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We want to see the same high-quality care and support for everyone with Crohn’s or Colitis, across the UK. People living with Crohn’s and Colitis and healthcare professionals need to shape health services, together. This page aims to support you to work in partnership with your patients to achieve better patient outcomes.
Before you get started, take a look our definition of patient involvement and our useful diagram, which categorises the types of patient involvement, explaining the benefits of co-production when working in partnership with people with Crohn’s or Colitis.
This page includes a range of methods to help you engage with patients in your service, including pros and cons for each. These are:
There are further reading suggestions and useful resources to help you put the methods into practice and top tips for ensuring your patient engagement is Accessible and Inclusive.
This table will help you consider each method of engagement discussed in this toolkit, to understand which method(s) will help you to engage patients at which level. Using this diagram alongside our ladder of engagement can help you to choose the method that’s right for you.
User panels gather feedback from patients about their experiences and expectations, which can then be used in service planning and review.
Reference groups are groups of patients or other stakeholders that you can refer to for advice throughout a piece of service development work or research.
The IBD Patient Panel model is well developed and used across the UK, please take a look at our top tips for running an IBD Patient Panel for more information. The other methods of engagement outlined in this toolkit can be used within your IBD Patient Panel or as a stand-alone.
User panels and reference groups can:
Focus groups, tend to be used as a one-off piece of engagement, where a facilitator guides approximately six to ten people through a discussion. With well prepared themes and questions, focus groups can:
You can run focus groups as a stand-alone or as part of a bigger event, such as a workshop or an open day.
Focus groups can give a voice to people who aren’t usually heard and can be used to discuss sensitive subjects. It’s vitally important to make focus groups diverse and inclusive, to represent all voices from the Crohn’s and Colitis community. See our guide: top tips for ensuring your patient engagement is accessible and inclusive.
This is a powerful, interactive tool that has already been successfully used to develop IBD services. It helps healthcare professionals understand the experience of care from the service patient's perspective. A process map is a picture of the patient’s journey through a service from diagnosis, through to Primary Care and then inpatient and outpatient services. It identifies any gaps or pinch points in the system.
Process mapping is easy, creative and fun. It gets people talking and listening and gives everyone a broader view of what is happening, rather than what people assume is happening.
You can use surveys, questionnaires and interviews to:
A survey, questionnaires and interviews can be online, postal, face-to-face or over the telephone.
Digital stories are powerful first-person narratives, in the storyteller’s own words and voice. They can combine images, music or video clips into a short video (usually 2-5 minutes).
Making digital stories can be enjoyable, creative and empowering. The end product is authentic and can really touch hearts and minds.
This tool helps to generate ideas and imaginative solutions on challenging issues. It can be used as a stand-alone event or as part of a larger event. People are encouraged to chat in small groups, to share a story and build on the story. It allows people to speak or simply to listen. Linking several groups’ conversations helps identify common themes and new insights. Well facilitated, this is fun!
Emotional touchpoints is a rich and useful tool. Touchpoints refers to key moments or events that stand out in a person’s experience of receiving or delivering a service. The idea is that people remember particular feelings or have deep and lasting memories about particular parts of a service.
An open day is a free event that gives people using a service, including parents, carers and newly diagnosed patients, the chance to meet their healthcare team. This could give patients an opportunity to talk about their experience and suggest ways the service could be better and could also be used to help you find individuals who are interested in get more involved in service development in some of the ways described above.
Take a look at our top tips for holding a service open day to find out more.
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Signposting you to specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.