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Piloting a deceased subject integrated data repository and protecting privacy of relatives.

ABSTRACT: Use of deceased subject Electronic Health Records can be an important piloting platform for informatics or biomedical research. Existing legal framework allows such research under less strict de-identification criteria; however, privacy of non-decedent must be protected. We report on creation of the decease subject Integrated Data Repository (dsIDR) at National Institutes of Health, Clinical Center and a pilot methodology to remove secondary protected health information or identifiable information (secondary PxI; information about persons other than the primary patient). We characterize available structured coded data in dsIDR and report the estimated frequencies of secondary PxI, ranging from 12.9% (sensitive token presence) to 1.1% (using stricter criteria). Federating decedent EHR data from multiple institutions can address sample size limitations and our pilot study provides lessons learned and methodology that can be adopted by other institutions.

SUBMITTER: Huser V

PROVIDER: S-EPMC4420001 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Piloting a deceased subject integrated data repository and protecting privacy of relatives.

Huser Vojtech V Kayaalp Mehmet M Dodd Zeyno A ZA Cimino James J JJ

AMIA ... Annual Symposium proceedings. AMIA Symposium 20141114

Use of deceased subject Electronic Health Records can be an important piloting platform for informatics or biomedical research. Existing legal framework allows such research under less strict de-identification criteria; however, privacy of non-decedent must be protected. We report on creation of the decease subject Integrated Data Repository (dsIDR) at National Institutes of Health, Clinical Center and a pilot methodology to remove secondary protected health information or identifiable informati ...[more]

PMID: 25954378

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Project description:Surrogate decision-making is a stressful process for many family members of critically ill patients. The COVID-19 pandemic may have amplified the risk for anxiety, depression, and posttraumatic stress disorder (PTSD) symptoms in ICU surrogates.ObjectivesThis study piloted an online group-based behavioral intervention with family members of deceased COVID-19 patients. Participant engagement, perceptions, and responses related to the intervention were assessed.DesignA single-arm pilot study was conducted with bereaved families. Quantitative analysis of measures of anxiety, depression, and PTSD symptoms was conducted with mixed models. Qualitative data were analyzed to identify themes in surrogates' experiences with the intervention.SettingParticipants were recruited from ICUs at a tertiary academic medical center. Participants completed the intervention, measures, and interviews online.SubjectsParticipants were family members of patients who died from COVID-19.InterventionsThe intervention involved six online group-based behavioral activation sessions. Sessions covered topics pertinent to grieving and engagement in personally meaningful activities.Measurements and main resultsSemi-structured interviews explored participants' experiences with the intervention. Surrogates also completed measures of anxiety, depression, and PTSD symptoms before and after the intervention. Nineteen of 26 participants (73.1%) completed the study. Thematic analysis suggested that surrogates found the group helpful for overcoming perceived isolation, receiving validation, and developing coping skills. Significant pre-to-post reductions were observed in symptoms of Hospital and Anxiety Disorder Scale (HADS) anxiety (pre-mean = 9.27, sd = 5.30 vs post-mean = 6.80, sd = 4.16; p = 0.0271), HADS depression (pre-mean =6 .65, sd = 4.58 vs post- mean = 4.89, sd = 3.40; p = 0.0436), and Impact of Events Scale-Revised PTSD (pre-mean = 36.86, sd = 16.97 vs post-mean = 24.14, sd = 13.49; p = 0.0008).LimitationsThis was a preliminary study based on qualitative and self-report measures. Future studies should include a control group.ConclusionsOnline group-based behavioral activation therapy appears to be a potentially useful intervention for family members of ICU patients who died from COVID-19.

Dataset Information

Piloting a deceased subject integrated data repository and protecting privacy of relatives.

Publications

Piloting a deceased subject integrated data repository and protecting privacy of relatives.

Similar Datasets

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