Polar Opposites or Co-designers

This work began early in my career as a quantitative health research and program developer that was challenged by equity-seeking influencers in mental health, disability, seniors, and Indigenous communities. International new social movements became co-designers of new research methods to see if there was an alternative way to conduct research within these groups. I was attracted to independent living and international mental health initiatives that were willing to share their skills and practical research ideas. Retired academics and seniors developed Grey Matters (Marlett & Emes, 2010, https://press.ucalgary.ca/books/9781552382516/) that became a curriculum for community research that supported the co-design of patient and community engaged research as part of health research and innovation. Research teams were open to exploring the involvement of patients and the impact of a patient research voice in health research teams. They tested emerging research methods and approaches. Equity-seeking patients and citizens and their identity-based communities were co-designers in all aspects of this work. The Faculty of Continuing Education of the University of Calgary is now home to the PaCER distance education training program, and the Alberta SPOR patient engagement unit provides an academic and development home.

In this regard, PaCER evolved as a social innovation, a social enterprise, funded research, a curriculum for non-traditional learners at our university, and finally, a science of engagement.

The following table returns to establish the contrasting research methods that became part of the incubation stage of peer research that led to a social enterprise that both trained patients in new emancipatory research methods and employed graduates to conduct patient-led research.

These characteristics of data clearly indicate the difference in the purpose, application, and intended outcomes that would seem to suggest the inability to collaborate in health research. Evidence-based health research sequesters patients by ensuring that there are no connections to individual patient data and patients are not aware of the goal of research. The data is owned by researchers, universities, or pharma. The outcome is predetermined by setting the hypothesis that guides the data at the end of the study, with little room for correcting assumptions or changing the data during trials. The focus of the data is to search for the cause of a problem (pathogenesis) using data about patients as it relates to how the problem responds to the anticipated change. Researchers take this process seriously, and any attempts to change the data, how it is collected, and how it is used is a threat to their ethical standards related to reducing harm.

Now let us look at the data of peer research that begins with the shift from pathogenesis to salutogenesis—the search for well-being, capacity, and resilience that build personal resources to limit the impact of illness, trauma, and loss. This process is guided by inductive and iterative cycles that enable all co-researchers to follow and test new explanations of the main concern and the emergence of potential solutions. If peer research is practised within an emancipatory framework the data is co-created and co-owned by participants involved in the research. The outcome is not determined until the best outcome is identified with suggestions for implementing specific changes that will influence patient roles and relationships in healthcare: the language used, the policies, the systems implicated, and the roles of patients in changing practice. The methods used determine the outcomes and relationships.

The data science of pathogenesis is fixed, powerful, and focused on specific problems. As a methodology, most health research operates on fixed, standardized deductive procedures that make up normal science expectations of excellence. Knowledge is concrete, data is numeric, and results are quantified and measured and published in a consistent format. Emancipatory peer research on the other hand suggests that the knowledge of patients and communities is accessible and patients can become more capable, confident, and effective in understanding problems in ways that can make a difference.

The proposed data science of peer research is new, creative, pragmatic, and action oriented. It considers knowledge to be what happened, what is happening, and what could happen to build well-being through building personal capacity to learn about, manage, and find meaning from their experiences. Emancipatory research taps into this personal expertise as part of inductive research, combining stories and experience to find ways to change what is happening to create opportunities for patients to benefit and take up new emancipated roles in their health, healthcare, and health research and planning.

The epistemology and worldview of these two approaches could not be more dissimilar in the way experience is studied, just as each sees the roles of patients in different ways with different goals for the outcomes of their efforts and knowledge. We anticipated reluctance about emancipatory approaches and also expected that it might be difficult to publish in evidence-based journals. However, health researchers were open to peer research findings that were novel and creative, and teams and peer researchers were able to publish and influence practice and policy. This sets the stage for PaCER as an incubator and prototype of innovation in health research.

The uptake of PaCER research was only possible because of emerging forces supporting new roles for patients: the initial calls for proposals for SPOR (Strategies for Patient-Oriented Research), the start of the Alberta Strategic Clinical Networks (SCNs) and the publishing of Grey Matters as a co-designed curriculum for community research. The synergies created an impetus for change that encouraged established researchers in Alberta to support and train patients to conduct research that engaged patients and communities in research. After the grant was complete, we established a social enterprise within the faculty of medicine with the help of health research and planning teams that sponsored training of their patient advisors and contracted peer research done by the graduates.

The innovation began in a psychiatric institution, explored in community services, co-designed with independent living centres and founders of new social movements, and formally tested with seniors and retired academics. It was guided by a steering team of three: me, Tracy Wasylak, a director with the SCNs, and Deborah Marshall, a health systems researcher. As a social enterprise, the university and the Faculty of Medicine found ways to support a radical social enterprise within university structures with the sponsorship of the SCNs and health researchers. New training methods, theory, engagement strategies, and a peer research model was co-designed, identifying potential solutions. Meaningful engagement was found to be open and collaborative, iterative and inductive. Engaged research, as it turns out, tends to open opportunities to understand the nature of obstacles within current systems and create innovation opportunities in health research, healthcare, and policy. The forces supporting co-design and innovation laid the foundation for future growth with Alberta SPOR and Continuing Education and a growing number and range of sponsoring health research teams.

