Section 2

International Anti–Oppression and Emancipation Movements That Underlie Peer Research and Engagement

The move to engage populations and citizens in health has been led by the World Health Organization, as seen in their strategic direction for patient and community engagement outlined in their global strategy interim report.

Empowerment: Wherein people and communities take control of their health through health promotion, prevention, and health partnerships. Canada was an early pioneer of health promotion, both in creating international health promotion approaches as seen in the Ottawa Charter for Health Promotion (WHO, 1986, https://www.who.int/teams/health-promotion/enhanced-wellbeing/first-global-conference) and community-based participatory research.

Engagement: Promotes the need for communities and citizens to share decision-making and healthcare planning. This has been the focus of most public participation initiatives. Engagement science and peer research provides support for advisors and teams involved in decision-making and planning for effective and engaging care.

Co-production: This includes stable partnerships between citizens, planners, healthcare providers, and researchers, and is a long-term goal for most countries. It is here that we will see the most dramatic shifts in healthcare. While this goal is not yet part of policy, apart from the European Union Citizen Science support, many of our first graduates have created ongoing collegial relationships with research and planning teams. It is hoped that as more national research teams sponsor training, these long-term relationships will become a feature of the Canadian health landscape.

The concepts of the above goals of empowerment, engagement, and co-production began with Freire’s (2000) pedagogy of the oppressed in low-income countries, and evolved to current critical consciousness theories supporting marginalized or oppressed people’s analysis of societal inequities and their motivation and actions to redress such inequities (Diemer et al., 2016, https://doi.org/10.1111/cdep.12193). WHO was an early adopter of emancipatory approaches of pedagogy of oppression. The focus on oppression expanded and aligned with critical theory to promote freedom from systemic discrimination all too common in health, welfare, economic, and legal institutions. JEDI-A: Justice through equity, diversity, and inclusion (now including access rights for disability and Indigenous populations) is a recent affirmative action movement.

Emancipatory Movements in Health

Women, Black, Disabled, and Indigenous people challenge discrimination in developed countries, which produced transformative research, community development research, and social rights movements. Citizen health versions of critical pedagogy emerged in the health landscape with core principles that still apply today, as the move to emancipate patients becomes a reality. The following learnings from citizen healthcare (Doherty & Mendenhall, 2006, https://doi.org/10.1037/1091-7527.24.3.251) relate to the emancipation in research.

The following is an overview of the players in this patient engagement health space.

The current interest in emancipation of patients is perhaps best articulated by Charlotte Williamson (2008, https://doi.org/10.1111/j.1369-7625.2007.00475.x), who traces the growth of emancipatory actions of patients from the late 1950s to current challenges to systemic discrimination. Although the movement is fractured and still evolving, the goal of British activists is not to diminish healthcare systems but to make the system a better place for everyone, by working toward principles of respect, information, access, choice, shared decision-making, safety, and equity.

An example of community-based citizen science in New Zealand (Metcalfe & Style, 2019, https://doi.org/10.1080/15265161.2019.1619874) demonstrates an emancipatory cultural partnership recognizes the validity of Indigenous science as part of national ethical health research. It clearly identifies the value of extended relationships that combine both robust scientific research within the STEMM (science, technology, engineering, mathematics, and medicine) in community capacity building and the co-production of patient-researcher partnerships in research and policy.

The inclusion of Indigenous ethics and conventional bioethics is a novel approach that could inform countries that have developed separate Indigenous ethics. New Zealand’s experience includes epistemological diversity that builds on constant negotiation about ownership of data. This is necessary for democratization of science but, in the process, creates innovative ways of doing and thinking for scientists. These learnings are not only important for community research, but also academic research partnerships that strive to conduct action research that can empower all partners.

International Research Models of Participation and Engagement in Citizen Science

The renaissance of citizen science grew from participatory action research (PAR) and the third industrial revolution of computing power and communications networks. It coincided with the move among governmental research funders to include research about real-life problems to have greater impact and increase the relevance of science to the public. The widespread and rapid uptake of internet social media spawned new research networks, crowdsourcing data collection, and online groups that dramatically changed the nature of recruitment and data collection. Dispersed computing power enabled big data projects to operate more efficiently. The following are the engagement change makers in citizen science.

