A Carer’s Perceptions of Patient and Public Involvement in Research


Session type:


Gillian Thomas1
1Self Employed



In 2010 a researcher asked a carer “Why are you crying?” when her husband was awarded funding for his medication. He added “Test tubes don’t cry.” In 2016 Patient and Public Involvement in Research [PPI] is actively encouraged.


Perceptions of PPI are assessed using resources available to a lay enquirer.

Interviews in Social media chat rooms, during PPI training sessions and at public events explore whether the perception and understanding of PPI is altered by training.

Literature searches include journal articles, Local Health Board websites, publicity material and the results of existing surveys.


Individuals hope that “involvement in research might benefit this patient, others and future generations”. However, there is confusion about what PPI actually is.

Individuals may feel they become involved with research through raising funds after a charity has helped them, or by raising awareness of a disease or funding “crisis” after a diagnosis, or by taking part in a clinical trial. Some take it a step further.

Individuals who had attended PPI training were able to differentiate between involvement, participation and engagement. They were also able to identify opportunities which can range from checking patient information leaflets to sitting on funding panels. There is an increasing emphasis on opening dialogues.

Concern was expressed that when patient data is used, especially in academic papers, it should be acknowledged. Individuals voiced a desire to be given feedback.

Organisations are developing mechanisms to measure and report PPI in a robust and meaningful manner and to encourage further PPI.


Demonstrating how PPI has changed practice shows it to be valuable. Involving members of the public in research encourages all stakeholders to “take stock”, perhaps to challenge established ideas and, above all, to talk to each other.