Ten years ago, it would have seemed impossible to see emancipatory research done by and with patients as part of health research. The forces for change that are introduced in this chapter bring with them the expectation that future patient roles and relationships in healthcare and research will continue to require a creative, authentic, pragmatic, and action-oriented patient research voice to be ready as health systems transform from a focus on acute and chronic care to prevention and health promotion.

Patient Roles in the Changing Landscape of Health Research

I had expected that each of the forces for change would lead to different patient roles. Little did I expect that the end goals of each force for change required similar relationships with patients. They shared expectations that future patients would aspire to be more active in managing their health in the following ways:

• Health technologies expect to reduce the burden of chronic conditions and stress-related illness that will provide opportunities for transformation to increase prevention and health promotion. Patients will be expected to monitor their health and respond quickly to address conditions through new technologies that reinforce patient involvement in their health.
• JEDI, through challenging systemic discrimination, hopes to provide space for marginalized groups to be respected for their advocacy to access care while bringing important information to healthcare about how their diversity will lead to more comprehensive and shared care for all.
• Citizen science as part of health and health research brings an understanding of participatory science that will include research conducted by non-traditional researchers. The overall impact of democratization will be more options for dealing with diversity and the ability to work with patients in new and emancipatory ways to take advantage of options for prevention and health promotion.

Looking back, PaCER created a participatory and pragmatic patient research role. The teams we worked with were willing to create these new roles for patients as engagement researchers and new roles for participants as valued co-researchers. These roles were dramatically different from current healthcare patient roles and expectations of anonymity and compliance in research. Academic researchers who sponsored or hired peer researchers as part of their research grants commented that peer research brought a new, distinct, and comprehensive perspective to what it meant to be a patient that provided new insights. The data included aspirations and fears as part of living with health conditions, interrogation of systemic discrimination, suggesting solutions from a patient perspective, and health-related policies and practices that reflect patient experience and aspirations.

The explosion of new roles for patients during the past 25 years was unprecedented. New social movements such as independent living centres and quantified self movements of the late 1990s used computers, and communication technology created online connections for equity-seeking groups. Then, as I was focused on co-designing an emancipatory research method for academic research, the landscape of patient engagement in health research changed dramatically. Consequently, in the past four years, I have been looking at other models that engage citizens and patients in health research that might be interested in the SoE.

The new title of Citizen Science in the United States, the Association for Advancement of Participatory Sciences, identifies the potential to expand the roles of volunteer citizen scientists beyond data collection for academic research teams. This is evidenced by the recent moves to community science that recognizes the power and capacities of communities to identify and research issues of concern using emancipatory models to build community competence and capacity. These early examples echo the advances in community-based participatory health science, as pioneers in community engagement. Another influencer, Ashoka (https://www.ashoka.org), is bringing community research to local communities and all education levels through the tagline of ‘everyone a changemaker.’ Other potential avenues for changing roles are the personal science networks in Holland that support patients, as part of condition specific networks, to research their own health concerns and share results with others with the support of health-related CS (My Data, Our Health).

We now return to the table of citizen science models of research that were introduced in earlier chapters to support the potential of advanced and comprehensive roles for citizen scientists. These volunteer roles that are supported by academics focus on the traditional academic research in the natural sciences, ecology and climate, and astronomy. More recent examples include history, cognitive science, audiology, psychology, and the quantified self and personal health networks. We now use this table to reflect on the extensive range of citizen science roles, particularly the advanced levels that reflect the concepts of peer research.

Note: Adapted from Strasser et al. (2019) with the addition of IAP2.

The following represents Peer Research within each of these options.

Peer research is added at the bottom of the table to suggest how it might work with the citizen science methodologies. This table provides an easy way to engage teams, communities, and patients in identifying patient research roles of engagement to entice teams to consider new options for CS. These methods include citizens and communities who conduct traditional methods to extend the scope and reach of research.

Organizations outside of health systems are engaging citizens in their research. I joined US Citizen Science, now the Association for Advancing Participatory Science (AAPS), and found organizations that included patients as partners in studying conditions such as HIV in British Columbia, inner-city poverty initiatives, and breast cancer. More recently I reconnected to Citizen Science for Health in Europe, Public and Patient Involvement in the UK, PCORI in the US, Ashoka and social innovation centres as part of community health and development.

It seemed that as soon as computers and communication devices were available, the door opened to citizens to use these new tools to become personal scientists using self-tracking or self-knowledge through numbers of the quantified self movement. This enabled citizens to use their personal wearable devices to track and conduct research using performance data and to share their research with other citizens. While tracking was possible, analysis and interpretation lacked research literacy, but basic quantitative methods for analyzing data have become part of the growing number of research networks enabling citizens and patients to connect and share their personal research. Online data platforms such as Zamplo (www.zamplo.ca) are examples of data curation sites that support personal research and now include researchers looking for participants and advisors.

