Dataset Information

Managing personal health information in distributed research network environments.

ABSTRACT:

Background

Studying rare outcomes, new interventions and diverse populations often requires collaborations across multiple health research partners. However, transferring healthcare research data from one institution to another can increase the risk of data privacy and security breaches.

Methods

A working group of multi-site research programmers evaluated the need for tools to support data security and data privacy. The group determined that data privacy support tools should: 1) allow for a range of allowable Protected Health Information (PHI); 2) clearly identify what type of data should be protected under the Health Insurance Portability and Accountability Act (HIPAA); and 3) help analysts identify which protected health information data elements are allowable in a given project and how they should be protected during data transfer. Based on these requirements we developed two performance support tools to support data programmers and site analysts in exchanging research data.

Results

The first tool, a workplan template, guides the lead programmer through effectively communicating the details of multi-site programming, including how to run the program, what output the program will create, and whether the output is expected to contain protected health information. The second performance support tool is a checklist that site analysts can use to ensure that multi-site program output conforms to expectations and does not contain protected health information beyond what is allowed under the multi-site research agreements.

Conclusions

Together the two tools create a formal multi-site programming workflow designed to reduce the chance of accidental PHI disclosure.

SUBMITTER: Bredfeldt CE

PROVIDER: S-EPMC3851487 | biostudies-literature | 2013 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Managing personal health information in distributed research network environments.

Bredfeldt Christine E CE Butani Amy L AL Pardee Roy R Hitz Paul P Padmanabhan Sandy S Saylor Gwyn G

BMC medical informatics and decision making 20131008

<h4>Background</h4>Studying rare outcomes, new interventions and diverse populations often requires collaborations across multiple health research partners. However, transferring healthcare research data from one institution to another can increase the risk of data privacy and security breaches.<h4>Methods</h4>A working group of multi-site research programmers evaluated the need for tools to support data security and data privacy. The group determined that data privacy support tools should: 1) a ...[more]

PMID: 24099117

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Project description:BackgroundPrivacy should be protected in medical data that include patient information. A distributed research network (DRN) is one of the challenges in privacy protection and in the encouragement of multi-institutional clinical research. A DRN standardizes multi-institutional data into a common structure and terminology called a common data model (CDM), and it only shares analysis results. It is necessary to measure how a DRN protects patient information privacy even without sharing data in practice.ObjectiveThis study aimed to quantify the privacy risk of a DRN by comparing different deidentification levels focusing on personal health identifiers (PHIs) and quasi-identifiers (QIs).MethodsWe detected PHIs and QIs in an Observational Medical Outcomes Partnership (OMOP) CDM as threatening privacy, based on 18 Health Insurance Portability and Accountability Act of 1996 (HIPPA) identifiers and previous studies. To compare the privacy risk according to the different privacy policies, we generated limited and safe harbor data sets based on 16 PHIs and 12 QIs as threatening privacy from the Synthetic Public Use File 5 Percent (SynPUF5PCT) data set, which is a public data set of the OMOP CDM. With minimum cell size and equivalence class methods, we measured the privacy risk reduction with a trust differential gap obtained by comparing the two data sets. We also measured the gap in randomly sampled records from the two data sets to adjust the number of PHI or QI records.ResultsThe gaps averaged 31.448% and 73.798% for PHIs and QIs, respectively, with a minimum cell size of one, which represents a unique record in a data set. Among PHIs, the national provider identifier had the highest gap of 71.236% (71.244% and 0.007% in the limited and safe harbor data sets, respectively). The maximum size of the equivalence class, which has the largest size of an indistinguishable set of records, averaged 771. In 1000 random samples of PHIs, Device_exposure_start_date had the highest gap of 33.730% (87.705% and 53.975% in the data sets). Among QIs, Death had the highest gap of 99.212% (99.997% and 0.784% in the data sets). In 1000, 10,000, and 100,000 random samples of QIs, Device_treatment had the highest gaps of 12.980% (99.980% and 87.000% in the data sets), 60.118% (99.831% and 39.713%), and 93.597% (98.805% and 5.207%), respectively, and in 1 million random samples, Death had the highest gap of 99.063% (99.998% and 0.934% in the data sets).ConclusionsIn this study, we verified and quantified the privacy risk of PHIs and QIs in the DRN. Although this study used limited PHIs and QIs for verification, the privacy limitations found in this study could be used as a quality measurement index for deidentification of multi-institutional collaboration research, thereby increasing DRN safety.

Project description:BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.

