IU Indianapolis ScholarWorks :: Browsing by Subject "Patient engagement"

Browsing by Subject "Patient engagement"

Now showing 1 - 10 of 17

Data collection challenges in community settings: Insights from two field studies of patients with chronic disease
(Springer, 2015-05) Holden, Richard J.; McDougald Scott, Amanda M.; Hoonakker, Peter L.T.; Hundt, Ann S.; Carayon, Pascale; Department of Biohealth Informatics, School of Informatics and Computing
Purpose Collecting information about health and disease directly from patients can be fruitfully accomplished using contextual approaches, ones that combine more and less structured methods in home and community settings. This paper's purpose is to describe and illustrate a framework of the challenges of contextual data collection. Methods A framework is presented based on prior work in community-based participatory research and organizational science, comprised of ten types of challenges across four broader categories. Illustrations of challenges and suggestions for addressing them are drawn from two mixed-method, contextual studies of patients with chronic disease in two regions of the US. Results The first major category of challenges was concerned with the researcher-participant partnership, for example, the initial lack of mutual trust and understanding between researchers, patients, and family members. The second category concerned patient characteristics such as cognitive limitations and a busy personal schedule that created barriers to successful data collection. The third concerned research logistics and procedures such as recruitment, travel distances, and compensation. The fourth concerned scientific quality and interpretation, including issues of validity, reliability, and combining data from multiple sources. The two illustrative studies faced both common and diverse research challenges and used many different strategies to address them. Conclusion Collecting less structured data from patients and others in the community is potentially very productive but requires the anticipation, avoidance, or negotiation of various challenges. Future work is necessary to better understand these challenges across different methods and settings, as well as to test and identify strategies to address them.
Data Integration and Interoperability for Patient-Centered Remote Monitoring of Cardiovascular Implantable Electronic Devices
(MDPI, 2019-03-17) Daley, Carly; Toscos, Tammy; Mirro, Michael; BioHealth Informatics, School of Informatics and Computing
The prevalence of cardiovascular implantable electronic devices with remote monitoring capabilities continues to grow, resulting in increased volume and complexity of biomedical data. These data can provide diagnostic information for timely intervention and maintenance of implanted devices, improving quality of care. Current remote monitoring procedures do not utilize device diagnostics to their potential, due to the lack of interoperability and data integration among proprietary systems and electronic medical record platforms. However, the development of a technical framework that standardizes the data and improves interoperability shows promise for improving remote monitoring. Along with encouraging the implementation of this framework, we challenge the current paradigm and propose leveraging the framework to provide patients with their remote monitoring data. Patient-centered remote monitoring may empower patients and improve collaboration and care with health care providers. In this paper, we describe the implementation of technology to deliver remote monitoring data to patients in two recent studies. Our body of work explains the potential for developing a patent-facing information display that affords the meaningful use of implantable device data and enhances interactions with providers. This paradigm shift in remote monitoring-empowering the patient with data-is critical to using the vast amount of complex and clinically relevant biomedical data captured and transmitted by implantable devices to full potential.
Developing a Youth Contraception Navigator Program: A Human-Centered Design Approach
(Elsevier, 2022) Wilkinson, Tracey A.; Hawryluk, Bridget; Moore, Courtney; Peipert, Jeffrey F.; Carroll, Aaron E.; Wiehe, Sarah; Fortenberry, J. Dennis; Pediatrics, School of Medicine
Purpose: To determine key elements of a contraception navigator program that provides a personalized approach to overcoming patient-specific barriers by a trained navigator in central Indiana. Methods: A human-centered design approach was used to engage adolescents and community stakeholders in co-design sessions. Sessions incorporated techniques, such as divergent brainwriting and journey maps, which led to the exploration of various themes that were ultimately used to inform key elements of the contraception navigator program. Results: Adolescents aged 15-17 years (N = 35) and community stakeholders (N = 11) participated in co-design sessions. Analysis verified that the process of obtaining contraception for pregnancy prevention could be intimidating for young people. The importance of language, the presence of stigma, and the knowledge of side effects were all discussed. Essential elements of a contraceptive navigator program included building trust to ultimately co-create a plan that can overcome patient-specific barriers. Having a variety of communication methods available, as well as contraceptive side-effect support, will be essential. Discussion: Using human-centered design techniques to engage adolescent and community stakeholders can help inform the development of a contraceptive navigator program. A trusted navigator that can address patient-specific barriers to contraception access both before and after contraception is obtained is a key element identified by stakeholders.
Development and Pilot Evaluation of a Tablet-Based Application to Improve Quality of Care in Child Mental Health Treatment
(JMIR, 2015-12-30) Ruggiero, Kenneth J.; Bunnell, Brian E.; Andrews, Arthur R., III; Davidson, Tatiana M.; Hanson, Rochelle F.; Danielson, Carla Kmett; Saunders, Benjamin E.; Soltis, Kathryn; Yarian, Caleb; Chu, Brian; Adams, Zachary W.; Psychiatry, School of Medicine
