Patient and public involvement in research


Age at interview: 77

Brief outline: Anthony has been involved in health research as a lay representative for about seven years. He started off by volunteering as a research participant and was then invited to join groups as a PPI representative.

Background: Anthony is a retired teacher and education inspector. He has two children aged 43 and 41. Ethnic background: White British.

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Initially, Anthony got involved in research as a participant. Soon after, he began to receive invitations to sit on committees and join groups as a patient and public involvement representative. His work has included improving service delivery in several healthcare trusts as well as PPI in research. 

Anthony believes lay representatives should be included in all aspects of the research process from design to dissemination. He has been extensively involved in several different ways: as a co-applicant on research projects and as a reviewer of funding applications, research protocols and information sheets. He thinks researchers have a duty to give participants clear, reliable information about what taking part involves and that lay representatives can be helpful in ensuring this happens. When he considers any aspect or piece of research Anthony asks himself if it is something that any patient in any situation could understand. 

By including people with a diverse range of experiences, researchers can find out what impact their work can have on people and how best to maximise this, and Anthony believes this adds value to research. He believes everyone can be involved in PPI; they don’t need to have a great deal of technical knowledge because life experience is sufficient. Even the simplest questions a lay representative might ask can have an important impact on research. 

Curiosity was what initially motivated Anthony to get involved in PPI and he has continued to be involved because his work benefits him and others. He feels he can positively influence research and the way doctors and researchers speak to and think about patients. The benefits of his engagement in PPI far outweigh its cost, which is mainly giving up free time. But, as Anthony said, “What could be more important than talking about the ramifications and the possibilities of research?”

Anthony encouraged researchers to continue to engage PPI representatives and to work with them as partners. He also stressed the importance of disseminating research findings because researchers have a responsibility to do this especially as they have been funded through public money. 


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