--- title: "Digital info-sharing and pt. privacy with families in ICU. | Sutter Health" description: "Proxy decision makers should typically have access to health info from the current episode of care when the patient is decisionally impaired." url: "https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450" --- 1. [Home](https://www.sutterhealth.org/) / 2. [Research](https://www.sutterhealth.org/research) / 3. [Research publications](https://www.sutterhealth.org/research/publications) / 4. Digital info-sharing and pt. privacy with families in ICU. # Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit. Brown SM, Aboumatar HJ, Francis L, Halamka J, Rozenblum R, Rubin E, Sarnoff Lee B, Sugarman J, Turner K, Vorwaller M, Frosch DL; Privacy, Access, & and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation. _J Am Med Inform Assoc. pii: ocv182. doi: 10.1093/jamia/ocv182. \[Epub ahead of print\]_ 2016-03-16 ## Abstract Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs' authority; 6) methods for eliciting and documenting patient preferences about their family's information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access. [PubMed abstract](http://www.ncbi.nlm.nih.gov/pubmed/26984048) ## Research topics - [Health Services](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Health+Services%5C%22%22) - [Medical Informatics](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Medical+Informatics%5C%22%22) - [Mental Health](https://www.sutterhealth.org/research-search-results?query=%22%5C%22Mental+Health%5C%22%22) ## Related publications [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) - Publication ### [Serious mental illness and health-related factors associated with regional emergency department utilization.](https://www.sutterhealth.org/research/publications/serious-mental-illness-and-regional-er-use-1055312801) Azar KMJ, Petersen JP, Shen Z, Nasrallah C, Pesa J, LaMori J, Pressman A. 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J Am Geriatr Soc. doi: 10.1111/jgs.14248. \[Epub ahead of print\] 2016 Jul 07 [View all publications](https://www.sutterhealth.org/research-search-results?verticalKey=research_publication) ```json {"@context":"https://schema.org","@type":"MedicalOrganization","name":"Sutter Health","@id":"https://www.sutterhealth.org/#medicalorganization","url":"https://www.sutterhealth.org","logo":"https://www.sutterhealth.org/static/images/sutter-health-logo.svg","address":{"@type":"PostalAddress","streetAddress":"2200 River Plaza Drive","addressLocality":"Sacramento","addressRegion":"CA","postalCode":"95833","addressCountry":"US"},"areaServed":{"@type":"AdministrativeArea","name":"California"},"sameAs":["https://www.facebook.com/SutterHealth","https://www.instagram.com/sutterhealth/","https://x.com/SutterHealth","https://www.youtube.com/sutterhealth","https://www.linkedin.com/company/sutter-health","https://en.wikipedia.org/wiki/Sutter_Health"]} ``` ```json {"@context":"https://schema.org","@type":"BreadcrumbList","@id":"https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450#breadcrumblist","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https://www.sutterhealth.org/"},{"@type":"ListItem","position":2,"name":"Research","item":"https://www.sutterhealth.org/research"},{"@type":"ListItem","position":3,"name":"Research publications","item":"https://www.sutterhealth.org/research/publications"},{"@type":"ListItem","position":4,"name":"Digital info-sharing and pt. privacy with families in ICU."}]} ``` ```json {"@context":"https://schema.org","@type":"MedicalScholarlyArticle","@id":"https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450#medicalscholarlyarticle","name":"Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit.","headline":"Digital info-sharing and pt. privacy with families in ICU.","abstract":"Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs' authority; 6) methods for eliciting and documenting patient preferences about their family's information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access.","description":"Proxy decision makers should typically have access to health info from the current episode of care when the patient is decisionally impaired.","keywords":["Health Services","Medical Informatics","Mental Health"],"datePublished":"2016-03-16","url":"https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450","inLanguage":"en-US","identifier":[{"@type":"PropertyValue","propertyID":"PMID","value":"26984048"},{"@type":"PropertyValue","propertyID":"DOI","value":"10.1093/jamia/ocv182"}],"sameAs":["https://pubmed.ncbi.nlm.nih.gov/26984048/","https://doi.org/10.1093/jamia/ocv182"],"isPartOf":{"@type":"Periodical","name":"J Am Med Inform Assoc"},"sourceOrganization":{"@type":"MedicalOrganization","name":"Palo Alto Medical Foundation Research Institute"},"about":[{"@type":"DefinedTerm","name":"Health Services","url":"https://www.sutterhealth.org/research-search-results?facets=%5B%7B%22i%22%3A%22c_researchTopics.name%22%2C%22v%22%3A%5B%22Health+Services%22%5D%7D%5D&verticalKey=research_publication"},{"@type":"DefinedTerm","name":"Medical Informatics","url":"https://www.sutterhealth.org/research-search-results?facets=%5B%7B%22i%22%3A%22c_researchTopics.name%22%2C%22v%22%3A%5B%22Medical+Informatics%22%5D%7D%5D&verticalKey=research_publication"},{"@type":"DefinedTerm","name":"Mental Health","url":"https://www.sutterhealth.org/research-search-results?facets=%5B%7B%22i%22%3A%22c_researchTopics.name%22%2C%22v%22%3A%5B%22Mental+Health%22%5D%7D%5D&verticalKey=research_publication"}],"mainEntityOfPage":{"@type":"WebPage","@id":"https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450","breadcrumb":{"@id":"https://www.sutterhealth.org/research/publications/digital-info-sharing-pt-privacy-families-icu-1055312450#breadcrumblist"}}} ```