Top Tips for Crohn’s and Colitis Patient Panels

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 below. Patient panels can be used to gather feedback from patients about their experiences and expectations, which can then be used in service planning and review, they can also be referred to for advice throughout a piece of service development work or research.

Preparation and planning

Recruiting patients

  • Have a look at our template letter for ideas and inspiration around recruiting patients to set up your Patient Panel.
  • Working with the hospital comms team, adding something to your advice line signature or auto response and running your own survey about patient experience, asking if anyone interested in joining the patient panel could also be considered when recruiting patients.

Areas of focus

  • Identify a potential work plan based on the IBD Standards or your IBD Benchmarking Tool report and/or the patient journey in your service. Developing and finalising this work plan should be done jointly with the patients in your panel. You can use this plan to keep checking your progress.

Being inclusive

  • Try to represent the diversity of people using the service. Use a range of methods from the Patient Engagement Toolkit to reach beyond the Panel.
  • Think about how to reach minority groups when you’re recruiting Panel members. See our Accessibility and Inclusivity Guide for more information.
  • People who cannot or prefer not to meet face-to-face (e.g. because of illness or caring commitments) can still give valuable contribute to the Panel. Think about using email, phone calls, webinars and closed social media groups such as Facebook and WhatsApp.
  • If you find that your patient panel is not inclusive, using methods described with in the toolkit for healthcare professionals to do single pieces of engagement with other patients outside of the panel can work well. The patient panel can then support with reviewing the findings and discussing potential service improvements.

Your first meetings

Take a partnership approach

  • The Patient Panel should be about patients and healthcare professionals working together to bring about improvements. It should model a relationship of collaboration and mutual respect. You should aim to have a healthcare professional from the local IBD service at every patient panel meeting.
  • Develop terms of reference for the group and a work plan together, this can help things to stay focussed in the future and ensure you are working jointly.

Patient Leadership

  • A Patient Panel should be chaired by a patient and the panel should be free to set its own agenda. It doesn’t need to respond to demands from the IBD service, Trust or Health Board.
  • Ensuring that members of the panel have specific roles e.g. patient lead, chair, secretary can be useful. You could consider rotating these regularly but this often works best when established as part of the terms of reference when the panel is first set up.

Support patient’s understanding

Maintaining the patient panel

Regular Meetings

  • If holding meetings, these are usually four times a year. Make an agenda, keep notes and an up-to-date contact list. Be aware of data protection laws when storing people’s details and communicating with them, the Information Commissioners office provides some useful advice and checklists.

Build networks and relationships

  • Share experiences with the IBD team, offer new ideas or at a Health Board or Trust level and advocate for more funds or raising awareness of Crohn’s and Colitis.
  • Local relationships – keep your Crohn’s and Colitis local network informed and involved.
  • Look for local allies such as:
  • Other users’ panels groups in the hospital
    • Trust / Board management
    • Foundation Trusts
    • Patient Advice and Liaison Service (PALs), Our Voice (Scotland)
    • Health and Social Care Partnerships Scotland.
    • The hospital communications team

Think national and regional

  • Could your panel get involved in national or regional activities to strengthen the voice of the Crohn’s and Colitis community?
  • Does your panel have time and capacity for this?

Review

  • Review the Panel’s achievements against the work plan every year and update it.
  • Could the Panel take on more activities or do you need to focus on a key project?
  • It can be useful to refer back to your initial work plans and terms of reference, amending them but also making changes where needed to keep everyone on track.

What Patient Panels do and don’t do
The primary purpose of an IBD Patient Panel is to discuss ways local Crohn’s and Colitis services could be improved - not to take direct action to improve services. Patient Panels don’t usually get involved in:

  • Fundraising
  • Direct service provision such as support, mentoring or buddying newly diagnosed patients
  • Producing leaflets or web pages about IBD services

These activities may need to be done by others such as a Local Network (fundraising) or by the service itself. Nevertheless, a Panel could get involved in the discussions about the content of websites/ leaflets or the need for a buddying service.