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Family Carers Public & Patient Involvement Panel

What is Patient & Public Involvement (PPI) at Family Carers Ireland?

Family Carers Ireland is committed to putting carers at the very heart of what we do. In keeping with this commitment, we are working to embed Patient and Public Involvement (PPI) in our research processes. There are many different ways family carers can interact with research (1):

  • Participation: A family carer may be recruited into, and take part in, a research study and provide data of some form.
  • Engagement: Engagement is when the researcher communicates and shares research information, for example, at science festivals, public talks, television programmes, or radio. 
  • Involvement: Involvement is distinct from participation or engagement. Where participation and engagement are conducted ‘to’, ‘about’, and ‘for’ family carers, involvement is ‘with’ or ‘by’ family carers. Examples of involvement are:‎
    • As joint grant holders or co-applicants on a research project;
    • Advising on the research question and appropriate research methods;
    • As members of a project advisory or steering group;
    • Commenting and developing information leaflets or other research materials;
    • Undertaking interviews with research participants (co-researchers). 

Source: https://integratedcarefoundation.org/wp-content/uploads/2019/05/%C3%89id%C3%ADn-N%C3%AD-Sh%C3%A9-UCD-PPI-Ignite.pdf

 

Why is PPI important?

PPI is becoming increasingly common in research. It can provide a real and substantial benefit to all stakeholders.  While not without its challenges, PPI can:

  • Promote a sense of empowerment and value among carers;
  • Improve researchers’ insights into their own research area;
  • Help researchers identify barriers and come up with solutions to research;
  • Increase trust and acceptability of research findings in the carer community;
  • Improve dialogue between healthcare professionals, patients, service users and carers (2).

Family carers report feeling fulfilled and gaining a sense of worth from taking part in PPI, well as feeling they contributed to research by providing a lay perspective (i.e. practical knowledge about being a family carers (3). Given this, PPI can be a valuable tool in the research process for both carers and researchers. Family Carers Ireland aims to expand its PPI work in the coming years.

Get involved in PPI

To ensure that family carers’ unique insights are included in research projects from the earliest stages, Family Carers Ireland have set up ‘Family Carer Public & Patient Involvement Panel’ – a Public and Patient Involvement (PPI) network of family carers who advise and work with researchers on research projects or carrying out research that involve family carers. In addition to being involved in various research projects across Ireland, members of the panel come together 3-4 times per year for capacity building workshops.

If you are a researcher and would like to engage with members of the Family Carers Research Advisory Network, please complete this form and return it to jmurphy@familycarers.ie.

If you are a family carer interested in becoming a carer representative please email jmurphy@familycarers.ie for further information.

References:

  1. INVOLVE. (2018). What is public involvement in research? Retrieved from https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/ Accessed 21/02/2022. 
  2. Brett, J. O., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient-Patient-Centered Outcomes Research, 7(4), 387-395. https://doi.org/10.1007/s40271-014-0065-0
  3. Di Lorito, C., Godfrey, M., Dunlop, M., Bosco, A., Pollock, K., van der Wardt, V., & Harwood, R. H. (2020). Adding to the knowledge on patient and public involvement: reflections from an experience of co‐research with carers of people with dementia. Health Expectations, 23(3), 691-706. https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/hex.13049