Public and Patient Involvement Advisory Group

Aims

The overarching aim for this group is for patients and service-users (‘experts by experience’) to help guide and shape the School’s next-generation medical imaging and engineering research.

If public members and patients are involved in the process, they will help us deliver higher quality research, which is more relevant, impactful and patient-focused.

This process helps to build public trust, increase transparency and accountability of the research being conducted by our School’s staff & students by valuing and utilising the patient voice.

---

 

 

PPIAG meetings in 2024

• Wednesday 24 January 2024, 12:00 – 14:00 online
• Wednesday 17 April, 12:00 – 14:00 online
• Wednesday 17 July, 12:00 – 14:00 online
• Wednesday 16 October, 12:00 – 14:00 online

---

What happens at a PPI meeting?

At each meeting, researchers will present their work around next generation medical imaging. There is an opportunity to ask questions during the presentation and a discussion with group members after each presentation.

Feedback provided by group members to presenters is used at the discretion of the presenters but presenters will feed back how suggestions were used back to the members.

---

What am I required to do as a patient?

The main requirement is that you are enthusiastic about helping medical research to improve the patient experience.

The group meetings aim to provide an opportunity for discussions of the research with service or end-users. Group member suggestions focus on improving patient experience and provide valuable insights into the patient journey through lived experience (‘experts by experience’) can improve the planning and design of research projects and how these are carried out.

A key requirement is attendance at the meetings (up to ten members), held three-four times a year (depending on the number of expressions of interest received from researchers and the range of involvement activities undertaken). Secondly, reviewing of materials during and/or between meetings.

For example, materials used for patient recruitment to studies (e.g., patient information sheets, flyers), lay summary documents (e.g., for prospective patients and their relatives, or as part of research grant applications) and to provide feedback on new procedures and/or how medical technologies are used. This will improve how medical research is presented to participants and improve the patient experience.

Meetings are now held online and organised by a facilitator  who communicates with all group members.

Membership is reviewed annually.

---

What am I required to do as a researcher?

You are required to fill out an Expression of Interest form and send to Bella Spencer, as well as providing any lay reading materials and slides ahead of time.
You will present your research (at any stage of the research cycle) to the group at a meeting and answer questions on the work put forward. Materials can be reviewed in the interim by members over email.

Feedback provided by group members to presenters is used at the discretion of the presenters. However, there is an expectation that presenters will feed back how suggestions were used back to the members. They will be required to provide any follow-up materials and report back with an update after three months. They may also be contacted for follow-up for the duration of the research project.

---

Am I reimbursed?

As a patient you are reimbursed for your time. If the meeting is face to face you will also be reimbursed for any travel costs incurred (up to the value of a London Zone 1-6 travel card) and any child care expenses. A lunch is also provided for members.

You are required to notify HM Revenue and Customs local office of fees received only if your annual income exceeds your personal income tax allowance at the end of the financial year. You are responsible for calculating whether you need to pay any tax or National Insurance or if it will affect your benefits. Further information on payment guidance for members of the public considering involvement in research is found online: https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-public-considering-involvement-in-research/27372 

---

Confidentiality

Materials provided to be discussed by the group must remain confidential and should not be discussed with anybody outside of the group. This is because there may be intellectual property involved: commercially sensitive information and copyright issues. Further, members pay disclose personal information and experiences, which they may not want shared.

---

Interested in joining?

We are currently recruiting members for this group who have lived experience as a patient, carer or family member, with conditions relating to the brain and heart, and/or cancer, at all life stages (perinatal to adult) and who have no/little previous PPI experience.

If you are:

(a) a patient interested in joining (and meets the above criteria)
(b) a researcher who wishes to present their research at the group or
(c) interested to know more

Please contact Lisa Whittaker

---

Resources

Support via the NIHR GSTT Biomedical Research Centre (BRC): https://www.guysandstthomasbrc.nihr.ac.uk/patients-public/

National Institute for Health and Care Excellence (NICE) Patient and public involvement policy: www.nice.org.uk

There are a number of other disease specific PPI groups that researchers can tap into: https://www.guysandstthomasbrc.nihr.ac.uk/patients-public/how-can-i-become-involved/
These external groups include the South East London Cancer Research Panel.

---

Partners

The ‘Next Generation Medical Imaging’ PPI Group is funded by the Wellcome/EPSRC Centre for Medical Engineering and located within the School of Biomedical Engineering & Imaging Sciences at King’s College London.