Exploring patient and public engagement in health policy and guidelines in South Africa: evidence from a scoping review
1
Health Systems Research Unit, South African Medical Research Council, Cape Town, South Africa
2
Division of Epidemiology and Biostatistics, Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa
Popul. Med. 2026;8(Supplement Supplement 1):A1859
ABSTRACT
INTRODUCTION:
Patient and public engagement (PPE) can support person-centred healthcare decision-making and improve trust and acceptance of decisions. Within South Africa’s National Health Insurance (NHI) reforms toward universal health coverage, identifying pathways for meaningful PPE in health system decision-making is essential. This scoping review synthesised the approaches, strategies and activities used to engage the public in health policy and guidelines and explored prioritised groups and the reported outcomes of PPE.
METHODS:
This review followed the methodological framework by Arksey and O’Malley (2005). We searched PubMed, CINAHL, and Scopus and we used ProQuest and Bielefeld Academic Search Engine to search for theses. Additional global community engagement databases were reviewed (for example, MESH; Participedia). No language restrictions were applied, and data were synthesised narratively.
RESULTS:
Eighteen studies were included. PPE primarily focused on obtaining patient feedback, while communities were often engaged in research about local needs and population-specific health priorities. Most approaches were consultative, using focus groups, interviews, discussions, or surveys, although some studies demonstrated collaboration (such as adolescent advisory groups). Most PPE had implications for research but did not shape policies and guidelines directly. Notably, most examples were research-oriented and only broadly related to guidelines and policies.
CONCLUSIONS:
While patient and public voices have been included within some health policy activities in South Africa, these contributions are largely limited to consultation rather than decision-making. Strengthening PPE within health decision-making could support a shift towards more equitable, person-centred health policies for the NHI, and enable empowerment among patients and the public. We recommend that PPE strategies should be co-created with patients and the public and utilised at both a consultative and decision-making level – in order to transform current health policy and guideline practices.
Patient and public engagement (PPE) can support person-centred healthcare decision-making and improve trust and acceptance of decisions. Within South Africa’s National Health Insurance (NHI) reforms toward universal health coverage, identifying pathways for meaningful PPE in health system decision-making is essential. This scoping review synthesised the approaches, strategies and activities used to engage the public in health policy and guidelines and explored prioritised groups and the reported outcomes of PPE.
METHODS:
This review followed the methodological framework by Arksey and O’Malley (2005). We searched PubMed, CINAHL, and Scopus and we used ProQuest and Bielefeld Academic Search Engine to search for theses. Additional global community engagement databases were reviewed (for example, MESH; Participedia). No language restrictions were applied, and data were synthesised narratively.
RESULTS:
Eighteen studies were included. PPE primarily focused on obtaining patient feedback, while communities were often engaged in research about local needs and population-specific health priorities. Most approaches were consultative, using focus groups, interviews, discussions, or surveys, although some studies demonstrated collaboration (such as adolescent advisory groups). Most PPE had implications for research but did not shape policies and guidelines directly. Notably, most examples were research-oriented and only broadly related to guidelines and policies.
CONCLUSIONS:
While patient and public voices have been included within some health policy activities in South Africa, these contributions are largely limited to consultation rather than decision-making. Strengthening PPE within health decision-making could support a shift towards more equitable, person-centred health policies for the NHI, and enable empowerment among patients and the public. We recommend that PPE strategies should be co-created with patients and the public and utilised at both a consultative and decision-making level – in order to transform current health policy and guideline practices.
| eISSN: | 2654-1459 |
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