Public and Patient Involvement in Research – PPI

Cystinosis Ireland and the HRB are committed to promoting real engagement of the public and patients in the research that we support.

  • ‘Public’ means everyone in Ireland who has an interest in health and social care as a public service including potential users of services.
  • ‘Patient’ means people who use services such as patients, service users, clients or their carers.
  • ‘Involvement’ means the active involvement between people who use services, carers, the general public and researchers.

PPI can include, for example, involvement of the public and/or patients in the choice of research topics, assisting in the design, advising on the research project or in carrying out the research. A comprehensive approach to PPI by all HRCI-HRB applicants is recommended. Those for whom benefit is intended should be at the heart of decision-making within the research project.

Often, applicants are required to describe public or patient involvement in the proposed research throughout the various stages of research design and planning, conduct, analysis and dissemination.

Applicants must state whether public or patient involvement is included in the application and describe

  1. the purpose of the involvement,
  2. public or patient involvement to date and how that has influenced/changed what work has been planned, and
  3. public or patient involvement planned for the duration of the award.

PPI reviewers will have access to the entirety of the application, including the charity background information on work and strategic research priorities, plus accompanying peer reviews and right to reply from the applicant. They will focus in particular on how the research is described in the lay summary, the proposed impact of the work and dissemination channels, the specifics on public and patient involvement and will advise on whether the proposed budget is appropriately supporting PPI activities during the project (if appropriate).

It is recognised that the nature and extent of active public involvement may vary depending on the proposed study.

The Principal Applicant must clearly articulate how the level of public and patient involvement is appropriate to the specific research proposed.

The assessment of the proposal’s PPI approach may influence the assessment of any or all criteria depending on the nature of the proposed research.

In the HCRI-HRB joint funding scheme in particular, all proposals considered by the HRB’s Joint Selection Panel will be graded on how appropriate the level of PPI is for the research project they propose. This grading will inform the consensus Panel score, and therefore the final ranking and recommendation for funding.