Six ways to get a grip on co-creating curriculum with patients

Abstract

There is growing recognition of the value and importance of patient engagement in medical education. In this work, we reflect on both the literature on patient engagement and our experiences with a recent initiative focused on the co-creation of educational curricula with patient and healthcare professional partners and offer recommendations for educators and researchers interested in engaging in patient partnerships to develop medical education curriculum. We adopted a co-creation approach, in which patient and healthcare professional Subject Matter Experts (SMEs) were provided an opportunity to co-create curricular material. During the curricular development period, we experienced successes and challenges that allowed us to develop six recommendations to “get a grip” on adopting co-creation approaches to curriculum development in medical education. By applying these recommendations, medical educators can help foster meaningful and sustainable patient partnerships.

Introduction: the debate

Patient partners fulfill key medical education roles, such as acting as educational developers and mentors.^1-2 Involving patient partners in education yields numerous potential benefits for learners, medical educators, the patients themselves, and the broader healthcare community,^3-4 such as curriculum authenticity and awareness of patients’ lived experiences. Realizing these benefits requires that patient partners are meaningfully engaged in forming educational curricula.

While there is growing support for patient partnership within the medical education literature,^1-4 there are persistent challenges and pitfalls with this approach. Patient partnership can be reductive when patient engagement is limited to testimonials or case studies, is focused on patient preferences, or lacks important infrastructure.⁴ Without authentic co-creation, medical education may be missing important perspectives, which may limit healthcare learners’ development of important knowledge and skills. Meaningfully engaging patient partners in curricular development enables future healthcare professionals to benefit from patient knowledge and experiences.

To achieve this goal, there is a need to continue exploring how patient engagement can move beyond educational delivery towards curricular development and patient roles as curricular advisors towards authentic co-creators. Patient partnership requires careful consideration of ethical and practical factors, such as addressing power imbalances and epistemic injustices, tokenism, and resource constraints (e.g., time, financial resources).⁵ Equitable partnership processes that fully value the knowledge and expertise of patient partners need to be developed, accepted, and implemented by all partners.⁶

In 2021, the Association of Faculties of Medicine of Canada (AFMC) embarked on developing postgraduate medical education (PGME) and Continuing Professional Development (CPD) curricula on pain management and substance use disorder. These curricula were developed in collaboration with the Centre of Excellence on Partnerships with Patients and the Public (CEPPP) and featured Subject Matter Expert teams involving both healthcare professionals and patients.⁷ The term Subject Matter Experts (SME) was purposefully used for both patients and healthcare professionals as a sign of egalitarianism to recognize that their respective knowledge and experiences provide them with unique expertise on the topics of the curriculum and to value of the contribution of both patients and healthcare professionals.

Thirteen SME teams co-developed 16 (8 PGME; 8 CPD) asynchronous, online, bilingual modules using a co-creation approach aligned with partnership (i.e. shared-leadership) as defined within the Montreal Model.^8-9 The co-creation approach for this project focused on active partner engagement throughout the curriculum development process. Previous work on this project found that SMEs perceived their co-creation experiences to be valuable.⁷ Based on growing interest in patient engagement, it is expected that other medical educators might be interested in using a similar approach. During development, our reflections on the successes and challenges we experienced allowed us to formulate solutions to “get a grip on challenges.” Our six lessons learned are represented by three themes: (a) Select the right partners, (b) provide the right supports, and (c) create the right environment (Figure 1).

Figure 1.

