Patient and Public Involvement (PPI) in research is where research is “being carried out ‘with’ or ‘by’ members of the public” not just “’to’, ‘about’ or ‘for’ them”.
Involving and consulting patients and public groups in research ensures it is relevant, participant friendly and ethically sound.
Next Generation Medical Imaging
In 2019, the School of Biomedical Engineering & Imaging Sciences (BMEIS), King’s College London, relaunched a School-wide PPI group upon identifying a general unmet need to provide PPI in their medical imaging research.
The broad purpose of this group is for research scientists, including clinicians in the NHS and university partners, to actively collaborate with patients and service-users to help deliver high quality, impactful research into diagnosing and treating patients across a range of medical areas (i.e., brain and heart conditions, and cancer) using next generation medical imaging technologies (i.e., ultra-sound, MRI, CT, PET, X-ray, combinations of these, and/or others) to ultimately improve patient outcomes.
28 January 2020
St Thomas’ Hospital, London
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 face-to-face 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 held at St Thomas’ Hospital, Waterloo, London, SE1 7EH. Details of venue/room within the hospital will be sent at least one week in advance.
Meetings are organised by a named facilitator (Melissa Bovis) 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 Melissa Bovis, 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 face-to-face 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.
[PIC of research cycle]
Am I reimbursed?
As a patient you are reimbursed for your time, 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 about state benefits and the regulations can be found on the INVOLVE website payment and recognition page: www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/
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 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 Dr Melissa Bovis, Public Engagement Officer, ()
Terms of Reference [LINK] for this group
Available Training via the NIHR GSTT Biomedical Research Centre (BRC): www.guysandstthomasbrc.nihr.ac.uk/news-events/events
Other PPI groups: www.guysandstthomasbrc.nihr.ac.uk/researchers/patient-public-involvement-advice/ppi-toolkit-our-ppi-groups
National Institute for Health and Care Excellence (NICE) Patient and public involvement policy: www.nice.org.uk
NIHR INVOLVE: www.invo.org.uk
The ‘Next Generation Medical Imaging’ PPI Group is co-hosted between partner research groups embedded within the School, and Guy’s and St Thomas’ NHS Foundation Trust (GSTT):
(i) National Institute of Health Research (NIHR) MedTech Co-operative specialising in heart disease (cardiovascular) research
(ii) Multi-user Ultra-High Field Clinical Imaging Research Centre for London specialising in powerful magnetic resonance imaging (MRI) scanning technologies (i.e., 7T project)
(iii) Wellcome EPSRC Centre for Medical Engineering (CME) for research into brain and heart conditions and cancer.