Fair Information Practice Principles Research Articles

Privacy Harm and Non-Compliance from a Legal Perspective

In today's data-sharing paradigm, personal data has become a valuable resource that intensifies the risk of unauthorized access and data breach. Increased data mining techniques used to analyze big data have posed significant risks to data security and privacy. Consequently, data breaches are a significant threat to individual privacy. Privacy is a multifaceted concept covering many areas, including the right to access, erasure, and rectify personal data. This paper explores the legal aspects of privacy harm and how they transform into legal action. Privacy harm is the negative impact to an individual as a result of the unauthorized release, gathering, distillation, or expropriation of personal information. Privacy Enhancing Technologies (PETs) emerged as a solution to address data privacy issues and minimize the risk of privacy harm. It is essential to implement privacy enhancement mechanisms to protect Personally Identifiable Information (PII) from unlawful use or access. FIPPs (Fair Information Practice Principles), based on the 1973 Code of Fair Information Practice (CFIP), and the Organization for Economic Cooperation and Development (OECD), are a collection of widely accepted, influential US codes that agencies use when evaluating information systems, processes, programs, and activities affecting individual privacy. Regulatory compliance places a responsibility on organizations to follow best practices to ensure the protection of individual data privacy rights. This paper will focus on FIPPs, relevance to US state privacy laws, their influence on OECD, and reference to the EU General Data Processing Regulation. (GDPR).

A Design Theory for Transparency of Information Privacy Practices

Public policy initiatives demand transparency of information privacy practices (TIPP) since the 1970s, at least, when a first version of the fair information practice principles (FIPP) was published. Decades later, information system (IS) providers are still struggling to meet this demand. Apparently, there is a tension between socially desirable guardrails for privacy practices (e.g., allowing for anonymity) and economic value creation (e.g., exploiting personalization surplus). To inform IS designs that can change such avaricious states to the benefit of consumers, we present a theoretical foundation (TIPP theory) explaining and prescribing what needs to be built to establish TIPP in the real world. On the one hand, TIPP theory explains why IS providers, who have privacy practices to hide, should not go beyond IS designs that meet legal demands. More importantly, TIPP theory explains and prescribes what IS providers need to build to actually establish TIPP and be able to differentiate from competitors by doing so. TIPP theory will be useful for all involved parties: IS providers are enabled to avoid privacy notice fallacies, public policy makers can give more details in their related guidance and laws published, and consumers can, ultimately, interact with IS that actually establish TIPP.

How to protect privacy in a datafied society? A presentation of multiple legal and conceptual approaches

The United Nations confirmed that privacy remains a human right in the digital age, but our daily digital experiences and seemingly ever-increasing amounts of data suggest that privacy is a mundane, distributed and technologically mediated concept. This article explores privacy by mapping out different legal and conceptual approaches to privacy protection in the context of datafication. It provides an essential starting point to explore the entwinement of technological, ethical and regulatory dynamics. It clarifies why each of the presented approaches emphasises particular aspects and analyses the tensions that arise. The resulting overview provides insight into the main strengths and limitations of the different approaches arising from specific traditions. This analytic overview therefore serves as a key resource to analyse the usefulness of the approaches in the context of the increasing datafication of both private and public spheres.Specifically, we contrast the approach focusing on data subjects whose data are being ‘protected’ with others, including Fair Information Practice Principles, the German right to ‘informational self-determination’, and the South American ‘habeas data’ doctrine. We also present and contrast emerging approaches to privacy (differential privacy, contextual integrity, group privacy) and discuss their intersection with datafication. In conclusion, we put forth that rather than aiming for one single solution that works worldwide and across all situations, it is essential to identify synergies and stumbling blocks between the various regulatory settings and newly emerging approaches.

Data privacy and residential smart meters: Comparative analysis and harmonization potential

Building on privacy principles of the Fair Information Practice Principles and the European Union's General Data Protection Regulation, the study compares national policies and programs in Europe and North America and identifies prevailing practices for implementing privacy goals for residential energy customers: customer opt-out policies, sampling and sharing guidelines, independent data storage, and governmental enforcement authority. The analysis provides the basis for privacy standards that could apply to advanced-metering customer data across countries, even with rapidly evolving technology.

