PPI-POWER-Planning our work with equity and respect: A case study of PPI working
Abstract Background Patient and Public Involvement (PPI) is increasingly advocated for undertaking research that is useful and relevant to those impacted by it. Funding bodies now include PPI as a mandatory part of funding programmes. Although researchers may be open to PPI research, the practicalit...
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| Format: | Article |
| Language: | English |
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BMC
2025-05-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-025-00723-1 |
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| author | Anne-Marie Martin Kayleigh Twomey Mary Doyle-Kent Lorraine Woods Joanne Murphy |
| author_facet | Anne-Marie Martin Kayleigh Twomey Mary Doyle-Kent Lorraine Woods Joanne Murphy |
| author_sort | Anne-Marie Martin |
| collection | DOAJ |
| description | Abstract Background Patient and Public Involvement (PPI) is increasingly advocated for undertaking research that is useful and relevant to those impacted by it. Funding bodies now include PPI as a mandatory part of funding programmes. Although researchers may be open to PPI research, the practicalities of this approach can be unclear. Therefore, we describe how we worked together to identify research priorities on a project called PPI-POWER (Patient and Public Involvement-Planning Our Work with Equity and Respect). Methods Our team comprises a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher. We used a diary study approach to document the strategies we used to ensure everyone was heard and involved, building our partnership, successes, challenges, practicalities. We met approximately every six weeks. At the end of each meeting we talked about how we found preparing for and being part of that meeting. Results We use the PPI Ignite Network Values and Principles (2022) as a framework to present our experiences. Clear, open communication, transparency around expectations as well as flexibility, respect and understanding regarding responsibilities beyond the research were important issues that were necessary for successful working. Conclusions Careful, considerate teamworking supports the development of PPI partnerships that will be invaluable and impactful. Although our work relates to people with intellectual disability and their carers, the strategies we used can apply across different groups. Further, we make a number of recommendations that support respectful, collaborative working for those planning PPI research. |
| format | Article |
| id | doaj-art-a73bdfa67ecd46c29e45e91b8bb017eb |
| institution | DOAJ |
| issn | 2056-7529 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj-art-a73bdfa67ecd46c29e45e91b8bb017eb2025-08-20T03:16:35ZengBMCResearch Involvement and Engagement2056-75292025-05-011111710.1186/s40900-025-00723-1PPI-POWER-Planning our work with equity and respect: A case study of PPI workingAnne-Marie Martin0Kayleigh Twomey1Mary Doyle-Kent2Lorraine Woods3Joanne Murphy4School of Nursing and Midwifery, Brookfield Health Sciences Complex, University College CorkGraduate, University College CorkResearch Officer, Family Carers IrelandResearch Officer, Family Carers IrelandResearch Officer, Family Carers IrelandAbstract Background Patient and Public Involvement (PPI) is increasingly advocated for undertaking research that is useful and relevant to those impacted by it. Funding bodies now include PPI as a mandatory part of funding programmes. Although researchers may be open to PPI research, the practicalities of this approach can be unclear. Therefore, we describe how we worked together to identify research priorities on a project called PPI-POWER (Patient and Public Involvement-Planning Our Work with Equity and Respect). Methods Our team comprises a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher. We used a diary study approach to document the strategies we used to ensure everyone was heard and involved, building our partnership, successes, challenges, practicalities. We met approximately every six weeks. At the end of each meeting we talked about how we found preparing for and being part of that meeting. Results We use the PPI Ignite Network Values and Principles (2022) as a framework to present our experiences. Clear, open communication, transparency around expectations as well as flexibility, respect and understanding regarding responsibilities beyond the research were important issues that were necessary for successful working. Conclusions Careful, considerate teamworking supports the development of PPI partnerships that will be invaluable and impactful. Although our work relates to people with intellectual disability and their carers, the strategies we used can apply across different groups. Further, we make a number of recommendations that support respectful, collaborative working for those planning PPI research.https://doi.org/10.1186/s40900-025-00723-1Patient and public involvementResearchIntellectual disabilityFamily carers |
| spellingShingle | Anne-Marie Martin Kayleigh Twomey Mary Doyle-Kent Lorraine Woods Joanne Murphy PPI-POWER-Planning our work with equity and respect: A case study of PPI working Research Involvement and Engagement Patient and public involvement Research Intellectual disability Family carers |
| title | PPI-POWER-Planning our work with equity and respect: A case study of PPI working |
| title_full | PPI-POWER-Planning our work with equity and respect: A case study of PPI working |
| title_fullStr | PPI-POWER-Planning our work with equity and respect: A case study of PPI working |
| title_full_unstemmed | PPI-POWER-Planning our work with equity and respect: A case study of PPI working |
| title_short | PPI-POWER-Planning our work with equity and respect: A case study of PPI working |
| title_sort | ppi power planning our work with equity and respect a case study of ppi working |
| topic | Patient and public involvement Research Intellectual disability Family carers |
| url | https://doi.org/10.1186/s40900-025-00723-1 |
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