Digital Barriers Are Excluding PPIE Contributors… Is This an Ethics Issue?

We talk about PPIE as an essential part of ethical research. We ask patients, families and members of the public to share their experiences and help shape research. But what happens when the systems designed to involve them make it difficult to participate?

For university staff, joining a Microsoft Teams meeting may be routine. For PPIE contributors, it can mean guest access problems, institutional login requirements, authentication issues, firewalls or links that simply do not work on specific devices, and much more barriers.

Sometimes, by the time the problem is resolved, the meeting has already started. Or even worst, sometimes the contributor gives up altogether.

This is more than a technical problem, it is a participation problem. If someone has been invited to contribute but cannot access the meeting, materials or discussion without significant difficulty, can we really say that involvement is both meaningful and inclusive?

Digital accessibility needs to be considered at the point of designing Patient and Public Involvement and Engagement, not after something goes wrong.
That means using accessible platforms, providing clear joining instructions, offering alternative ways to participate and making technical support available to contributors.

PPIE is not simply about opening the door and inviting people in; it is also about making sure they can actually get through it.
And perhaps that is a question universities and ethics committees should be asking: Have we made participation possible, or have we simply made the invitation?

If this resonates, share it with someone working in research, PPIE or research ethics. Let’s keep the conversation going about what meaningful participation really looks like.

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