An information privacy culture instrument to measure consumer privacy expectations and confidence

PurposeThis paper aims to propose an information privacy culture index framework (IPCIF) with a validated information privacy culture index instrument (IPCII) to measure information privacy culture across nations. The framework is based on consumers’ privacy expectations, their actual experiences when organisations process their personal information and their general privacy concerns.Design/methodology/approachA survey method was deployed to collect data in South Africa – the first participating country in the study – to start building a global information privacy culture index (IPCI) and to validate the questionnaire.FindingsThe IPCI revealed that there seems to be a disconnect between what consumers expect in terms of privacy and the way in which organisations are honouring (or failing to honour) those expectations, which results in a breach of trust and the social contract being violated.Practical implicationsGovernments, information regulators and organisations can leverage the results of the privacy culture index to implement corrective actions and controls aimed at addressing the gaps identified from a consumer and compliance perspective. The validated IPCII can be used by both academia and industry to measure the information privacy culture of an institution, organisation or country to identify what to improve to address consumer privacy expectations and concerns.Originality/valueThe IPCIF and validated IPCII are the first tools that combine the concepts of consumer expectations and their confidence levels in whether organisations are meeting their privacy expectations, which are in line with the fair information practice principles and the privacy guidelines of the Organisation for Economic Cooperation and Development, to determine gaps and define improvement plans.

The role of privacy policy on consumers’ perceived privacy

With today's big data and analytics capability, access to consumer data provides competitive advantage. Analysis of consumers' transactional data helps organizations to understand customer behaviors and preferences. However, prior to capitalizing on the data, organizations ought to have effective plans for addressing consumers' privacy concerns because violation of consumer privacy brings long-term reputational damage. This paper proposes and tests a Privacy Boundary Management Model, explaining how consumers formulate and manage their privacy boundary. It also analyzes the effect of the five dimensions of privacy policy (Fair Information Practices) on privacy boundary formation to assess how customers link these dimensions to the effectiveness of privacy policy. Survey data was collected from 363 customers who have used online banking websites for a minimum of six months. Partial Least Square results showed that the validated research model accounts for high variance in perceived privacy. Four elements of the Fair Information Practice Principles (access, notice, security, and enforcement) have significant impact on perceived effectiveness of privacy policy. Perceived effectiveness in turn significantly influences perceived privacy control and perceived privacy risk. Perceived privacy control significantly influences trust and perceived privacy. Perceived privacy concern and trust also significantly influence perceived privacy.

The false prometheus

In the information society of today, privacy is a premium service and user-related information a commodity. This development has gone unnoticed for many, but for some it contradicts with their common sense and perception of right and wrong. If we look into user agreements, and the effect Fair Information Practice Principles (FIPPs) seem to have, this development is particularly evident. One-on-one agreements such as End User License Agreements (EULAs) between the providers and users have become ubiquitous to most users who simply scroll through the agreement and click 'I agree' without actually understanding or caring what they have accepted. There are various reasons for this kind of behavior ranging from complete indifference, to inadequate internet and technology literacy, and even to peer pressure as certain applications have become a 'must have' amongst a group of users. This problem is particularly current as personal mobile devices have become important, for some even inseparable, part of our daily lives. These devices, such as smart phones and tablets, have also become user-centered aggregation points of information that contain personal, even sensitive information about us, and those around us. At the same time, the number of different applications that have practically unrestrained access to the Internet, is on the rise. When combined with ignorance and negligence, the risk of placing personal information into wrong hands is a very real one. In the following, we focus on this well-explored challenge from a novel perspective---informed consent---and argue that one way to address this problem is to develop solutions that not only promote personal choice and awareness, but are also context-dependent. In order to provide a practical insight into our primarily conceptual work, we use one of the most popular applications, the Pokémon GO by Niantic Inc., in highlighting some of the encountered privacy-related issues.

Curing Administrative Search Decay

The entry of technology companies like Uber and Airbnb into highly regulated markets such as transportation and housing means that more data on individuals than ever is being transferred from private companies to the government, under the guise of regulatory oversight. The administrative search doctrine — an exception to the Fourth Amendment warrant requirement that allows for warrantless searches for regulatory purposes — would appear at first glance to support these requests. However, this Article argues that regulatory searches that collect data from companies are radically different in scope than historical administrative searches. These searches can collect much more sensitive data about individuals than ever before, including detailed location data, financial information, and personally identifiable information. Regulatory requirements that fall under the administrative search doctrine can easily be overbroad, allowing for collection without meaningful limitations and few restrictions on subsequent uses. Without substantial reform, the current administrative search doctrine makes little sense in the modern era. In Part I, the Article analyzes the historical justifications for regulatory searches and describes why they are insufficiently specific for the modern era. It explores how the administrative search doctrine has evolved to allow for more expansive searches, and how the third-party doctrine means that only businesses can assert the rights over the data collected by the government, even if that data concerns information about individuals. The risks of over-collection, data breaches, and improper users are significant. Part II discusses existing critiques and proposes a modification to the administrative search doctrine, using a narrow tailoring principle, but also notes the challenges and shortcomings to a legal solution. Part III closes by offering a policy solution using a model based on the Fair Information Practice Principles (FIPPs). This model provides better clarity to the administrative search doctrine promulgated by the courts, allowing for more effective balancing of regulatory interests alongside the privacy rights of individuals. The sensitivity of our data means that the current system cannot endure any longer.