Six lessons learned on co-creating curriculum with patient partners

Theme A. Select the right partners

Grip 1. Select Subject Matter Expert patient partners

Not every patient will be a good candidate to be a patient SME. Lived experience is required, but some patients may not be fully ready to engage in the co-creation process. Consider whether patients are ready for engagement in partnerships and at a point in their journey where they can reflect on their lived experience and work from a posture of benevolence. This is necessary to ensure participant safety, as retelling painful and difficult experiences can lead to further harm. Patient partner recruitment for the AFMC curriculum project followed the CEPPP patient partner recruitment methodology.^8-9 Informed by the Montreal Model, patient partners were recruited according to the Patient Partner competency framework and other considerations, such as geographical diversity and/or lived experience.^8-9 The recruitment process integrated patient identification, pre-screening short interviews followed by individual semi-structured long interviews, mandate attribution, and patient preparation and training.^8-10 To facilitate an inclusive selection process, the project team collaborated with a community-based advocacy group to recruit diverse patient SMEs.

Grip 2. Recruit Subject Matter Expert healthcare professional partners

It is important to select healthcare professionals who can co-create with patients. Clinicians need to be able to share power in co-creating materials such that both clinicians and patients are sharing their specific expertise. The ability to set boundaries and be empathetic to patient SME experience is essential. For this project, healthcare professionals SMEs were selected for their knowledge and experiences with the curricular topics.

Theme B. Provide the right supports

Grip 3. Provide partnership training

Explicitly setting standards and clarifying SME roles and responsibilities is beneficial. Healthcare professional SMEs need training to work effectively with patients as co-educators/creators. Sharing power requires different skills as each element of curriculum is subject to different expertise and experiences. Patient SMEs also need training on how to work effectively with healthcare professional SMEs, such as how healthcare professionals think about clinical conditions. Clear discussions about co-creation (i.e., how to create together rather than consulting/providing feedback) allow teams to understand their roles and help them to develop a common language to better understand and communicate with one another. For this project, SMEs were provided with an overview of patient partnership principles.^6,8 The co-creation approach was adopted to foster creativity and innovation in the curriculum content and structure. Rather than being provided with prescriptive template, SME teams were encouraged to co-create the module’s vision, pedagogical structure, and thematic content. SME teams were supported by instructional designers and education specialists to realize their module’s vision.

Grip 4. Follow partner-centred timelines

Patients may need different deadlines than healthcare professionals for whom this could be included as part of their full-time work, and for whom meetings may need to be scheduled around clinical responsibilities. Team members need to address timelines at the start of working together. A mutually agreed timeline that allows for both relationship and trust building among the partners and addresses the project deadlines should be set up by a neutral team member.

Theme C. Create the right environment

Grip 5. Provide equitable benefits

Careful consideration of how all SMEs benefit from the partnership is vital. Patient and healthcare professional time must be remunerated on an equitable footing. For this project, rates of compensation were informed by team members’ previous experiences and in consultation with those with patient partnership expertise. Patient SMEs were also renumerated for their time when it came to project-related tasks, such as providing video interviews or presenting at conferences. Although these tasks may be generally covered for healthcare professional SMEs, this may not be the case for patient SMEs. The co-development of Terms-of-Reference that define work and work products required is useful.

Grip 6. Adopt flexible approaches

Being adaptable is key. For instance, some partners worked best in a focused scheduled meeting to work through content and feedback, while others preferred to work through collaborative tools that allowed for iterative editing over a longer time frame. Our team tailored communication channels and feedback tools to align with the needs of all partners.

Conclusion

Co-creation of curriculum with healthcare professional and patient SMEs creates authentic curriculum that integrates patient perspectives into medical education. As we continue developing these processes, these six lessons learned provide a guide to doing this well for all.

Funding Statement

Funding: This project was funded by Health Canada’s Substance Use and Addictions Program. The views within the paper reflect those of the authors.

Conflicts of Interest

The authors have no conflicts of interest to declare

Authorship contribution statement

The authorship team included individuals with experience as patient partners and who served as the patient partnership leads on the project. The authorship team also includes leads on the curricula content and development, as well as overall project administration. The authorship team adopted a collaborative approach throughout the process.

Edited by

Heather Buckley (section editor); Jane Gair (senior section editor); Marcel D’Eon (editor-in-chief)