hypotheses (Berg, 1989). Since the PaCER structucture calls for a REFLECT focus group, we were able to check that we had asked the correct questions and that the emerging themes were "recognizable as adequate representations of their [Wellspring members] own ... realities" (Lincoln & Guba, 1985, p. 314).
• Engagement boundaries and negotiating roles Patient Engagement Research (where ‘patient’ includes the patient, their family and networks) introduces an important variant on patient engagement and research relationships. It introduces the potential for co-creation of knowledge wherein all parties share, learn and benefit from the research process. This is possible because Patient Researchers come from the culture and experience of health seeking and health care and thereby share understanding with patients. We moved from being interested researchers into an charmed space where peers were sharing their experience of lives changed by the diagnosis of cancer.
  
  This is in contrast to more traditional patient engagement, where engagement comes after the intervention almost as an afterthought (e. g. using patient satisfaction surveys). At best, such approaches lead to strategies that are not substantively informed by the patient perspective; at worst, they leave the patient feeling undervalued and alienated from their experience. What we came to realize was that there was a different quality to the research; we were treated like comrades in arms and allowed into a private world that few researchers could have accessed.
  
• Confidentiality and referencing We have protected the confidentiality of the participants by simply recording the time, place, date and the context of our data (observations, focus groups and personal communications) rather than record information that may identify a specific individual. All identifying data such as consent forms, demographic information were stored separately from all the raw data and analysis.
  
  Participants for the focus groups came forward in response to an e-blast from the Wellspring, posters, information at the Wellspring’s front desk and word of mouth from participants. In alignment with Wellspring’s confidentiality agreement and our agreement to work within these parameters, specific member/participant demographics were not recorded for the purpose of our study.
  
  Our data collection did not involve any personal or identifiable health related information such as health records. It was coded for abstract concepts and themes, and summarized into a research report for anticipated publication and presentations. As such, individual names will not be used, and other potential identifying markers such as age, geographic location, socioeconomic status, detailed health care provider or agency information, or cultural affiliation will be aggregated so as to preserve anonymity
• Transparency We came to realize, as we listened to our participants, that we were being invited into their world to hear and understand their reality. Not only were we engaged in peer to peer research, we were embarking on journeys, hearing stories of broken lives, shattered dreams, and fears around employment, as well as the day to day difficulties of living with cancer and its treatment.
  
  In engagement research, we the researchers are also a source of data - whatever input we bring as patients is also data. By reporting comments in conversations and meetings as referenced to the person saying it, we hope to remain transparent in our decisions. This includes comments and stories of research team members, as data to be analyzed and included.
  
  We believe that the methodology of Patient Engagement Research, which seeks to reflect the experience and reality of the participants by engaging them at a deep level to tell their stories, informs the concept of patient experience and patient research voice from a new and distinct perspective. The difference in this study from a more traditional approach is that the questions asked all come directly from patients.

4. Relevance and Impact of a new health science

This section moves from the practice of a science to the impact of science. It looks at the usefulness of the science, its relationship to existing theory, innovation, its modifiability along with 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 health care, 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 that bring unheard voices to the forefront. To date these new sources include:

• Peer to peer data.
• ‘Incidents’ and ‘story’ as units of analysis.
• The story template replaces transcription and first analysis
• Common or share stories as categories
• Separate observer and participant roles create opportunities for checking reliability of observed data
• The use of incidental and opportunistic meetings and events, as data collection opportunities.
• Shared analysis with participant co researchers, SET and COLLECT research consultants
• Working theory is a real life conceptualization of the solution to main concerns of a population

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. Unfortunately Health theory appears limited because of the focus on standardize data collection and interpretation. This is especially true of theory as it relates to emancipatory theories and patients in controversial roles. A general consensus is that medical theory relates to cause or causes of a disease. This works well within the pillars of health which locate health 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. The following is an example of potential theory within the realm of health science. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6056150

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.

Most methods chapters begin with a list of theories that inform the strategies and methods. This was done to provide a theoretical lens to frame these chapters. Social construction has guided the development and adaptation of the majority of theories in this book.

The following theories 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 are discussed in detail throughout the book and links are provided here to find those you are interested in.

Table 1:  Summary of major theories used in forming this Science of Engagement in Health. 

4.3. What makes this science innovative and able to sustain innovation and social change?

The new role of peer researcher builds a bridge between unheard populations and health research, and bridges between conventional and emancipatory social sciences. In the process it opens the door to innovation and social enterprise using design thinking to take innovative research findings to commercialization and adoption of new social organizational structures. Social Enterprise is a growing movement to teach students about social change and community engagement. The Ashoka international network of programs and innovation fellows is changing the focus of universities intent on social impact. The umbrella of a university provides space for social invention and incubation of new ideas but lacks the capacity to provide adequate infrastructure.