Measuring Privacy: an Empirical Test Using Context to Expose Confounding Variables

It is commonplace for those who support less restrictive privacy regulation on the collection and use of personal information to point out a paradox: in survey after survey, respondents express deep concern for privacy, oppose growing surveillance and data practices, and object to online tracking and behavioral advertising. Yet when confronted with actual choices involving the capture or exchange of information, few people demonstrate restraint: we sign up for frequent flyer and frequent buyer programs; we are carefree in our use of social networks and mobile apps; and we blithely hop from one website to the next, filling out forms, providing feedback, and contributing ratings. Privacy skeptics suggest that actions should be considered a truer indicator than words. Even if people are honest in their positive valuation of privacy in surveys, in action and behavior, they reveal even greater valuation of those benefits that might come at a privacy cost. In other words, people care about privacy, but not that much. The inconsistencies between survey responses and observed behaviors that skeptics gleefully observe require a nuanced interpretation—one that we have offered through our studies. We argue that the disconnect between actions and survey findings is not because people do not care about privacy, but because individuals’ actions are finely modulated to contextual variables. Questions in surveys that do not include such important contextual variables explicitly are highly ambiguous. A more nuanced view of privacy is able to explain away a great deal of what skeptics claim is a divergence of behavior from stated preference and opinion. People care about and value privacy—privacy defined as respecting the appropriate norms of information flow for a given context. When respondents are given a chance to offer more fine-grained judgments about specific informationsharing situations, these judgments are quite nuanced. This is problematic since public policy relies on survey measurements of privacy concerns—such as Alan Westin’s measurement of individuals as privacy ‘pragmatists’ or ‘unconcerned’— to drive privacy regulations. Specifically, Westin’s categories give credence to the regulation of privacy based by Fair Information Practice Principles (FIPPs), which relies heavily on assuring individuals notice and choice. We examine two historically influential measurements of privacy that have shaped discussion about public views and sentiments as well as practices, regulations, and policies: (1) surveys of individuals’ ratings of ‘sensitive’ information and (2) Alan Westin’s privacy categorization of individuals as fundamentalists, pragmatists, and unconcerned. In addition to replicating key components in these two survey streams, we used a factorial vignette survey to identify important contextual elements driving privacy expectations. A sample of 569 respondents rated how a series of vignettes, in which contextual elements of data recipient and data use had been systematically varied, met their privacy expectations. We find, first, that how well sensitive information meets privacy expectations is highly dependent on these contextual elements. Second, Westin’s privacy categories proved relatively unimportant in relation to contextual elements in privacy judgments. Even privacy ‘unconcerned’ respondents rated the vignettes as not meeting privacy expectations on average, and respondents across categories had a common vision of what constitutes a privacy violation. This study has important implications for public policy and research. For public policy, these results suggest that relying on one dimension—sensitive information or Westin’s privacy categorization of respondents—is limiting. In particular, focusing on differences in privacy expectations across consumers obscures the common vision of what is appropriate use of information for consumers. This paper has significant public policy implications for the reliance on consumer choice as a necessary approach to accommodate consumer variance: our results suggest consumers agree as to the inappropriate use of information. Our study has called privacy concepts into question by showing that ‘sensitivity’ of information and ‘concern’ about privacy are not stable in the face of confounding variables: privacy categories and sensitivity labels prove to be highly influenced by the context and use of the situation. Our work demonstrates the importance of teasing out confounding variables in these historically influential studies.

