Introduction to Section 2: Engaging

Through engaging citizens and communities, Peer researchers become the bridge between research teams and unheard populations

This second section called Engaging continues to encourage you to browse the research topics representing published articles and reports about the many faces of engagement in health research. The chapters: Engaging; Salutogenesis, Narrative theory, and, Engagement research methods for Qualitative researchers, have been prepared for researchers, innovators, patients and students interested in exploring new patient research voices to expand the democracy and transparency of open science. This not only builds trust in research, it meets Responsible Research and Innovation calls to deal with socially relevant concerns by including citizens in research from planning to implementation. Hopefully, this will also increase the capacity to address the JEDI (justice, equity, diversity and inclusion) in health systems.

The PaCER incubation phase with the strategic clinical networks and research teams allowed us to study peer research. This period was supported by an innovation grant from the Canadian Institute of Health Innovation and a social enterprise that used a social business model to fund training and research projects.

The move to engage populations and citizens in health has been led by the World Health Organization (link to WHO global strategy on people-centred and integrated health care) as seen in their goals for patient and community engagement (link).

• 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 (https://www.who.int/healthpromotion/conferences/previous/ottawa/en/) and community based participatory research ( Researching health together, 2020).
• Engagement promotes the need for communities and citizens to share decision making and health care 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. (link to Strategies for Patient Oriented Research (SPOR) and Community based health research)
• Co production is a long term goal for most countries and it is here that we will see the most dramatic shifts in healthcare. Many of our first graduates have created ongoing collegial relationships and it is hoped that as more national research teams sponsor training that these long term relationships will become a feature of the Canadian health landscape. Long term collegial relationships are the engines of innovation and social change. (link to ) of the team publication)

Established international models of participation and engagement in citizen science and citizen health.

The renaissance of citizen science grew from three social movements: growing liberation movements and liberation research as part of participatory action research; the third industrial revolution of computing power and communications networks, and: the move amongst governmental research funders to focus research in real life problems to have greater impact and increase the relevance of science to the public (Susan E Smith, 1997, Nurtured by Knowledge.

The liberation movements of the mid century grew as third world people, long marginalized, surfaced from colonialism, joined women, black and indigenous movements, and transformative education, community development and citizen health to share action research done within communities to work together to build a better life. Citizen health emerged first in the health landscape ( Saul Alinsky (1946) with core principles that apply today as the move to emancipate patients finally becomes a reality. This movement aligned with Community based participatory research (CBPR) which led to a Families and Democracy project. The following are several of the learnings from Citizen Healthcare that relate to the emancipation of patients in health research Citizen Health Care: A Model for Engaging Patients, Families, and Communities as Coproducers of Health

1. The greatest untapped resource for improving health care is the knowledge, wisdom and energy of Individuals, families and communities who face challenging health issues in their everyday lives
2. Get buy in from key leaders and administrators but keep budgets small to allow sufficient time for incubation before expecting outcomes.
3. Forging a sense of larger purpose beyond helpling immediate participants. Citizen health is about social change to inspire early adopters and attract media to understand, publicize and disseminate citizen health care projects.
4. People must be engaged as co producers of healthcare for themselves and their communities not merely as patients or consumers of services
5. Professionals can play a catalytic role to flatten hierarchies
6. Local communities must retrieve their own historical, cultural and religious traditions of health and healing and bring these into dialogue with contemporary medical systems
7. Citizen health initiatives should have a bold vision while working pragmaticaly on focused , specific projects.

The current interest in emancipation of patients is perhaps best articulated by Charlotte Williamson The patient movement as an emancipation movement - Williamson - 2008 - Health Expectations who traces the growth of emancipatory actions of patients from the late 1950’s to the current state of the patient movement as an emancipation movement. Although the movement is fractured and immature, the goal of activists is not to diminish health care systems but to make the world a better place for everyone by working toward principles of respect, information, access, choice, shared decision making, safety, equity

An example of community based citizen science in New Zealand that has funded a Participatory Science Platform that recognized the validity of indigenous science and national ethical health research to create a cultural partnership and inclusivity in citizen science. https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1619874

This article creates a unique window to the powerful but complex research partnerships with communities. It clearly identifies the value of extended relationships that combine both robust scientific research within STEMM (science, technology, engineering, mathematics and medicine) community capacity building and co creation of equals. The inclusion of indigenous ethics and conventional bioethics is a novel approach that could inform countries that have developed separate indigenous ethics processes (Canada’s OCAP The First Nations Principles of OCAP® . The New Zealand experience demonstrates how seeking diversity, including epistemological diversity, depends on constant negotiation about ownership of data. This is necessary for democratizations 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 academic research partnerships that also strive to conduct action research that can empower all partners.

The following table, adapted from Strausser, 2018, focuses on an international review of participatory or engagement models in research that have been identified in the last decade. The International Association of Public participation (IAP2) that has been the leader in public participation since the early 1990s has also been included. The IAP2 spectrum has been modified for use in many sectors, including health research.

TTable 1 : Methods of engaging citizens in research, adapted from Strausser, 2018

Bonney’s work is the most basic 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. While it does not identify the level of engagement, it does suggest independent peer research which could indicate a partnership.

Shirk’s ladder suggests new territory reinforced by web based citizen science research in ecological monitoring and sustainability science. The first two rungs of the ladder are similar to 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. They appear to be embedded peer researchers as part of the overall research project similar to community based participatory research projects. This parallel research model is gaining popularity where large research teams support citizens to conduct their own research that may or may not be integrated into the final research agenda. The final step, citizens are seen as colleagues who independently conduct research as part of the research team. This is the PaCER model of engagement when the peer researchers are colleagues in the research team and are part of grant writing and conducting specific research.

Haklay, 2010, and Wooley 2013 introduce levels of participation within web based citizen science. This work is grounded in constructs of collective intelligence that emerges in crowdsourcing . Soroweiki argues that for collective intelligence to emerge 4 criteria are necessary: Independent contributors, Diversity of opinion, Decentralization, A way to aggregate the results. Collective intelligence is redefining issues of quality in web based research with the potential for very large and distributed data sets. 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 throughout the research cycle.

The Strausser team provides a practical set of functions that can be done by citizens, from sensing, computing, analyzing, self reporting and making (creating 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 (Researching health together, 2020) are represented in the highest levels of international citizen engagement.

This section consists of the following chapters: chapter 5 provides an overview of patient engagement through articles and reports; Chapter 6 introduces salutogenesis as a theory of patient expertise; Chapter 7 introduces the importance of narrative theory and research methods ( note this chapter may be move to section 3) and Chapter is a researchers guide to including engagement strategies as part of qualitative research.