Project description:BackgroundOlder adults face growing health care needs and could potentially benefit from personal health information management (PHIM) and PHIM technology. To ensure effective PHIM and to provide supportive tools, it is crucial to investigate the needs, challenges, processes, and tools used by this subpopulation. The literature on PHIM by older adults, however, remains scattered and has not provided a clear picture of what we know about the elements that play a role in older adults' PHIM.ObjectiveThe goal of our review was to provide a comprehensive overview of extant knowledge on PHIM by older adults, establish the status quo of research on this topic, and identify research gaps.MethodsWe carried out a scoping review of the literature from 1998 to 2020, which followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) framework. First, we executed a broad and structured search. We then carried out a qualitative analysis of papers pertinent to the topic taking into consideration the five elements of the patient work system as follows: (1) personal-level factors, (2) PHIM tasks, (3) tools used, (4) physical settings of PHIM activities, and (5) socio-organizational aspects.ResultsThe review included 22 studies. Consolidated empirical evidence was related to all elements of the patient work system. Multiple personal factors affected PHIM. Various types of personal health information were managed (clinical, patient-generated, and general) and tools were used (electronic, paper-based, and others). Older adults' PHIM was intertwined with their surroundings, and various individuals participated. The largest body of evidence concerned personal factors, while findings regarding the physical environment of PHIM were scarce. Most research has thus far examined older adults as a single group, and scant attention has been paid to age subgroups.ConclusionsOpportunities for further PHIM studies remain across all elements of the patient work system in terms of empirical, design science, or review work.

Project description:BACKGROUND:With abundant personal health information at hand, individuals are faced with a critical challenge in evaluating the informational value of health care records to keep useful information and discard that which is determined useless. Young, healthy college students who were previously dependents of adult parents or caregivers are less likely to be concerned with disease management. Personal health information management (PHIM) is a special case of personal information management (PIM) that is associated with multiple interactions among varying stakeholders and systems. However, there has been limited evidence to understand informational or behavioral underpinning of the college students' PHIM activities, which can influence their health in general throughout their lifetime. OBJECTIVE:This study aimed to investigate demographic and academic profiles of college students with relevance to PHIM activities. Next, we sought to construct major PHIM-related activity components and perceptions among college students. Finally, we sought to discover major factors predicting core PHIM activities among college students we sampled. METHODS:A Web survey was administered to collect responses about PHIM behaviors and perceptions among college students from the University of Kentucky from January through March 2017. A total of 1408 college students were included in the analysis. PHIM perceptions, demographics, and academic variations were used as independent variables to predict diverse PHIM activities using a principal component analysis (PCA) and hierarchical regression analyses (SPSS v.24, IBM Corp, Armonk, NY, USA). RESULTS:Majority of the participants were female (956/1408, 67.90%), and the age distribution of this population included an adequate representation of college students of all ages. The most preferred health information resources were family (612/1408, 43.47%), health care professionals (366/1408, 26.00%), friends (27/1408, 1.91%), and the internet (157/1408, 11.15%). Organizational or curatorial activities such as Arranging, Labeling, Categorizing, and Discarding were rated low (average=3.21, average=3.02, average=2.52, and average=2.42, respectively). The PCA results suggested 3 components from perception factors labeled as follows: Assistance (alpha=.85), Awareness (alpha=.716), and Difficulty (alpha=.558). Overall, the Demographics and Academics variables were not significant in predicting dependent variables such as Labeling, Categorizing, Health Education Materials, and Discarding, whereas they were significant for other outcome variables such as Sharing, Collecting, Knowing, Insurance Information, Using, and Owning. CONCLUSIONS:College years are a significant time for students to learn decision-making skills for maintaining information, a key aspect of health records, as well as for educators to provide appropriate educational and decision aids in the environment of learning as independent adults. Our study will contribute to better understand knowledge about specific skills and perceptions for college students' practice of effective PHIM throughout their lives.

Project description:BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.

Project description:BackgroundThe recent surge in clinical and nonclinical health-related data has been accompanied by a concomitant increase in personal health data (PHD) research across multiple disciplines such as medicine, computer science, and management. There is now a need to synthesize the dynamic knowledge of PHD in various disciplines to spot potential research hotspots.ObjectiveThe aim of this study was to reveal the knowledge evolutionary trends in PHD and detect potential research hotspots using bibliometric analysis.MethodsWe collected 8281 articles published between 2009 and 2018 from the Web of Science database. The knowledge evolution analysis (KEA) framework was used to analyze the evolution of PHD research. The KEA framework is a bibliometric approach that is based on 3 knowledge networks: reference co-citation, keyword co-occurrence, and discipline co-occurrence.ResultsThe findings show that the focus of PHD research has evolved from medicine centric to technology centric to human centric since 2009. The most active PHD knowledge cluster is developing knowledge resources and allocating scarce resources. The field of computer science, especially the topic of artificial intelligence (AI), has been the focal point of recent empirical studies on PHD. Topics related to psychology and human factors (eg, attitude, satisfaction, education) are also receiving more attention.ConclusionsOur analysis shows that PHD research has the potential to provide value-based health care in the future. All stakeholders should be educated about AI technology to promote value generation through PHD. Moreover, technology developers and health care institutions should consider human factors to facilitate the effective adoption of PHD-related technology. These findings indicate opportunities for interdisciplinary cooperation in several PHD research areas: (1) AI applications for PHD; (2) regulatory issues and governance of PHD; (3) education of all stakeholders about AI technology; and (4) value-based health care including "allocative value," "technology value," and "personalized value."

Dataset Information

Managing personal health information in distributed research network environments.

Background

Methods

Results

Conclusions

Publications

Managing personal health information in distributed research network environments.

Similar Datasets

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