Tears and Cheers - Preliminary Legal Analysis on Patient Groups in China

Abstract

Patient groups, also known as patient organizations, are non-profit organizations which focus on the interests of majority patients with a particular disease or condition. The roles and activities of patient groups have been quickly evolving in the past 80 years, from sharing experience on a specific disease at the beginning, to mutual peer-support in the 1940s and 50s, and then patient advocacy to lobby better access to medication from 1980s. In the recent years, the value of patient groups in shaping healthcare system has been gradually recognized and respected by policy makers and pharmaceutical companies. Patient groups play increasing significant roles in various areas by sharing information about living with their conditions, raising awareness and attention of certain diseases (especially the rare diseases) to the society, offering mutual support on daily caring and support tools, advocating and safeguarding the rights and interests of its majority members. For pharmaceutical companies, patient groups could give collective voices on the real world experiences of a disease and relative diagnoses, treatment and medical products; and therefore to guide pharmaceutical companies for new drug research and development. As a result, it’s common to see partnership programs between pharmaceutical companies and patient groups and dedicated functions to look after the relationship with patient groups in the pharmaceutical industry.