An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization

Collins, Sarah A.; Dykes, Patricia C.; Bates, David W.; Couture, Brittany; Rozenblum, Ronen; Prey, Jennifer E.; O’Reilly, Kristin; Bourie, Patricia Q.; Dwyer, Cindy; Greysen, Ryan; Smith, Jeffery; Gropper, Michael A.; Dalal, Anuj K.

doi:10.1093/jamia/ocx054

Cited by 24 publications

(14 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Technologies such as institutional patient portals would be well suited to provide such information, and studies of unmet consumer needs such as ours can identify high priority topics to inform the user-centered design needed to optimize the benefits of tools such as patient portals. 51 Our research team interpreted health-related needs broadly, resulting in a greater understanding of the questions, concerns, and issues confronting families during pregnancy than seen in prior studies focused predominantly on clinical information needs. 16 , 18 , 19 Of note, a significant number of needs were social and emotional concerns that have been also previously been shown to be common, especially among first-time parents, and seldom addressed by traditional “information needs” studies.…”

Section: Discussionmentioning

confidence: 99%

Consumer health-related needs of pregnant women and their caregivers

et al. 2018

View full text Add to dashboard Cite

ObjectivesTo build effective applications, technology designers must understand consumer health needs. Pregnancy is a common health condition, and expectant families have unanswered questions. This study examined consumer health-related needs in pregnant women and caregivers and determined the types of needs that were not met.Materials and MethodsWe enrolled pregnant women <36 weeks’ gestational age and caregivers from advanced maternal–fetal and group prenatal care settings. Participant characteristics were collected through surveys, and health-related needs were elicited in semi-structured interviews. Researchers categorized needs by semantic type and whether they were met (ie, met, partially met, or unmet). Inter-rater reliability was measured by Cohen’s kappa.ResultsSeventy-one pregnant women and 29 caregivers participated and reported 1054 needs, 28% unmet, and 49% partially met. Need types were 66.2% informational, 15.9% logistical, 8.9% social, 8.6% medical, and 0.3% other. Inter-rater reliability was near perfect (κ=0.95, P < 0.001).DiscussionCommon topics of unmet needs were prognosis, life management, and need for emotional support. For pregnant women, these unmet needs focused around being healthy, childbirth, infant care, and being a good mother; caregivers’ needs involved caring for the mother, the natural course of pregnancy, and life after pregnancy.ConclusionPregnant women and caregivers have a rich set of health-related needs with many not fully met. Caregivers’ needs differed from those of pregnant women and may not be adequately addressed by resources designed for mothers. Many unmet needs involved stress and life management. Knowledge about consumer health needs can inform the design of better technologies for pregnancy.

show abstract

Section: Discussionmentioning

confidence: 99%

Consumer health-related needs of pregnant women and their caregivers

et al. 2018

View full text Add to dashboard Cite

show abstract

“…The importance of considering the perspectives of distinct patient populations is seen in a range of efforts, including preliminary inquiries into potential designs for managing opioid abuse risk in military settings [58], teen smoking prevention tools [59], electronic system decision aids for depression [60], apps for menstrual tracking [61], personal health records for young adults leaving foster care [62], and identification of research areas for informatics support of families experiencing challenges of hospitalization and subsequent care [63]. A proposed clinical trial of the potential use of computer-delivered advice for encouraging physical activity in underserved populations [64] illustrates issues at the intersection of trust, inclusivity, and HCI, as different groups may have different responses to these automated agents.…”

