Working with a patient advisory panel in your research
No two cancer experiences are the same, so patient advisory panels allow patients to discuss a much wider range of views and provide you with more robust feedback. Patient advisory panels generally include between 6 and 14 patients.
It’s important that the work of the patient advisory panel doesn’t operate in isolation to the wider project. We recommend inviting a representative of the patient advisory panel (this could be the Chair if you have one) to attend other key meetings (e.g. research steering group) as a patient representative. This will help ensure there’s a connection between the two groups, so that patients’ views are represented in wider discussions and information from these meetings can be fed back to the patient advisory panel.
An expectations agreement is a two way commitment between you and the patient representative. It sets out what ongoing behaviours and support is needed to help everyone succeed in their roles. We recommend developing a core list and then adding to this with the patient representatives at the induction. Once agreed, this becomes a ‘contract’ that you both sign and adhere to.
Here’s a template and example expectations agreement you can use and amend.
Set ground rules
Ground rules can help you run a smooth meeting by defining what behaviours are expected of everyone. Having ground rules makes it easier to moderate disruptive behaviour and ensure everyone gets a chance to contribute.
Here’s a template set of ground rules you can use and amend.
We recommend developing a core list and then adding to this with the patient advisory panel at the induction. This helps everyone define what behaviours they expect from other panel members to enable them to fulfil their role.
Appointing a Chair
It can sometimes be useful to appoint a Chair to the patient advisory panel. Their role can be to represent the patient advisory panel at wider meetings and events. We recommend the role of facilitating meetings remain with a key member of staff, in order to minimise additional pressure or distractions for the Chair. If you’d like to appoint a Chair you can include a question about it in your recruitment process.
Just with any working relationship, building trust is crucial.
Members of trusting teams:
- are more likely to raise new ideas
- provide constructive and thoughtful feedback
- ask for help when they need it
- offer help to those who need it
- look forward to opportunities to work together
Building trust takes time but these are some good first steps:
- allocate team building time with patients so you can get to know each other
- be empathetic
- communicate regularly
- adhere to the INVOLVE principles and your expectations agreement
There are many ways you can get the patient advisory panel to work together. This may depend on the type and quantity of work. For example, you may ask each patient to review and feedback on all appropriate pieces of work. They can do this individually and then work together during panel meetings to agree on what feedback to provide.
Another example is to ask pairs to review a selection of work. They can agree what feedback they’d like to provide. Then during panel meetings, they present on the work they reviewed and their proposed feedback to gather insights from other panel members. The whole panel then agrees final feedback.
Becoming a patient advisory panel member may be a new experience for people. It’s important to make sure they feel they have the knowledge and skills needed to fulfil their role. Learning needs could range from understanding more about research to presentation skills. Check in at key points and ask if they feel there’s something they’d benefit from. Investing in patients’ personal development will also help you build trust and their commitment to your work.
When you are talking with patients they shouldn’t be able to tell your opinion. Make sure questions are balanced, neutral, and don’t lead respondents to answer in a certain way. You should watch out for any non-verbal cues that might make the patients feel like you approve or disapprove of certain answers.
Be aware of groupthink
Groupthink is where individuals agree with the groups’ or individuals’ opinions, often without voicing their own. This is sometimes an effort to maintain harmony or a belief that their idea isn’t as good. There are many techniques to help you avoid groupthink. One is asking people to write their ideas on post it notes individually before sharing with the wider group for discussion.
The people you involve may be very close to their cancer experience. Sensitivity is important. Try not to ask questions that have risk of offending or upsetting your audience. It can be difficult discussing cancer experiences so it’s important all attendees and staff are being sensitive and respectful to each other’s personal experiences.
Recruiting to your patient involvement activity
Once you've planned your method, read on for more information about recruiting patients to your patient involvement activity.