Objective To sort out the policies related to rare diseases in China, analyze and summarize the focus and potential problems of relevant policy texts, and provide decision-making references for the subsequent formulation and improvement of policies in the field of rare diseases in China. Methods We searched for relevant policy documents in the field of rare diseases at the national level from 2018 to 2023, constructed a three-dimensional analysis framework based on content analysis of “policy tool-stakeholder-policy strength” in the field of rare diseases in China, and conducted cross-analysis between policy tools, stakeholders, and policy strength. Results Finally, 39 policy texts were included. There were 112 policy tool dimension codes, with environment-based, supply-based, and demand-based tools accounting for 62.5%, 30.36%, and 7.14%, respectively. There were 229 stakeholder dimension codes, including 42.79% for government departments, 19.65% for medical institutions, 19.65% for corporate units, and 17.90% for patients and their families. The average score for policy strength was 2.2 points. Cross-analysis showed that government departments had the highest proportion in the dimensions of supply-based, environment-based and demand-based tools (45.76%, 43.45%, 32.00%, respectively). The policy strength of environmental tools was the strongest (124 points). The policy strength of government departments was the strongest (78 points). Conclusions There is a certain imbalance in the design and configuration of rare disease policy tools in China, and there is uneven distribution of rare disease policies among stakeholders. Although the overall effectiveness of policies in the field of rare diseases is showing a positive growth trend, there may be a mismatch between policy tools, stakeholders, and policy strength.
Tuberculosis (TB) is a major global public health issue. Although China has achieved remarkable results in TB prevention and control, it still faces challenges such as a large number of cases and difficulty in drug-resistant TB control, and the single prevention and control model can no longer adapt to the new situation. The concept of joint construction, joint governance and shared benefits provides a new idea for the comprehensive prevention and control of TB. Based on theories such as multiple stakeholders, this paper defines the definition and connotation of social co-governance for TB prevention and control, and proposes its implementation framework: optimizing the prevention and control service system, strengthening government leadership and consolidating the responsibilities of various departments; improving the integration model of medical treatment and prevention, cultivating interdisciplinary talents, and promoting information and resource sharing; activating the vitality of social organizations to play their role as bridges and material guarantees; and stimulating community potential to enhance public participation. The study holds that integrating the concept of social co-governance and implementing the four-party responsibilities can form a joint force in prevention and control, provide support for achieving the goal of ending TB epidemic, and help promote the construction of Healthy China and the modernization of national governance capacity.
