To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic.

ABSTRACT

BACKGROUND: Public and patient involvement and engagement (PPIE) is an important part of research. The inclusion of PPIE in research is becoming more widespread, however, there are some areas where it is still uncommon. For example, undertaking PPIE in secondary analysis projects is uncommon and PPIE with difficult to reach populations and vulnerable groups can be seen as being too difficult to facilitate. The aim was to summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary analysis with a vulnerable, hard to reach population; residents of residential care facilities (RCFs), during the COVID-19 pandemic. METHODS: As part of a project to develop a publically available database of statutory notifications of adverse events from RCFs in Ireland, residents (n = 9) from RCFs for older people and people with disability were telephone interviewed. Residents were engaged through gatekeepers and posted participant information and consent forms. Themes were identified using content analyses of interview notes. RESULTS: Three parent themes were identified, each with two subthemes privacy concerns, enthusiasm and dissemination of research findings. Residents highlighted the importance that no personal information be shared in the database. Once data were anonymized, residents thought that the database should be published and shared. Residents reported being happy about research being undertaken using the data and thought that publishing the database would help inform the public about RCFs. Completing a PPIE project with a vulnerable group during the global COVID-19 pandemic required planning and resources. Resources included finances, time and expertise. CONCLUSIONS: The involvement of residents informed the data inclusion in the published database and the approach taken in the protection of personal data. Enthusiasm for publication and research using the database by residents encouraged the developers as it was considered something that was wanted by residents. The benefits of PPIE can be achieved with vulnerable groups during unprecedented times with the appropriate planning. It requires dedication of time, finances and expertise. Overcoming the obstacles was achievable and worthwhile. The approach outlined can be used as an example to support PPIE in secondary analysis projects and or with vulnerable groups.

When doing research, it is important to involve the people that the research is going to impact. Research projects are increasingly including this involvement, however, there are some areas of research where it is not yet commonplace. For example, when undertaking projects with existing data or when the people of interest are considered a difficult to reach or vulnerable group. The LENS project (LEarning from Notifications in Social care) is a research project that developed and published a database using existing data on safety incidents in care homes. We carried out a consultation with people living in care homes as part of this project. People were asked for their input on the development of the database and the research that was being carried out on it. This work was completed during the COVID-19 pandemic and, as such, the people giving input were considered a vulnerable group. The people living in care homes were concerned about personal details being included in the database. Once they were reassured that no personal information would be included they were supportive of the database being made public. They also offered ideas about how the research that used the database could teach people working and living in care homes. The article describes how the researchers engaged the people and what was needed to achieve this. The article shows that involving people from vulnerable groups and in research relating to existing data, adds value even though there are obstacles to overcome. It is summarised here as an example for researchers undertaking similar work.