Networks of patients who are also trained researchers have created research hubs to address their common health conditions and concerns and are bringing important research options to health research. The first hub that has long been a leader in patient and public engagement in research began in the UK (Patient Led Research Hub, n.d., www.plrh.org). These hubs are providing new energy to patient experience research by conducting orphan research about issues not being done by traditional research teams. These networks and peer research–trained patients are producing groundbreaking publications, such as the phenomenon of long-haul post-COVID and PaCER research publications (https://prism.ucalgary.ca). Perhaps the most promising recent development is the Citizen Science 4 Health Network of the European Citizen Science Association (ECSA Working Group, n.d., https://www.ecsa.ngo/working-groups/citizen-science-for-health/). The first conference was held in the Netherlands in 2024.

PaCER is a type of CS that trains patients to conduct peer research. It supports new science roles for patients in health systems and health research, the EU citizen science has embraced personal health research networks that will bring new energy and partnerships to the concept of CS as the domain of academic research. It would have seemed impossible to conceive of health research outside of academic oversight and control, but the quality of health data by patients will continue to energize new options for future patient roles in health research.

Forces Changing the Landscape of Healthcare and Research

The following diagram considers three forces for change and innovation that are directly related to establishing new roles for patients: as users of technology and partners in reversing systemic discrimination, and in democratizing health science.

Figure 11.1 Forces for Change in Health Research, Care, Delivery, and Planning

Beginning at the centre, peer research is research done by citizens who are part of co-research with peer researchers who are ‘like them.’ It provides an authentic peer research voice as part of health research, care, and policy development. Peer research includes all forms of research done by, with, and for patients that contribute a perspective of not only their experience but also their expertise in navigating diverse health systems. This leads to innovative suggestions for change that will lead to greater patient involvement and control of their personal health, technology, emancipation, and new forms of care.

The first inner ring captures the roles of patients as part of the forces for change in health research:

• Citizen scientists are recruited by academic research teams to collect local or personal data using research methods overseen by a research team. They have a wide range of citizen research roles, volunteer data collection, supervising data sites, maker spaces, including conducting research as identified in the above table of CS roles.
• In health technology–based research, patients are end users and as such should be involved in design thinking or human-centred design. Patients, and often parents of young children and care staff, are part of creating the right question to focus on developing technologies that meet patient needs and actively contributing to prototype testing.
• Citizens and patients are change makers that collaborate in JEDI-related, equity-seeking academic programs and social movements and have challenged the roles ascribed to them by the systems they use. Equity-seeking groups are pioneers who have co-designed and fostered roles as part of peer-run services such as Independent Living and Clubhouse. They are potential leaders, able to identify stigmatizing practices and JEDI solutions in collaboration with the systems that currently minimize them. Many of these formerly marginalized groups are affiliated with university social justice academic programs and could take on roles as JEDI researchers and advisors that can bring a patient voice to negotiation and planning teams in universities and health systems.

The large inner spaces represent each force’s goals for improving healthcare:

• Volunteer citizen scientists have long been seen as a force as part of the goal to democratize academic research. This volunteer role is highly valued, supporting both national health research policies of Responsible Research and Innovation (RRI) and the Open Innovation in Science (OIS).
• Health technology aspires to reduce the burden of roles related to chronic and stress-related illness. The goal for end users of health technologies is to become part of research related to creating personal and environmental devices to remediate or avoid illness and create new patient roles. A second goal relates to healthcare delivery, which relocates patient care to people’s homes and shifts focus to supporting patient roles as managers of their own care.
• JEDI principles of justice though equity, diversity, inclusion creates opening for new patient roles as leaders in identifying and collaborating with health researchers to solve entrenched discrimination across silos and systems that lead to restricted recruitment in clinical trials. It also encourages social innovation in community and population health research.

The outer ring identities the force for change.

• Citizen science: national and local health systems are looking to citizen science, and the emergence of community science, to encourage health research teams that include patients as partners in their research. This agenda reflects international science directions that began as a movement to make research accessible to everyone and ensure that research is relevant to citizens and research teams. There are challenges in opening health research to patient and public involvement, but progress is being made, especially in the EU development of citizen science for health and national health plans such as Canada’s SPOR health policy’s strategies for patient-oriented research.
• Health technology: Merging physical, digital, and biological technologies to create an integrated internet of things (IoT) provides a realistic example already being used in home care and chronic care networks. The ethical management of these systems is yet to be accomplished. Early experimentation on vulnerable and largely unseen patients may seem warranted from economic perspectives but sends an alarm about the urgent need to consider future patient roles, particularly those who are not considered able to make decisions. The growing interest in closed-loop decision-making may jeopardize not only the role of health professionals in monitoring care but how to protect quality of life and the need for compassionate models for end-of-life care.
• JEDI at this stage in health research is fragmented and has yet to become part of the challenge to health grants to find ways to address the need for justice in health research, particularly the inclusion and diversity in recruitment. Current clinical research has been hampered by limited selection of equity-seeking populations, especially those who are marginalized and unfortunately their health suffers on the margins. Community-based participatory health research and social justice academic programs in areas such as disability, mental health, Indigenous studies, and race celebrate the strengths and assets of these communities as allies in JEDI.

