Patient and Public Involvement in health research: Exploring the views and experiences of South Asian participants

Problem

Involving patients and public in research has become important to health and social care research, both in the UK and internationally. However, those who are usually involved in PPI activities do not always represent people from diverse backgrounds. Research suggests that people from minority ethnic groups experience health inequalities and one of the ways to tackle this is through effective involvement of people from minority ethnic groups. It is also necessary to target specific groups because existing evidence suggests that one size does not fit all, and the involvement process needs to be tailored to meet the needs of specific target groups.

Approach

This study explores South Asian participants’ (especially people from Indian and Pakistani background) views and experiences of patient and public involvement (PPI), factors that influence their involvement in health research. A purposive maximum variation sampling was utilised to recruit South Asians with a range of participation and PPI experience in health research. Participants in North West England, between June and December 2015, were recruited via advertisements through University PPI mailing list, local Black and Minority Ethnic Group Network mailing list, North West People in Research Forum, contacting various community groups and researchers within the University who have previously worked with South Asian population. 27 participants agreed and semi-structured interviews were subsequently conducted either in participant homes or in a community setting. All interviews except for 5 interviews were recorded with consent. Audio recordings were transcribed verbatim. Data was analysed thematically using constant comparative techniques.

Findings

Lack of awareness of PPI opportunities, time and place of meeting, language, not being approached were some of the common barriers that may affect their capacity to get involved in health research. Factors such as altruism, nature of research, research topic, ethnicity of the researcher, financial benefits were perceived to influence their involvement in research. Participants also reported the importance of raising awareness within their community on the benefits of research and how their involvement or participation could potentially help others in future. Many participants described the need to build trust and confidence, so that people from their community felt empowered to get involved in research.

Consequences

This study provides insights into barriers and facilitators that influence the involvement of South Asian participants in health research. It is important to understand and consider these factors that influence South Asian involvement in research, as it will assist researchers in developing strategies to effectively involve South Asians in future research.