Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.

BACKGROUND: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting. METHODS: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data. DISCUSSION: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

A tribute to Karen Greenwood and her contributions to the American Medical Informatics Association.

After 25 years of service to the American Medical Informatics Association (AMIA), Ms Karen Greenwood, the Executive Vice President and Chief Operating Officer, is leaving the organization. In this perspective, we reflect on her accomplishments and her effect on the organization and the field of informatics nationally and globally. We also express our appreciation and gratitude for Ms Greenwood's role at AMIA.

Characterization of public health alerts and their suitability for alerting in electronic health record systems.

Public health agencies including federal, state, and local governments routinely send out public health advisories and alerts via e-mail and text messages to health care providers to increase awareness of public health events and situations. Agencies must ensure that practitioners have timely and accessible information at the critical point-of-care. Electronic health record (EHR) systems have the potential to alert physicians of emerging health conditions deemed important for public health at the most critical time of need. To understand how public health agencies can leverage existing alerting mechanisms in EHR systems, it is important to understand characteristics of public health alerts to determine their suitability for alerting in EHR systems. Authors conducted a review and analysis of public health alerts for a 3-year period to identify critical data attributes necessary to support public health alerting in EHR systems. The alerts were restricted to those most relevant for clinical care. The results showed that there is an opportunity for disseminating actionable information to clinical practitioners at the point of care to guide care and reporting. Public health alerts in EHR systems can be useful in reporting, recommending specific tests, as well as suggesting secondary prevention.

A visual representation of microbiological culture data improves comprehension: a randomized controlled trial.

OBJECTIVE: While the judicious use of antibiotics takes past microbiological culture results into consideration, this data's typical format in the electronic health record (EHR) may be unwieldy when incorporated into clinical decision-making. We hypothesize that a visual representation of sensitivities may aid in their comprehension. MATERIALS AND METHODS: A prospective parallel unblinded randomized controlled trial was undertaken at an academic urban tertiary care center. Providers managing emergency department (ED) patients receiving antibiotics and having previous culture sensitivity testing were included. Providers were randomly selected to use standard EHR functionality or a visual representation of patients' past culture data as they answered questions about previous sensitivities. Concordance between provider responses and past cultures was assessed using the kappa statistic. Providers were surveyed about their decision-making and the usability of the tool using Likert scales. RESULTS: 518 ED encounters were screened from 3/5/2018 to 9/30/18, with providers from 144 visits enrolled and analyzed in the intervention arm and 129 in the control arm. Providers using the visualization tool had a kappa of 0.69 (95% CI: 0.65-0.73) when asked about past culture results while the control group had a kappa of 0.16 (95% CI: 0.12-0.20). Providers using the tool expressed improved understanding of previous cultures and found the tool easy to use (P < .001). Secondary outcomes showed no differences in prescribing practices. CONCLUSION: A visual representation of culture sensitivities improves comprehension when compared to standard text-based representations.

Deployment of a highly secure clinical data repository in an insecure international environment.

We have designed and deployed a novel approach to protecting Personal Healthcare Information in environments where a data center is remote and its physical security cannot be assured. Our "KeyServer" methodology uses a server-client-server architecture to dynamically serve keys from a distant server in a separate secure data center in the US. The approach combines pre-existing and novel techniques into a layered protective barrier around compromise of patient data. We describe how this technology provides scalable security that makes security breaches highly unlikely. With some careful planning a Clinical Data Repositories fed by Electronic Health Records can be placed in relatively insecure settings, with a high-level of security surrounding data theft, even in the event of hardware theft. Such security architecture is ideal for not only developing nations, but for the evolution of health information to cloud computing platforms.

Governance for personal health records.

Personal health records (PHR) are a modern health technology with the ability to engage patients more fully in their healthcare. Despite widespread interest, there has been little discussion around PHR governance at an organizational level. We develop a governance model and compare it to the practices of some of the early PHR adopters, including hospitals and ambulatory care settings, insurers and health plans, government departments, and commercial sectors. Decision-making structures varied between organizations. Business operations were present in all groups, but patients were not represented in any of the governance structures surveyed. To improve patient-centered care, policy making for PHRs needs to include patient representation at a governance level.

Program requirements for fellowship education in the subspecialty of clinical informatics.

The Program Requirements for Fellowship Education identify the knowledge and skills that physicians must master through the course of a training program to be certified in the subspecialty of clinical informatics. They also specify accreditation requirements for clinical informatics training programs. The AMIA Board of Directors approved this document in November 2008.

Don E. Detmer and the American Medical Informatics Association: an appreciation.

Don E. Detmer has served as President and Chief Executive Officer of the American Medical Informatics Association (AMIA) for the past five years, helping to set a course for the organization and demonstrating remarkable leadership as AMIA has evolved into a vibrant and influential professional association. On the occasion of Dr. Detmer's retirement, we fondly reflect on his professional life and his many contributions to biomedical informatics and, more generally, to health care in the U.S. and globally.