The Changing Landscape of Health Research and Future Roles of Patients

This section describes the three forces for change as it relates to patient relationships with academic researchers and healthcare options.

Citizen Science and Open Innovation in Science

The first mention of people being involved in conducting research occurred in an MIT technology review in 1989 when community labs were described using citizens who were studying environmental issues. It began as an amateur or volunteer opportunity for citizens to become involved to study personal interests in the natural sciences, media, and information science. It attracted mainly women looking to contribute to science while meeting others and sharing ideas. Space research attracted many men interested in the analysis of space data. While it began to extend the reach of both funded and exploratory research, it has broadened to include school programs to introduce science by learning about science and conducting local research. Local citizen scientists also contribute local data to extend internationally sourced data and provide increasing opportunities to expand the scope of collaboration internationally.

A range of other participatory sciences (participatory action research, community-based participatory health research, and critical research) also support democratization of science by engaging citizens and communities in co-design as co-researchers and in some cases the data and outcomes are owned either jointly or by the communities, as in the First Nations Information Governance Centre’s (FNIGC) First Nations Principles of OCAP® (https://fnigc.ca/ocap-training) declaration that includes principles of ownership, control, access, and possession of cultural knowledge, data, and information. This ownership principle states that a community or group owns information collectively in the same way that an individual owns his or her personal information. While this was difficult for many researchers to process, it has provided an example for other groups struggling to conduct research that is meaningful and essential as part of their identity. OCAP provides interesting options that open dialogue of equals between academic research and communities and has been an important example for emancipatory research initiatives, especially for community science and peer research.

Community science as a participatory science recognizes the interest and capacity of communities to initiate research that is important to them, but it is unlikely that these local communities can achieve the impact that OCAP has produced. For example, Hunter et al. (2023, https://doi.org/10.1002/fee.2635) identified very different attributions at this early stage where citizen science was widely recognized, community science that is community based and initiated by communities with few formal scientists and collaborators. It might be suggested that community science might consider SoE as a foundation for community-based peer research to reinforce the importance of community-led research as a distinct methodology apart from the large variety of citizen science methods currently used by different disciplines as defined by the supervising scientists and their research home. The presence of community science begins to suggest commonalities with personal science networks and peer research that share the need for a code of ethics for research conducted outside of formal research ethics approaches as part of citizen science. Remmers et al. (2023, https://doi.org/10.13137/1825-5167/35356) have created a strong emancipatory approach to ethics in citizen science that is appropriate for personal, peer, and community science as well. The social contracts for research (Chapter 3) could also be used effectively to clarify roles and expectations throughout the research process as citizens and patients are involved in research.

National and international policies to democratize science that include patients and the public in health research seem to consider that current citizen science volunteer roles as primary data collector will remain consistent in academic health research in the future. In my dealings with citizen science in the United States, there were concerns about new roles for patients that could change volunteer roles as data collection if these citizens were to be allowed to conduct research co-designed to be specific to patients. However, the theoretical models of citizen roles include citizens conducting independent research as part of CS teams. There were also concerns expressed about citizens conducting research that academics might feel unable to supervise or use. Hopefully, this science of engagement in health research and innovation will provide a way for teams and their citizen partners to explore peer research.

CS has had a major role in exploring and sharing research approaches because it crosses disciplines. Conferences convened because of the engagement of citizens in science provide one of the few ways that researchers and citizens from wildly different domains can share ideas. In my first conference I joined in conversations about data analysis with researchers working with frogs, analyzing space data, and worried about pollution in rural areas. One has only to look at the nature of patient roles in the above table to understand why CS continues to lead in testing and advancing new methods for research. For example, CS was an early adopter of crowdsourcing and, along with open innovation in science, is creating theory related to data collection and non-traditional data collection online. Crowdsourcing methods as part of citizen science, has made significant theoretical progress as seen in this recent article by Beck et al. (2024, https://doi.org/10.5334/cstp.691) that identifies five basic models of crowdsourcing that considers the history of communication technologies to get more data and to how to engage groups more effectively and how to manage and analyze the data. The five models formalize the scope of crowdsourcing. While this is an exciting venture that includes more citizens, it seldom engages patients or extends the roles of patients to engage citizens or co-analyze data.

That said, CS seems to attract a very narrow range of citizen scientists, likely because it relies on volunteers who have free time and a desire to use their time to make a difference. This fosters strong connections among citizen scientists but also means that the voices of marginalized populations are seldom present. I noticed that conference goers seemed concerned that these groups were not represented. These marginalized populations provide opportunities for co-research and peer methods that can customize the data to collect, how to collect it, and collaborative ways to analyze data to use research to understand what is happening and potential solutions.

