PPI and the HRCDC
Public and patient involvement (PPI) in the planning, design and conduct of research, and in the communication of research results leads to increased effectiveness, credibility and relevance or any health and social care research project.
Involving the public and patients when planning research can help the research team to identify and find solutions to issues that may become a barrier to recruiting or retaining participants, for example, the burden of the planned data collection, or concerns around anonymisation of data. It can also enhance the rights of participants, in particular when it is not considered possible to obtain explicit consent. The HRCDC strongly encourages researchers to engage with appropriate public, patients and carers when planning a health research study.
To this end, researchers are asked, as part of their consent declaration application, to outline what PPI has been undertaken, within their specific study. Regulation 5(4)(c), as amended in January 2021, of the Health Research Regulations, also refers to consultations with data subjects, patients and the public.
PPI can occur throughout the research cycle, from setting the research question through to sharing the research findings. Some examples of strong PPI within a particular study have included involving people with relevant lived experience in the design and development of the study and involving them in ongoing decision-making as members of the steering committee of the study. Research teams also found reaching out to patient or carer groups very beneficial, for example, for help developing the content of participant documentation, to discuss proposed consent processes and for involvement in the dissemination of study findings.
The HRCDC membership includes PPI representatives who bring important perspectives to the HRCDC’s deliberations. The HRCDC’s Standard Operating Procedures requires that the meeting quorum includes at least one of the appointed PPI representatives at every meeting.
In many of its decisions, where the level of PPI in planning the research is considered inadequate in the context of a particular application, the HRCDC has attached conditions and recommendations to consent declarations requiring or requesting the health research study to enhance the level of public and patient involvement.
Find out more about PPI
The PPI Ignite Network is a national network, with offices in seven Universities across Ireland. The Network focuses on building capacity for public and patient involvement (PPI) in health and social care research in Ireland and provides advice and support to academic researchers. Check out the Network’s web site for more information at www.ppinetwork.ie.
Useful PPI resources for getting started