Alicanto Online Latin American Maternal Informatics Community of Practice.

Most cases of maternal deaths could be avoided with timely access to quality healthcare, but a key challenge in addressing quality of care in maternal health is the lack of accurate data and analytics. Implementing online communities of practice is a way to resolve this, but in low-and middle-income countries this is particularly challenging. We discuss the design of the Alicanto Online Latin-American Community of Practice that focuses on both outcomes and process indicators.

An Informatics Framework for Maternal and Child Health (MCH) Monitoring.

Most cases of maternal deaths could be avoided with timely access to quality healthcare, but a key challenge in addressing quality of care in maternal health, is the lack of accurate data. We present a review of the difficulties of collecting and analyzing maternal health data. We propose a comprehensive informatics monitoring framework to track progress on the achievement of the international targets and priorities toward ending preventable maternal mortality and improving maternal and child health, that at the same time builds capacity at institutional and country level to collect indicators and to generate actionable and comparable knowledge that facilitates analysis, research, and evidence-based decision making.

Patient experience with family history tool: analysis of patients' experience sharing their family health history through patient-computer dialogue in a patient portal.

OBJECTIVE: The collection and use of a family health history are important for assessing the patient's risk of disease, but history taking is often impeded by practical barriers in the office. Provision for patient-computer dialogue, linked with the electronic health record, may enable patients to contribute their history while bypassing these barriers. We sought to assess the patient experience using such a tool. MATERIALS AND METHODS: We linked the family history module of a computer-based medical history to the patient portal of a large academic health system. The interview consisted of 39 primary questions with a predetermined high test-retest reliability. Patients' results were structured and summarized, and available within their electronic health record. Patients optionally completed a survey about their experience. We inductively analyzed free-text responses collected between 2014 and 2016. RESULTS: Among 97 781 patient portal users, 9562 patients accessed and 4223 patients completed the family medical history interview. Of these patients, 1451 completed our survey. Main themes that were identified included (1) patient empowerment, (2) anticipated value, (3) validity concerns, (4) privacy concerns, and (5) reflections on patient-computer dialogue. Patients also provided suggestions for the improvement of future family history tools. DISCUSSION: Patients providing their family health information is an example of collaborative electronic work with clinicians and was seen as valuable by those who participated. Concerns related to contextual information and uncertainty need to be addressed. CONCLUSIONS: Patient-computer dialogue to collect family medical history empowered patients and added perceived value and efficiency to the patient experience of care.

InfoSAGE: Usage Pattern of a Family-Centric Care Coordination Online Platform.

Globally, there is an expanding elderly population, and families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the usage patterns of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families. This descriptive analysis describes the types of family networks using the platform and types of functionality most used by elders and their family members.

Assessment of Unintentional Duplicate Orders by Emergency Department Clinicians Before and After Implementation of a Visual Aid in the Electronic Health Record Ordering System.

Importance: Electronic health records allow teams of clinicians to simultaneously care for patients, but an unintended consequence is the potential for duplicate orders of tests and medications. Objective: To determine whether a simple visual aid is associated with a reduction in duplicate ordering of tests and medications. Design, Setting, and Participants: This cohort study used an interrupted time series model to analyze 184 694 consecutive patients who visited the emergency department (ED) of an academic hospital with 55 000 ED visits annually. Patient visits occurred 1 year before and after each intervention, as follows: for laboratory orders, from August 13, 2012, to August 13, 2014; for medication orders, from February 3, 2013, to February 3, 2015; and for radiology orders, from December 12, 2013, to December 12, 2015. Data were analyzed from April to September 2019. Exposure: If an order had previously been placed during the ED visit, a red highlight appeared around the checkbox of that order in the computerized provider order entry system. Main Outcomes and Measures: Number of unintentional duplicate laboratory, medication, and radiology orders. Results: A total of 184 694 patients (mean [SD] age, 51.6 [20.8] years; age range, 0-113.0 years; 99 735 [54.0%] women) who visited the ED were analyzed over the 3 overlapping study periods. After deployment of a noninterruptive nudge in electronic health records, there was an associated 49% decrease in the rate of unintentional duplicate orders for laboratory tests (incidence rate ratio, 0.51; 95% CI, 0.45-0.59), from 4485 to 2731 orders, and an associated 40% decrease in unintentional duplicate orders of radiology tests (incidence rate ratio, 0.60; 95% CI, 0.44-0.82), from 956 to 782 orders. There was not a statistically significant change in unintentional duplicate orders of medications (incidence rate ratio, 1.17; 95% CI, 0.52-2.61), which increased from 225 to 287 orders. The nudge eliminated an estimated 17 936 clicks in our electronic health record. Conclusions and Relevance: In this interrupted time series cohort study, passive visual cues that provided just-in-time decision support were associated with reductions in unintentional duplicate orders for laboratory and radiology tests but not in unintentional duplicate medication orders.

