Move beyond tokenism to embed patient insights in medical curricula

Patients frequently share their experiences as part of the teaching of future healthcare professionals. Yet when the curriculum that defines what those students will learn is drawn up, patients are seldom in the room.

This disconnect matters. Professional regulators such as the General Medical Council now expect patient involvement across all aspects of medical education. But at many institutions, involvement is limited to guest teaching sessions and does not extend to curriculum design. The result can be programmes that are pedagogically robust yet socially detached.

Curricula developed without patient input may unintentionally reinforce traditional hierarchies in healthcare, weaken public trust and leave graduates underprepared for the relational, ethical and cultural complexity of modern practice. If universities are serious about social accountability, patients must move from occasional contributors to genuine partners in curriculum development.

We learned this first-hand when co-producing an empathy-focused medical curriculum alongside patients and students. This involved facilitated co-production workshops, using small mixed-group discussions to jointly shape learning outcomes, teaching approaches and curriculum content. We changed several things in the curriculum after listening to patients’ feedback. For example, some patients described being treated as a “body” rather than as a person by their doctors. We found that medical students are often taught physiology facts (for example about the heart) as if these facts are independent of a human being. So we invited patients in to help teach facts about the body in the lecture theatre. In another example, our patient partners with long-term conditions, such as diabetes, told us that their doctors did not seem to understand how hard it was to manage these conditions. To develop future doctors’ understanding of these long-term conditions, we facilitated students visiting patients in their home environments.

Here, we share practical lessons for institutions seeking to embed patient voices meaningfully in curriculum design.

What is co-production?

Co-production means sharing power and responsibility throughout the curriculum development process. It does not replace academic judgement, nor does it dilute disciplinary expertise. Instead, it asks us to expand our definition of expertise to include experiential knowledge. Universities are traditionally structured around credentialed authority so redistributing influence can feel uncomfortable for some educators.

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• Spotlight guide: The practicalities of co-creation with students
• Support medical students to form their identity as doctors

In our experience, co-production works best when patients are not involved alone. Bringing students into the process alongside patients helped translate lived experience into learning outcomes, teaching strategies and assessment approaches that resonated with learners. The result was stronger student engagement, more authentic classroom dialogue and improved satisfaction with our empathy curriculum.

Achieving co-production of the curriculum in practice

Involve patients early

Many institutions start with consultation: inviting patients to comment on draft curricula, or to attend review meetings after key decisions are already made. While well intentioned, this limits influence and risks reducing involvement to endorsement rather than partnership.

Meaningful collaboration begins before learning outcomes, priorities and educational strategies are fixed. Invite patients into the process when fundamental questions are still open.

Achieving demographic diversity can be challenging, but meaningful involvement should not be postponed until perfect representation is achieved. Start where you can, while remaining attentive to whose voices remain absent. Existing patient groups within universities, local charities and community organisations can all provide valuable entry points.

Treat patients as partners, not guests

Co-production depends on whether patients are recognised as partners rather than occasional contributors. One clear signal of partnership is payment for time and expertise. Another is reciprocity: ensuring that everyone benefits from participation.

In our project, patients developed confidence and skills in curriculum design; students gained insight into educational development; and educators strengthened their teaching through exposure to new perspectives. When involvement is genuinely collaborative, it enhances professional development for all.

Address power dynamics explicitly 

Inviting patients into curriculum development does not automatically dismantle hierarchy. Educators typically retain ultimate authority over curriculum decisions, and patients are often acutely aware of entering unfamiliar academic spaces.

Rather than ignoring these dynamics, acknowledge them openly. Establish shared ground rules that position lived experience as a form of expertise in its own right. Focus on how conversations are structured and facilitated.

We found that small breakout groups combining patients, students and educators – supported by skilled facilitation – prevented any single perspective from dominating. Appointing an independent point of contact gave patients a safe route to raise concerns or seek clarification when navigating institutional processes.

Prepare participants – and close the loop

Many patients are experienced in contributing to teaching but unfamiliar with curriculum development. Clear preparation is therefore essential. Provide accessible briefing materials, avoid unnecessary jargon and explain which decisions are genuinely open for discussion. Offering one-to-one pre-meetings can build confidence and clarify expectations.

Preparation must be matched with follow-up. If patients never see how their contributions shaped the curriculum or influenced student learning, involvement can quickly feel tokenistic. Sharing summaries that explain which ideas were adopted – and why – demonstrates transparency. Involving patients in subsequent evaluation reinforces that their role extends beyond initial design.

A practical checklist for co-producing curricula

When patients are treated as partners, rather than consultees, curriculum development becomes more grounded, credible and better aligned with the needs of patients and the public. To start co-producing curricula with patients: 

1. Identify the right entry point – the earlier the better: choose a curriculum review, redesign or new module where learning outcomes are still flexible.
2. Be clear about expectations: work with existing patient groups and be clear about expectations, time commitment and payment.
3. Prepare patients: create accessible briefing documents, avoid jargon and offer one-to-one pre-meetings so patients can contribute with confidence.
4. Address power dynamics: use skilled facilitation, mixed groups and shared ground rules to ensure lived experience carries equal weight in discussions.
5. Close the feedback loop: show patients the impact of their contributions, and involve them in further refinements of the curriculum.

Embedding patients in curriculum design ensures that patient-centred care is not only taught to students but modelled in the way education itself is created.

Amber Bennett-Weston is a postdoctoral researcher and Jeremy Howick is director of the Stoneygate Centre for Empathic Healthcare, both at the University of Leicester.

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