![]() ![]() The value of collecting information which says a record belongs to a 38 year-old, white female residing in Washington, DC, more than offsets what may be perceived as "sensitive information," because it cannot be linked to a specific individual. In medical information, for example, there are patient demographics such as age, sex, race or geography essential to many important analyses, such as adjusting for age differences between patients which could skew outcomes. Where such data cannot fulfill those needs, informed consent of the data subject must be obtained.Īs noted previously, the benefits of certain data must be measured against the risk to privacy. These data are rendered anonymous by omitting elements, such as name, address, phone number, or social security number, which could identify a specific individual.Īnonymized patient-level data protect privacy and address many information needs of the health care community. ![]() Patient data contain personally identifiable information elements whereas patient-level data are medical information without the details that could identify the person to whom the data belong. This involves measuring what data place privacy at risk against the benefit afforded the data subject and determining whether the risk is acceptable.įor medical information, a key principle is the differentiation between patient-level data versus patient data. These steps, however, are largely pre-requisites to the equally important role of educating consumers, both generally and in specific instances where informed consent is an essential component.ĭefinition of Personally Identifiable DataĪn essential first step in any privacy discussion is understanding what information can be collected and the degree of privacy exposure in such data. ![]() There are many actions necessary to establish a responsible, secure, systematic approach to privacy protection. Such value can be achieved only in an environment where the public trusts that these sensitive data are handled responsibly, with no reasonable possibility of uninformed disclosure. For example, it provides a resource to identify best medical practices and help control costs. The collection of medical information touches on one of the most sensitive of all topics, yet it is essential to improving public health. Furthermore, the paper will address the collection of such information for the purpose of creating information databases, distinct from the activities of health care providers (e.g., physicians, hospitals, etc.) and payers (insurers, Health Care Finance Administration, etc.). Regardless, many of the principles discussed are applicable to any personally identifiable information. and in six European countries, the latter of which all have existing omnibus data protection laws.Īs IMS' experience and expertise are in the health care arena specifically, the focus of this paper will be issues surrounding medical information. ![]() These patient-level data are collected in the U.S. It is one of many companies developing complex, patient-level databases to address the needs of the medical, scientific, and health care management community with issues related to outcomes research, best practices and health economics. Also, the company tracks disease incidences and physician treatment patterns, which entails using doctor-level panels and, more recently, computerized medical information. Some of IMS' business activities include tracking the prescription activities of physicians and the sale of pharmaceutical products. 1 In the U.S., alone, over 72 billion records are processed monthly. IMS is the world's largest provider of health information services, with data collection activities in over 80 countries. Vice President, Marketing & Business Development The Necessary Elements Of Self-Regulatory Privacy Regimes And The Role Of Consumer Education In A Self-Regulatory Privacy Regime The Canadian Standards Association Model Code for the Protection of Personal Information: Reaching Consensus on Principles and Developing Enforcement Mechanisms Resolving Privacy Disputes Through Arbitrationĭ. The Role of Consumer Education in a Self-regulatory Privacy RegimeĬ. The Necessary Elements of Self-regulatory Regimes and the Role of Consumer Educationī. ![]()
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