For decades, research publishing followed a fixed script. Researchers investigated. Publishers validated, polished and shared their findings. Patients, if mentioned, were the subjects of the research, not contributors to it.

That model is shifting. Across the publishing industry, there’s growing recognition that people with lived experience of illness, disability or care are more than passive recipients of information. They’re experts in their own right — and they’re helping to make research more relevant, ethical and trustworthy.

This isn’t about tokenistic patient stories or soft human interest. It’s about integrating meaningful public perspectives into publishing systems and processes, and asking how we might build platforms that are not just academically rigorous but genuinely useful to those most affected by them.

Emma Doble, patient and public strategy editor at BMJ Group, contributed a feature article, Putting patients on the page, to InPublishing in the July/August 2025 issue.

The logic is simple. Research that affects people’s lives should reflect their realities. Patients, carers and members of the public bring unique insights that researchers, no matter how expert, may not anticipate. They may ask different questions, highlight overlooked issues, and challenge assumptions that seem obvious within clinical or academic circles.

At BMJ Group, we’ve worked with patients for over two decades and see this repeatedly. For example, The BMJ journal’s patient reviewers have improved papers by flagging that clinical definitions of ‘quality of life’ don’t always align with what matters most to people living with a condition. As far back as 2001, one reviewer challenged the framing of a paper on diabetes that focused on blood sugar control but overlooked fatigue and mental health, two issues patients consistently rank as more impactful. That input led to a more balanced, and ultimately more useful, revision.

Patient insights also strengthen ethical rigour. They help identify unintended harms — such as language that stigmatises or alienates — and can prevent publication of research that may lack true relevance to those it intends to help.

Of course, it’s easy to gesture towards “patient involvement” without changing much. Real integration requires intention, infrastructure and culture change.

At The BMJ, patient and public reviewers have been a formal part of the peer review process since 2014. Every research paper is reviewed not just by academic experts but also by someone with relevant lived experience. Patients also sit on the journal’s editorial board, and our international patient advisory panel helps shape our patient and public partnership strategy.

Patient and public involvement is now being adopted more widely across the business. For all our journals, we now require all submitting authors to indicate how they involved patients and the public in their research in a Patient and Public Involvement statement, holding researchers accountable for their claims of “co-production”. Several other journals across the BMJ Group portfolio now include patient and public reviewers, including BMJ Open, BMJ Global Health, BMJ Health & Care Informatics, and RMD Open (Rheumatic and Musculoskeletal Diseases).

But patient insight goes beyond research publishing. On BMJ Best Practice, our clinical decision-support tool, content is updated to more explicitly support shared decision-making. This includes clear summaries of the benefits and harms of interventions and flags when patient preferences should guide decisions. The goal is to empower not just clinicians but patients themselves and acknowledge that both types of expertise matter.

Public trust in science has become more fragile, especially after the pandemic, when people were bombarded with evolving advice and conflicting information. Publishing that brings patients into the process can help repair that trust.

Involving patients in research design and review, and clearly stating how they were involved,  signals openness, humility and respect. It shows readers that this is not research done on people, but research done with and for them.

Almost 90% of research papers first submitted to The BMJ in 2024 and sent out for peer review were also sent to a patient and public reviewer for their opinion.

You don’t need to be a medical publisher to apply these ideas. Any publisher that creates content with real-world consequences, from education to policy to social care, can benefit from integrating lived experience. Here’s how to start:

1. Bring patients into peer review: The BMJ provides training and support for patient and public reviewers, and publishes guidance on how to offer meaningful feedback. Their input focuses on clarity, relevance and usefulness. This model is scalable and replicable across sectors.
2. Embed lived experience into editorial boards and advisory panels: Patients on the group’s editorial board are not figureheads. They have a genuine say in strategic direction, topic selection and policy decisions. Publishers in other sectors, for example, social justice or education, could benefit from a similar approach.
3. Use clear, inclusive language: Patient reviewers often challenge jargon or unnecessarily technical phrasing. One small but powerful example: shifting from “subjects” to “participants” or “people living with…” immediately changes the tone. BMJ Group encourages all authors to write with a non-specialist audience in mind — not to simplify science, but to broaden its reach.
4. Show your working: More than half of our journal portfolio, including The BMJ, publishes research involving patients. This research includes a public involvement statement explaining how and when patients were involved. This increases transparency and gives readers confidence in the process.
5. Support cultural change internally: For many editors and publishers, working with patient partners is new. We provide training to support staff in collaborating respectfully, listening actively, and welcoming challenges. Mistakes are shared openly so others can learn.
6. Build feedback loops: Patient contributors are regularly asked how the process can improve. One recent outcome: simplifying reviewer instructions and offering a guide to peer review, and optional peer buddies for new reviewers unfamiliar with academic publishing.

What we’re seeing is not just a tweak to publishing workflows. It’s a value shift from control to collaboration, authority to authenticity.

When publishing includes patients, it becomes more than a vehicle for transmitting research. It becomes a mechanism for shaping it, challenging it, and ensuring it lands where it matters. It helps bridge the gap between evidence and empathy, and creates space for more equitable and inclusive conversations.

For publishers, this is both a responsibility and an opportunity.

• Responsibility: Failing to involve people in decisions that affect them risks irrelevance or harm.
• Opportunity: When we open the door to lived experience, we make our content, and our impact, far stronger.

This transition is ongoing. We’re learning, adapting, and listening, and while progress has been slow, the direction is clear. Publishers who choose this path will not just improve their content but also build stronger, more meaningful connections with the communities they serve.

In 2023, BMJ Group supported For Patients, By Patients (PxP), the first fully patient-led global research conference. Designed and run by The BMJ patient advisors, PxP proved the power of lived experience to shape research agendas.

A BMJ Open study authored by Dawn Richards and colleagues, ‘Patient engagement in a Canadian health research funding institute: implementation and impact’, confirms patient-led initiatives like PxP integrate patient insight effectively into both research and policy.

PxP set a new precedent: patients aren’t just participants, they’re experts.

In 2024, BMJ Group funded 64 patients and residents from Newham, East London, to attend the London International Forum on Quality and Safety to bridge the gap between local communities and global health systems.

Their presence ensured that local voices shaped key conversations on healthcare improvement. This inclusive action deepened community trust, expanded relevance, and empowered marginalised groups to co-create better care.

To tackle misinformation and improve care, Ireland’s Health Service Executive (HSE) gives patients direct access to trustworthy health information. With support from BMJ Best Practice, healthcare library teams are equipping citizens with clear, evidence-based patient leaflets used in consultations nationwide.

This national initiative is changing the dynamic between patients and clinicians. It enables more informed conversations, supports shared decisions, and reduces avoidable tests and treatments. Encouraged by the success of BMJ Best Practice, the HSE is considering expanding its library services to enhance patient education and advocacy further.

In June 2025, a special set of articles was published in a dedicated The BMJ Lived Experience collection. It showcases the value, competency, and capability of people with lived experiences in improving healthcare and health, and calls on health leaders at all levels to make participatory healthcare “business as usual”.

Examples to celebrate include the UK’s Medicines and Healthcare products Regulatory Agency’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.

To this end, the World Health Organization 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 empowering and funding people, communities, and civil society to participate in decision-making processes at all levels of the health system. Governments must also show progress every two years.