Social enterprise was the only choice for PaCER. It began as a catalyst grant to test the feasibility of peer research but when that grant ran out, there was a desire to implement the new approach as part of research projects. We were able to do this because of partnerships and skilled students and colleagues. 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 avenues for research based on the unique opportunities within each contract that provided new opportunities to problem solve.

As with most social innovations, social enterprise which is basically funding through contracts is very dangerous if it is not embedded in a system like a university which taps into academics who are willing to provide leadership, guidance and oversight. Universities sometimes are able extend credit during the start up phase and support innovation to become viable businesses and community movements.

The PaCER movement as a social enterprise introduced or refined the following innovations, most of these relate to challenging system obstacles to new patient roles, relationships and forms of practice.

• Catalyst for system change based on combining health system champions, training patients as researchers and embedding graduate peer researchers in health transformation networks
• Experiential learning as an action research cycle where students were exposed to skills, practiced skills with each other with mentor support, applied skills in realistic situations, analyzed the findings, individuals memo connections and experience, shared analysis and planning next stages.
• Online learning that is competency based using methods that reflect the engagement research process.
• An integrated narrative methodology used with all research skills and data collection and analysis and interpretation
• Engagement strategy to ensure participant engagement during co design (SET), conducting research and reflecting with patients about findings.
• On line data collection, data management, group analysis

4.4. How does this Research Support and Challenge Current Practice?

The main influences have come from the graduates of the training program who go on to become researchers and advisors, patient facilitators or coordinators. They bring a unique blend of advocacy, engagement skills, research expertise, project management and leadership skills. They are advisors in the SCNs, Health Associations and Professional bodies, clinics and regional health authorities, as well as patient research leads and co-ordinators 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 other impact comes from the research internships and contract research projects. 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 which started as a year long internship. The 5 internship projects broke ground with the sponsoring systems with marked impact through changes in understanding, explaining and suggesting changes to current practice. Refer to the Resource section for details of these Catalyst projects

• at the level of family practice management of undiagnosed arthritic pain,
• the processes and players in hip replacement,
• community support for surgery after care for immigrant populations,
• the need for comprehensive understanding of the patient experience with chronic and complex health systems, and
• the documentation of what works and how, in a community based cancer wellness centre.

The first social enterprise research contracts were influential in informing how policies for end of life care impact families, the impact of the safe surgery checklist on patient feelings of security, the development of community models of care for arthritis, indigenous rheumatoid arthritis, online support for teachers with chronic arthritic conditions. In each of these, current practices and future options were influenced by peer research. Twenty three research projects were completed with later projects influencing youth concussion approaches, support for parents of stillborn babies, mental health projects related to losing identity when diagnosed, surviving after treatment and the experience of parents who take their children to the emergency room. The most recent projects included four indigenous projects related to cancer prevention, 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.

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 Strategic Clinical Networks or Health related committees.
• This work was published as a grounded theory research project, 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 many stated anticipation of 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 was a cautionary tale of social innovation

• 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 using the CAHR criteria of social impact in Health research after a course structure had been established. Peer research initiative twinned with the SCNs achieved an impact in 3 of the 5 categories indicated by CAHS.

• Advancing knowledge through creating and sharing research done by and for patients, about peer research and relationships with researchers, health care 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 along - side patients to create a new patient research voice. This is evident in the success of graduates.
• Informing health decisions and health care as patients and the products of their work, have impacted practice and policy making.

As more research teams and health systems take up the challenge of peer research, there will be opportunities to conduct more broadly based social impact of peer research.

4.5. Modifiability and Transferability

Modifiability is inherent in the incubation processes of peer research, as part of the application and modification of methods to respond to the particular needs and conditions of projects. One of the features of this science is that it responds to and adapts to cultures, conditions and context of the participants and communities. The essence of the engagement strategy approach is adaptability and the ability to apply this to most research traditions.

Transferability has been apparent within the scope of the province and through national teams who support training and research within their provincial organizations. The publication of this book and the opportunities to connect through the interactive processes as part of the publication will hopefully spawn debate and collaboration, to spread the concepts within this science to new places, systems, professions and patient engagement initiatives.

