Appendix: Content Summaries of Selected Best Papers for the 2020 IMIA Yearbook, Special
Section on Ethics in Health Informatics
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
In this scoping review, the authors assessed how research on patient portals addresses
health inequity. They sought to understand the health equity concepts explicitly and
implicitly addressed in patient portal research; identify gaps in such research; assess
whether eHealth-related inequities are acknowledged in patient portal research; and
identify strategies to reduce health inequities that are being tested in such research.
The authors used the eHealth Equity Framework (eHEF) to identify search terms and
searched CINAHL, MEDLINE, Embase, and Scopus for “patient portal” plus various health
equity terms (e.g., socioeconomic factors, digital divide) to identify articles to include in the review.
They then independently reviewed the 65 articles meeting the inclusion criteria. Using
the eHEF for analysis, they identified four themes: 1) eHealth policies, governance
approaches, and cultural and societal values may further inequities; 2) providers
and patients differ in preferences for portal use based on social position; 3) diverse
user-centered designs facilitate equitable portal implementation; and 4) intermediary
strategies for promoting portal use among populations are frequently suggested. The
authors note that published work focuses on barriers to portal use, which shifts responsibility
for addressing barriers to those who already experience the largest health disparities
and potentially obfuscates the effect of social, technical, economic, and political
factors on outcomes. The authors conclude that the informatics community must focus
on developing equitable strategies at the policy, practice, research, and implementation
levels to drive change.
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
Advance directives (ADs) benefit patients and their families by improving care and
quality of life, and by making it more likely that patients have the end-of-life experience
they desire. However, the use of ADs and the communication of code status happen infrequently,
and documenting ADs and code status in the electronic health record (EHR) remains
difficult. Members of the American Medical Informatics Association's Ethics Committee
determined that a minimum data set for the storage and exchange of code status information
could support greater use of ADs, and they performed an environmental scan to identify
existing resources that could facilitate such documentation in the EHR. Through multiple
conference calls, work group members achieved consensus around a proposed minimum
data set with links to the HL7 C_CDA Advance Directives Module. Data categories include
information about: 1) the organization obtaining the code status information; 2) the
patient; 3) supporting documentation; and 4) the desired code status information including
mandatory, optional, and conditional elements. These three types of elements prevent
the creation of an incomplete document that will not support achievement of patients’
goals end-of-life while managing the clinical burden associated with creating such
documentation. The resulting data set facilitates communication of patient goals and
preferences across multiple providers and health care settings. It is intended that
the identified data elements function as a starting point for discussion among informaticians,
physicians and staff, and EHR vendors.
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
Collaborations between academic researchers and technology companies historically
have been difficult to develop because of differing needs and goals related to data
privacy and security, intellectual property, technical requirements, ethics, and other
issues. Companies and academic institutions often are subject to different regulatory
requirements, and companies may incur costs from sharing data for noncommercial use
without gaining commensurate benefits from such activity, making companies reluctant
to do so. This paper describes an 18-month pilot undertaken by a non-for-profit technology
company with 20 research teams at 18 universities in which data from a crisis text
line was shared for research purposes. Design, development, and implementation of
principles and protocols for ethical, secure sharing of crisis text line user data
were the main objectives of the work. To accomplish this, the company created a data
ethics committee, identified policy barriers and potential ways to address them, publicized
the initiative, revised the policy, and launched the pilot. After program completion,
the company evaluated it against other potential program models and modified its approach
as appropriate. This paper describes the resulting 3-step set of guidelines for working
with academic research organizations, which focus on 1) define the value and suitability
of data and institutions for data-sharing programs; 2) choose a model for collaboration
involving data sharing; and 3) identify the most appropriate institutional structure
and develop technical approaches for ethical, secure data sharing. The paper also
describes how internal evaluation of the pilot indicated successful achievement of
its primary goal, shares principles and processes that may be useful to other companies,
and suggests other data-sharing models that may work better in other circumstances.
