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Abstract
Background Co-creation approaches, such as co-design and co-production, aspire to power-sharing and collaboration between service providers and service users, recognising the specific insights each group can provide to improve health and other public services. However, an intentional focus on equity-based approaches grounded in lived experience and epistemic justice is required considering entrenched structural inequities between service-users and service-providers in public and institutional spaces where co-creation happens.
Objectives This paper presents a Charter of tenets and principles to foster a new era of ‘Equity-based Co-Creation’ (EqCC).
Methods The Charter is based on themes heard during an International Forum held in August 2022 in Ontario, Canada, where 48 lived experience experts and researchers were purposively invited to deliberate challenges and opportunities in advancing equity in the co-creation field.
Results The Charter’s seven tenets—honouring worldviews, acknowledging ongoing and historical harms, operationalising inclusivity, establishing safer and brave spaces, valuing lived experiences, ‘being with’ and fostering trust, and cultivating an EqCC heartset/mindset—aim to promote intentional inclusion of participants with intersecting social positions and differing historic oppressions. This means honouring and foregrounding lived experiences of service users and communities experiencing ongoing structural oppression and socio-political alienation—Black, Indigenous and people of colour; disabled, Mad and Deaf communities, women, 2S/LGBTQIA+ communities, people perceived to be mentally ill and other minoritised groups—to address epistemic injustice in co-creation methodologies and practice, thereby providing opportunities to begin to dismantle intersecting systems of oppression and structural violence.
Conclusions Each Charter tenet speaks to a multilayered, multidimensional process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices. Readers are encouraged to share their reactions to the Charter, their experiences implementing it in their own work, and to participate in a growing international EqCC community of practice.
- Patient-Centered Care
- Patient Participation
- QUALITATIVE RESEARCH
- Quality in health care
- Health Equity
- HEALTH SERVICES ADMINISTRATION & MANAGEMENT
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- Patient-Centered Care
- Patient Participation
- QUALITATIVE RESEARCH
- Quality in health care
- Health Equity
- HEALTH SERVICES ADMINISTRATION & MANAGEMENT
STRENGTHS AND LIMITATIONS OF THIS STUDY
Collaborative approaches such as co-design, co-production and co-creation aspire to power-sharing and collaboration between service providers and service users, recognizing the specific insights each group can provide to improve health and other public services.
Too often these approaches lack an intentional focus on honouring and foregrounding lived experiences of communities experiencing ongoing structural oppression and socio-political alienation.
The concept of a Charter for Equity-Based Co-Creation (The Charter) to promote intentional inclusion of participants with intersecting social positions and differing historic oppressions emerged during deliberations at an International Forum of 48 purposively selected academic and lived experience experts.
The Charter encompasses principles grouped within seven tenets: honouring worldviews, acknowledging ongoing and historical harms, operationalizing inclusivity, establishing safer and brave spaces, valuing lived experiences, ‘being with’ and fostering trust, and cultivating an EqCC heartset/mindset.
The Charter is intended as a touchstone for researchers, Institutional Research Ethics Boards, research granting agencies, and academic, health and social care organizations that points to a multi-dimensional and multi-layered process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices.
Introduction
Recognition of the expertise and situated knowledge derived from lived and living experience, and the value of centering diverse service user experts as partners in the governance and provision of health, social and other public services has led to renewed interest in cooperative forms of design.1–8 Collaborative approaches such as co-design, co-production and co-creation have gained prominence among complex system change initiatives. Although the frameworks, terminology and specific approaches are different, they share common aspirations of power-sharing and collaboration between service providers and the people and communities they serve, and recognise the unique insights each group can provide when working equitably in co-creating transformed health, social care and other public service experiences.4–7 9–14
Despite the imperative for power-sharing between service-providers and service-users in the public sector, inequities remain embedded within the institutional and epistemic ecosystems where co-creation exists that challenge equitable co-creation, demanding greater reflection on the part of researchers.15–17 Recognition of the ongoing historical harms caused by culturally unsafe policies and colonial practices underscores an urgent need to ethically and equitably co-create more accessible, and safer spaces for diverse service-users, individuals and communities whose voices are often not heard.17 18
