Robert J. Lucero

Using Health Information Technology to Engage Communities in Health, Education, and Research

The Internet can be used for personal health management as well as to facilitate partnerships and data-sharing in a community setting. Engaging Communities In August 2011, scientists and policy-makers held a conference entitled “Using Information Technology to Improve Community Health: How Health Care Reform Supports Innovation.” At the conference, four “Think Tank” sessions convened, one which was “Health Information Technology (HIT) as a Resource to Improve Community Health and Education.” During this session, a diverse group of 30 individuals discussed ways that HIT could engage communities to improve patient health, education, and research involvement. The August 2011 Clinical and Translational Science Awards conference “Using IT to Improve Community Health: How Health Care Reform Supports Innovation” convened four “Think Tank” sessions. Thirty individuals, representing various perspectives on community engagement, attended the “Health information technology (HIT) as a resource to improve community health and education” session, which focused on using HIT to improve patient health, education, and research involvement. Participants discussed a range of topics using a semistructured format. This article describes themes and lessons that emerged from that session, with a particular focus on using HIT to engage communities to improve health and reduce health disparities in populations.

Identifying Consumer’s Needs of Health Information Technology through an Innovative Participatory Design Approach among English- and Spanish-speaking Urban Older Adults

OBJECTIVES We describe an innovative community-centered participatory design approach, Consumer-centered Participatory Design (C2PD), and the results of applying C2PD to design and develop a web-based fall prevention system. METHODS We conducted focus groups and design sessions with English- and Spanish-speaking community-dwelling older adults. Focus group data were summarized and used to inform the context of the design sessions. Descriptive content analysis methods were used to develop categorical descriptions of design session informants needs related to information technology. RESULTS The C2PD approach enabled the assessment and identification of informants needs of health information technology (HIT) that informed the development of a falls prevention system. We learned that our informants needed a system that provides variation in functions/content; differentiates between actionable/non-actionable information/structures; and contains sensory cues that support wide-ranging and complex tasks in a varied, simple, and clear interface to facilitate self-management. CONCLUSIONS The C2PD approach provides community-based organizations, academic researchers, and commercial entities with a systematic theoretically informed approach to develop HIT innovations. Our community-centered participatory design approach focuses on consumers technology needs while taking into account core public health functions.

The Northern Manhattan Caregiver Intervention Project: a randomised trial testing the effectiveness of a dementia caregiver intervention in Hispanics in New York City

Objectives Dementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing depression and stress in selected populations of caregivers. Hispanics in New York City tend to have a higher burden of dementia caregiving compared to non-Hispanic whites (NHW) because Hispanics have a higher prevalence of dementia, tend to have high family involvement, and tend to have higher psychosocial and economic stressors. Thus, we chose to test the effectiveness of a dementia caregiving intervention, the New York University Caregiver Intervention (NYUCI), with demonstrated efficacy in spouse caregivers in Hispanic relative caregivers of persons with dementia. Including the community health worker (CHW) intervention in both arms alleviates general psychosocial stressors and allows the assessment of the effectiveness of the intervention. Compared to two original efficacy studies of the NYUCI, which included only spouse caregivers, our study includes all relative caregivers, including common law spouses, children, siblings, a nephew and nieces. This study will be the first randomised trial to test the effectiveness of the NYUCI in Hispanic caregivers including non-spouses. Methods and analysis The design of the study is a randomised controlled trial (RCT). Participants are randomised to two arms: case management by a CHW and an intervention arm including the NYUCI in addition to case management by the CHW. The duration of intervention is 6 months. The main outcomes in the trial are changes in the Geriatric Depression Scale (GDS) and the Zarit Caregiver Burden Scale (ZCBS) from baseline to 6 months. Ethics and dissemination This trial is approved by the Columbia University Medical Center Institutional Review Board (AAAI0022), and funded by the National Institute on Minority Health and Health Disparities. The funding agency has no role in dissemination. Trial Registration www.ClinicalTrials.gov NCT01306695.

Initial Usability and Feasibility Evaluation of a Personal Health Record-Based Self-Management System for Older Adults.

