Evidence for everyone: reflections from The People's Review

In the current age of 'information overload' and 'Dr. Google', online sources are often the first place people go when making health decisions. A huge amount of information (some accurate, and some not) is available with the click of a few buttons. But the sheer quantity of information is overwhelming, with many health claims online being unreliable and not based on evidence. It is increasingly difficult for the public to find, understand and use evidence to support their decisions.

Systematic reviews are the cornerstone of the evidence ecosystem. They inform policy, guidelines, resource allocations, and patient decision-making. Yet, they are generally not well understood by the public, nor are the public usually involved in producing them. Written in technical language, hidden behind paywalls, and dense with jargon and statistical terms, systematic reviews are completely inaccessible to the very people they are meant to serve. Open access publishing helps. But it is not enough. Making research freely available is not the same as making it usable. We must support people to find, understand and use evidence. We need to build a system that supports people to ask questions and influence research priorities.

That’s where The People's Review comes in.
The People's Review aims to open up the black box of health research - support the public to understand what systematic reviews are, why they matter and how they can be used to support everyday health choices. We are doing this by involving the public in designing and conducting their very own systematic review.

Through our website www.thepeoplesreview.ie and Cochrane’s citizen science platform – Cochrane Crowd 547 people from 87 countries have come together to produce the world’s first people-powered systematic review. The public suggested and chose the question we would focus our review on – “Does resistance training make a difference to quality of life or heart health for older adults compared to aerobic exercise?”. The public helped plan how we would answer this question, making key decisions that shaped our review protocol. Our protocol was written and produced in plain English with over 200 authors. The public screened 5792 studies, extracted data from the included studies and assessed elements of the risk of bias in the included studies. In the final phase of The People's Review (coming soon!) we will complete the review together inviting the public to interpret the results, decide how to share them and co-author the final review publication.

The People's Review showcases what is possible when we use the digital tools to democratise and open up research. Digital and technological advances do not only make systematic reviews more efficient, but they can also make research more collaborative, accessible and inclusive. Online platforms, communities and tools mean we can reach people where they are, involve them in ways that fit their lives, and make evidence accessible to more people.

So where do we go from here? Should involving interest-holders (for example, patients, the public, carers, or clinicians) become a defining feature of what a “good” systematic review looks like? Should we revisit standards for the conduct (MECIR) and reporting (PRISMA) of reviews to include a mandatory section on ‘Interest-holder Involvement’ in the same way that competing interests and financial disclosures must be included? Are we there yet? I think so – it’s time for a cultural shift. Interest-holder involvement is a methodological asset, not an optional extra. I look forward to continuing this discussion at the EBHC Conference in October.