The following table describes a natural history of citizen science in health as a result of health system policies for patient engagement. There are two facets to citizen science. The early response to national policies for patient-oriented research and the historical inclusion of citizens as part of research teams. The shaded sections identify examples.

JEDI-A: Justice in Health Through Equity, Diversity, and Inclusion

JEDI emerged in the 1960s as an American affirmative action initiative to ensure fair treatment in the workplace, and it continues to evolve to promote non-discrimination in hiring, employment, and work relationships. More recently, academic institutions provide support for non-discrimination of staff and students with efforts to encourage diversity and inclusion. JEDI appears to resonate in social justice programs related to discrimination and marginalization due to gender, Indigeneity, poverty, and disability. These programs bring their focus on identity to inform JEDI.

JEDI is the newest force to be introduced to health research and brings attention to the policies and practices that restrict inclusion of equity-seeking groups in healthcare, policy, and research. We were invited to move to the Faculty of Medicine with an invitation to introduce opportunities for marginalized groups to be included in health research decisions and promote inclusive models of healthcare. We soon learned that community-based participatory health research pioneered inclusion, equity, and diversity at local levels and communities are included in all stages of research. Within medicine, JEDI-A has begun to suggest the need for professional sensitivity to systemic discrimination in clinical practice and care. Health research has had a lack of diversity and inclusion in clinical trials that have compromised care for marginalized groups. One has only to consider the struggle to include women in clinical trials let alone all other equity-seeking groups. In health this is exacerbated by research and treatment silos that restrict sharing information about how this can be done. The A in JEDI-A stands for access, particularly related to disability, but the lack of appropriate access is common in most systems and for most marginalized groups whether related to identity or medical conditions. JEDI research in health provides a focus, not only for marginalized groups but for studying intersectionality as a factor in medical research (Chase, 2022, https://library.usa.edu/inclusive-intersectional-research).

The importance of using JEDI-A principles to counteract and avoid systemic discrimination in health research marks the recognition that group identity is both a legitimate construct to understand the roles of patients in health research and their access to appropriate healthcare. JEDI, from this perspective, is informed by traditions of symbolic interactionism, critical theory, role theory, Eriksonian psychology, and social identity theory that reinforce the importance of language and interactions as part of identity. Our position of disability studies in the Faculty of Medicine is a case in point. While our undergraduate degree is extremely successful, our graduate program struggles because disability studies does not exist within a research culture of significant grant opportunities and thus cannot sponsor graduate applicants. This means that few applicants are accepted and those who are accepted are expected to take required medical courses rather than courses in critical theory, social change, prevention and health promotion, and emancipatory research methods. In the future courses in salutogenesis, JEDI, and systemic discrimination in healthcare and research, and the future of healthcare and research, will become essential for all community health and medical students. If the anticipated shift to technology-based care materializes, future graduates will need to be ready to transition to future models of healthcare that will see a focus on new roles for patients, especially as health technologies support the shift from current models to prevention and promotion managed by patients.

Salutogenesis and two new theories of SoE—patient standpoint theory and a patient perspective of health systems—provide opportunities to track patient roles during transition. Salutogenesis is a powerful tool to understand what is needed to shift to the study and introduction of prevention and promotion as part of healthcare and research. While pathogenesis has been the dominant foundation in medicine, positive outcomes that support new patient roles in their health and healthcare are possible, especially when ‘health’ care incorporates salutogenesis as part of treatments. This enables patients to realize that health problems are ubiquitous and provide opportunities to learn and use the opportunity to become stronger and more adept in managing stressors of everyday living.

The visual representation of how patients create their version of their health systems in Chapter 9 reinforces JEDI principles of inclusion, diversity, and access. This is being reinforced as an aging population requires many supports normally associated with medical systems, and this means that these community and mainstream services will be available as part of person-centred health systems. This simple concept can be used as more healthcare shifts from institutional needs to prevention and promotion.

Patient standpoint theory has been co-designed through many iterations with groups who have been marginalized in their experience of illness and trauma. It is an analytic tool that visually locates experience within four psychological spaces in health systems according to identity and agency. It also includes transition options that can identify options for equity, diversity, and inclusion. In identity-based groups, visual depictions using colour and characteristics support in-depth analysis of difficult health experiences that suggest alternatives for moving from health crises and dependence toward acceptance and competence. It seems an important guide for transition to equity and justice from the culture of health based on difference and dependence.

An example of the importance of working to build more supports that are in the quadrant of belonging and acceptance can be found in the doula movements that originated over 30 years ago to provide support during life transitions, both through the birthing process and support for people at end of life. These movements provide training to offer support during times of uncertainty and change. The doula concept is being picked up as alternative ways to support those living with mental health concerns. These movements, like personal health science, explore positive supports during experiences associated with health services that may inform future emancipatory research methods. Boulton et al. (n.d., https://cumming.ucalgary.ca/sites/default/files/teams/382/RMHD-Powerpoint.pdf) provides an example that research conducted to support alternatives will continue to grow.