Recent literature suggests the term co-creation encompasses both co-design and co-production.19 For our purposes, we define ‘co-creation’ as any collaborative activity involving experience experts (ie, people who develop expertise arising from their experiences interacting with public services, often referred to as service users, patients, families, etc) and staff/professionals (eg, service providers) working together on an even playing field, that is inclusive of the lived experience from all perspectives. A common element in these approaches is an openness to integrating lived experience and ways of knowing that go beyond what is traditionally included in Western dominated health research as evidence. Co-creation values are consistent with the slogan of ‘nothing about us without us’ used in many disability rights and mental health communities internationally; the efforts to address sanism by the psychiatric survivor and Mad movements and Mad Studies; movements focused on decolonisation and dismantling dominant colonial lenses, and the OCAP Principles aimed at self-determination in Indigenous communities, with full ownership, control, access and possession of data.20–25
Critiques of co-creation approaches point to an unintended risk of reinforcing systemic inequities, for example, arising due to ageism, racism, sexism, ableism, sanism, classism, transphobia, homophobia, etc, if a range of potential barriers to participation at the decision-making level in co-creation result in experiences of tokenism and harm.26–28 From an intersectionality lens, there are interconnected layers of systemic oppression that can interfere with meaningful engagement and beneficial long-term material changes arising from co-creation practices.29
Although there are pockets of change in engaging people at the intersections of structural inequities, there continues to be notable gaps with respect to authentic anti-racist, anti-imperial and anti-colonial engagement. Specific challenges in recruitment, repeated engagement, managing power differentials, overcoming economic and social barriers, health concerns and securing sustainable funding were identified at a 2-day International Symposium of leading-edge researchers and experience experts to advance critical reflection on co-production practices organised by the authors in 2017 (CoPro2017).30 This event led to the creation of McMaster’s Co-Design Hub (the Hub) whose mission is to engage, educate, innovate and evaluate co-design from an equity-based perspective.
Deliberations to promote equity-based co-creation (the CoPro2022 Series)
This paper focuses on the process and outcomes of a series of 5-year follow-up events to CoPro2017 hosted by the Hub. The events were designed with a focus on ‘equity’ to promote intentional inclusion of participants with intersecting social positions, including people and communities experiencing structural oppression considered members of equity-deserving groups (EDGs)—Black, Indigenous and people of colour; disability, Mad, 2S/LGBTQIA+ and Deaf communities; and other minoritised groups. Intentional inclusion meant honouring and foregrounding the diverse lived experiences of people and communities directly impacted by structural marginalisatisix non in co-creation, thereby providing opportunities for epistemic justice to begin to dismantle intersecting systems of oppression.12 16 30 31 Hub members coined the phrase ‘Equity-Based Co-Creation’ (EqCC) as a new goal for co-creation theory and practice. At its core, EqCC involves working intentionally with members of EDGs to recognise and overcome structural barriers to their participation and impact through co-creation activities, and to promote dialogue about intersecting systems of oppression within health and other public services.
The events, entitled CoPro2022, included four webinars, two in-person educational workshops and a 3-day in-person International Forum (the Forum), held between May and October 2022 to foster dialogue to usher in a new era of Equity-Based Co-Creation (EqCC). Guiding principles were to model authentic, inclusive and accessible engagement; provide highly interactive, co-produced events; integrate representation, presentation and facilitation by people with diverse lived experiences throughout; draw on participants’ collective experiences in designing the structure and content; and reduce financial and other barriers to attendance.
The Forum was an immersive event held at the Gathering Place by the Grand at Six Nations, the largest First Nation reserve in Canada, located along the banks of the Grand River in Ohsweken, Ontario. A total of 48 purposely invited participants with intersecting positionalities (21 academic experts, 6 experience experts, 10 trainees and 11 members of EDGs) from 9 countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden) shared their co-creation experiences, discussed focused case studies, participated in arts-based (visual art, dance, poetry, traditional Indigenous beading, digital storytelling) and Indigenous educational workshops (bridging Indigenous and Western worldviews) and co-designed visions of EqCC in theory and practice.32–35 Disciplines of academic participants included business, social work, inclusive design, rehabilitation sciences, global health, critical disability studies, community psychology, Indigenous studies, sociology, health policy and nursing. On the final day, an inventory of approximately 35 key themes captured through illustrations, panellist presentations, group discussions, a wall mural, poetry and dance were presented for discussion (see online supplemental file). Forum participants called for a ‘Charter’ reflecting these themes to guide future co-creation activities. An iterative process was used to refine the language and group the themes within seven overarching tenets, followed by a validity check of the final Charter with Forum participants through a webinar held in May 2023 and also with several key informants including experience experts and policy decision-makers. This article shares the EqCC Charter (the Charter) that arose from the Forum with the public, medical and research communities.
