Patient organizations involvement in healthcare: a rapid review and conceptual framework

Abstract Background Patient organizations have become increasingly influential in the healthcare sector, offering unique insights into unmet health needs, disease impact, and patients’ quality of life. These groups have evolved from advocates for access to treatment, as seen during the HIV/AIDS crisis, to active participants in the research and policy-making processes. Despite growing recognition of their critical role, a comprehensive understanding of their interactions with various healthcare actors remains limited. Main body This rapid review aims to map the landscape of patient organization involvement in healthcare, particularly in high-income settings. We conducted a systematic search of MEDLINE, focusing on literature published between 2000 and 2024, and identified 61 relevant articles. The analysis revealed that patient organizations interact with a range of actors, including pharmaceutical companies, healthcare professionals, payers, health technology assessment bodies, and regulatory agencies. Key themes were identified around conflicts of interest, especially with regards to the pharmaceutical industry, where concerns about transparency and independence were prevalent. The review also highlighted the vital role patient organizations play in research and development, regulatory approval processes, and reimbursement decisions. The conceptual framework developed from this review outlines these interactions across the pharmaceutical lifecycle, emphasizing the varied and significant contributions of patient organizations. Conclusion This review underscores the need for more transparency and meaningful engagement of patient organizations in healthcare decision-making. While their involvement has been primarily studied in the context of pharmaceutical industry relations, further research is needed to explore their interactions with other relevant actors. Addressing funding challenges and expanding research beyond well-studied regions are crucial for fully understanding and optimizing the role of patient organizations in healthcare. Clinical trial number Not applicable.