Case Study

The BMJ – WHO collection on lived experience
as expertise in health policy development 

SUMMARY

The World Health Organization’s 2023 framework strongly advocates for the meaningful involvement of people living with non-communicable diseases (NCDs) and mental health and neurological conditions in the creation of health policies and programmes.

This explicit call to action emphasises that true equity in health policy development demands the inclusion of those with lived experience—not simply as contributors, but as leaders and decision-makers. By prioritising lived experience, publishers play a pivotal role in amplifying underrepresented voices, fostering inclusivity and challenging entrenched hierarchies in health research and policy.

The July 2025 BMJ–WHO ‘Lived Experience as Expertise’ collection is a landmark initiative, offering a platform for people with lived experience to author articles that highlight both the opportunities and obstacles of embedding equity and inclusion within health policy. This approach moves the sector closer to co-created, effective and equitable healthcare solutions, but also demonstrates that such inclusion is not yet universally realised. 

 

WHAT ACTIONS WERE TAKEN?

  • In a deliberate move towards equity and inclusion, the BMJ-WHO commissioned individuals with lived experience, spanning diverse geographies and health conditions, to serve as the principal authors of the collection. The articles provided vivid examples of how implementation challenges can be overcome for example the value of asking people with type 2 diabetes their language and care preferences to optimise outcomes globally. The collection is now part of the canon of lived experience as expertise and acts as a resource to showcase how meaningful engagement can improve healthcare policy, practice and experience.  

Case study contributor & organisation

Sophia Walker
Patient editor, BMJ-WHO.  

Drawing on her experience living with type 1 diabetes since age six, Sophia advocates for an increased patient perspective in treatment development, healthcare delivery and outcomes research. Sophia has a background in clinical trial management, pharmaceutical market access and commercialisation and communication strategies. She was previously the Accelerated Access Lead at Breakthrough T1D UK (formerly JDRF), the type 1 diabetes medical research charity. She holds an MSc in Health, Community and Development from the London School of Economics.  

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Key Takeaways

Many resist bringing those with lived experience into health and healthcare policy making as the process is seen as messy, complicated and time consuming. One of the key goals of the collection is to show what is possible when those with lived experience are given a platform.

Serving as a reference for decision–makers, the collection provides practical guidance on embedding lived experience as a form of expert input. Publishers, by including lived experience expertise in peer review or on editorial boards, can play a critical role in setting standards for equity and inclusion across the sector. 

Independent evidence shows Research4Life drives significant increases in research output and greater gender inclusion in LMIC publishing, indicating that reducing access barriers facilitates participation and representation. Persistent awareness and infrastructure challenges point to ongoing needs for investment in systems and community engagement to realise equity goals fully by 2030 and beyond.