User engagement and involvement

Crowd of people

Patients, users and carers are essential partners in the production of health information. Their needs and experience bring a fundamentally essential perspective – without it there is no guarantee that the information will be relevant, accessible or useful.

Patients see things that aren’t seen by health care professionals and they see things differently.  Knowing the signs and symptoms of a chronic condition is very different to knowing what it’s like to live with it.  Both types of knowledge are essential in producing high quality information. 

Patients must have information they can understand fully in order to obtain informed consent for treatments. They want to know about the experience of treatments and care – what it feels like – as well as the technical details of what will happen. People want to know about the procedures, treatments, medicines and care they will need, but they also they want the information delivered in a way that they can understand it, without the technical jargon.

Good patient information is informed by service users at every stage of the process: from suggestions for new information resources and revisions of old versions; to the design and writing stages before the final resource is published; and to testing the final version, creating a plan for dissemination, and evaluating its impact.

Best practice

1. Involve users at every stage of your information project:

2. Involve a wide range of representative users

3. Communicate with and keep informed the users you are involving

Patrick talks about why information is important to him

Top Tips

  1. Thumbs-upInvolve users at every stage of your information project. Plan how they will be involved at the start, and involve them at each stage, including: identifying the need, objective and format for your information; user testing how well you have communicated your key messages; planning how you will share and disseminate your information; and evaluating the impact of your information.
  2. Involve a wide range of potential users, and use more than one source of user involvement. It can be easy to rely on just one or two regular users to look at patient information but the more views you have the better. Ensure involvement includes people from all relevant groups, and that your methods for involvement and engagement are relevant for your target group,
  3. You need to recruit people with quite recent experiences because treatments and services change, and experiences from 5 or more years ago (and sometimes less) probably don’t reflect current medical practice.
  4. Patient experiences can sometimes be quite negative and some very positive. It is important to reflect both where possible. It can be unrealistic to describe an uncomfortable procedure with distressing side effects in an overly positive way: you must be honest. However on the other hand you don’t want to scare the reader so much that they are too frightened to have the procedure.
  5. Including experience and comments from users in your information resource can be helpful. Reading or hearing what other patients say about treatments can be comforting to others, or they can offer useful tips on coping with treatments and side effects. Include user voices with a range of perspectives and experiences, and explain the rationale for including particular examples. Seek permission to use any quotes from the individuals involved before publication.
  6. Keep those you have involved informed as your project develops. If you decide not to use a particular patient suggestion in your information resource you may find you have to justify how you came to the decision to that user. Alternatively you might want to make it clear when starting a project that some contributions may not be included in the final resource.
  7. As a writer or resource producer it can sometimes be hard to consider criticism of your work, so where possible try and ask for feedback in a positive and constructive way and not to become personally offended on the occasions when feedback seems overly negative.  There may be good reasons why particular users seem critical of your work which could be related to their own difficult experiences.
  8. Always thank the people who have given up their time to help you produce your information. Send them a copy of the final product making sure that if it is appropriate and requested that they are acknowledged for their input. Thanking people for their contributions is an important part of user involvement.

Find out more about involving users and further resources at:
https://www.pifonline.org.uk/toolkit/guidance/involving/

Page last update: 23 September 2018