We want to see the same high-quality care and support for everyone with Crohn’s or Colitis, across the UK. This toolkit aims to support you to work in partnership with your patients to achieve better patient outcomes.
Firstly, take a look our definition of patient engagement and our useful diagram, which categorises the types of patient engagement, explaining the benefits of co-production when working in partnership with people with Crohn’s or Colitis.
Co-production is a collaborative approach to design that tries to actively involve all stakeholders (e.g. healthcare professionals, patients, families and carers) in the design process. It aims to ensure the end-product meets everyone’s needs and is usable.
A recent workshop to design self-management tools for NHS Scotland was the first time I have been involved in a piece of work that is truly co-produced between patients … I now understand that what patients need and want is much broader. I see no reason for all healthcare professionals not to take this approach.
This toolkit includes a range of methods to help you engage with patients in your service, including pros and cons for each. These are:
- User panels & reference groups
- Focus groups
- Process mapping
- Surveys, questionnaires & interviews
- Digital stories
- World cafe
- Emotional touchpoints
- Service Open Days
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.
The table below 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 and participation can help you to choose the method that’s right for you.
► Click here to view the diagram as a larger PDF
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:
- act as a sounding board and advise on service redesign, development and research.
- pro-actively offer suggestions for future developments and guide current service improvements
- inform and empower patients, carers and families.
- Highlight emerging concerns and issues.
- A good way to establish ongoing, two-way dialogue and build relationships between service providers and users.
- Easily adapted to partnership working.
- Both panels and reference groups value people’s lived experience as equal to evidence-based data.
- Care needs to be taken over how the panel/ group is recruited to ensure it’s inclusive. See our accessibility guide.
- Panels do not take account of people who have not yet accessed the service, such as the newly diagnosed or awaiting diagnosis, however you could work with the panel to do pieces of outreach to find out the views of patients outside of the panel or the service.
- Panels may be overused to the point where they become disengaged or simply don’t have enough time to respond. Carefully planning out how frequently you engage with members can help avoid this.
- Over time, panel members may come to identify with the service and become less critical. This is less likely to happen with a reference group with a shorter timeframe.
- Service providers might rely on a panel as their only method for involving patients.
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:
- explore a variety of issues
- test solutions
- explore the group’s perspective of a problem
- generate ideas
- discover what people really feel and think about a topic or service
- reveal a range of views.
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.
- An efficient way to get lots of information and explore views in depth.
- 'Seldom heard' groups can be included.
- People may feel more able to speak up, hearing others voice their concerns.
- Being in a group encourages discussion and can spark new ideas.
- People may feel they need to fit in with other’s views or give positive comments about the service.
- Some people may not wish to share sensitive things with the whole group. Offering the group the option to give one-to-one feedback, if something is too personal could help.
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.
- A relatively quick and cheap tool to use.
- Provides different perspectives and generates lots of ideas for improvement.
- Enables team building among staff and management and / or between patients and providers.
- Everyone understands the issues. This makes people less resistant to proposals for change.
- Cost of external facilitation.
- People who are not in the room aren’t engaged in the process, so they may be unable to understand the map that is produced.
For more information on Process Mapping and practical examples see these websites:
You can use surveys, questionnaires and interviews to:
- get views from a sample of people
- find out quickly what people think about a service, including proposed changes
- gather ideas for improvement.
A survey, questionnaires and interviews can be online, postal, face-to-face or over the telephone.
- You can collect broad information from a large, representative sample OR in-depth information from a smaller sample.
- Surveys can be completed in people’s own time.
- Online questionnaires can reduce printing, distribution, data input time and costs.
- Face-to-face interviews allow the interviewer to ask for clarification and obtain more detailed information.
- Telephone interviews are faster and cheaper than face-to-face interviews but thought needs to be given to how you will capture feedback, such as recording the call or the interviewer filling out a questionnaire.
- Responses to most types of survey can be anonymous. This means less risk around data protection and potentially less bias seen in responses.
- Writing a survey is a skill. If you don’t have the skills within your organisation, it is important to get support in developing your survey questions.
- If people don’t understand a question in an online or paper survey, they can’t contribute a relevant response.
- Consider how your patients like to respond. In general, do your patients engage best with post, email or social media? If you design an online survey but most of your patients don’t go online, then your response rates are likely to be low.
- There is a risk of excluding people who have English as a second language, those with a learning difficulty or lower literacy skills.
- Face-to-face interviews can be lengthy and costly to carry out.
For more information on surveys, questionnaires and interviews and practical examples see these websites:
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.
- The storyteller has full ownership of the story.
- You can adapt the approach to people’s physical and mental health needs and to demands on their time. E.g. making a story with carers, hospital inpatients, healthcare professionals during their working day, people too unwell to leave their home.
- The end product can easily be shared via the web and social media providing you have full consent.
- Can be time consuming to make.
- You will need technical equipment, e.g. a microphone, headphones and editing software. Although you can record on mobile phones, real care is needed with sound quality and lighting.
- Many production companies are skilled in creating digital stories about health and care, but costs can be high. Though you may be able to find someone outside your organisation or who is training at a local college who is willing to help at a reduced rate.
- Some government and NHS organisations block streaming of video files, so the end products might not be as accessible as you would hope.
- It is vital you understand rules around disclosure, consent and data protection when using and storing stories.
For more information on digital stories and practical examples see these websites:
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!
- Works best with a mix of people bringing different ideas, backgrounds and experiences. The more skilled the facilitator, the more people whose views are less frequently heard feel included. See our top tips for ensuring your patient engagement is Accessible and Inclusive.
- Facilitators need to be experienced and work well with table hosts.
- If feedback is not analysed immediately, you risk losing some themes and solutions. Think about how to store flipchart paper and post-its and who will type these up? Will they understand what is written? How can they check if they are unclear about meaning?
For more information on the method and practical examples see these websites:
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.
- Helps patients and staff to get in touch with their own emotions and talk in a more meaningful way about what matters to them.
- Supports patient, family and staff involvement in service improvements, and develops relationships between them.
- Challenges assumptions and affirms that even the little things can have a big impact on shaping people’s experiences.
- Helps to show positive and negative aspects of experiences in a balanced way.
- Highlights simple, practical changes that your services can make.
- Must be properly facilitated with a minimum of 20 minutes per person. It requires skilled support if the listeners are to really understand what the storytellers mean.
- Depends on the relationship between the storyteller and listener, use of questions and willingness to share.
- You should type up the story and offer it to the storyteller to review and change. This can be time consuming.
For more information on the method and practical examples see these websites:
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.
If you are living with Crohn’s or Colitis and want to find out more about getting involved, please take a look at our Patient Engagement Toolkit for people with Crohn’s or Colitis.