Lived experience: from intention to global action

Abstract

Time to see lived experience as expertise, and make inclusive engagement business as usual

It is indisputable that people should have a say in the healthcare decisions that affect them. “Lived experience”—knowledge gained by being a patient, care giver, or relative — is increasingly recognised by clinicians, policy makers, researchers, and the public as essential expertise to ensure that healthcare is relevant, responsive, effective, resilient, equitable, and fully inclusive.^{1 2} The BMJ Collection on Lived Experience as Expertise highlights some of the ways that lived experience has helped improve care (www.bmj.com/collections/lived-experience).

There is much to celebrate, particularly a growing expectation that clinical research should be conducted with patients and not on them. Funders, including the US Patient Centred Outcomes Research Institute, the UK National Institute for Health and Care Research, Medical Research Future Fund in Australia, and the Canadian Institutes for Health Research, are encouraging or requiring “patient engagement” or “consumer involvement.” The BMJ requires authors to document in research submissions if and how they involved patients and the public.³

In policy development, progress has been more piecemeal. In the US, incorporating lived experience in drug regulation is a legal obligation under the 2012 Food and Drug Administration Safety and Innovation Act, a legacy of HIV/AIDS activism.⁴ The UK’s Medicines and Healthcare Products Regulatory Agency’s strategy involves patients “in every step of the regulatory journey.”⁵ Brazil’s new Law 15.120/2025 mandates the inclusion of people with lived experience in decision making about drugs for the public health system.⁶

High income countries are over-represented among published examples of inclusion of lived experience as expertise. Exemplars from lower income countries need more attention,⁷ such as the Movement for Global Mental Health, a network of organisations working with communities to close treatment gaps.⁸

Making patient involvement routine

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}

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

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.