The False Prometheus: Customer Choice, Smart Devices and Trust

In the information society of today, privacy is a premium service and user-related information a commodity. This development has gone unnoticed for many, but for some it contradicts with their common sense and perception of right and wrong. If we look into user agreements, and the effect Fair Information Practice Principles (FIPPs) seem to have, this development is particularly evident. One-on-one agreements such as End User License Agreements (EULAs) between the providers and users have become ubiquitous to most users who simply scroll through the agreement and click ‘I agree’ without actually understanding or caring what they have accepted.There are various reasons for this kind of behavior ranging from complete indifference, to inadequate internet and technology literacy, and even to peer pressure as certain applications have become a ‘must have’ amongst a group of users. This problem is particularly current as personal mobile devices have become important, for some even inseparable, part of our daily lives. These devices, such as smart phones and tablets, have also become user-centered aggregation points of information that contain personal, even sensitive information about us, and those around us. At the same time, the number of different applications that have practically unrestrained access to the Internet, is on the rise.When combined with ignorance and negligence, the risk of placing personal information into wrong hands is a very real one. In the following, we focus on this well-explored challenge from a novel perspective; informed consent, and argue that one way to address this problem is to develop solutions that not only promote personal choice and awareness, but are also context-dependent. In order to provide a practical insight into our primarily conceptual work, we use one of the most popular applications, the Pokémon GO by Niantic Inc., in highlighting some of the encountered privacy-related issues.

A Context-Driven Rethink of the Fair Information Practice Principles

The Internet of Things (IoT) promises to transform the way we live and work. Intelligent devices, connected to each other and to the network, will provide platforms for new applications and services that are expected to enhance the efficiency and security of our homes, promote the effective distribution of energy, tailor educational opportunities to the needs of individual students, and improve the safety and security our infrastructure and highways. The technical implementation of the IoT will require the deployment of a wide array of sensors and systems that enable the collection, analysis, and sharing of new types of data. To fully realize the IoT’s promise, it is necessary to create an environment in which individuals trust that these innovative technologies are deployed in a protected, privacy-respectful way.Although Fair Information Practice Principles (FIPPs) have long formed the basis for privacy protections, the IoT significantly challenges their effective application.This paper examines how the Fair Information Practices can be applied in IoT environments, to continue to serve as reliable, practical guidance for privacy. In this article, we consider how the implementation of the FIPPs in the IoT might be guided by the analytic privacy framework of Contextual Integrity, which locates principles of appropriate information flows within particular social contexts such as the “smart” home, the modern power grid, and intelligent highways.After briefly reviewing privacy challenges introduced by the IoT, we discuss the privacy framework of Contextual Integrity and consider how this framework could serve as a roadmap for flexibly applying the FIPPs to the deployment of the IoT. The paper does not address other issues related to privacy and IoT deployment such as, for example, government access to data collected and processed via the IoT, or the challenges of applying privacy across interconnected IoT eco-systems.As a case study, we explore one particular IoT solution in detail - smart home “aging-in-place” systems that support independent living for senior citizens. We first identify and describe the nature of the home elder care environment as a social context, considering how individuals’ expectations of appropriate data collection, analysis, and circulation are shaped by social norms related to appropriate information sharing. Building on these observations, we then demonstrate how individual FIPPs might be selectively emphasized or deemphasized to respond to information flow norms, and to preserve or enhance aspects of social contexts that people most value.

Too Much or Too Little? How Much Control Should Patients Have Over EHR Data?

Electronic health records (EHRs) have been promoted as a mechanism to overcome the fragmented healthcare system in the United States. The challenge that is being discussed is the rights of the patient to control the access to their EHRs' data and the needs of healthcare professionals to know health data to makethe best treatment decisions for their patients. The Federal Trade Commission has asked those who store consumer information to comply with the Fair Information Practice Principles. In the EHR context, these principles give the rights to the patient to control who can see their health data and what components of the data are restricted from view. Control is not limited to patients, as it also includes parents of adolescent children. We suggest that the ongoing policy discussion include consideration of the precise questions patients will be asked when a need for data sharing arises. Further, patients should understand the relative risks that they face, and the degree to which their decisions will (or will not) significantly reduce the risk of a data breach. As various approaches are considered, it is important to address the relative resource requirements and the associated costs of each option.

Giving patients control of their EHR data.

Giving patients control of their EHR data.

Provider responses to patients controlling access to their electronic health records: a prospective cohort study in primary care.

Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data. We designed a program that captures patients' preferences for provider access to an urban health system's EHR. Patients could allow or restrict providers' access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients' preferences. Providers could "break the glass" to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users "broke the glass," and surveyed providers about their experiences and opinions. Eight of nine eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program. Providers did not know which of their patients were enrolled, nor their preferences for accessing their EHRs. During the 6-month prospective study, 92 study patients (88 %) returned 261 times, during which providers viewed their EHRs 126 times (48 %). Providers "broke the glass" 102 times, 92 times for patients not in the study and ten times for six returning study patients, all of whom had restricted EHR access. Providers "broke the glass" for six (14 %) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p = 0.01). Although 54 % of providers agreed that patients should have control over who sees their EHR information, 58 % believed restricting EHR access could harm provider-patient relationships and 71 % felt quality of care would suffer. Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients' preferences to view hidden data. Providers believed that restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers' needs, and health care quality.

Designing a system for patients controlling providers' access to their electronic health records: organizational and technical challenges.

Electronic health records (EHRs) are proliferating, and financial incentives encourage their use. Applying Fair Information Practice principles to EHRs necessitates balancing patients' rights to control their personal information with providers' data needs to deliver safe, high-quality care. We describe the technical and organizational challenges faced in capturing patients' preferences for patient-controlled EHR access and applying those preferences to an existing EHR. We established an online system for capturing patients' preferences for who could view their EHRs (listing all participating clinic providers individually and categorically-physicians, nurses, other staff) and what data to redact (none, all, or by specific categories of sensitive data or patient age). We then modified existing data-viewing software serving a state-wide health information exchange and a large urban health system and its primary care clinics to allow patients' preferences to guide data displays to providers. Patients could allow or restrict data displays to all clinicians and staff in a demonstration primary care clinic, categories of providers (physicians, nurses, others), or individual providers. They could also restrict access to all EHR data or any or all of five categories of sensitive data (mental and reproductive health, sexually transmitted diseases, HIV/AIDS, and substance abuse) and for specific patient ages. The EHR viewer displayed data via reports, data flowsheets, and coded and free text data displayed by Google-like searches. Unless patients recorded restrictions, by default all requested data were displayed to all providers. Data patients wanted restricted were not displayed, with no indication they were redacted. Technical barriers prevented redacting restricted information in free textnotes. The program allowed providers to hit a "Break the Glass" button to override patients' restrictions, recording the date, time, and next screen viewed. Establishing patient-control over EHR data displays was complex and required ethical, clinical, database, and programming expertise and difficult choices to overcome technical and health system constraints. Assessing patients' preferences for access to their EHRs and applying them in clinical practice requires wide-ranging technical, clinical, and bioethical expertise, to make tough choices to overcome significant technical and organization challenges.

Consumer Cloud Robotics and the Fair Information Practice Principles: Recognizing the Challenges and Opportunities Ahead

Rapid technological innovation has made commercially accessible consumer robotics a reality. At the same time, individuals and organizations are turning to “the cloud” for more convenient and cost effective data storage and management. It seemed only inevitable that these two technologies would merge to create cloud robotics, “a new approach to robotics that takes advantage of the Internet as a resource for massively parallel computation and sharing of vast data resources.” By making robots lighter, cheaper, and more efficient, cloud robotics could be the catalyst for a mainstream consumer robotics marketplace. However, this new industry would join a host of modern consumer technologies that seem to have rapidly outpaced the legal and regulatory regimes implemented to protect consumers. Recently, consumer advocates and the tech industry have focused their attention on information privacy and security, and how to establish sufficient safeguards for the collection, retention, and dissemination of personal information while still allowing technologies to flourish. Underlying a majority of these proposals are a set of principles that address how personal information should be collected, used, retained, managed, and deleted, known as the Fair Information Practice Principles (FIPPs). This Article examines recent frameworks that articulate how to apply the FIPPs in a consumer setting, and dissects how these frameworks may affect the emergence of cloud-enabled domestic robots. By considering practical observations of how cloud robotics may emerge in a consumer marketplace regulated by the FIPPs, this research will help both the information privacy and robotics fields in beginning to address privacy and security challenges from a law and policy perspective, while also fostering collaboration between roboticists and privacy professionals alike.

Online Privacy Policy of the Thirty Dow Jones Corporations: Compliance with FTC Fair Information Practice Principles and Readability Assessment

