PKB Patient Advisory Group Terms of Reference  

Last updated: 27th October 2023 (Version 1.1) 

Purpose: 

The purpose of the PKB Patient Advisory Group is to: 

1. Provide patients using PKB an opportunity to share their experiences and feedback regarding the existing PKB product. 

2. Give patients the opportunity to give feedback on new designs and concepts for upcoming features as appropriate. 

3. Provide an opportunity for PKB to seek structured advice and feedback from our patient users on specific developments, our product and roadmap, via a formal group.

4. Help PKB understand sentiments - e.g. how patients find using PKB and what their perceptions, thoughts, feelings and preferences related to PKB features

5. Act as a two-way communication channel between PKB and our patient users.

Members: 

The PKB Patient Advisory Group comprises invited delegates representing our patient and carer PKB user community. These delegates should be active or past Patients Know Best users.  

We are seeking users in regions with similar usage of PKB, therefore, we are initially looking for the following communities to be represented: 

• Patients or carers in North West London 

• Patients or carers in Sussex 

The structure of the group will be reviewed after each session. There will be 8 places for patients per session. Patients will be asked to submit their interest in attending a group and PKB will rotate invitees (depending on numbers). 

Patients Know Best Product Team commits to: 

• Manage and chair the meetings effectively, to promote productive communication and discussion. 

• Plan dates and topics in advance of the meeting.

• Communicate effectively with the group. 

• Review all feedback received from the group to help inform product decisions and improve the user experience where appropriate. 

The attendees should commit to:

• Respect the roles and opinions of the other delegates, the Chair and others in attendance. 

• Make every effort to represent, feedback to and communicate with the group effectively.

PKB Patient Advisory Group structure 

Meeting structure:

• Focus group size: 

  • 8 patient (or carer) PKB user representatives

  • PKB to provide chair/moderator and note taker

  • A trust lead from each patient area may also be invited to attend as an observer

  • Aiming for a diverse group that is representative of our patient users. 

• Meeting time: 60 mins

• Meeting frequency: TBC - biannual at minimum - aim for quarterly

• Online meeting: PKB to host a Zoom meeting

Role of the chair (moderator):

• Neutral facilitation - The Moderator should remain neutral and avoid showing any bias towards any participant’s response

• Active listening and probing - Ensure that participants understand that they are being heard. Echo or clarification probing. React to participants’ comments and ask them to clarify a single word or thought (Use it not only for our own purposes but to help clarify an idea for others so they can more easily understand and add to the discussion)

• Inclusive engagement - Ensure that all participants contribute to the discussion. Stop one or a few participants from dominating the discussion or the ideas.

• Balance - Moderated and follows a script but should feel free-flowing and unstructured. The moderator should keep the discussion on track without inhibiting the flow of ideas

• Personal perspective - Ask people not to generalise and talk and make assumptions about others but focus on their own feelings and preferences. Ask them to speak in the first person singular. 

• Flexibility - Stick to the script but be prepared to explore unexpected avenues. Pay attention to surprising comments and inquire with the group to see if certain ideas resonate with others

• Time management

Question guidelines for PKB moderator or chair:

• Ask open-ended questions - that can’t be answered with yes or no

• Concise - Avoid jargon and ensure questions are easily understood

• Neutral - avoid leading questions

Meeting notes & recording of sessions

Notes will be taken during the PAG meetings, and these notes may be documented or published (unless deemed sensitive information) however attendee names will not be included in the notes. 

PAG meetings may also be recorded. The primary purpose of recording meetings is to facilitate learning and training. The recordings may be used to review discussions, make accurate notes or improve knowledge sharing. The recordings will only be used internally at PKB.  All participants will be advised of recording at the start of the session.

Structure of meetings

1. Introduction 

2. Summary of the previous session as appropriate

3. Warm-up 

4. Questions & Topics 

5. Wrap up