These theories relate to emancipatory peer research that, in this respect, are best understood within the PaCER training and research of Indigenous community members who have been able to honour Indigenous ways of knowing and Indigenous science in their peer research. Peer researchers from marginalized communities, even those marginalized by their health conditions, become spokespeople to reduce discrimination and promote emancipation. One of the most effective tools is discourse analysis, which is included at the end of this chapter. This includes analysis of language, relationships, and clear, responsible, recorded action to remedy barriers to justice. Change will be short-lived at best unless all parties related to discrimination are involved.

If those who are impacted because of their social identity are not active agents, they will rely on the system to fix the problems or remain uninformed about efforts to make change. This just reinforces the reliance on professionals to solve their problems and will leave their personal identity more entrenched in compliance and dependence, which will further impact their vulnerability within the system.

This force for change is too new to have a history within healthcare and universities, but the following are potential assets within current universities to support JEDI as a force to impact current practice in health research.

• Education, sociology, nursing and community health emancipatory science projects.
• Equity-seeking social justice academic programs such as disability studies.
• Groups that have had success in working with health research and technology companies to learn from their experience. For example, rare disease research companies are fostered by parents and patients who become partners and pay for their data.
• Guidance of Patient Advisors Networks to work with university equity-seeking programs and identity groups related to health to understand options for collaboration.
• Finding conference venues to introduce JEDI to citizen science.

Health Technologies as a Force for Change

Future technology-based healthcare would improve patient experience and outcomes through sensors that monitor health status, shifting from acute care to prevention and promotion that will change the paradigm of healthcare as technologies move to homes where patients understand and use technologies. These changes are expected by increasing productive life years and general health.

Precision medicine already holds great promise for prevention and public health, by identifying predisposed or high-risk patients for specific conditions and quickly developing treatment and remediation options to reverse or manage potential illness. This is particularly important for non-communicable disease, which accounts for 75 to 80 percent of healthcare costs. This also targets stress-related disease by targeting the source of stress and improving stress management. These two alone would dramatically change the configuration of what we know today as healthcare (Schwab & Davis, 2018).

While the overarching slogan of ‘changing who we are’ is couched in emancipatory language, the patient voice is secondary at this early stage. It is essential that health research find new ways to create stakeholder roles for patients. Canada’s medical system has declared that patients are the most underutilized resource in a digital health reality, but important decisions must be made if patients are to be stakeholders in their future on who owns patient data and who controls technology.

It is not the remit of the science of engagement to study technology per se. However, the MANBRIC rubric of technologies suggest how medical, additive, nano, biological, robotic, information and cognitive technologies might impact not only deficits and illness but enhance our lives (Grinin et al., 2017, https://doi.org/10.1007/978-3-319-49604-7_13). By 2018, the field of technical and biological technology in healthcare produced astounding advances in medical technologies. I take the liberty of including the following resources: a report from the World Economic Forum on health and healthcare in the fourth industrial revolution (Goy et al., 2019, https://www3.weforum.org/docs/WEF__Shaping_the_Future_of_Health_Council_Report.pdf). Healthcare Information and Management Systems Society (HIMSS) is a member-based society committed to reforming the global health ecosystem through the power of information and technology (HIMSS, n.d., https://www.himss.org/what-we-do-initiatives/accelerate-health), and this second resource from Dassault Systemes (n.d., https://discover.3ds.com/are-you-ready-future-healthcare), Are you ready for the future of healthcare?, is typical of innovation in life sciences (health sciences) and demonstrates the parallel universe of healthcare outside of the typical innovation framework.

Technology advances are changing all aspects of society as work, healthcare, and education are redefined, and our very social reality seems likely to change. The ability to combine biological, physical and digital technologies seem particularly poised to transform healthcare as we know it. For example, primary care is migrating to multipurpose pharmacies using the scaling power of artificial intelligence diagnostics. Large delivery companies such as Amazon are investing in new diagnostics to receive, process, and send medications and devices (while being involved in localizing 3-D printing to reduce inventory and travel costs) (CB Insights, 2022, https://www.cbinsights.com/research/report/amazon-disruption-industries/).

Patients today are already more motivated, competent, and ready to move into new stakeholder roles. Patients and citizens are moving ahead to adopt new technologies on their own. We can see this in the response to open access to medical records. While electronic health records are still cumbersome and complex, new online supports allow patients to curate their own health records, to learn how to use their records to seek treatment, research, and peer support options around the world.

