Global Call for Equal Valuation of Patients, Caregivers, and Relatives in Healthcare

Experts emphasize the importance of recognizing lived experiences—such as those of patients, caregivers, and family members—as vital forms of expertise in healthcare. A recent special collection of articles published by The BMJ advocates for a fundamental shift towards making participatory healthcare a standard practice worldwide. The collection highlights that the insights gained through personal experience significantly contribute to improving health systems globally. It urges health leaders at all levels to integrate these perspectives as a routine part of decision-making processes, transforming them from exceptional to commonplace.

This initiative builds upon a longstanding commitment by The BMJ through collaborations with patients and the public, striving for greater inclusivity in health research and policy. For instance, the UK Medicines and Healthcare products Regulatory Agency (MHRA) now involves patients at every regulatory stage, while Brazil has enacted legislation mandating patient involvement in drug decision-making within the public health system.

Progress in clinical research, where authors are now required to disclose patient involvement, shows positive change. Nonetheless, policy development remains inconsistent, especially in lower-income countries, where more attention is needed. Advocates call for sweeping reforms to establish a culture where the input of those with lived experience is equally valued alongside scientific and technical expertise.

The World Health Organization has issued a practical guide urging inclusion of lived experience in healthcare decisions, emphasizing that no aspect of a person’s health condition should be decided without their active participation. A recent World Health Assembly resolution underscores the need for governments to fund and empower communities and civil society to engage in health decision-making, with progress monitored biannually.

Achieving genuine inclusivity requires dismantling cultural barriers that undermine the authority of lived experience. A redefining of what it means to be an expert and hold influence is essential. Journals and institutions are encouraged to develop policies supporting collaboration with lay experts. Caution is advised against superficial engagement, as tokenism risks perpetuating existing inequalities. True participatory healthcare must involve all, particularly marginalized populations, to uncover biases and improve outcomes on a broad scale.