The role of patient and public involvement in oral health and HIV/AIDS research, practice and policy

Oral Dis. 2020 Sep:26 Suppl 1:117-122. doi: 10.1111/odi.13584.

Abstract

Patient and public involvement (PPI) is a process whereby patients, caregivers, service users and other relevant stakeholders, including the general public, are actively involved and engaged in activities to develop research. The dental research agenda has traditionally been driven by clinicians, where patients and the public have participated in research as subjects; patient and public involvement can contribute to the research agenda including the design and conduct of research by providing unique perspectives gained through lived experience. This panel of the 8th World Workshop on Oral Health and Diseases in AIDS considered the role of people living with HIV (PLHIV) to contribute to oral health and HIV research and policy through a process of involvement and empowerment. The panel introduced the concepts of PPI, described the purpose of PPI, reflected upon the logistic and ethical considerations thereof and considered how PPI had been utilised effectively in HIV research and policy change. The audience discussion focused on ways in which PPI could more readily and consistently be encouraged within oral health research involving PLHIV.

Keywords: HIV; co-production; involvement; oral health; research methodology.

MeSH terms

  • Acquired Immunodeficiency Syndrome*
  • Caregivers
  • HIV
  • HIV Infections
  • Humans
  • Oral Health*
  • Patient Participation*