Dataset Information

Patient Perspectives on Health Data Privacy and Implications for Adverse Drug Event Documentation and Communication: Qualitative Study.

ABSTRACT:

Background

Adverse drug events are unintended and harmful effects of medication use. Using existing information and communication technologies (ICTs) to increase information sharing about adverse drug events may improve patient care but can introduce concerns about data privacy.

Objective

This study aims to examine the views of patients and their caregivers about data protection when using ICTs to communicate adverse drug event information to improve patient safety.

Methods

We conducted an exploratory qualitative study. A total of 4 focus groups were held among patients who had experienced or were at risk of experiencing an adverse drug event, their family members, and their caregivers. We recruited participants through multiple avenues and iteratively analyzed the data using situational analysis.

Results

Of the 47 participants recruited, 28 attended our focus groups. We identified 3 primary themes. First, participants felt that improved information sharing about adverse drug events within their circle of care would likely improve care. Second, participants were concerned about data handling and inappropriate access but believed that the benefits of information sharing outweighed the risks of privacy breaches. Finally, participants were more concerned about data privacy in the context of stigmatized health conditions.

Conclusions

Current conditions for maintaining health data privacy are consistent with participants' preferences, despite the fact that health data are susceptible to breaches and mismanagement. Information sharing that increases patient safety may justify potential privacy risks. Greater attention to patient concerns and the effect of social and contextual concerns in the design and implementation of health information technologies may increase patient confidence in the privacy of their information.

SUBMITTER: Small SS

PROVIDER: S-EPMC7857938 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient Perspectives on Health Data Privacy and Implications for Adverse Drug Event Documentation and Communication: Qualitative Study.

Small Serena S SS Hohl Corinne M CM Balka Ellen E

Journal of medical Internet research 20210120 1

<h4>Background</h4>Adverse drug events are unintended and harmful effects of medication use. Using existing information and communication technologies (ICTs) to increase information sharing about adverse drug events may improve patient care but can introduce concerns about data privacy.<h4>Objective</h4>This study aims to examine the views of patients and their caregivers about data protection when using ICTs to communicate adverse drug event information to improve patient safety.<h4>Methods</h4 ...[more]

PMID: 33470936

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Project description:BackgroundSpontaneous reporting systems (SRSs) have been increasingly established to collect adverse drug events for fostering adverse drug reaction (ADR) detection and analysis research. SRS data contain personal information, and so their publication requires data anonymization to prevent the disclosure of individuals' privacy. We have previously proposed a privacy model called MS(k, θ*)-bounding and the associated MS-Anonymization algorithm to fulfill the anonymization of SRS data. In the real world, the SRS data usually are released periodically (eg, FDA Adverse Event Reporting System [FAERS]) to accommodate newly collected adverse drug events. Different anonymized releases of SRS data available to the attacker may thwart our single-release-focus method, that is, MS(k, θ*)-bounding.ObjectiveWe investigate the privacy threat caused by periodical releases of SRS data and propose anonymization methods to prevent the disclosure of personal privacy information while maintaining the utility of published data.MethodsWe identify potential attacks on periodical releases of SRS data, namely, BFL-attacks, mainly caused by follow-up cases. We present a new privacy model called PPMS(k, θ*)-bounding, and propose the associated PPMS-Anonymization algorithm and 2 improvements: PPMS+-Anonymization and PPMS++-Anonymization. Empirical evaluations were performed using 32 selected FAERS quarter data sets from 2004Q1 to 2011Q4. The performance of the proposed versions of PPMS-Anonymization was inspected against MS-Anonymization from some aspects, including data distortion, measured by normalized information loss; privacy risk of anonymized data, measured by dangerous identity ratio and dangerous sensitivity ratio; and data utility, measured by the bias of signal counting and strength (proportional reporting ratio).ResultsThe best version of PPMS-Anonymization, PPMS++-Anonymization, achieves nearly the same quality as MS-Anonymization in both privacy protection and data utility. Overall, PPMS++-Anonymization ensures zero privacy risk on record and attribute linkage, and exhibits 51%-78% and 59%-82% improvements on information loss over PPMS+-Anonymization and PPMS-Anonymization, respectively, and significantly reduces the bias of ADR signal.ConclusionsThe proposed PPMS(k, θ*)-bounding model and PPMS-Anonymization algorithm are effective in anonymizing SRS data sets in the periodical data publishing scenario, preventing the series of releases from disclosing personal sensitive information caused by BFL-attacks while maintaining the data utility for ADR signal detection.

