The impact of informal patient navigation initiatives on patient empowerment and National Health Insurance responsiveness in Indonesia

Background Indonesia introduced a universal National Health Insurance (NHI) programme Jaminan Kesehatan Nasional (JKN) in 2014. However, challenges in timely consultation and access to health services resulted in the introduction of formal and informal patient navigation initiatives which facilitates access for patients. Informal patient navigation may emerge from the gaps in the services of the formal patient navigation. This study assesses how three informal non-government patient navigation initiatives emerged, are organised, operate and interact with JKN authorities to enhance patient empowerment and JKN responsiveness. Methods This was a qualitative study comprising of document review, semi-structured interviews with key stakeholders and direct observations at JKN-contracted health facilities. Data was analysed deductively and inductively using Molyneux et al ’s accountability assessment framework to assess context, content, and process of the informal patient navigation initiatives. Results Our study found that informal patient navigation initiatives bridge a gap left by formal navigation initiatives. The navigators help spread awareness among patients of their benefits and entitlements and assist patients to communicate with health providers and authorities. However, we find limited effects on people’s ability to navigate the system themselves, on systemic change, or on JKN responsiveness. Conclusion We may know that when access to health services is challenged then formal or informal patient navigation initiatives to facilitate access for patients may emerge. What this study adds is how informal patient navigation bridge a gap left by formal navigation initiatives, from how they are organized, operate and interact with the NHI authorities. We demonstrate that in the absence of well-functioning formal navigation initiatives, the informal initiatives may fill a critical gap. However, their efforts are time intensive and do not translate across the population. What is implied here is that more is required from JKN authorities to enhance interaction with informal patient navigation to advance systemic change toward equitable access to NHI.