Increasing Engagement for Breast Cancer Screening and Treatment: The “ICANTREAT” Community of Expertise Initiative

Abstract

Background: Incidence of breast cancer and associated mortality are on the rise globally. Breast cancer incidence in India is on the rise and also accounts for a staggering 50% mortality rate among women. Health illiteracy, socio-economic and cultural barriers in addition to lack of an organized nationwide screening and prevention programme contribute to poor patient outcomes. Thus, it is imperative to strengthen the existing screening and treatment facilities to address the increasing cancer burden. In this regard, we conducted a workshop to investigate the scope of a multi- stakeholder engagement in breast cancer screening and treatment. Methods: A stakeholder workshop grounded in an established co-design methodology was convened in a semi-urban coastal district in South India with active participation of physicians, surgeons, occupational therapists, community leaders, programme officers, public health professionals and breast cancer survivors. Shiffman and Smith’s framework was adapted to highlight barriers to screening and role of stakeholders in the co-design of solutions. Results: Deliberate and active discussions marked the workshop proceedings resulting in the identification of individual and systems level barriers, facilitators and implementation strategies. Social stigma and non-existent standard protocols for screening and referral were recognised as critical barriers, while community engagement and a dedicated patient advocate were the proposed facilitators. Conclusion: This workshop was an important step in bringing together key stakeholders and marked the beginning of the ICANTREAT initiative and a Community of Expertise. The outcomes highlight the importance of stakeholder involvement in the cancer-care pathway for breast cancer screening, diagnosis and treatment.