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Radical change is needed for disparate and ad hoc initiatives to become “business as usual” at every level of healthcare, policy, and research decision making, and for patients, care givers, and relatives to be valued equally to other experts. To this end, the World Health Organization (WHO) created a practical guide to including lived experience in healthcare: the 2023 framework for meaningful engagement of people living with non-communicable diseases (NCDs), mental health and neurological conditions.9 This is one of four WHO reports co-created with people with lived experience setting the expectation that nothing about people with a health condition should be decided without their involvement.10 11 12 13 Last year’s World Health Assembly (WHA) passed a resolution that commits governments to empower and fund people, communities, and civil society to participate in decision making processes at all levels of the health system,14 and governments must show progress every two years.15 To make participatory approaches business as usual brings challenges.16 The key is dismantling the cultural barriers that deny lived experience the same respect as technical knowledge.17 18 Participatory approaches require power to be rebalanced. It is essential to re-imagine—or at least be open to—a new definition of what it means to be an expert and what it means to hold authority. Pioneering institutions, leaders, and individuals are learning as they go, with lessons to apply globally.17 19

ledge.17 18 Participatory approaches require power to be rebalanced. It is essential to re-imagine—or at least be open to—a new definition of what it means to be an expert and what it means to hold authority. Pioneering institutions, leaders, and individuals are learning as they go, with lessons to apply globally.17 19 Journals should do more to set expectations and standards to advance the movement, developing formal strategies for working with patients and the public. The BMJ launched its patient and public partnership strategy in 2014.20 Co-creation has become a buzzword. But paying lip service to the value of lived experience while existing knowledge structures remain is not enough. Involving people with lived experience is just the first step on this culture change. It can be tempting to bring in one or two lived experience experts and think the work is done.21 But this risks reinforcing existing power structures through tokenism and tailoring healthcare to a few individuals. A truly participatory approach to decision making needs the inclusion of everyone, especially hardly reached populations who have historically been excluded, as the WHA resolution recognises. This is critical to identify biases and gaps in healthcare at the population level that undermine progress towards improving outcomes

ly participatory approach to decision making needs the inclusion of everyone, especially hardly reached populations who have historically been excluded, as the WHA resolution recognises. This is critical to identify biases and gaps in healthcare at the population level that undermine progress towards improving outcomes The growing number of examples of patient inclusion, the WHO framework for meaningful engagement, and the resolution on social participation show that national and global stakeholders are serious about making co-creation of healthcare not just a talking point but a reality. The new BMJ collection showcases the value, competency, and capability of people with lived experiences in improving healthcare and health. Health leaders at all levels have the elements to make participatory healthcare business as usual.