scholarly journals Best Paper Selection

2020 ◽  
Vol 29 (01) ◽  
pp. 080-080
Keyword(s):  
Advance Directives ◽  
Information Exchange ◽  
Text Line ◽  
Patient Portals ◽  
User Privacy ◽  
Healthcare Ethics ◽  
Code Status ◽  
Is Research ◽  
Status Information ◽  
Article Abstract

Antonio MG, Petrovskaya O, Lau F. Is research on patient portals attuned to health equity? A scoping review. J Am Med Inform Assoc 2019 Aug 1;26(8-9):871-83 https://academic.oup.com/jamia/article-abstract/26/8-9/871/5487071?redirectedFrom=fulltext Lehmann CU, Petersen C, Bhatia H, Berner ES, Goodman KW. Advance directives and code status information exchange: a consensus proposal for a minimum set of attributes. Camb Q Healthc Ethics 2019 Jan;28(1):178-85 https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/advance-directives-and-code-status-information-exchange-a-consensus-proposal-for-a-minimum-set-of-attributes/ED331B3CBF269E2DE714DB4357319811 Pisani AR, Kanuri N, Filbin B, Gallo C, Gould M, Lehmann LS, Levine R, Marcotte JE, Pascal B, Rousseau D, Turner S, Yen S, Ranney ML. Protecting user privacy and rights in academic data-sharing partnerships: principles from a pilot program at crisis text line. J Med Internet Res 2019 Jan 17;21(1):e11507 https://www.jmir.org/2019/1/e11507/

Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes

2018 ◽  
Vol 28 (1) ◽  
pp. 178-185 ◽  
Author(s):  
CHRISTOPH U. LEHMANN ◽  
CAROLYN PETERSEN ◽  
HARESH BHATIA ◽  
ETA S. BERNER ◽  
KENNETH W. GOODMAN
Keyword(s):  
Advance Directives ◽  
Ethics Committee ◽  
Cost Of Care ◽  
Minimum Data Set ◽  
Data Set ◽  
Code Status ◽  
Minimum Data ◽  
Starting Point ◽  
Status Information ◽  
Eol Care

Abstract:Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association’s Ethics Committee identified a need for a patient’s EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C_CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The “minimum set of attributes” to exchange advance directive / code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.

Missing Link of the Health Information Exchange Loop

2017 ◽  
pp. 1185-1196
Author(s):  
Alice Noblin ◽  
Kendall Cortelyou-Ward
Keyword(s):  
Health Information ◽  
Patient Engagement ◽  
Information Exchange ◽  
Medical Information ◽  
Health Information Exchange ◽  
Medical Data ◽  
Patient Portals ◽  
Record Keeping ◽  
Care Industry ◽  
Basic Services

Since 2004, the services of the Florida Health Information Exchange (HIE) have grown, and in 2011, the state contracted with Harris Corporation to provide some basic services to the Florida health care industry and provide functional improvements to the expanding state-wide HIE. The endeavors of this public-private partnership continue to the present day; however, as HIE services have expanded, challenges continue to be encountered. Ultimately, successful exchange of medical data requires patient engagement and “buy-in.” The purpose of this article will consider why patient engagement is important for HIE success, offer recommendations to improve both patient and provider interest, and consider the importance of online patient portals to increase the effectiveness of health record keeping and the sharing of vital patient medical information needed by caregivers and their patients.

A Viewpoint of Security for Digital Health Care in the United States

2014 ◽  
Vol 2 (1) ◽  
pp. 1-21 ◽  
Author(s):  
Steven A. Demurjian ◽  
Alberto De la Rosa Algarín ◽  
Jinbo Bi ◽  
Solomon Berhe ◽  
Thomas Agresta ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Health Information ◽  
Information Exchange ◽  
Digital Health ◽  
The United States ◽  
Hard Copy ◽  
Health Providers ◽  
Patient Portals ◽  
Health Records

In health care, patient information of interest to health providers, researchers, public health researchers, insurers, patients, etc., is stored in different locations via electronic media and/or hard-copy formats. All potential users need electronic access to health information technology systems such as: electronic health records, personal health records, patient portals, and ancillary systems such as imaging, laboratory, pharmacy, etc. Controlling access to information from multiple systems requires granularity levels of privileges ranging from one patient to a cohort to an entire population. In this paper, we present a viewpoint of the state of secure digital health care in the United States, focusing on the resources that need to be protected as dictated by legal entities and regulations, the available approaches in the present state-of-the art, and, the potential needs for the future of security for digital health care. By utilizing a real world scenario, the authors explore the limitations of health information exchange in the United States, and present one possible architecture for secure digital health care that builds on existing technology alternatives.