Introduction: Electronic personal health record-based (ePHR-based) self-management systems can improve patient engagement and have an impact on health outcomes. In order to realize the benefits of these systems, there is a need to develop and evaluate heath information technology from the same theoretical underpinnings. Methods: Using an innovative usability approach based in human-centered distributed information design (HCDID), we tested an ePHR-based falls-prevention self-management system—Self-Assessment via a Personal Health Record (i.e., SAPHeR)—designed using HCDID principles in a laboratory. And we later evaluated SAPHeR’s use by community-dwelling older adults at home. Results: The innovative approach used in this study supported the analysis of four components: tasks, users, representations, and functions. Tasks were easily learned and features such as text-associated images facilitated task completion. Task performance times were slow, however user satisfaction was high. Nearly seven out of every ten features desired by design participants were evaluated in our usability testing of the SAPHeR system. The in vivo evaluation suggests that older adults could improve their confidence in performing indoor and outdoor activities after using the SAPHeR system. Discussion/Conclusion: We have applied an innovative consumer-usability evaluation. Our approach addresses the limitations of other usability testing methods that do not utilize consistent theoretically based methods for designing and testing technology. We have successfully demonstrated the utility of testing consumer technology use across multiple components (i.e., task, user, representational, functional) to evaluate the usefulness, usability, and satisfaction of an ePHR-based self-management system.

The Relationship Between Individual Characteristics and Interest in Using a Mobile Phone App for HIV Self-Management: Observational Cohort Study of People Living With HIV

Background The human immunodeficiency virus (HIV) continues to be a major health issue in the United States, and an estimated 1.2 million people in the United States are living with HIV. As part of Healthy People 2020, the Office of Disease Prevention and Health Promotion has targeted the persistent demographic and geographic disparities in HIV prevalence and management. Preliminary evidence suggests that mobile health technology (smartphone apps) may be a promising way to support HIV self-management among vulnerable populations of people living with HIV (PLWH) who lack access to appropriate health care services. Objective This study examines the association between individual characteristics of PLWH and level of interest in using a free mobile phone app for HIV self-management. Methods This study was conducted using cross-sectional survey data collected in the Florida Cohort Study between 2014 and 2016 (N=766). Associations between individual characteristics of PLWH and level of interest in using a free mobile phone app for HIV self-management were examined using bivariate analysis and logistic regression. Results Overall, 85.5% (655/766) of respondents were interested in using a free mobile phone app that supports HIV self-management. Participants expressed the highest interest in app functions that facilitate communication with health care providers (568/740, 76.8%) or help to identify relevant health care services (556/745 74.6%). Age (OR 0.959, 95% CI 0.936-0.982), education (OR 1.281, 95% CI 1.027-1.598) and disability or inability to work (OR 0.296, 95% CI 0.145-0.606) were all significantly associated with being interested in using a free mobile phone app for HIV self-management. Conclusions This study indicates that a majority of PLWH are interested in using a free mobile phone app to self-manage their condition. The findings can inform the development of mobile phone apps that support effective HIV self-management.

Urban-Dwelling Community Members’ Views on Biomedical Research Engagement

In this study, we explore community members’ overall understanding and experience with biomedical research engagement. We conducted a qualitative analysis to explore a concept that emerged but was not specifically addressed in a pre-existing dataset obtained using four focus group sessions with 30 urban-dwelling community members. Transcripts were read in an iterative process, and an emergent content analysis was performed. Five main themes were identified: (a) engaging in research to contribute to personal or greater good, (b) hierarchy of trust, (c) the importance of disclosure and transparency, (d) practical barriers to research engagement, and (e) fear of research procedures. Community members view research engagement as a collaborative process whereby community members and researchers are involved in all stages of the investigation. Focusing on research engagement, and not merely participation, may enhance community knowledge of the research process and advance scientific knowledge.

Interest in using mobile technology to help self-manage alcohol use among persons living with the human immunodeficiency virus: A Florida Cohort cross-sectional study

