A Qualitative Study on Views and Perspectives of Non-Governmental Organisations on Implementation of Personalised Medicine in Cancer Patients

Abstract

Background: Personalised medicine (PM) has mainly involved the systematic use of genetic or other information about an individual patient to select or optimise that patient's preventative and therapeutic care. PM separates patients into different groups with medical decisions, practices, interventions and it aims to tailor disease prevention, diagnosis and treatment to individual patient based on their genes, lifestyle, environment, predicted response, risk or recurrence of disease. Molecular profiling in healthy and cancer patient samples may allow for a greater degree of personalised medicine than is currently available. Information about a patient's proteinaceous, genetic, and metabolic profile could be used to tailor medical care to that individual's needs. Non Governmental Organisation (NGOs) with government policies may potentially play an important role in the realisation of PM. This paper investigates the views and perspectives of NGOs on implementation of PM in cancer patients Methods: Personal interviews were taken, few over phone and by video conferencing among leading representatives of 56 NGOs working for the betterment of cancer patients and funded byWHOand UNICEF located in India and South East Asia. Their working principles, skills and agendas were discussed and the data collected were analysed using a conventional content analysis approach. Results: Modern personalised medicine takes into account an individual's genetic makeup and disease history before a treatment regimen is generated. This is in contrast to traditional personalised medicine, in which care is based on a patient's family history, social circumstances, environment, and lifestyle. The NGOs representatives feels that financial, structural and organisational challenges delay realisation of PM. They support policies to modernise drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. They emphasised the importance of developing PM in an equitable way and taking into consideration the patient's needs, values, social taboos and stigmas and personal situation. Due to low level of awareness regarding PM, the NGOs representatives feels the need of an infrastructure or organisation that engages policy makers and NGOs, to design PM in a way that truly addresses the needs and concerns of patients. Conclusions: NGOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between NGOs, researchers, drug developers and health care authorities. The current approaches to intellectual property rights, reimbursement policies, patient privacy and confidentiality as well as regulatory oversight will have to be redefined and restructured to accommodate the changes personalised medicine will bring to healthcare. Furthermore, the analysis of acquired diagnostic data is a recent challenge of personalised medicine and its adoption. In the future, adequate tools will be required to accelerate the adoption of personalised medicine to further fields of medicine, which requires the interdisciplinary cooperation of experts from specific fields of research, such as medicine, clinical oncology, biology, and artificial intelligence.