ico-5

Engage meaningfully with ‘real’ users

Community activityThe involvement of users in your information project should be meaningful, not tokenistic.

As part of this, it is crucial that you engage with representative users. For example young people will have different requirements to older people, someone newly diagnosed with a condition will have different needs to someone who has lived with a condition for 10 years.

This requires producers to look for individual, non-expert patients, and to respect all diversity

Users may include:

  • those with limited literacy skills.
  • people from vulnerable or excluded groups, such as homeless people, drug users, vulnerable migrants, sex workers, traveller communities.
  • those who don’t regularly use resources, and who do not regularly use documents or websites, for example, in daily life.
  • those who don’t currently access the current information resource or project.
  • experienced users who can have valuable insights as to what did or didn’t work for them

Why is this important?

Participants questioned whether it was necessary to have such a long and complex booklet to inform people about the screening programme: ‘This is an awful lot for people to read, this is just handed out? Hell of a lot to read isn't it?’'

Smith, S. G., Vart, G., Wolf, M. S., Obichere, A., Baker, H. J., Raine, R., Wardle, J. and von Wagner, C. , How do people interpret information about colorectal cancer screening: observations from a think-aloud study. (2013.) doi: 10.1111/hex.12117.. Health Expectations.
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How have others done this?

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Annie talks about what makes information work for her