Systematic Analysis of Extracting Data on Advance Directives from Patient Electronic Health Records (EHR) in Terminal Oncology Patients.

Background: Advance directives are legal documents that include living wills and durable health care power of attorney documents. They are critical components of care for seriously ill patients which are designed to be implemented when a patient is terminally ill and incapacitated. We sought to evaluate potential reasons for why advance directives were not appropriately implemented, by reviewing the electronic health record (EHR) in patients with terminal cancer.

An Electronic Tool to Support Patient-Centered Broad Consent: A Multi-Arm Randomized Clinical Trial in Family Medicine.

Purpose: Patients are frequently asked to share their personal health information. The objective of this study was to compare the effects on patient experiences of 3 electronic consent (e-consent) versions asking patients to share their health records for research.

Methods: A multi-arm randomized controlled trial was conducted from November 2017 through November 2018.

Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial.

Objective: In the context of patient broad consent for future research uses of their identifiable health record data, we compare the effectiveness of interactive trust-enhanced e-consent, interactive-only e-consent, and standard e-consent (no interactivity, no trust enhancement).

Materials And Methods: A randomized trial was conducted involving adult participants making a scheduled primary care visit. Participants were randomized into 1 of the 3 e-consent conditions.

Patient preferences toward an interactive e-consent application for research using electronic health records.

Objective: The purpose of this study was to assess patient perceptions of using an interactive electronic consent (e-consent) application when deciding whether or not to grant broad consent for research use of their identifiable electronic health record (EHR) information.

Materials And Methods: For this qualitative study, we conducted a series of 42 think-aloud interviews with 32 adults. Interview transcripts were coded and analyzed using a modified grounded theory approach.

Informed consent process in Alpha-1 testing of at-risk children: views of parents and adults tested as children.

Targeted testing programs are identifying increasing numbers of adults affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) who are making decisions about genetic testing for their at-risk children. Although there are possible benefits, there are also potential risks. The purpose of this pilot study was to explore attitudes toward testing at-risk children from the first hand perspective of those involved, identify the benefits and risks experienced therein, and compare the views of parents and adults tested as children (ATC).

The problem with advance directives: maybe it is the medium, not the message.

Some of today's most significant bioethical challenges center around decisions to initiate or withhold medical treatment for incapacitated patients. In order to ascertain what treatment the patient would have desired, physicians often rely on written advance directives and designated surrogate decision-makers. Unfortunately, both approaches suffer from numerous shortcomings that ultimately limit their usefulness.

Advancing End-of-Life Care: lessons learned from a statewide panel.

The Florida Panel for the Study of End-of-Life Care was an innovative and effective approach to the formulation of end-of-life (EOL) policy recommendations that significantly influenced the legislative process and resulted in new EOL legislation. The lessons from this panel's experience are useful to other states considering legislative changes in their EOL policies. Key to the success of the EOL panel was its heterogeneous membership that allowed the collaboration of policy makers, clinicians, ethicists, citizens, and other stakeholders.