Supplemental material
A Charter for equity-based co-creation
The Charter articulates key tenets and principles that are identified as foundational to EqCC, yet are often unacknowledged or overlooked in current practice. We present the Charter to foster discussion and critical reflection by practitioners on their own co-creation efforts, so as to advance the field towards equity-based co-creation. As outlined in figure 1, each of the seven tenets is distinct yet has interdependent subthemes as necessary preconditions and guiding principles for EqCC.
The Charter articulates key tenets and principles that are identified as foundational to Equity-Based Co-Creation (EqCC), yet are often unacknowledged or overlooked in current practice. Each Charter tenet speaks to a multilayered, multidimensional process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices.
Honouring worldviews captures the fundamental importance of entering this work with a stance of cultural humility and openness, recognising the salient value that each worldview can bring to EqCC activities. This involves taking the time needed in the ongoing and many layered process of learning new truths, unlearning myths and misconceptions, examining beliefs and commitment to treating others with respect, despite worldviews that are different to or conflicting with one’s own. At the Forum, for example, we had the privilege of welcoming participants from around the world and learning from our Indigenous hosts about the importance of ceremony to begin and end the day, to honour the land on which we were meeting, the waters flowing nearby, the food that we ate and the Elders who welcomed us into their space. Being open to these new ways of practising required intentionality and respect for difference, which enriched the overall experience for all involved.
Acknowledging ongoing and historical harms extends beyond cultural humility and absorbing social justice terminologies; it is about creating a care-full space for openly discussing challenging topics and legacies of colonialism, racism, ableism, sanism and other forms of interlocking injustices. It involves being sensitised to and acknowledging pain and generational trauma, and leaning into potentially uncomfortable emotions like anger, grief and suffering. It requires asking difficult yet critical questions, unlearning implicit and explicit biases, practising accountability and consciously working towards a more viable pathway for restoration, reconciliation and transformative justice. This process takes time and skilled facilitation, given longstanding and implicit patterns of harm, discrimination and mistrust embedded in our shared social systems and structures.
Operationalising inclusivity prioritises participation of EDGs by actively overcoming structural and other barriers and taking active steps to welcome all voices. Inclusivity is at the heart of EqCC and involves proactive approaches to promoting varying avenues of accessibility. This may include addressing physical (accessible and/or online meeting spaces), financial (funding to cover transportation and/or childcare), language (closed captioning, translation and/or sign language services) and/or psychosocial barriers (establishing engagement guidelines, and creating quiet rooms). It may also involve creating dynamic choices in when and how to participate, including synchronous and asynchronous options as well as exploring arts-based communication tools. Shared governance in the co-creation process, from start to finish, can provide insights into the potential needs/wants of the community. Planning an appropriate budget to be able to respond effectively and appropriately to different support needs present in the space is essential.
Establishing safer and brave processes means attending to the power imbalances that exist within and between groups, recognising the vulnerability people experience when engaging in honest, open, respectful dialogue and discussion, and creating safety to the extent possible. Sharing stories can curate a sense of vulnerability in both story tellers and listeners as well, at times encouraging painful but essential self-reflection and critical self-awareness. It is essential to have a properly designated and secluded physical ‘quiet room’ to retreat to, a dedicated support person, and to encourage autonomy and self-care, by normalising participant decisions to leave the discussion to regroup and to re-enter when they feel ready. It is also important to make decisions about whose safety is being prioritised, recognising that sometimes promoting safety for people with marginalised identities means that people who are used to holding power may feel uncomfortable, threatened or vulnerable. Safety must also be balanced with opportunities for individuals to take risks, ask uncomfortable questions and disrupt the status quo. Achieving this balance is not easy and requires inviting continuous critique/feedback, acknowledging potential tensions, admitting mistakes and actively correcting course as needed.
Valuing lived experiences speaks to listening with empathy and respect to people who have experienced injustices and inequities and honouring embodied knowledges and lived experience-sharing as fundamental to developing new insights and approaches. It involves seeking out the voices of those who are often not prioritised and heard, meeting people where they are; going to their communities (with their permission), rather than expecting them to come to you. It is important to ensure that experience experts participate together so they do not feel alone and are offered appropriate financial remuneration, training and advocacy opportunities. Participants should be free to choose whether and how much to share of their experiences, and to feel safe, supported and comfortable regardless of their decision. It is important to consider opportunities for mutual capacity building in experience-sharing and roles that match individual levels of comfort, risk-taking and desired impact.