A Usability Evaluation of the InfoSAGE App for Family-Based Medication Management.

The design of a mobile medication manager within a broader family and elder-centric collaboration platform faces challenges of usability and wide applicability. To inform the development and use cases of eldercare apps, we present the preliminary results of a usability study of an iOS and Android app intended for both family members and aging adults for the mobile management of medication lists. Seven participants were recorded during the performance of eight typical use-case scenarios of the medication portion of the InfoSAGE app. Audio and video recordings were analyzed for themes and events. The aim of this paper is to help inform future design choices for eldercare mobile apps.

Interface terminologies: bridging the gap between theory and reality for Africa.

In the United States and Europe, electronic health records (EHRs) allow information technology and decision-support to facilitate the activities of clinicians and are considered an important component of health care improvement. However, actual adoption of EHRs by physicians has been slow and the use of decision support has been minimal. Part of the difficulty lies in the challenges that users face in capturing structured clinical information. Reference and administrative terminologies have been in use for many years and provide a critical infrastructure to support reimbursement, decision-support and data analysis. The problem is that physicians do not think and work using reference terminologies. Interface terminologies bridge the gap between information that is in the physician's mind and information that can be interpreted by computer applications. The maps from interface terminologies to appropriate reference terminologies enable advanced functionality in clinical information systems. The conflict between the need for timely adoption of health information technology and the need for standardization is also relevant to the problems faced by health information technology in Africa. The problem of clinicians having to communicate and/or record information in a format that is acceptable to someone else, somewhere else, leaves the true benefits of these systems beyond the reach of most in Africa. There is a growing effort in the United States to produce clinically-relevant interface terminologies mapped to standards. These interface terminologies can be expanded to incorporate the languages and clinical requirements of clinicians in Africa. The adoption of interface terminologies will help bring the value of standard terminology and the resulting benefits of decision-support, data analysis and information retrieval to parts of the world where they are needed most.

Rethinking the outpatient medication list: increasing patient activation and education while architecting for centralization and improved medication reconciliation.

Objective: Identify barriers impacting the time consuming and error fraught process of medication reconciliation. Design and implement an electronic medication management system where patient and trusted healthcare proxies can participate in establishing and maintaining an inclusive and up-to-date list of medications. Methods: A patient-facing electronic medication manager was deployed within an existing research project focused on elder care management funded by the AHRQ, InfoSAGE, allowing patients and patients' proxies the ability to build and maintain an accurate and up-to-date medication list. Free and open-source tools available from the U.S. government were used to embed the tenets of centralization, interoperability, data federation, and patient activation into the design. Results: Using patient-centered design and free, open-source tools, we implemented a web and mobile enabled patient-facing medication manager for complex medication management. Conclusions: Patient and caregiver participation are essential to improve medication safety. Our medication manager is an early step towards a patient-facing medication manager that has been designed with data federation and interoperability in mind.

A Systematic Review on Promoting Adherence to Antiretroviral Therapy in HIV-infected Patients Using Mobile Phone Technology.

OBJECTIVE: Adherence to antiretroviral therapy (ART) is paramount to successful long-term suppression of human immunodeficiency virus (HIV). For poorly adherent patients with HIV, barriers to remaining adherent may be overcome by the implementation of targeted interventions delivered via mobile devices. This systematic review is focused specifically on mobile phone technologies to deliver adherence interventions in HIV/acquired immunodeficiency syndrome (AIDS) populations. METHODS: This review (PROSPERO #CRD42017065131) systematically extracted data from published literature from five databases on mobile phone interventions to improve adherence to ART for HIV. The reported studies had been conducted between 2007 and 2017. Risk of bias was assessed using the Cochrane method ranking each criterion as low, high, or unclear risk of bias. RESULTS: Of the 835 articles returned, we identified 26 randomized controlled trials (RCTs), retrospective and prospective cohort trials, or mixed method studies with a comparison group that fit criteria for inclusion. No standard measure of adherence was consistent throughout the examined studies, and assessments by self-report, pill counting, and medication event monitoring system (MEMS) were utilized. The studies reported mixed results, with 17 reporting significant improvements to adherence, 3 reporting improvements without supplying p-values, and 6 reporting no significant change or a reduction in adherence. CONCLUSION: The mixed nature of the results exemplifies the need for more comprehensive approaches and larger scale trials to confirm results observed in limited cohort sizes. To better retain satisfactory adherence within the HIV population, and especially in low-resource settings, we recommend that future interventions incorporate multiple strategies: mobile-based reminders, social support structures, and personalized content.

InfoSAGE: Supporting Elders and Families through Online Family Networks.

With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families. The InfoSAGE system has 257 registered users; 52 of these opted into an in-depth longitudinal study. A descriptive analysis of these early participants, the online family networks, and barriers to participation that were encountered are presented.