Count the experience, then ask what it means

What we found in the news

A September 2026 WHO/Europe announcement (opens in a new tab) introduced a monitoring framework for disability-inclusive health systems. It describes seven indicators intended to help countries assess progress and notes:

“measuring actual progress consistently remains a challenge”

These are national indicators, not a ready-made scorecard for a local digital service. The useful question for us is smaller and closer to daily work: what evidence would help a community team understand whose experience is improving and whose experience it has not yet heard?

Why this matters to us

A rising usage number can be encouraging. It can also contain several different stories. Existing participants may be returning more often, a new group may have joined, or staff may be helping people complete a step that remains difficult.

The number deserves attention. So do the experiences behind it and the people absent from it. We are interested in measurement that leads to a sensible next decision, with enough honesty about what the information can and cannot explain.

Begin with a question people recognize

Imagine a participant advisory group reviewing how people find the weekly program. On the table are anonymous feedback cards and a simple map of the journey. One person places a card beside the confirmation step: that is where they became unsure whether they had a place.

The manager also has a count of completed online requests. Both pieces of information matter, but they answer different questions. One shows a recorded action; the other describes what that action meant to someone.

Choose a service question before selecting a measure. Can people find the program? Do they understand how to join? Do they know what happens after expressing interest? Each question suggests different information to gather.

Say exactly what was counted

Give a count a clear description. Distinguish people from visits, requests from confirmed places and an opened page from a completed activity. Use a defined period and explain which route the information covers.

If you report a proportion, say who is included in the total. An online completion rate may describe only the people who reached the form. It cannot, by itself, explain the experience of someone who never found the invitation.

Keep definitions steady enough to compare over time, and note changes that affect the comparison. A revised booking process or a newly included location can alter a figure even before anyone's experience changes. A clear explanation is more useful than a tidy-looking trend with an uncertain meaning.

Look for the missing perspective

Invite feedback through more than the route being evaluated. Someone who stopped using an app is unlikely to answer a survey hidden inside it. A conversation at a program, an accessible paper option or contact through a trusted partner may reach different people.

Make participation voluntary and collect only what helps answer the service question. Avoid exposing an individual's situation through a very small group breakdown. Include people in deciding which findings can be shared usefully and respectfully.

Bring the accounts and counts together to choose one improvement. Agree who will make it, when to review it and how participants will hear what happened. Measurement becomes part of a conversation with a response, rather than another request for people to describe the same difficulty.

What this means for the people you serve

People can see that their experience has a place alongside the numbers. Those who choose another route still count as part of the service. Staff can explain a decision more clearly, and leaders can distinguish an encouraging signal from evidence that needs more investigation before making a broader claim.

The genus connection

The current partner portal and insights (opens in a new tab) describe configured observations, reviewable summaries and information that can support organizational discussion. Useful interpretation begins with the evidence the organization actually has.

For a genus configuration, confirm the meaning, coverage and permissions of any information being reviewed. Bring participant accounts into the conversation through appropriate local arrangements. A summary can help the team see patterns, while staff and participants decide what those patterns mean and what to try next. That judgment remains a shared piece of service work.

One question to take away

Which person or part of the journey could be missing from the measure we are most pleased with?