Patient Partner Involvement

What is PPI?

Patient partner involvement is the active, meaningful collaboration of patients, carers, and the public in healthcare research, service design, and decision-making. There is no substitute for the insight people with lived experience can provide to academics and said input can, and should, drive research. PPI has been at the core of the SenseCheQ project and will continue to do so as we attempt to bring self-administered, home-based sensory testing to the community.

How has PPI been involved in SenseCheQ?

A patient partner group was recruited at the very outset of Phase 1 informing the investigations we proposed and were costed into the original application. They have subsequently served as an integral part of the project being represented on the project management group and participating in regular PPIE group meetings to assist with our understanding. Our patient partners were included in discussions on most questions regarding the protocol and device being developed.

They provided us with the initial scope and framework for what was likely to be acceptable/beneficial and implementable for our planned testing.

  • They told us that it needed to be a short test protocol (10-15 minutes)
  • The test needed to be easy to administer ideally without a carer’s help while undergoing treatment
  • The interface needed to be simple and intuitive to use
  • The equipment needed to be compact and portable
  • Test location of testing on the body needed to be easily accessible for comfortable testing

They challenged many of our starting presumptions. Facing these overarching goals, we initiated a series of studies and developed multiple versions of our sensory testing equipment. We found that the sole of the foot was not sensitive enough to mechanical stimulation to be a viable test site and moved on to other sites – the top of the foot and the palm. Symptoms usually occur quicker and are more severe at the feet, but our patient partners indicated strapping a test device to the top of the foot would be quite cumbersome. Further investigations revealed the palm of the hand to be sensitive and confirmed it as a viable target which on discussion we agreed with our PPI remit.

Further discussion with our PPI group resulted in our selection of three sensory test measures. These were vibration detection, cold detection and warm detection. We discounted pain threshold testing as our PPI group indicated non-supervised administration of painful stimuli in a home setting would not be preferrable. Literature reviews and our own experiments aligned with this request as pain threshold measurements have shown to have poor sensitivity in differentiating between participants with and without neuropathy.

We then set out to engineer integrated hardware that reliably delivered those stimuli and measured user responses. This was followed by development of the user interface again in collaboration with our patient partners. We developed an initial version consisting of two physical buttons and a basic user interface with an instruction set presented on screen. The protocol was then evaluated by our patient group and their feedback used to iteratively develop the interface until the final version was approved. The usability of the device has been noted in subsequent home use of the device by both healthy participants and people with cancer undergoing chemotherapy treatments with positive feedback and evidence of compliance with testing during treatment.

Our patient group also helped design

  • Recruitment posters
  • Consent forms
  • Participant Information Sheets
  • An ART workshop supported by an art facilitator designed to generate visual representations of how people experience CIPN – to improve the visibility of the condition (see gallery HERE)
  • This website

They had input to drafts of our first paper which includes specific statements from them that motivated our investigations (the paper can be found HERE).

What is the future of PPI involvement in SenseCheQ?

We have expanded the involvement of people with experience in SenseCheQ for Phase 2. The Advisory group who feeds back on the entire project is now accompanied by a diverse, development-centric Design group. This group will tightly collaborate and feedback on the development of the minimal viable product from a user perspective. We want to develop a design which is accessible, intuitive, ergonomic, and easy to store while retaining the high level of test reliability required for testing in a home setting.

Patient partners will also be involved in development of novel tests which we hope may be brought forward to a future version of SenseCheQ. This development will very much mirror the template from Phase 1 which resulted in our current iteration of the SenseCheQ sensory testing protocol and device.

Without a doubt, the current version of SenseCheQ equipment, securing additional funding and taking SenseCheQ into Phase 2 would not have been possible without the continual contributions of our patient partners.