4.6 What are the Training opportunities?

The idea of training patients and community members to become peer researchers is still controversial among many health researchers. There are many expectations for this including the following:

• Patients would not be capable of understanding health research. Peer research, however, is a method created specifically to engage patients and communities. The methods are qualitative, inductive and narrative using plain language.
• Patient experience research is already being done by health professionals based on their experience of what patients need and what patients experience. Patient experience research by health professionals is essential to improve health care practice. It is however not a patient experience from a patient or community perspective.
• Training patients is not equivalent to health research training through university graduate courses. Patient and Community Engagement Research is an accredited university program of studies four course certificate. The four course certificate includes: A foundations course, with history, basic theory; A co design and peer research methods practicum and; A two course internship in designing and conducting a peer research project.
• This book has been written to encourage research teams and research informed health care practice to create opportunities for team members and interested patients to study and create opportunities to embed peer research in ongoing research agendas. This might include the PaCER training program, other training programs or embedded training and testing of engagement strategies, methods and theory. Support is available through the publication platform,

In addition to the PaCER program of studies focusing on adapted qualitative methods there are a number of training programs and planned programs. Most exist within the strong community based participatory research traditions. There is a federal commitment to young and career researchers interested in research and health care careers that include patient oriented research, patient engagement and peer research. Canada, like EUPATIE in the European Union, has focused on training opportunities in POR and patient engagement. The following is a snapshot of the training opportunities

Building Capacity at the patient and community level

• National foundation courses in patient engagement being offered throughout Canada through SPOR units. The link (https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0141-7 is the detailed process used to create this foundation for all Health research training in Canada. This curriculum has been taken up by provincial SPOR units to build patient capacity to understand POR, work on teams.
• SPOR NTE initiative to increase training in PE for POR (link)
• AIDs peer network online training ( link)
• Community Health department research training programs for community members
• Professional Certificate in Patient and Community Engagement Research through continuing education (ask Meagan for suggestions and what to include).
• EUPATIE courses
• Changemaker courses in Ashoka universities
• A Graduate course has been developed based specifically on the science of patient engagement for PaCER graduates, graduate students and researchers looking for ways to include patients in research
• proposals and grants and health care professionals interested in introducing patient engagement research within their program. The competencies of this course is listed in the Resource section.

The introduction to peer research begins with experiencing the theory and methods of engagement though working in groups to take turns as role playing researcher and participant identities. This includes how to introduce yourself as a peer researcher, why peer research is important.

The internship applies the skills learned by conducting the research they have designed after it is approved through ethics. The group works as a team, sharing leadership roles and data management.

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 willing to work as volunteers as patient advisors.

This is a mine field that includes not only 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 of the avenues because payment options are ephemeral and situation specific. Until health research grants include criteria for paying for peer research 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 $10.00 to $50.00 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, pay may be deducted from their allowance or 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 health care systems, face serious obstacles because they can’t continue if payment is involved. The decision for patients with chronic and declining health is too risky to make for many. 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 entrepreneurship 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. While new researchers may be uncertain about comparable qualifications, these concerns have diminished as the quality of the research becomes acknowledged. 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 assistants 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. When patients have been trained specifically for research or have related training and/or experience the following employment apply.

As the scope of research expands with citizen science and changemaking innovations as part of Social Innovation and Social Enterprise initiatives, the payment of patients and community members will apply new options for payment. 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 $20-50 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 social enterprise, such as PaCER, the research lead is considered an independent project 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, honoraria are beyond the scope of this science although the move to recognize patient expertise is inevitable.

Although this is still a nascent science, there are strong indications that the science and peer researchers trained in the 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

Graduates use the peer roles to:

• enrich their existing careers,
• become advisors and consultants,
• conduct research with their sponsoring teams
• Contract research services in
  • Data collection, analysis and report writing
  • Co design
  • Consultation
  • Recruiting and mentoring patients for research teams

This science will be of use in existing patient engagement initiatives such as Patient Oriented and Patient Engaged Research projects where peer research leads, peer research assistants begin to inform research and practice. Citizen organizations are growing in Canada and internationally who are interested in health. 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, front line 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 conducted included physicians researching physician experience in conjunction with patients researching patient experience.

Peer research within health care and community health options have much to bring to the table. Community research with community researchers in AIDs research and community health paved the way for this new science of engagement. This science hopefully promotes debate and forge new partnerships.

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. To promote this, the manuscript is being used in a review process to encourage debate 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 chapter to further your interest in the science of engagement. Whatever your preference, the following questions might help guide your decisions.

1. What individual and community resources do you have access to currently and how might they become engaged. E.g. ‘expert patients’, advisors, pioneer contributors.
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.