INTRODUCTION Privacy policy in corporation's business refers to a statement or a legal document that discloses some or all of the ways a party gathers, uses, discloses, and manages a customer or client's personal data such as name, age, address, gender, email, etc. (Privacy Policy, 2012). While online privacy policy (or online privacy) emphasizes on the right or mandates of personal privacy concerning the storing, repurposing, providing to third-parties, and displaying of information pertaining to oneself via the Internet (Internet Privacy, 2012). In the age of the internet, sharing information, communication, and working through the internet, especially the flow of information between companies and customers has caused a growing concerns regarding online privacy policy. For example, Google, as one of the most popular search engine in the world, has a well-known reputation and vast of cooperation with third parties. However, an announcement from Maryland Attorney General Douglas Gansler and attorneys general from thirty-five other states indicated that Google had tracked people using computers and mobile devices based on its new privacy components (published on March first, 2012) such as searching history without opt-out choice for customers (Acohido, 2012). From customer's view a disclosed online privacy would satisfy customer's concerns letting her/him know what information the company collected, what information the company may share with third parties, and how the company may secure her/his information. As mentioned above, the new online privacy of Google revealed the information that Google has been tracking customer's information. Few customers would like to be monitored all the time by Google; however, customers would be like walking on the thin ice without notice if there was no online privacy. In 1998, the United States Federal Trade Commission (FTC) reported a study of online privacy concerns to Congress. In this report, FTC described a widely-accepted Fair Information Practice Principles (FIPs) of Notice, Choice, Access, and Security1 (Landesberg et al., 1998). And FTC also defined the Enforcement principle to provide sanctions for noncompliance as a critical component of any governmental or self-regulatory program to protect online privacy. STATEMENT OF THE PROBLEM In July 1997, FTC conducted a survey about consumer privacy on the World Wide Web. The survey includes six sample groups: 1) comprehensive, 2) health, 3) retail, 4) financial, 5) children, and 6) most popular. Only fourteen percent of all sites in the Comprehensive Sample (sample size = 674) posted any disclosure about privacy. Only seventy-one percent of all sites in Most Popular Sample (sample size = 111) have some type of information disclosure about privacy (Landesberg et al., 1998). Furthermore, a study by George Milne, Mary Culnan, and Henry Greene showed that online privacy has grown in length as well as declined in readability (Milne et al., 2006). Even though a company discloses its online privacy and complies with FIPs, the unreadable privacy is still impractical for customers. Few people would like to spend half an hour or even a couple of hours to read the online privacy notice, especially when she/he is shopping online. Therefore, FIPs compliance and improving readability seems to be more and more intensive in terms of current online privacy policy. Significance of the Project On March 30th 2012, Nicole Perlroth from the New York Times reported that approximately one million to three million Visa and MasterCard accounts were exposed at Global Payments. Credit card numbers as well as cardholders' personal information had been hacked when payments were processed. Nicole also mentioned this was the second breach already at Global Payments in the last twelve months. Additionally, Heartland Payment Systems disclosed a breach which caused 130 million credit card to be hacked during two years from 2007 to 2009 (Greenberg & Schwartz, 2012). …

Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders

There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.

Point/Counterpoint

The first article, "The Consequences of the Lack of Privacy in Today's Electronic Health Systems," by Deborah C. Peel, argues that because the public doesn't trust technology systems that prevent them from deciding who can see, use, or sell their health data, millions avoid treatment or hide information and suffer bad health outcomes. The second article, "Privacy and Security as Enabler, Not Barrier, to Responsible Health Data Uses," by Deven McGraw, states that trust in health technology will be enabled not by focusing disproportionately on patient consent but through robust policies that address all of the fair information practice principles.

Kids, Privacy, Free Speech & the Internet: Finding the Right Balance

In the field of Internet policy, 2011 has been the year of privacy. Congress has introduced six bills related to online privacy, and the Obama administration released two major reports recommending greater federal oversight of online markets. The Federal Trade Commission (FTC) appears poised to step up regulatory activity on this front. State-level activity is also percolating, led by California, which floated two major bills recently. These efforts would expand regulatory oversight of online activities in various ways. Some measures would institute Fair Information Practice Principles (FIPPS), governing the collection and use of personal information online. Others would limit some types data collection, ban certain data or advertising practices, or create new mechanisms to help consumers block online ad-targeting techniques. Another measure would mandate websites adopt a so-called Internet Eraser Button, which would allow users to purge unwanted personal information from online sites and services. Expansion of the Children's Privacy Protection Act of 1998 (COPPA), which already mandates certain online privacy protections for children under the age of 13, is also being considered. While well-intentioned, efforts to expand privacy regulation along these lines would cause a number of unintended consequences of both a legal and economic nature. In particular, expanding COPPA raises thorny issues about online free speech and anonymity. Ironically, it might also require more parental consent provisions. There are better ways to protect the privacy of children online than imposing burdensome new regulatory mandates on the Internet and online consumers. Education, empowerment, and targeted enforcement of unfair and deceptive practices represent the better way forward.