Citizen Science Research Models

Table S2.1, adapted from Strasser et al. (2019, https://doi.org/10.23987/sts.60425) focuses on an international review of participatory or engagement models in research that have been identified in the last decade as part of citizen science. The International Association of Public Participation (IAP2), a leader in public participation since the early 1990s has also been included. Community-based participatory research has not been included in most citizen science approaches but actively engages communities in identifying and contributing to participatory action research to solve common community problems. Michel Duke’s (2020, https://doi.org/10.1093/acrefore/9780190854584.013.225) overview of CBPR provides a broad overview of the range of this participatory research movement. This model is introduced here to consider early research models and again in the last chapter to ground discussion on bridging between health research and innovation. It is used here to introduce the range of citizen roles that are possible in citizen science. This table returns at the end of the book to explore how these roles build bridges between research and innovation.

Note: adapted from Strasser et al., 2019

Bonney et al. (2009, https://files.eric.ed.gov/fulltext/ED519688.pdf) provides a comprehensive description of the way researchers view citizen involvement in projects, beginning with the most common role of patients as data contributors in quantitative health research. In the second collaborative level, citizens are included in refining the research focus, analysis and dissemination. At the co-creation level, we see the goal of authentic and fulsome engagement, where citizens are engaged throughout the research process.

In Shirk et al.’s (2012, http://dx.doi.org/10.5751/ES-04705-170229) ladder, the first two rungs of the ladder are like Bonney’s and in the third, collaborative level, citizens assist throughout research with shared goals. By the fourth rung, citizen scientists are developing and conducting parallel research of interest or concern to citizens with input and support of the scientists.

• The Dutch personal health research foundation, ‘My Data, Our Health’ encourages and supports citizens to conduct research on their health condition and share their results on an open platform. This is an example of Shirk’s final step, where citizens are seen as colleagues who independently conduct research independently or as part of the research team.
• This parallel research model is emerging where government patient-engagement funding (e.g., SPOR) is set aside for patients to suggest research ideas, and funding is provided to hire a research team to conduct the research with the patient lead. (Gajic, 2022, https://unityhealth.to/2022/09/patient-led-research/)
• Some teams have supported citizens to conduct their own research that may or may not be integrated into the final research report.
• The other version is the PaCER model of engagement (https://www.ucalgary.ca/patient-community-engagement-research), where the peer researchers are trained in engagement methods, sponsored by research teams, to conduct research about a common concern from a patient perspective.
• The Patient Led Research Hub (https://plrh.org) has become a powerful independent research approach where researchers who share common concerns work together to conduct research and publish results.

Haklay (2013) and Woolley et al. (2013, https://doi.org/10.1186/s12910-016-0117-1) introduce levels of participation within web-based, crowdsourced citizen science. This work is grounded in collective intelligence that emerges in crowdsourcing because of the potential for large, distributed data sets. They posit that four criteria are necessary—independent contributors, diversity of opinion, decentralization, and a way to aggregate the results. The levels reflect not steps to engagement but the type of data collection, beginning with crowdsourcing at the sensing level, where citizens contribute specifically defined data. Distributing the conceptual and analytic skills of citizens using their computers follows, and it is not until the third level that citizens participate in research design. They do include a final step, which implies that some of the web community of citizen scientists are engaged as partners in technology.

Strasser et al. (2019, https://doi.org/10.23987/sts.60425) provide a practical set of functions that can be done by citizens, from sensing, computing, analyzing, self-reporting, and making (innovating products and processes).

These models inform options for engaged health research, from clinical trials to narrative research, and set goals for engagement in health research. Both PaCER and community-based participatory research (Zimmerman, 2020) are represented in the highest levels of the table.

Summary of the Chapters

In keeping with emancipatory goals, the key feature is the ability to create research that is participatory, natural, creative, and action oriented. Chapter 5 provides an overview of patient engagement through published articles. Chapter 6 introduces salutogenesis as a theory of patient expertise creating a culture of competence. Chapter 7 explores the history, theory, and methods of narrative research. And finally, Chapter 8 is a researcher’s guide to including engagement methods as part of qualitative research.

All chapters are aligned with the importance of an engagement strategy that ensures co-research from a patient-selected main concern to reflection on finding and planning for the future. The goal is to suggest a large number of tested qualitative methods and theories adapted to support patient engagement in research in order for researchers and students to experiment with these methods.

Resources

Peer Research Projects Done by Peer Researchers

The PaCER hub is an open access repository in the PRISM database at the University of Calgary (https://prism.ucalgary.ca/handle/1880/109933). This was established to provide an open access and dialogue for patient-led research. The goal is to encourage peer research projects and research that meet the criteria of being done by, with, and for patients. It was intended to become an international hub of patient and peer research, allowing those with an interest in peer research to share their ideas and their research.