Section: ) Systems Designmentioning

confidence: 99%

Human-Computer Interaction, Ethics, and Biomedical Informatics

Hochheiser

Valdez

2020

Yearb Med Inform

View full text Add to dashboard Cite

Objectives: To provide an overview of recent work at the intersection of Biomedical Informatics, Human-Computer Interaction, and Ethics. Methods: Search terms for Human-Computer Interaction, Biomedical Informatics, and Ethics were used to identify relevant papers published between 2017 and 2019.Relevant papers were identified through multiple methods, including database searches, manual reviews of citations, recent publications, and special collections, as well as through peer recommendations. Identified articles were reviewed and organized into broad themes. Results: We identified relevant papers at the intersection of Biomedical Informatics, Human-Computer Interactions, and Ethics in over a dozen journals. The content of these papers was organized into three broad themes: ethical issues associated with systems in use, systems design, and responsible conduct of research. Conclusions: The results of this overview demonstrate an active interest in exploring the ethical implications of Human-Computer Interaction concerns in Biomedical Informatics. Papers emphasizing ethical concerns associated with patient-facing tools, mobile devices, social media, privacy, inclusivity, and e-consent reflect the growing prominence of these topics in biomedical informatics research. New questions in these areas will likely continue to arise with the growth of precision medicine and citizen science.

show abstract

“…15,[19][20][21][22][23][24][25][26][27] Still, few studies have demonstrated meaningful impact on key outcomes, 20,[28][29][30] and to our knowledge, none have demonstrated the potential for using patient portals to improve concordance about the care plan, including recovery goals, among patients and clinicians in the acute care setting. 23,31,32 Improving patient-clinician communication through the meaningful use of patient portals represents a promising strategy to enhance mutual understanding about the plan and facilitate goal-concordant care for seriously ill patients during hospitalization and the transition back to the ambulatory setting. [33][34][35][36][37]…”

Section: Background and Significancementioning

confidence: 99%

Potential of an Electronic Health Record-Integrated Patient Portal for Improving Care Plan Concordance during Acute Care

et al. 2019

Self Cite

View full text Add to dashboard Cite

Background Care plan concordance among patients and clinicians during hospitalization is suboptimal. Objective This article determines whether an electronic health record (EHR)-integrated patient portal was associated with increased understanding of the care plan, including the key recovery goal, among patients and clinicians in acute care setting. Methods The intervention included (1) a patient portal configured to solicit a single patient-designated recovery goal and display the care plan from the EHR for participating patients; and (2) an electronic care plan for all unit-based nurses that displays patient-inputted information, accessible to all clinicians via the EHR. Patients admitted to an oncology unit, including their nurses and physicians, were enrolled before and after implementation. Main outcomes included mean concordance scores for the overall care plan and individual care plan elements. Results Of 457 and 283 eligible patients approached during pre- and postintervention periods, 55 and 46 participated in interviews, respectively, including their clinicians. Of 46 postintervention patients, 27 (58.7%) enrolled in the patient portal. The intention-to-treat analysis demonstrated a nonsignificant increase in the mean concordance score for the overall care plan (62.0–67.1, adjusted p = 0.13), and significant increases in mean concordance scores for the recovery goal (30.3–57.7, adjusted p < 0.01) and main reason for hospitalization (58.6–79.2, adjusted p < 0.01). The on-treatment analysis of patient portal enrollees demonstrated significant increases in mean concordance scores for the overall care plan (61.9–70.0, adjusted p < 0.01), the recovery goal (30.4–66.8, adjusted p < 0.01), and main reason for hospitalization (58.3–81.7, adjusted p < 0.01), comparable to the intention-to-treat analysis. Conclusion Implementation of an EHR-integrated patient portal was associated with increased concordance for key care plan components. Future efforts should be directed at improving concordance for other care plan components and conducting larger, randomized studies to evaluate the impact on key outcomes during transitions of care. Clinical Trials Identifier NCT02258594.

show abstract

An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization

Cited by 24 publications

References 17 publications

Consumer health-related needs of pregnant women and their caregivers

Consumer health-related needs of pregnant women and their caregivers

Human-Computer Interaction, Ethics, and Biomedical Informatics

Potential of an Electronic Health Record-Integrated Patient Portal for Improving Care Plan Concordance during Acute Care

Contact Info

Product

Resources

About