Science of quality: Communication, decision making, and behavior.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 22-22 ◽  
Author(s):  
Deb Harrison ◽  
J. Russell Hoverman ◽  
Sabrina Q. Mikan ◽  
Kevin Donald Olson ◽  
Cynthia Taniguchi ◽  
...  
Keyword(s):  
Decision Making ◽  
Pilot Study ◽  
End Of Life ◽  
Advance Directives ◽  
Assessment Tool ◽  
Cancer Center ◽  
Measurement Tool ◽  
Physician Referral ◽  
Code Status ◽  
Values Assessment

22 Background: Addressing advance care planning (ACP) early in metastatic disease is a challenge for providers across oncology. Providing a systematic method to engage providers and patients in these discussions offers opportunities to improve end of life outcomes, improve patient quality of life and engage in shared decision making that supports effective transition to appropriate palliative care and hospice. Methods: A multidisciplinary group of oncology providers developed a framework for ACP which included defining a target population for early introduction, utilizing a standard patient-centered measurement tool (Values Assessment), reviewing practice workflow to schedule ACP conversations, and incorporating documentation elements embedded in the electronic health record. The model included physician referral of patients to a nurse practitioner or social worker who scheduled meetings with patients to assess values, assist patients with advance directives (AD), and explore patient end-of-life wishes based on disease. Seven cancer center sites of service engaged in the pilot study for a 90-day period to test tools, workflow and effectiveness of implementation methods. Documented values assessments, code status, and advance directives were pilot outcomes measures. Results: All sites in the pilot study implemented the framework and participated for 90 days. Workflows were validated to support scheduling of ACP conversations. Use of the values assessment tool was slow to be incorporated in ACP process as was physician referral for introduction. Conclusions: Engaging in a systematic approach to gather and assimilate information provides an opportunity to comparatively assess adoption of an ACP program. Providers are not inherently experienced in basic ACP introduction or deeper ACP discussions. Communications training, including conversations for values assessment and ACP, is in development for use with pilot and new practices engaging in the program, which supports program scalability. [Table: see text]

scholarly journals Secure Communication and Information Exchange using Authenticated Ciphertext Policy Attribute-Based Encryption in Mobile Ad-hoc Network

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Samsul Huda ◽  
Amang Sudarsono ◽  
Tri Harsono
Keyword(s):  
Information Exchange ◽  
Secure Communication ◽  
Ad Hoc ◽  
Mobile Ad Hoc Network ◽  
High Mobility ◽  
User Privacy ◽  
Authentication Code ◽  
Privacy Issue ◽  
Attribute Based Encryption ◽  
Ciphertext Policy

MANETs are considered as suitable for commercial applications such as law enforcement, conference meeting, and sharing information in a student classroom and critical services such as military operations, disaster relief, and rescue operations. Meanwhile, in military operation especially in the battlefield in freely medium which naturally needs high mobility and flexibility. Thus, applying MANETs make these networks vulnerable to various types of attacks such aspacket eavesdropping, data disseminating, message replay, message modification, and especially privacy issue. In this paper, we propose a secure communication and information exchange in MANET with considering secure adhoc routing and secure information exchange. Regarding privacy issue or anonymity, we use a reliable asymmetric encryption which protecting user privacy by utilizing insensitive user attributes as user identity, CP-ABE (Ciphertext-Policy Attribute-Based Encryption) cryptographic scheme. We also design protocols to implement the proposed scheme for various battlefied scenarios in real evironment using embedded devices. Our experimental results showed that the additional of HMAC (Keyed-Hash Message Authentication Code) and AES (Advanced Encryption standard) schemes using processor 1.2GHz only take processing time about 4.452 ms,  we can confirm that our approach by using CP-ABE with added HMAC and AES schemes make low overhead.

