Personal Perspective: Elevating Patient Voice in Peer-Reviewed Journals

As a researcher and advocate for patient-centred research, I’ve often found myself pondering the question of who owns knowledge. It’s a question that may seem odd at first, but bear with me as I explore this issue further.

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Throughout my career, I’ve sat in countless meetings discussing patient-centred research, patient engagement, and co-production. I’ve watched researchers genuinely strive to involve patients more meaningfully than ever before, and that is something to celebrate. We have indeed come a long way in recognising the importance of patient involvement in research.

However, when I reflect on the papers I’ve worked on, I often wonder whether the author list truly reflects the meaningful contributions made by patients. The author list is often made up entirely of academics, with patients, if they’re lucky, appearing in a short acknowledgement at the end of the paper. This seems fundamentally inconsistent to me, and I suspect I will have been guilty of this myself during my publishing career.

The Value of Lived Experience

Lived experience is a form of expertise that can strengthen research. Patients often notice things that the literature hasn’t yet caught up with. They know which symptoms are most disabling, which outcomes matter when you return home from hospital, and which questions their clinician forgot to ask. This expertise is different from the traditional academic expertise, but it is expertise nonetheless.

As the chief executive of Encephalitis International, I’ve spent nearly three decades listening to thousands of patients and families rebuild their lives after brain inflammation. I’ve seen firsthand how patients can provide valuable insights that challenge our assumptions and improve the quality of our research.

Expertise comes in many forms, and we need to recognise that lived experience is a valuable contribution to the research process. By involving patients in the research from the beginning, we can identify the questions worth asking, challenge assumptions, and ensure that our research is more relevant and meaningful to those who will be impacted by it.

The Importance of Meaningful Intellectual Contribution

Authorship should reflect meaningful intellectual contribution, not tokenistic involvement. Patients deserve to be recognised for their contributions, not just because it feels like the right thing to do, but because they have earned it through their hard work and dedication.

We need to ask ourselves uncomfortable questions about our publication practices. Have we really recognised lived experience as expertise, or do we still see it as something that sits just outside the academic world? We need to be honest with ourselves and acknowledge that patients have a valuable contribution to make to the research process.

Recognition isn’t all or nothing. Patients who review participant information sheets, advise on recruitment strategies, or contribute to advisory groups have still made important contributions that deserve genuine acknowledgement. We should be honest in our recognition of their contributions, whether that’s through authorship or in the acknowledgements section.

We also need to recognise the barriers that prevent patients from being involved in the research process. Academic publishing can be intimidating, and the language, review process, and expectations are unfamiliar even for many healthcare professionals. Some patients live with fatigue, cognitive difficulties, or ongoing health problems that make sustained involvement challenging. Others may not wish to become academic authors. In some papers I have published, the patient contributor has requested anonymity for various reasons, including ongoing medico-legal cases. That choice should always be respected.

Lowering Barriers, Not Expectations

Rather than lowering expectations, perhaps we should think about lowering barriers. We mentor early-career researchers through the publication process. Perhaps we should offer similar support to patient partners who want to contribute at that level?

We need to create an environment that supports patient involvement in research, not just in terms of authorship, but also in terms of recognition and respect. By doing so, we can ensure that our research is more relevant, meaningful, and impactful to those who will be impacted by it.

Conclusion

If we genuinely believe in patient-centred research, then we should be prepared to ask whether our publication practices reflect those values. Patients should not become authors because we feel sorry for them, nor because a journal or funder expects it. They should become authors when they have earned authorship through meaningful intellectual contribution, the same standard we apply to everyone else.

Patient-centred research is not just about involving patients in the research process; it’s about respecting their expertise, their contributions, and their right to be recognised for their work. We need to create an environment that values and respects the contributions of patients, not just in terms of authorship, but in all aspects of the research process.