‘Being with’ and fostering trust places attention on taking time to come to understand, and respect one another through shared reflective, cultural and educational experiences. When working with different communities, it is important to practice community care, recognising capacities for self-governance, fostering and nurturing new ecosystems, and being consistent and committed over time. Working together on a continuous basis as opposed to ‘one-off’ projects can enable trusting partnerships to flourish. Frequent check-ins and a commitment to flexibility with respect to any issues arising can support ongoing commitment to improvements through EqCC.
Cultivating an EqCC Heartset-Mindset requires inner reflection as a basis for personal transformation, while preparing participants for the uncertainty and discomfort involved in EqCC work. Although listed last, it underscores every other tenet. To be effective in EqCC, practitioners commit to developing and expanding key skills and attributes; critically reflecting on their worldviews, assumptions, biases and values; considering their roles in ensuring all voices are heard, respected and valued; and interrogating power and privilege. This requires the capacity to listen to others, particularly perspectives of voices that are heard less often. When EqCC practitioners remain curious, open to (un)learning and being transformed, new creative solutions can emerge. The work is difficult: it requires an accumulating tolerance for feeling vulnerable, as one’s own perspectives can be challenged, while remaining aspirational and having a shared excitement about potential transformation to be achieved. It is, therefore, important to allow time and space in EqCC processes for re-energising and recuperation, to enable participants to be fully present while navigating the challenges and opportunities of this way of working.
A call to action
Each Charter tenet speaks to a multilayered, multidimensional process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices. The tenets speak to dynamic, evolving and symbiotic processes that take time to enact and are often iterative in nature, given the complexity of the elements within each. For example, establishing safer and brave practices requires acknowledging the tensions, and diverse perspectives related to even defining what might be ‘safe’ and ‘brave’.36 37 These are not static ideas; working from a humility perspective of continuous learning, listening and dialogue are critical in co-creating shared strategies to work together.
Shifting paradigms does not happen overnight. It is a process where stakeholders engage with each other differently, move out of their comfort zones and consider how to enact the principles within institutional structures that may not necessarily support this transformational work.38 It is a progressive process that demands personal growth and attending to a range of human emotions as we share from our own experiences and social locations and seek to understand those of others.39 Activities that allow relationship-building help people to navigate the oscillating nature of the unknown together. For many in professional roles, the Forum was the first time they attended a formal space that allowed them to be vulnerable and shed tears without judgement, to undertake activities that built their ‘creative confidence’, and to wholly feel accepted and celebrated for their unique talents, cultures and perspectives, while discovering a like-minded commitment to pursuing equity-based co-creation.
The paradigm represented in the Charter tenets is also highly relational, recognising the importance of different sources of expertise, and the synergy that is possible when they come together to transform or disrupt long-held beliefs and value systems.8 40 41 For example, heart-set/mind-set is essential; it requires moving beyond our rational minds that typically embrace negotiation as a give and take, reciprocal process, toward fostering a higher level of shared consciousness and common humanity that can lead to truly innovative, radical and transformative ideas.42 43
Each tenet is important, and many are universal, but some may become more important than others depending on the unique context of the work that is occurring and the participants in the co-creation process. For example, acknowledging ongoing historical and trauma-informed harms may be especially important when working with communities who have experienced generations of oppression and marginalisation.
This work can be incredibly difficult to do within many institutions existing in the wake of legacies of colonisation, imperialism, racism, etc.1 44 In an organisation that values scientific expertise, for example, making space and time for alternate worldviews may be a significant source of tension.39 This raises other important questions for further research, dialogue and exploration: ‘How do we embrace vulnerability within systems that value professional expertise, hierarchy, and power? How do we tolerate uncertainty and discomfort in a space that values certainty and some forms of knowledge over others? How do we take the time and space necessary to build relationships and mutual understanding by ‘being with’ and ‘holding space’ in a culture that values efficiency, measurement of targeted outcomes, and meeting ‘deadlines’?’
Finding a way forward may include a number of possibilities for researchers, practitioners and institutions. For individual researchers and practitioners, the Charter can serve as a touchstone throughout their work and is intended as source of continuous personal reflection, while supporting both developmental and summative evaluation of their work. For institutions such as universities and research organisations, it will be important to embed Charter principles and tenets into institutional structures such as Research Ethics Boards during review of any research proposals conducted in partnership with EDGs and lived experience networks. It will also be important for academic administrative structures to recognise the time-consuming, multidimensional aspects of equity-based work such as building relationships and trust with communities when allocating workloads and setting expectations for tenure and promotion. For granting agencies, it will be important to require review panels to ensure Charter tenets pertaining to providing financial remuneration, training and advocacy opportunities to experience expert participants in research are addressed in their adjudication processes, and that adequate budgets are allotted for closed captioning, simultaneous translation and other considerations to operationalise inclusivity.
