New BMJ collection calls for global action to ensure patients, caregivers, and relatives are valued equally to other experts
It's time to see lived experience – knowledge gained by being a patient, caregiver, or relative – as essential expertise, to ensure that healthcare is relevant, responsive, effective, resilient, equitable, and fully inclusive, say experts in a special collection of articles published by The BMJ today.
The collection showcases the value, competency, and capability of people with lived experiences in improving healthcare and health globally – and calls on health leaders at all levels to make participatory healthcare "business as usual."
The collection builds on a longstanding ambition of The BMJ to partner with patients and the public and its 2014 strategy.
"It is indisputable that people should have a say in the healthcare decisions that affect them," say Sophia Walker, patient editor at The BMJ, and colleagues, in an editorial to launch the collection.
Examples to celebrate include the UK MHRA's strategy to involve patients "in every step of the regulatory journey" and a new law in Brazil mandating the inclusion of people with lived experience in decision making about drugs for the public health system.
Progress has been notable in clinical research, and The BMJ requires authors to document in research submissions if and how they involved patients and the public. However, in policy development, the editorialists note that progress has been more piecemeal, and say examples from lower income countries need more attention.
They argue that 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, caregivers, and relatives to be valued equally to other experts.
To this end, the World Health Organization has created a practical guide to including lived experience in healthcare, setting the expectation that nothing about people with a health condition should be decided without their involvement.
Last year's World Health Assembly also 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, and governments must show progress every two years.
"These developments show that national and global stakeholders are serious about making co-creation of healthcare not just a talking point but a reality," say Walker and colleagues.
However, key to achieving this is dismantling the cultural barriers that deny lived experience the same respect as technical knowledge, they note. "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."
Journals should also do more to set expectations and standards to advance the movement, developing formal strategies for working with patients and the public, they add.
Finally, they warn that paying lip service to the value of lived experience while existing knowledge structures remain is not enough – and runs risks of 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," they conclude. "This is critical to identify biases and gaps – which undermine outcomes – in healthcare at the population level."