Patients will need to be taught to use technology so they can identify emerging threats and support wellness. This learning may occur as part of school curriculum or in the emergence of online training connected to the transition to smart technologies. Health technology coaches are already part of online chronic care networks and hopefully research will identify the benefits for patients and families. Health and healthcare delivery will be present at home, with a greater input of people or patients themselves. This is often referred to as the consumerization of healthcare that will be delivered as a seamless continuum of care, away from the clinic-centric point-of-care model. Broadly defined, the consumerization of healthcare is the trend of individuals asserting more influence and control over their medical and wellness care. To address this, non-traditional companies such as those in the retail, technology, and consumer packaged goods sectors are looking to address consumer and patient needs (UBS, 2020).

However, citizens could remain confined to being compliant end users of technology instead of increasing patient personal control, privacy, and value. There are a few detailed references to increasing patient control through self-regulating technology, assistive devices, and robots. It is almost impossible to find research and policy about how this might happen and how it will be adopted, let alone the role of patients in all stages of research and innovation. There are major risks to privacy in the use of sensors used in surveillance. We need to guard the use of sensor data without consent if commercialization of health data is not curated and controlled. If cost containment continues to be the driver of innovation, we could see the hard-won advances in consumer or patient control over their personal health and healthcare eroded.

Anticipated change will need robust and diverse patient/citizen methods and data systems based on real-life patient experience that is able to anticipate and respond to change as it evolves. Just as real-life physician data helped guide online care of complex conditions and hard-to-reach patients, the current focus on POR, while standardized and effective in clinical health patient experience research, is not real-life patient experience. Peer research on the other hand can facilitate targeted real-life data that can inform AI and machine learning. Peer research is also compatible with online networks and data security that is ready made to provide in vivo data for machine learning.

The short history of health technology as part of healthcare is presented below.

These forces for change will hopefully prepare readers to engage in discussions about change. The key would seem to be the need for researchers and patients to discuss these forces together to be on the lookout for indications of their presence. These forces share visions of a future where the burden of chronic and stress-related illness is lessened, giving way to a future that relies more on early signs and interventions supported by focus on health promotion that become part of education and supported by funding options that enable people to access needed community services and opportunities. They see home-based services and communities willing to build inclusive, diverse, and accessible supports using different mechanisms. Democratization includes patients and communities as co-designers and co-researchers as they respond to change. JEDI focus on removing barriers to change by focusing on justice (emancipation) for citizens that result from sharing equity (power), encouraging diversity and inclusion of those groups who seek equity. Finally, health technology builds new tools to identify and prevent illness while promoting decentralized, home-based care and support that combine technologies and promote patient engagement in their health and healthcare.

Supporting Emancipatory Research

This last section addresses how the science of engagement supports these forces for change. In healthcare and research the idea of democracy embraces inclusion and equality to be heard and respected in decisions about them. It has become clear through the arc of writing this book that past patient roles of compliance in care and exclusion in research will change as a result of democratization.

In this last topic we look at how emancipatory science theory and methods supports all three forces for change.

It has seemed symbolic that these forces for change co-exist with the emancipatory foundations of disability studies and other programs that seek equity for minimized groups. In our early stages we were also early adopters of the internet to deliver both undergraduate and graduate degrees. Disability studies followed feminist and Indigenous studies to bring social justice issues to university campuses, and we hired a technology expert who was disabled to develop courses and a research program. Our program supported the use of technology in vocational rehabilitation, accessible sport, and special Olympics, adaptive technology as part of daily living and environmental accessibility. Our faculty members, students, and graduates have become leaders in emancipatory practice and research. All three forces will need robust and diverse methods and data science based on real-life patient experience to anticipate and respond to change as it evolves.

For example, JEDI-A committees could recruit members and community advocates from programs committed to democratizing healthcare and research to inform JEDI teams of specific forms of systemic discrimination and research methods to find solutions. Discrimination is not equal or the same for each group. This might encourage groups to share methods, information, and ways to work together to support JEDI.

SoE itself has emancipatory theory to inform JEDI: salutogenesis, narrative, health system and patient standpoint theories bring an emancipatory research foundation to JEDI committees.

• Salutogenesis as a theory supporting well-being in the face of medical challenges and relationships, provides a way to balance the strong pathogenic focus in most health research. Clinical work is pathogenic and, in the past, has been complicit in excluding a wide range of potential subjects in clinical trials. Salutogenesis as a comprehensive theory of how patients can learn from difficult experiences and informs the implementation of JEDI principles to create positive outcomes. In particular the stressors associated with systemic discrimination can use mapping sentences to unpack how specific stressors can be analyzed and subjected to resistance resources to resolve the impact of the stressors, especially those related to chronic health stressors.
• Narrative and the power of stories can be used to convey complex ideas related to both current stressors and aspirational solutions, particularly aspirational stories of what might be possible in the future. Narrative is particularly important when unpacking systemic problems that are difficult to analyse through more traditional questionnaires and interviews. The use of story properties such as who, where, when, and why unpack common features of discriminatory acts.
• Patient perspective of health systems encourages groups to create their own understanding of the systems they would like to use, including both formal health systems and those as part of alternative or mainstream options. It may be that groups that have been marginalized have found alternative options that reduce the impact of systemic barriers to health.
• Standpoint theory incorporates the principles of JEDI within the diagram of the psychological spaces related to healthcare and research experience. The following example of an emancipatory theory is presented to demonstrate how theory opens opportunities for innovation, inclusion, and diversity that suggest different and salutogenic approaches to understanding the unintended and unstudied impact of current health systems.