Project description:Hypertension is a recognized comorbidity for COVID-19. The association of antihypertensive medications with outcomes in patients with hypertension is not fully described. However, angiotensin-converting enzyme 2 (ACE2), responsible for host entry of the novel coronavirus (SARS-CoV-2) leading to COVID-19, is postulated to be upregulated in patients taking angiotensin-converting enzyme inhibitors (ACEIs) and angiotensin II receptor blockers (ARBs). Here, we evaluated the occurrence of pulmonary adverse drug events (ADEs) in patients with hypertension receiving ACEIs/ARBs to determine if disparities exist between individual drugs within the respective classes using data from the FDA Spontaneous Reporting Systems. For this purpose, we proposed the proportional reporting ratio to provide a statistical summary for the commonality of an ADE for a specific drug as compared to the entire database for drugs in the same or other classes. In addition, a statistical procedure, multiple logistic regression analysis, was employed to correct hidden confounders when causative covariates are underreported or untrusted to correct analyses of drug-ADE combinations. To date, analyses have been focused on drug classes rather than individual drugs which may have different ADE profiles depending on the underlying diseases present. A retrospective analysis of thirteen pulmonary ADEs showed significant differences associated with quinapril and trandolapril, compared to other ACEIs and ARBs. Specifically, quinapril and trandolapril were found to have a statistically significantly higher incidence of pulmonary ADEs compared with other ACEIs as well as ARBs (P < 0.0001) for group comparison (i.e., ACEIs vs. ARBs vs. quinapril vs. trandolapril) and (P ≤ 0.0007) for pairwise comparison (i.e., ACEIs vs. quinapril, ACEIs vs. trandolapril, ARBs vs. quinapril, or ARBs vs. trandolapril). This study suggests that specific members of the ACEI antihypertensive class (quinapril and trandolapril) have a significantly higher cluster of pulmonary ADEs.

Project description:BackgroundIn the incidental pulmonary nodule and breast cancer screening settings, high-quality patient-centered communication can improve adherence to evaluation and mitigate patient distress. Although guidelines emphasize shared decision-making before lung cancer screening, little is known about patient-clinician communication after lung cancer screening.Research questionHow do patients and clinicians perceive communication and results notification after lung cancer screening, and are there approaches that may mitigate or exacerbate distress?Study design and methodsWe conducted interviews and focus groups with 49 patients who underwent lung cancer screening in the prior year and 36 clinicians who communicate screening results (primary care providers, pulmonologists, nurses), recruited from lung cancer screening programs at 4 hospitals. We analyzed transcripts using conventional content analysis.ResultsClinicians and patients diverged in their impressions of the quality of communication after lung cancer screening. Clinicians recognized the potential for patient distress and tailored their approach to disclosure based on how clinically concerning they perceived results to be. Disclosure of normal or low-risk findings usually occurred by letter; clinicians believed this process was efficient and well received by patients. Yet many patients were dissatisfied: several could not recall receiving results at all, and others reported that receiving results by letter left them confused and concerned, with little opportunity to ask questions. By contrast, patients with larger nodules typically received results during an immediate phone call or clinic visit, and both patients and clinicians agreed that these conversations represented high-quality communication that met patient needs. Regardless of their cancer risk, patients who learned their results in a conversation appreciated the opportunity to discuss both the meaning of the nodule and the evaluation plan, and to have their concerns addressed, preempting distress.InterpretationTension exists between clinicians' interest in efficiency of results notification by letter in low-risk cases and patients' need to understand and be reassured about screening results, their implications, and the plan for subsequent screening or nodule evaluation-even when clinicians did not perceive results as concerning. Brief conversations to discuss lung cancer screening results may improve patient understanding and satisfaction while reducing distress.

Project description:BackgroundPreventable harm in healthcare is a growing public health challenge. In addition to the economic costs of safety failures, adverse drug events (ADE) may lead to complication or even death. Multidisciplinary care team involving a pharmacist appears to be an adequate response to prevention of adverse drug event. This qualitative systematic review aims to identify and describe multidisciplinary planned team-based care involving at least one pharmacist to limit or prevent adverse drug events in the adult patients.MethodsTo determine the type of interprofessional collaboration to prevent adverse drug event in which a pharmacist was involved, we conducted a qualitative systematic review of the literature of randomized controlled trials. Two independent reviewers screened trials in three databases: Medline, Web of Science, ScienceDirect. Prospective studies of at least three different health professionals' interventions, one of whom was a pharmacist in the last five years were included. Two reviewers performed data extraction and quality appraisal independently. We used TIDieR checklist to appraise articles quality.ResultsIn total 803 citations were retrieved, 34 were analysed and 16 full-text articles were reviewed. Only 3 studies published an implementation evaluation. More than half of the interventions (62%) targeted elderly patients including 6 whom lived in nursing homes. Studies outcomes were heterogeneous, and we did not perform a statistical analysis of the impact of these interventions. Most teams are composed of a physician/pharmacist/nurse trio (94%; 100%; 88%). Half of the teams were composed of the primary care physician. Other professionals were included such as physical therapists (25%), social worker (19%), occupational therapists (12%), and community health educator (6%). Multidisciplinary medication review was the most common intervention and was generally structured in four steps: data collection and baseline assessment, appraisal report by health professionals, a multidisciplinary medication review meeting and a patient follow-up.ConclusionsThe most common multidisciplinary intervention to prevent ADE in the adult population is the multidisciplinary drug review meeting at least the physician/pharmacist/nurse trio. Interventions target mostly elderly people in nursing homes, although complex chronic patients could benefit from this type of assessment.Trial registrationPROSPERO registration: CRD42022334685.

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Dataset Information

Patient Perspectives on Health Data Privacy and Implications for Adverse Drug Event Documentation and Communication: Qualitative Study.

Background

Objective

Methods

Results

Conclusions

Publications

Patient Perspectives on Health Data Privacy and Implications for Adverse Drug Event Documentation and Communication: Qualitative Study.

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