【作者】 李秀丽；

【导师】 王希华；

【作者基本信息】 中国科学技术大学 ， 传媒管理， 2009， 硕士

【摘要】 罕见病(Rare Disease)一般是指受累人数占总人口的比例在0.651%—1%以下的疾病或病变。由于诊断困难,治疗上无选择余地,有时还可能由于遗传和预后涉及的伦理问题等原因,一直是医学界面对的难题。虽然罕见病比例小,但是中国人口基数大,病患绝对数不少,而且随着家庭结构越来越简单,罕见病,尤其是严重威胁生命或慢性消耗性疾病和容易致残的疾病对家庭和社会的负担相当严重。此外,研究罕见病还可以提高中国的医药研制与病患治疗水平,因而,重视与解决罕见病问题势在必行。罕用药研发主要面对两方面的困难,一方面是病患人数少,商业价值有限,另一方面是病例不足。经济效益方面可以通过国家政策的优惠等改善,而通过信息传播平台,对患者、医药研制机构与医疗机构等的集合则可以在解决病例不足的同时,在一定程度上缓解经济效益的困境。本论文引入长尾理论的思维模式,借鉴信息传播理论,并理论联系实际,探讨了罕见病信息传播模式的建立以及实施。通过该信息传播平台,将政府角色、医药研制机构、医疗机构以及患者和公众联系起来,共同形成信息传播的五大力量。在该五大力量的共同作用下,使得医药研制机构与医疗机构都有尽可能多的样本对罕见病进行研究,从而在患者能够在更大的概率上得到康复的希望的同时,提升中国医药的研制水平与医疗水平。建立信息传播模式,还需要对该平台上的各大力量,根据其初始状态以及在平台上的活跃度以及贡献,设置不同的影响因子,从而进行相关权限的限制,以保证资料的保密性。不仅如此,在该平台所有的资料共享中,都需要按照同样的标准格式,从而更加利于信息的检索与传播交流。本论文在上述研究的基础上,还建立了信息传播模式图以及信息传播平台实现的步骤。更多还原

【Abstract】 A rare disease is usually considered to be one that affects not more than 650 to 1000 people per million persons. Difficulties as a result of the diagnosis, treatment no choice, in some cases, the prognosis may be due to genetic and ethical issues or related to other reasons, rare disease has been the interface of medical problems. Although rare disease has a small proportion, a large population base in China, the absolute number is not small, and with the family structure is more and more simple, a rare disease, in particular, a serious life-threatening or chronic wasting disease and the diseases easily disabled is a serious burden on the family and society. In addition, the study of rare diseases can also enhance the development of medicine treatment and medical treatment in China, therefore, attaches great importance and resolve the issue of a rare disease is imperative.The main difficulties of Orphan Drug Research and Development is by both sides, on the one hand, the small number of patients, limited commercial value, on the other hand, insufficient cases. Cost-effectiveness may be ignored because of national policy, the congregation of patients, medicine institutions and medical institutions through information dissemination platform can resolve the inadequate of patients, at the same time, to some extent, alleviate the economic plight.In this paper, the main theory are the long tail and information dissemination. the platform will be a aggregator of government, medicine research & development institutions, medical institutions and patients & public. These forces will promote Chinese medicine institutions and medical institutions as having possible number of samples of a rare disease, and the patient can be a greater probability of recovery.The establishment of information dissemination platform also needs give different permission to the major forces, according to their initial states, the activity as well as the contribution in the platform, in order to limit the relevant authority to ensure the confidentiality of information . Not only that, but all of the information sharing in the platform need to follow the same standard format, thus more conducive to the retrieval and dissemination of information exchange. this paper established a pattern of information dissemination and information dissemination platform steps.更多还原