Figure 11.2 Basic Structure of a Patient Standpoint Map

Note: Based on positive and negative self-regard poles and internal and external locus of control poles. Also included are the related JEDI principles in capital letters.

This diagram of psychological spaces in healthcare and personal health help identify their primary impact.

• The blue ‘competence’ quadrant denotes that those who are both in control and feeling competent are more likely to be treated fairly, impartially, and reasonably because they feel in control of their lives and expect to be treated fairly.
• The red ‘crisis and change’ quadrant is about people becoming different than they were previously because their lives have changed dramatically due to illness, trauma, or loss. They also feel it is somehow their fault that they are different and have two options to reframe their identity: either to see difference as a challenge that can be overcome (move back to blue) that will reinforce their control and acceptance of difference; or to move into the grey quadrant and accept a life without power and control.
• The grey quadrant of ‘learned helplessness and letting go’ is about the loss of equity or power over their lives. They learn to accept life without power or become motivated to avoid failure.
• The yellow quadrant of ‘acceptance and belonging’ is about being included and being part of groups that affirm their identity.

This standpoint also includes the transitions between these spaces and the principles they represent. Online chronic illness communities are situated to use this standpoint theory because they have already transitioned through blue and red to grey and are now in a yellow community that encourages them to increase their self-regard. Unlike most current healthcare systems, they are based on peer support instead of personalized care. These groups experiment and learn new skills like using technology to join online communities and to experiment with technologies that can improve their self-concept to support treatment options. Peer support and treatment options challenge the individual nature to support new forms of online chronic care.

Finally, other disciplines have historically supported marginalized groups in their quest to provide support and develop new wellness options. Education faculties have been informed by the Pedagogy of the Oppressed of Paulo Freire (2000, original 1970) in creating safe and respectful learning opportunities for students from marginalized groups. The struggles to eliminate harsh punishment and discrimination are common in sociology and ethnography. Nurses, particularly community health nurses, share a commitment to community participatory research and have become advocates for patients within health systems. Environmental designers have been leaders in emancipatory architecture and inclusive community planning.

The following goals of health-related technologies address the emancipation of patients in their health and healthcare as full partners in healthcare transformation from numerous media and research literature.

Patients have much to gain and much to lose depending on our willingness to include them as stakeholders at all stages of digital transformation (Miller, 2016, https://www.telegraph.co.uk/wellbeing/future-health/welcome-to-the-150-club). One would hope that patients have access to smart technology so they can closely monitor themselves. They can have devices that will constantly measure their heart rate, blood pressure, breathing, weight, or activity levels. While there is much rhetoric about patient control, most of the attention is still focused on the doctor-patient relationship. The exception is patient ownership of records, and how this creates conflicted ownership within the healthcare system (Schwab & Davis, 2018).

Next Steps

This chapter has evolved dramatically, and to this end it has become a process of thinking about the social innovation of peer research/design thinking alliances that could have a major impact on healthcare transformation and social enterprise. By capitalizing on the connections of peer research to citizen science, peer research could become an active research partner in OIS and related Responsible Research and Innovation models.

It is speculative, but in innovation the number one rule is to think BIG.

Summary

This chapter was added at the end of the preparations for publication and the amount of material could easily become a book by itself. The major problem I see is that health has been cloistered within systems and silos that make them immune to challenges.

Questions for Discussion

This new chapter opens the door to many discussions and opportunities to include patients and communities in the major healthcare options of transformation as part of medical science, and design thinking. There are many questions that might be asked:

1. Set up a discussion between a peer researcher and traditional health researcher about applying for funding for a topic you are interested in. Switch roles. What questions came up that surprised you?
2. Which patient roles were familiar to you and why? What roles might be difficult for you to take up?
3. Using the table of citizen science roles, which roles are you familiar with? Which ones would you feel comfortable in and which roles would you use in your research? Discuss how these roles of citizen science relate to your understanding of peer research.
4. Have you read publications about citizen science? If not, go to the citizen science journal site and choose one to read.
5. Have you known anyone who has used citizen science in their research? What did they learn during that process? What would they change about the experience?
6. What are the differences between citizen science and the research you have been involved with?
7. Did you read the JEDI toolkit? Does it apply to your work? What could you use in your work?
8. Health technologies are advancing every year. The World Economic Forum hosts several articles about the future of healthcare on their site (https://www.weforum.org/stories/health-and-healthcare-systems/). Read Nagappan (2024, https://www.weforum.org/agenda/2024/02/health-tech-healthcare-telangana/) and Bourla (2025, https://www.weforum.org/stories/2025/01/the-3-megatrends-that-will-shape-the-future-of-health/) and discuss them with a partner or group. How will these advancements impact your work and research?

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