The Rise of the "Expert by Experience": A Decade of Global PPI Evolution

by the International PPI Network.

Ten years ago, Patient and Public Involvement (PPI) in health research was often viewed as a "nice-to-have"—a moral checkbox or a peripheral activity for particularly enthusiastic researchers. As we celebrate the International PPI Network’s 500th member, we look back on a decade where the landscape has shifted fundamentally. It has matured into a global standard of excellence, redefining the relationship between those who conduct research and those who live with the conditions and services being studied.

A decade ago, involving a patient might have meant asking them to review a plain-English summary of a study that had already been designed. Today, the standard is for "experts by experience" to sit on steering committees, help draft funding applications, and even act as co-investigators.

Organisations like the National Institute for Health and Care Research (NIHR) in the UK and the Patient-Centered Outcomes Research Institute (PCORI) in the United States have pioneered the "no research about us, without us" mandate, making meaningful involvement a prerequisite for funding. This regulatory pressure forced a culture shift: researchers began to see that patients don’t just offer "feel-good" stories; they offer insights into the relevance of a research question, feasibility, recruitment, research instruments and outcome measures that researchers often miss. We have seen the emergence of the ‘Lived Experience Researcher’, where their experience of a condition or service informs the research.

PPI has expanded across Europe, Australasia, and increasingly into Global Health initiatives. The terminology is often different—in low- and middle-income countries, it is frequently referred to as Community Engagement and Involvement (CEI)—but the principle remains: local communities must have a voice in the research that affects them.

Many countries now have – or, like Singapore, are in the process of developing - principles, values and ‘how to’ guides for PPI.

Future Challenges: The Road Ahead

Despite this progress, there are undoubtedly a range of challenges we face to ensure that PPI not only remains on the agenda but evolves and maintains its relevance. We asked colleagues from the IPPIN Working Group what they thought were some of the key challenges looking forward:

• Impact: We need to articulate and measure the impact of PPI on health research, so we can convince everyone in the research and healthcare eco-system, particularly in countries that are less familiar with PPI, of the importance of PPI as a norm in advancing medical science and developing healthcare solutions.

• Developing PPI infrastructure: We need to develop PPI resources, processes and infrastructure to suit the culture and system of healthcare and research in each country. This includes PPI guidance, training and payment processes.

• Inclusivity: We want everyone to benefit from research.  Historically it is affluent, often older people, from ethnic majority groups who have been involved in research.  If research is to be relevant to and meet the needs of all then we need to find ways of including other groups.  We need to reach out to those communities, including meeting with people within their communities, and develop ways to enable people to express their views. 

But we, in the PPI community, do not need to do this alone! At the International PPI Network we want to connect like-minded people who also believe in the importance of patient and public involvement so as to advance the adoption of PPI in research worldwide. We will continue to work together with partners across borders to learn, collaborate and grow PPI together.

What, for you, are the key issues for PPI?

Conclusion

The last ten years have proven that patient involvement is a catalyst for higher-quality, more ethical research. Reaching 500 members in this network is a testament to the global appetite for this change. We have built the frameworks; now we must ensure they are accessible to everyone. The challenge for 2030 and beyond is to move PPI from being a "special project" to being the "business as usual" of science—ensuring that every discovery is grounded in the reality of the people it is meant to serve.