Utilizing a values framework in the Implementation of Public Patient Involvement: IDS-TILDA as a case study

<ns3:p>Background To achieve genuine and purposeful PPI, individuals must be meaningfully and actively involved in the research process at all stages, including governance, priority setting, conducting the research, dissemination and applying the resulting knowledge. A values framework is needed that encourages such involvement, as are purposeful steps to achieve involvement at each stage of research. Methods Utilising the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing as a case study and guided by the Irish Health Research Forum Spectrum of PPI examples and processes for building of PPI were documented. Results Findings and recommendations were organised into the six components of the research cycle: Identifying and prioritising; designing; undertaking/management; analysing and interpreting; dissemination; and implementation. Conclusion The case example of IDS-TILDA helps to illustrate that PPI is possible for all research subject groups and that the study itself is enriched by this involvement. It also demonstrates that successful strategies co-created with the participants ensure participation reaches the level of genuine involvement in all activities and at all stages of the research cycle.</ns3:p>