NHIF Bulgaria: Individually Approved Medicines under Ordinance №2 (Ex-Children's Fund)

📊 Dataset Description Title:NHIF Bulgaria: Individually Approved Medicines under Ordinance №2 (Ex-Children’s Fund) Summary:This dataset contains records of individually funded pharmaceutical treatments under Ordinance №2 /27.03.2019 of the Ministry of Health in Bulgaria, previously known as the “Children’s Fund.” These are exception-based therapies provided outside the Positive Drug List (PDL) following a formal process of individual request, clinical justification, expert assessment, price negotiation, and decision by NHIF or the Ministry of Health. The treatments included are often high-cost, rare-disease, or pediatric medicines that fall outside the standard reimbursement frameworks (KP/APR or regular outpatient reimbursements). Key Characteristics: Each record represents a patient-specific approval for a given therapy. Medications may be off-label, not included in the PDL, or imported via special channels. The dataset includes pediatric patients The data was shared upon formal request by the author to the NHIF and released with Decision № РД-19-219 on 10.05.2024. ⚠️ Important Note on the name Field: The name field contains unstructured entries that require further cleaning and parsing for analysis: Some records include multiple medicines per entry (e.g., "arsenic trioxide phebra 1mg., vesanoid 10 mg - 100br.") There is variation in languages — some entries are in Bulgarian, others in English or in Latin (English transliterations) Many entries contain both market names and INNs (e.g., "spinraza (inn nusinersen)") Strings vary in language, formatting, and delimiter usage, making grouping or classification challenging 👉 Recommendation: Perform additional cleaning using regular expressions or named-entity parsing to extract structured medicine names for research or aggregation purposes. Structure: 📦 Rows: 2,485 📁 Columns: 7 📆 Period: May 2019 – april 2024 🌍 Coverage: National (all NHIF regions) Variables: Variable Description date Date of funding approval for the treatment name Name(s) of medicine(s) – may include INN, market name, or both costs Total expenditure approved for the treatment (in BGN) age Age of the patient at treatment date (years) birth_date Date of birth of the patient gender Gender of the patient (male, female) region Region of birth (e.g., Sofia City, Haskovo, etc.) Analytical Opportunities: Monitoring of rare disease treatment access Estimating budget impact of high-cost individual therapies Identifying age-specific and regional access trends Classifying frequently prescribed non-PDL therapies Supporting policy evaluations and HTA modelling Source:National Health Insurance Fund (NHIF), Bulgariahttps://www.nhif.bg/ License:Unless otherwise stated: Creative Commons Attribution 4.0 International (CC BY 4.0)📊 数据集说明 标题：保加利亚国家健康保险基金（National Health Insurance Fund, NHIF）：第2号法令项下的个人获批药品（原儿童基金项目） 摘要：本数据集收录保加利亚卫生部2019年3月27日发布的第2号法令规定的个人资助药物治疗记录，该项目前身为“儿童基金”。此类疗法属于未纳入标准阳性药品目录（Positive Drug List, PDL）的例外治疗，需通过正式流程完成个人申请、临床依据提交、专家评估、价格议价，并由NHIF或卫生部作出最终审批决定。 所纳入的治疗方案多为高成本、罕见病或儿科用药，超出常规报销框架（KP/APR或普通门诊报销范畴）。 关键特征： - 每条记录对应针对特定患者的单一项治疗方案获批信息 - 药品可能属于超适应症用药、未纳入PDL，或通过特殊渠道进口 - 数据集涵盖儿科患者群体 - 本数据集由作者向NHIF正式申请后获取，并依据2024年5月10日第РД-19-219号决议发布 ⚠️ 关于“名称”字段的重要说明： 名称字段包含非结构化条目，需进一步清洗与解析方可用于分析： - 部分单条记录包含多种药品（例如："三氧化二砷 phebra 1mg.、维A酸 vesanoid 10mg - 100片"） - 语言存在差异——部分条目使用保加利亚语，部分使用英语或拉丁化（英语音译）表述 - 多数条目同时包含商品名与国际非专利名称（International Nonproprietary Name, INN），例如"Spinraza（通用名 nusinersen）" - 字符串的语言类型、格式规范与分隔符使用均存在差异，给数据分组与分类工作带来较大挑战 👉 建议：通过正则表达式或命名实体解析开展额外清洗工作，以提取结构化药品名称，用于后续研究或数据聚合分析 数据集结构： 📦 记录数：2485 📁 字段数：7 📆 时间范围：2019年5月 – 2024年4月 🌍 覆盖范围：全国（覆盖NHIF所有辖区） 变量说明： | 变量 | 说明 | | ---- | ---- | | date | 该治疗方案的资助获批日期 | | name | 药品名称，可包含INN、商品名或两者兼具 | | costs | 获批的该治疗方案总支出（单位：保加利亚列弗BGN） | | age | 患者接受治疗时的年龄（单位：岁） | | birth_date | 患者出生日期 | | gender | 患者性别（男、女） | | region | 患者出生地（例如：索非亚市、哈斯科沃等） | 分析应用场景： - 监测罕见病治疗可及性 - 评估高成本个人疗法的预算影响 - 识别特定年龄与区域的可及性趋势 - 对非PDL的高频处方疗法进行分类 - 为政策评估与健康技术评估（Health Technology Assessment, HTA）建模提供支持 数据来源：保加利亚国家健康保险基金（NHIF），官网：https://www.nhif.bg/ 许可协议：除非另有说明，采用知识共享署名4.0国际许可（Creative Commons Attribution 4.0 International, CC BY 4.0）