INHALE is supported by its own dedicated PPI panel, based at the University of East Anglia. The seven PPI members of the INHALE research program (listed below) provide a source of knowledge and expertise on PPI involvement in research.
As a group, they have a variety of personal interests and life experiences that support their role. Meeting quarterly as an advisory group, they collectively provide feedback on INHALE's activity. They offer suggestions and solutions on issues submitted by the INHALE research team for consideration and they respond to hot topics that come from the discussions. For example, a recent contribution from the INHALE PPI panel resulted in the machine selection criteria following WP1 becoming more focused on diagnostic accuracy.
The group plays a key role in advising and developing all patient information as well as to the ethical concerns that are raised. The group contributed to the design of the WP2 consent process and patient facing documentation and they are currently helping researchers tackle ethical and patient facing issues arising in the WP3 clinical trial.
Charged with ensuring that patients and carers are central to research, the group aims to be vigilant observers and engaged contributors in all aspects of the research process, through inquiry and questioning as true critical co-producers/friends. For example, recommendations from PPI panel members ensured that a range of hospitals representing the NHS as a whole were given the opportunity to contribute to the research rather than it being focused only on large, teaching orientated institutions.
Three members of the advisory group attend INHALE's twice-yearly program meeting and so have the opportunity to influence the wider INHALE community. As part of the agenda, the three PPI members present the PPI advisory group's work, their questions and recommendations. During the meeting they contribute to discussions and respond to any requests for their input.
PPI members have found their involvement in the INHALE research program very stimulating, rewarding, productive and most importantly they feel greatly valued.
"As a PPI member I have felt supported and encouraged by my peers and the INHALE research team. I have learnt a great deal and have contributed more than I would have anticipated in this type of research. There is an openness and willingness to adapt and innovate ideas which might benefit the research and its outcomes." Penny Vicary, INHALE PPI panel member
The INHALE PPI panel is supported by PPIREs (Public & Patient Involvement in Research PPIRes).
PPIRes has a panel of 60 volunteers from Norfolk and Suffolk. They support researchers in primary and secondary care to develop research proposals with robust and ethical Patient and Public Involvement (PPI).
They continue to support the volunteers and researcher team when the research is funded, through training, mentoring, support meetings and organising travel & honorarium payments.
Members representing PPI at INHALE meetings are in bold.