Integrating POLST into Palliative Care Guidelines: A Paradigm Shift in Advance Care Planning in Oncology

2006 ◽  
Vol 4 (8) ◽  
pp. 819-829 ◽  
Author(s):  
Patricia A. Bomba ◽  
Daniel Vermilyea
Keyword(s):  
Advance Directives ◽  
Advance Care Planning ◽  
Patient Preferences ◽  
Metastatic Cancer ◽  
Health Care Team ◽  
Care Planning ◽  
Patient Centered ◽  
Code Status ◽  
Advance Care ◽  
Patient Values

Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is an essential process that should begin at the time of diagnosis, if not already initiated, to ensure that all patient and family rights are preserved. Communicating effectively with the patient and family and having the patient designate a surrogate decision-maker are critical. Attention must be paid to resolving conflicts among patient values and preferences and those of family and the health care team. Patient-centered goals for care and expectations should be elicited at first assessment and reassessed frequently as conditions change. As a disease progresses, advance directives are rarely precise enough to predict all possible scenarios and outline guidance for care. Therefore, for patients with advanced metastatic cancer and a potential life expectancy of less than 1 year, converting patient-centered treatment goals into actionable medical orders while the patient maintains capacity is a more effective way to ensure that patient preferences are honored. Physician Orders for Life-Sustaining Treatment (POLST) and similar medical order forms provide explicit direction about resuscitation status (“code status”) if the patient is pulseless and apneic. POLST also includes directions about additional interventions the patient may or may not want. A decade of research in Oregon has proved that the POLST Paradigm Program more accurately conveys end-of-life preferences that are more likely to be followed by medical professionals than traditional advance directives alone.

A Viewpoint of Security for Digital Health Care in the United States

2017 ◽  
pp. 1326-1344
Author(s):  
Steven A. Demurjian ◽  
Alberto De la Rosa Algarín ◽  
Jinbo Bi ◽  
Solomon Berhe ◽  
Thomas Agresta ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Health Information ◽  
Information Exchange ◽  
Digital Health ◽  
The United States ◽  
Health Providers ◽  
Patient Portals ◽  
Health Records ◽  
Multiple Systems

In health care, patient information of interest to health providers, researchers, public health researchers, insurers, patients, etc., is stored in different locations via electronic media and/or hard-copy formats. All potential users need electronic access to health information technology systems such as: electronic health records, personal health records, patient portals, and ancillary systems such as imaging, laboratory, pharmacy, etc. Controlling access to information from multiple systems requires granularity levels of privileges ranging from one patient to a cohort to an entire population. In this paper, we present a viewpoint of the state of secure digital health care in the United States, focusing on the resources that need to be protected as dictated by legal entities and regulations, the available approaches in the present state-of-the art, and, the potential needs for the future of security for digital health care. By utilizing a real world scenario, the authors explore the limitations of health information exchange in the United States, and present one possible architecture for secure digital health care that builds on existing technology alternatives.

Clinical ethics consultation in oncology.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9121-9121
Author(s):  
Andrew G Shuman ◽  
Sacha M Montas ◽  
Andrew R Barnosky ◽  
Lauren B Smith ◽  
David W Kissane ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Directives ◽  
Professional Education ◽  
Clinical Ethics ◽  
Interpersonal Conflict ◽  
Ethics Consultation ◽  
Clinical Ethics Consultation ◽  
Goals Of Care ◽  
Code Status

9121 Background: There is limited empirical research exploring the nature of clinical ethical consultations within the oncology population. Our objective is to review, describe and compare clinical ethics consultations at two NCI-designated comprehensive cancer centers, in order to identify opportunities for systems improvement in clinical care. Methods: This case series is derived from prospectively-maintained clinical ethics consultation databases at each institution. All adult oncology patients receiving ethics consultation from 2007 through 2011 were included as eligible cases. Both qualitative and quantitative analyses were undertaken. Demographic and clinical information were obtained from the databases for all patients, and verified via chart abstraction. Additional variables studied included the reason for and context of the ethical consultation, the patient’s code status before and after consultation, and involvement of palliative care or other adjuvant services. Opportunities for systems-level improvements and/or educational initiatives were identified. Results: A total of 207 eligible cases were identified. The most common primary issues leading to ethics consultation were code status and advance directives (25%), surrogate decision-making (17%), and medical futility (13%). Communication lapses were identified in 41%, and interpersonal conflict arose in 51%. Prior to ethics consultation, 26% of patients were DNR; 60% were DNR after ethics consultation. Palliative care consultation occurred in 41% of cases. Opportunities for systems improvement and professional education related to goals of care at the end of life, the role of palliative care involvement, and improved communication. Conclusions: Ethics consultations among cancer patients reflect the realities inherent to their clinical management. Appropriately addressing advance directives within the context of overall goals of care is crucial. Thoughtful consideration of communication barriers, sources of interpersonal conflict, symptom control, and end-of-life care are paramount to optimal management strategies in this patient population.