BACKGROUND Alcohol consumption at hazardous levels is more prevalent and associated with poor health outcomes among persons living with the human immunodeficiency virus (HIV; PLWH). Although PLWH are receptive to using technology to manage health issues, it is unknown whether a cell phone app to self-manage alcohol use would be acceptable among PLWH who drink. The objectives of this study were to determine factors associated with interest in an app to self-manage drinking and to identify differences in baseline mobile technology use among PLWH by drinking level. METHODS The study population included 757 PLWH recruited from 2014 to 2016 into the Florida Cohort, an ongoing cohort study investigating the utilization of health services and HIV care outcomes among PLWH. Participants completed a questionnaire examining demographics, substance use, mobile technology use, and other health behaviors. Multivariable logistic regression was used to identify factors significantly associated with interest in an app to self-manage drinking. We also determined whether mobile technology use varied by drinking level. RESULTS Of the sample, 40% of persons who drink at hazardous levels, 34% of persons who drink at nonhazardous levels, and 19% of persons who do not drink were interested in a self-management app for alcohol use. Multivariable logistic regression analysis indicated that nonhazardous drinking (adjusted odds ratio [AOR] = 1.78; confidence interval [CI 95%]: 1.10-2.88) and hazardous drinking (AOR = 2.58; CI: 1.60-4.16) were associated with interest, controlling for age, gender, education, and drug use. Regarding mobile technology use, most of the sample reported smartphone ownership (56%), text messaging (89%), and at least one cell phone app (69%). CONCLUSIONS Regardless of drinking level, overall mobile technology use among PLWH was moderate, whereas PLWH who consumed alcohol expressed greater interest in a cell phone app to self-manage alcohol use. This indicates that many PLWH who drink would be interested in and prepared for a mobile technology-based intervention to reduce alcohol consumption.

Impact of the CMS No-Pay Policy on Hospital-Acquired Fall Prevention Related Practice Patterns

Abstract Background and Objectives In October 2008, the Centers for Medicare & Medicaid Services (CMS) stopped reimbursing hospitals for costs related to patient falls. This study aimed to examine whether the CMS no-pay policy influenced four fall prevention practices: bed alarms, sitters, room changes, and physical restraints. Research Design and Methods Using electronic medical record data collected from four hospitals between 2005 and 2010, this secondary observational analysis examined the associations between the CMS no-pay policy and nursing interventions and medical orders related to fall prevention. Multivariable generalized linear mixed models with logit link function and accommodation for matching was used to assess the associations between the CMS no-pay policy and nursing interventions and medical orders. Results After the CMS policy change, nurses were more likely to perform one or more fall-related interventions (adjusted odds ratio (aOR): 1.667; 95% confidence interval (CI): 1.097–2.534). Of the four prevention practices, the use of bed alarms (aOR: 2.343; 95% CI: 1.409–3.897) increased significantly after the CMS policy change. Discussion and Implications The CMS no-pay policy increased utilization of fall prevention strategies despite little evidence that these measures prevent falls.

Beyond positivism: Understanding and addressing childhood obesity disparities through a Critical Theory perspective

PURPOSE We apply Critical Theory to examine menu labeling with the aim of uncovering important implications for nursing practice, research, and policy. CONCLUSIONS Our critical analysis uncovers barriers to menu labelings effectiveness, particularly for vulnerable populations. Nurses must work to minimize the impact of these barriers and optimize the effectiveness of menu labeling, in order to strengthen the fight against obesity. PRACTICE IMPLICATIONS We suggest changes, guided by this critical analysis, which can be implemented by nurses working in clinical practice, research, and policy.

Benefits and Risks in Secondary Use of Digitized Clinical Data: Views of Community Members Living in a Predominantly Ethnic Minority Urban Neighborhood

Background: There is potential to increase the speed of scientific discovery and implement personalized health care by using digitized clinical data collected on the patient care experience. The use of these data in research raises concerns about the privacy and confidentiality of personal health information. This study explored community members’ views on the secondary use of digitized clinical data to (1) recruit participants for clinical studies; (2) recruit family members of persons with an index condition for primary studies; and (3) conduct studies of information related to stored biospecimens. Methods: A qualitative descriptive design was used to examine the bioethical issues outlined from the perspective of urban-dwelling community members. Focus groups were used for data collection, and emergent content analysis was employed to organize and interpret the data. Results: Thirty community members attended one of four focus groups ranging in size from 4 to 11 participants. Five critical themes emerged from the focus-group material: (1) perceived motivators for research participation; (2) objective or “real-life” barriers to research participation; (3) a psychological component of uncertainty and mistrust; (4) preferred mechanisms for recruitment and participation; and (5) cultural characteristics that can impact understanding and willingness to engage in research. Conclusions: The overriding concern of community members regarding research participation and/or secondary clinical and nonclinical use of digitized information was that their involvement would be safe and the outcome would be meaningful to them and to others. According to participants, biospecimens acquired during routine clinical visits or for research are no longer possessions of the participant. Although the loss of privacy was a concern for participants, they preferred that researchers access their personal health information using a digitized clinical file rather than through a paper-based medical record.