Araujo, E. (2015). Uncertainty about cancer: The experiences of immigrant women. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109962

Banerjee, C., Brehm, G., Hanberg, H., Hylton, C., Maverley, D., Swendson, Y., & Zelinsky, S. (2013). The hidden pathways of chronic illness. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109953

Boulton, D., Oswell, D., & Oxland, P. (2015). Patient and family experiences when moving from the intensive care unit (ICU) to a hospital ward. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109947

Bryk, C., Lewis, T. R., Penman, C., Miller, J., & Teare, S. (2013). The experience of waiting for help with osteoarthritis. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109968

Carriere, C., Escoto, M., Vera, S., & Zaman, S. (2021). Unplugging while plugged in: A peer to peer exploration of the impacts of dialysis on the mental wellness of patients with chronic kidney disease. (Unpublished PaCER report). University of Calgary. http://hdl.handle.net/1880/113479

Choudhury, R., Robertshaw, S., Wheeler, L., & Pearson, W. (2016). Experiences of heart related symptoms among younger women. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109969

Choudhury, R., & Wheeler, L. (2018). Patient Engagement in Breast Health Education Initiative (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109937

Fairs, C., Lengkeek, S., Van Engelen, A., & McKinney, L. (2016). Living with inflammatory bowel disease. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109952

Gill, M., Araujo, E., Nguyen, S., Hylton, C., & Banerjee, C. (2016). Understanding low back pain patients’ experience with family physicians and diagnostic imaging. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109965

Gill, M., Boulton, D., Oswell, D., & Oxland, P. (2014). Understanding patient and family experiences in the daily care of critically ill patients. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109970

Gill, M., Nguyen, S., Sarsfield, B., & Shklarov, S. (2017). Patient experience of waiting for elective surgery. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109941

Gill, M., Nguyen, S., & Sarsfield, B. (2016). Understanding patient perspectives on stroke prevention therapy decisions in atrial fibrilation. (PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109934

Gill, M., Penman, C., & Nguyen, S. (2015). Understanding how patients manage their chronic illness: What works and how. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109945

Gill, M., Zelinsky, S., Gillis, C., & Nguyen, S. (2016). ERAS from the patient perspective. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109966

Gill, M., & Sheridan, M. (2013). The experience of living with chronic joint pain (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109967

Kalia, R., Khan, R., Sheridan, M., Marlett, N., Shklarov, S., & Gill, M. (2013). Oh! Canada: South East Asian immigrant experience of osteoarthritis (OA) surgery. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109955

Koczkur, S., Halton, E., Sarsfield, B., Adams, S., & Hellard, O. (2015). Losing our stories: Early Experiences of individuals facing mental illness (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109949

Kockzur, S., Halton, E., & Pintson, K. (2018). I promised we’d get help: The parent’s journey –Experiences of parents and family of youth visiting the emergency department with mental health concerns. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109951

Kolstad, A., Tadeja, M., Samuel, G., & Prajapati, V. (2016). Uncovering the experiences of adolescents after a concussion. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109964

Marlett, N., Gill, M., Kozcur, S., & Choudhury, R. (2017). Patient perspectives and expectations about primary care by occasional users, seniors and those with complex and chronic care needs. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109950

Miller, J. & Teare, S. (2014). Report on the PaCER component of the AS MOC study. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109961

Miller, J. & Teare, S. (2015). Issues faced by First Nations, Metis and Inuit rheumatoid arthritis patients in accessing and navigating the health care system. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109943

Miller, J., & Teare, S. (2015). Meaningful results from meaningful engagement: Enabling patient and family participation in the AHS Seniors Health SCN. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109971

Miller, J. & Teare, S. (2015). Optimizing centralized intake for rheumatoid arthritis: A PaCER study. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109942

Miller, J., & Teare, S. (2016). Patient Engagement to identify priorities for shared decision-making tools in cardiac care. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109957

Miller, J., & Teare, S. (2017). Report on the PaCER component of the knee osteoarthritis and self –management knowledge. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109944

Miller, J. & Teare, S. (2017). Your experience with the Make It Work Program—The voice of program participants. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109959

Miller, J., & Teare, S. (2018). The longer-term impacts of the Making It Work Program on working and living with IA. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109960

Miller, J., & Teare, S. (2019). Report on the analysis of the PaCER patient interviews from KOASK phase 2. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109956

Murphy, B., Ryan, L., & Sharman, D. (2016). Patient and family experiences: The first days after stroke. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109946

Nguyen, S., & Gill, M. (2018). Understanding patient experience with bladder cancer in Alberta. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109936