In addition to these operational considerations, capacity building among diverse stakeholders is required to advance a culture shift in both thinking and relating within academic institutions and health and social service delivery organisations that can ultimately lead to shifts in power and ways of working together. As an example, the office of the Provost at McMaster University has strongly endorsed this work through transitional funding to support the creation of a proposed institutionally endorsed EqCC Research Centre (the McMaster EqCC or ‘MEC’ Centre) to advance efforts to move EqCC into practice. This funding is providing opportunities to trainees at all levels (undergraduate, Masters, PhD and postdoctoral) from EDGs to create a pipeline of talent to continue to advance this work within the institution itself. At the Master’s level, we are offering seed funding and mentorship for trainees to advance EqCC projects in collaboration with community partners, using new pedagogies through integrated learning experiences. Further, we are developing learning modules and a suite of EqCC micro-credentials (Ambassador, Coach, Experience Expert, Trainer) for the broader community that are tailored to positionality, and the participant’s intended role in advancing EqCC work within respective organisations and networks. Ambassadors will develop a toolkit to advance understanding of the Charter tenets and principles; Coaches will be trained to lead EqCC initiatives; Experience Experts will build their capacity to engage in EqCC initiatives, and Trainers will be prepared to instruct others within their specific organisational/network contexts, all aimed at shifting cultures and ways of working towards inclusive co-creation approaches. Through research grants, we are also seeking to work in partnership with leaders of existing lived experience networks (initially in the areas of childhood disability and mental health) to advance greater representation of EDGs. Our partners point to advancing diversity in their networks as a top priority to create vibrant, self-sustaining and diverse communities of experience experts that can serve as a source of expertise from EDGs, preparing the groundwork for future EqCC efforts within health and social service organisations and public policy-making. At the same time, within these growing communities of experience experts there will be opportunities for mentoring about advocacy to challenge epistemic injustices and create more just societies. Further, we strongly encourage organisations and institutions to critically examine and create welcoming space for representation of EDGs in senior management positions and decision-making processes. Full inclusion and effective participation in various social, political and economic institutions requires that everyone has the opportunity to progress within society. The advancement of EDGs beyond consultative roles to these positions is critical to the realisation of the Charter.
Despite the inherent risks, our own experience suggests that tackling these challenges collaboratively can create transformative change within and among participants, and a passion for continued efforts to create improved processes to achieve shared goals. Practitioners are encouraged to share their reactions to, experiences with and creative approaches to overcome challenges in implementing the Charter tenets in their own work and to join a growing international EqCC community of practice (https://codesign.mcmaster.ca).
Ethics approval
This study involves human participants but McMaster Research Ethics Board was consulted. See below for excerpt from the communication: I discussed the co-design workshop/meeting and the planned papers with Dr La Rose, MREB Chair, and if the plan for the papers stays within the realm of knowledge sharing/mobilisation, ie, reporting on what happened in the workshop, then REB review would not be required. We think it is clear that the workshop itself was not a planned research activity. Assuming the knowledge sharing/reporting situation, you are encouraged in the presenting/framing of the papers to be clear that the purpose is in broadly sharing the outcomes of the workshop, rather than a research analysis of the content produced by the workshop. Additionally, although not a research activity, there may still be potential risks to individuals or communities/populations, which could be considered and mitigated as necessary. exempted this study. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We sincerely thank all of the CoPro2022 International Forum participants whose insights contributed to the creation of this Charter. Special thanks to the Six Nations of the Grand River Haudenosaunee people who so graciously hosted, inspired and engaged with Forum participants.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors The first author (GM) conceived the notion of a Charter, presented a draft version to International Forum participants for their feedback and continued to liaise with them during Charter revisions. GM, LM-L, BF and AV were extensively involved in planning the International Forum event to ensure its representativeness of diverse perspectives. GM, SM, MP, LM, AB, SKM, LM-L and AV participated in data gathering as table facilitators and contributed their own perspectives as data at the event. GM drafted the original version of the paper, and incorporated input from the team (SM, MP, BF, AB, LM-L, SKM, LM, AV and CF). All authors were all involved in the conceptualisation of the paper, in providing feedback on draft versions, and reviewing and approving the final version for submission. All authors are accountable for the accuracy of the work.
Funding This paper draws on research supported by the Social Sciences and Humanities Research Council grant number [611-2021-0231]. The McMaster Co-Design Hub is funded through a Strategic Alignment Fund grant and Strategic Excellence in Retention and Recruitment Funding from McMaster University.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.