Keep a place for people at the decision table

What we found in the news

A December 2025 WHO/Europe publication (opens in a new tab) gathered examples of disability-inclusive health initiatives across the region. Among its cross-cutting priorities were:

“shared governance roles with people with disabilities”

— WHO Regional Office for Europe

The publication presents practices and case studies, not a controlled evaluation of one technology. Its relevance goes beyond a single design workshop: people affected by a service can have a continuing place in deciding how it develops.

Why this matters to us

A team may invite participants to test a new digital experience, make useful changes, and then return to making every later decision without them.

Yet the important choices continue. Which difficulty gets attention next? What happens when a new feature changes the experience? How should the service respond when people disagree about what would help?

Imagine a community advisory group reviewing its resource service. Two participants lead a discussion around a low table, using picture cards to compare possible improvements. A manager records the reasons behind their priorities.

At genus, we are interested in keeping that contribution connected to decisions over time. Listening has more practical value when there is an understood route from a concern to a choice.

Give the group a clear part in the decision

Explain which decisions the group can make, recommend, or challenge. The distinction should be understandable to everyone taking part.

In our imagined review, participants might help prioritize changes to resource navigation, while a budget decision remains with the organization’s leadership. Their recommendation still needs a clear route to the person with authority to act.

Agree how the organization will respond and when the group will hear back. A recommendation that disappears into an unspecified review process leaves people unable to judge its influence.

Make the limits discussable too. Participants may see a different way to achieve the purpose once they understand the available time, funding, or technical options.

Support a continuing contribution

Regular participation takes time and effort. Consider access needs, communication formats, preparation, and any arrangements that help people contribute without unnecessary burden.

Offer material early enough to review and explain unfamiliar terms. Someone should not need to become a software specialist to question whether the service is working for them.

Create more than one route for input. People who cannot attend the group may still have important observations, and the group should know which experiences it has not yet heard.

Avoid treating one participant as the voice of every person with a disability. Different experiences can lead to different priorities. Recording that difference is more useful than presenting a false consensus.

Show the decision and return to its effect

Keep a short account of the issue, the options considered, and the decision. Include the reason when the organization chooses a different course from the group’s recommendation.

For our imagined resource service, the next meeting could examine the revised navigation and ask whether it addressed the difficulty people raised. The group can then identify what remains unresolved.

Some changes will need a longer review. Explain what evidence is being gathered and when a decision is expected, rather than bringing the same unanswered item to every meeting.

Invite the group to question the participation process itself. Are the right decisions reaching them early enough? Can they influence priorities, or are they mostly reviewing choices already made?

A continuing role should be useful to the people involved and to the service, with room to improve how the arrangement works.

What this means for the people you serve

People can bring their experience into the choices that shape a service over time. They should understand the influence they have, receive a response to their contribution, and be able to disagree. Participation becomes more credible when the decision and its consequences remain visible.

The genus connection

Today, genus care-app and care-wall experiences are configured around audiences, content, access, and enabled functions. Those choices can be revisited as an organization learns from people using the service.

We would make participant perspectives part of that ongoing review, alongside staff experience and technical evidence. Confirm the available options, record the decision, and return with the changed experience. A platform configuration should remain connected to the community it is intended to serve.

One question to take away

Which decision about this service will people help shape next—and how will they know their contribution mattered?