Rashika, K., Khan, R., Banerjee, C., Asghar, N., & Boulton, D. (2015). Understanding advanced care planning within the South Asian community. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109940

Roland, B., Wheatley, V., Jones, A., & Gillis, C. (2017). Stillbirth, still life: A qualitative patient-led study on parents’ unsilenced stories of stillbirth. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109948

Shearkani, S., McKinnon, A., & Maybee, A. (2016). Uncovering the experiences of patients and caregivers as couples. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109958Sheridan, M., Zelinsky, S., & Gill, M. (2014). Understanding safe surgery checklist experiences of surgical patients in Alberta. (Unpublished PaCER contract report). University of Calgary. http://hdl.handle.net/1880/109963

Sim, N. (2014). I was curious, I wanted to confirm what I thought I knew and I wanted to change. (Unpublished internship report). University of Calgary. http://hdl.handle.net/1880/109954

References

Bonney, R., Ballard, H. L., Jordan, R., McCallie, E., Phillips, T., Shirk, J., & Wilderman, C.C. (2009). Public participation in scientific research: Defining the field and assessing its potential for informal science education. A CAISE Inquiry Group Report. Center for Advancement of Informal Science Education (CAISE). https://files.eric.ed.gov/fulltext/ED519688.pdf

Diemer, M. A., Rapa, L. J., Voight, A. M., & McWhirter, E. H. (2016). Critical consciousness: A developmental approach to addressing marginalization and oppression. Child Development Perspectives, 10(4), 216–221. https://doi.org/10.1111/cdep.12193

Doherty, W. J., & Mendenhall, T. J. (2006). Citizen health care: A model for engaging patients, families, and communities as coproducers of health. Families, Systems & Health, 24(3), 251–263. https://doi.org/10.1037/1091-7527.24.3.251

Duke, M. (2020). Community-based participatory research. In Oxford Research Encyclopedia of Anthropology. Retrieved February 18, 2025, from https://doi.org/10.1093/acrefore/9780190854584.013.225

Freire, P. (2000). Pedagogy of the oppressed (30th anniversary ed.). Continuum.

Gajic, A. (2022, September 20). When patients lead, research is relevant. Unity Health Toronto. https://unityhealth.to/2022/09/patient-led-research/

Haklay, M. (2013). Citizen science and volunteered geographic information: Overview and typology of participation. In D. Siu, S. Elwood, & M. Goodchild (Eds.), Crowdsourcing geographic knowledge: Volunteered geographic information (VGI) in theory and practice (pp.105–122). SpringerNature.

International Association for Public Participation. (n.d.). Home. Retrieved July 1, 2024, from https://www.iap2.org/mpage/Home

Metcalf, V. J., & Style, R. L. (2019). Cultural considerations in citizen health science and the case for community-based approaches. American Journal of Bioethics, 19(8), 40–43. https://doi.org/10.1080/15265161.2019.1619874

Shirk, J. L., Ballard, H. L., Wilderman, C. C., Phillips, T., Wiggins, A., Jordan, R., McCallie, E., Minarchek, M., Lewenstein, B. V., Krasny, M. E., & Bonney, R. (2012). Public participation in scientific research: A framework for deliberate design. Ecology and Society 17(2), 29–49. http://dx.doi.org/10.5751/ES-04705-170229

Strasser, B. J., Baudry, J., Mahr, D., Sanchez, G., & Tancoigne, E. (2019). “Citizen science”? Rethinking science and public participation. Science & Technology Studies, 32(2), 52–76. https://doi.org/10.23987/sts.60425

Williamson, C. (2008). The patient movement as an emancipation movement. Health Expectations, 11(2), 102–112. https://doi.org/10.1111/j.1369-7625.2007.00475.x

Woolley, J. P., McGowan, M. L., Teare, H. J. A., Coathup, V., Fishman, J. R., Settersten Jr., R. A., Sterckx, S. Kaye, J., & Juengst, E. T. (2016). Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives. BMC Medical Ethics, 17, 33. https://doi.org/10.1186/s12910-016-0117-1

World Health Organization. (1986). Ottawa charter for health promotion. 1st Annual International Conference on Health Promotion, Ottawa. https://www.who.int/teams/health-promotion/enhanced-wellbeing/first-global-conference

World Health Organization. (2015). WHO global strategy on people-centred and integrated health services. Interim report. https://iris.who.int/bitstream/handle/10665/155002/WHO_HIS_SDS_2015.6_eng.pdf

Zimmerman, E. B. (Ed.). (2020). Researching health together: Engaging patients and stakeholders, from topic identification to policy change. SAGE.