Documentation of Advance Directives and Code Status in Electronic Medical Records to Honor Goals of Care

2019 ◽  
Vol 35 (4) ◽  
pp. 217-220 ◽  
Author(s):  
Meaghann S. Weaver ◽  
Betty Anderson ◽  
Anne Cole ◽  
Maureen E. Lyon
Keyword(s):  
Electronic Medical Records ◽  
Advance Directives ◽  
Advance Care Planning ◽  
Medical Records ◽  
Current Approach ◽  
Treatment Preferences ◽  
Care Planning ◽  
Record System ◽  
Code Status ◽  
Advance Care

Advance care planning is a process that supports conversations about the values that matter most to patients and their family members. The documentation of advance directives and code status in a patient’s electronic health record (EHR) is a critical step to ensure treatment preferences are honored in the medical care received. The current approach to advanced care planning documentation in electronic medical records often remains disparate within and across EHR systems. Without a standardized format for documentation or centralized location for documentation, advance directives and even code status content are often difficult to access within electronic medical records. This case report launched our palliative care team into partnership with the Information Technology team for implementation of a centralized, standardized, longitudinal, functional documentation of advance care planning and code status in the electronic medical record system.

scholarly journals Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line (Preprint)

2018 ◽  
Author(s):  
Anthony R Pisani ◽  
Nitya Kanuri ◽  
Bob Filbin ◽  
Carlos Gallo ◽  
Madelyn Gould ◽  
...  
Keyword(s):  
Public Relations ◽  
Data Sharing ◽  
Policy Development ◽  
Open Data ◽  
Scientific Data ◽  
Pilot Program ◽  
Text Line ◽  
Ethical Challenges ◽  
User Privacy ◽  
Academic Researchers

UNSTRUCTURED Data sharing between technology companies and academic health researchers has multiple health care, scientific, social, and business benefits. Many companies remain wary about such sharing because of unaddressed concerns about ethics, data security, logistics, and public relations. Without guidance on these issues, few companies are willing to take on the potential work and risks involved in noncommercial data sharing, and the scientific and societal potential of their data goes unrealized. In this paper, we describe the 18-month long pilot of a data-sharing program led by Crisis Text Line (CTL), a not-for-profit technology company that provides a free 24/7 text line for people in crisis. The primary goal of the data-sharing pilot was to design, develop, and implement a rigorous framework of principles and protocols for the safe and ethical sharing of user data. CTL used a stakeholder-based policy process to develop a feasible and ethical data-sharing program. The process comprised forming a data ethics committee; identifying policy challenges and solutions; announcing the program and generating interest; and revising the policy and launching the program. Once the pilot was complete, CTL examined how well the program ran and compared it with other potential program models before putting in place the program that was most suitable for its organizational needs. By drawing on CTL’s experiences, we have created a 3-step set of guidelines for other organizations that wish to develop their own data-sharing program with academic researchers. The guidelines explain how to (1) determine the value and suitability of the data and organization for creating a data-sharing program; (2) decide on an appropriate data sharing and collaboration model; and (3) develop protocols and technical solutions for safe and ethical data sharing and the best organizational structure for implementing the program. An internal evaluation determined that the pilot satisfied CTL’s goals of sharing scientific data and protecting client confidentiality. The policy development process also yielded key principles and protocols regarding the ethical challenges involved in data sharing that can be applied by other organizations. Finally, CTL’s internal review of the pilot program developed a number of alternative models for sharing data that will suit a range of organizations with different priorities and capabilities. In implementing and studying this pilot program, CTL aimed both to optimize its own future data-sharing programs and to inform similar decisions made by others. Open data programs are both important and feasible to establish. With careful planning and appropriate resources, data sharing between big data companies and academic researchers can advance their shared mission to benefit society and improve lives.

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