Background: Children need access to high quality mental health care. Effective treatments now exist for a wide range of mental health conditions. However, these interventions are delivered with variable effectiveness in traditional mental health service settings. Innovative solutions are needed to improve treatment delivery quality and effectiveness. Objective: The aim of this study was to develop a scalable, sustainable technology-based approach to improve the quality of care in child mental health treatment. Methods: A tablet-based resource was developed with input from mental health training experts, mental health providers, and patients. A series of qualitative data collection phases (ie, expert interviews, patient and provider focus groups, usability testing) guided the initial concept and design of the resource, and then its refinement. The result was an iPad-based "e-workbook" designed to improve child engagement and provider fidelity in implementation of a best-practice treatment. We are currently conducting a small scale randomized controlled trial to evaluate the feasibility of e-workbook facilitated child mental health treatment with 10 providers and 20 families recruited from 4 local community-based mental health clinics. Results: Usability and focus group testing yielded a number of strong, favorable reactions from providers and families. Recommendations for refining the e-workbook also were provided, and these guided several improvements to the resource prior to initiating the feasibility trial, which is currently underway. Conclusions: This study aimed to develop and preliminarily evaluate a tablet-based application to improve provider fidelity and child engagement in child mental health treatment. If successful, this approach may serve as a key step toward making best-practice treatment more accessible to children and families. As various technologies continue to increase in popularity worldwide and within the health care field more specifically, it is essential to rigorously test the usability, feasibility, acceptability, and effectiveness of novel health technology solutions. It is also essential to ensure that patients and providers drive decision making that supports the development of these resources to ensure that they can be seamlessly integrated into practice.
Digital Cohorts Within the Social Mediome: An Approach to Circumvent Conventional Research Challenges?
(Elsevier, 2017-05) Kulanthaivel, Anand; Fogel, Rachel; Jones, Josette; Lammert, Craig; Biohealth Informatics, School of Informatics and Computing
Engagement design in studies on pregnancy and infant health using social media: Systematic review
(Elsevier, 2020-05-08) Shieh, Carol; Khan, Israt; Umoren, Rachel; School of Nursing
Social media utilization is prevalent among reproductive-age women. The literature on how researchers engage women in studies using social media platforms is scarce. This systematic review analyzed participant engagement design in studies using social media and focused on pregnancy and infant health. Methods: A literature search of EBSCO and PubMed databases was conducted. Included studies had to be completed with quantitative data, focus on pregnancy, postpartum or infant health, and use social media in the research process. A matrix of three engagement designs (passive, interactive, independent) and three research processes (recruitment, data analysis, intervention) was used for analysis. Findings: Thirty-one articles that reported 30 studies met the inclusion criteria. Of these, four were randomized controlled trials (RCT), four were non-RCT interventions, and 22 were observational/descriptive studies. The main purpose of using social media was for recruitment (n = 16), data analysis (n = 6), intervention (n = 8), or both recruitment and intervention (n = 1). Passive engagement was a fundamental design approach in all studies to access a data source that was either the participant or the data provided by the participants in social media. Interactive engagement, mostly for recruitment and intervention, was to engage participants in completing study enrollment or in interacting with the study team or fellow participants. Independent engagement involved off-line activities and appeared sporadically in intervention studies. Conclusions: Passive and interactive engagement designs are more frequently used than independent engagement design. Researchers should select suitable designs when studying pregnancy and infant health using social media.
Erratum to: Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study
(Thieme Medical Publishers, 2017-10) Daley, Carly N.; Chen, Elizabeth M.; Roebuck, Amelia E.; Ghahari, Romisa Rohani; Sami, Areej F.; Skaggs, Cayla G.; Carpenter, Maria D.; Mirro, Michael J.; Toscos, Tammy R.; BioHealth Informatics, School of Informatics and Computing
Impact of electronic personal health record use on engagement and intermediate health outcomes among cardiac patients: a quasi-experimental study
(Oxford University Press, 2016-01) Toscos, Tammy; Daley, Carly; Heral, Lisa; Doshi, Riddhi; Chen, Yu-Chieh; Eckert, George J.; Plant, Robert L.; Mirro, Michael J.; Biostatistics, School of Public Health
Objectives: To determine the impact of tethered personal health record (PHR) use on patient engagement and intermediate health outcomes among patients with coronary artery disease (CAD). Methods: Adult CAD patients (N = 200) were enrolled in this prospective, quasi-experimental observational study. Each patient received a PHR account and training on its use. PHRs were populated with information from patient electronic medical records, hosted by a Health Information Exchange. Intermediate health outcomes including blood pressure, body mass index, and hemoglobin A1c (HbA1c) were evaluated through electronic medical record review or laboratory tests. Trends in patient activation measure® (PAM) were determined through three surveys conducted at baseline, 6 and 12 months. Frequency of PHR use data was collected and used to classify participants into groups for analysis: Low, Active, and Super users. Results: There was no statistically significant improvement in patient engagement as measured by PAM scores during the study period. HbA1c levels improved significantly in the Active and Super user groups at 6 months; however, no other health outcome measures improved significantly. Higher PAM scores were associated with lower body mass index and lower HbA1c, but there was no association between changes in PAM scores and changes in health outcomes. Use of the PHR health diary increased significantly following PHR education offered at the 6-month study visit and an elective group refresher course. Conclusions: The study findings show that PHR use had minimal impact on intermediate health outcomes and no significant impact on patient engagement among CAD patients.
Medication transitions: Vulnerable periods of change in need of human factors and ergonomics
(Elsevier, 2021-01) Holden, Richard J.; Abebe, Ephrem; Medicine, School of Medicine
We present a novel view of transitions from the lens of patient ergonomics (the "science of patient work"), which posits that patients and other non-professionals perform effortful work towards health-related goals. In patient work transitions, patients experience changes in, for example, health, task demands, work capacity, roles and responsibilities, knowledge and skills, routines, needs and technologies. Medication transitions are a particularly vulnerable type of patient work transitions. We describe two cases of medication transitions-new medications and medication deprescribing-in which the patient work lens reveals many accompanying changes, vulnerabilities, and opportunities for human factors and ergonomics.
Partnering to Increase Colorectal Cancer Screening: Perspectives of Community Advisory Board Members
(Sage, 2021-10) Rawl, Susan M.; Bailey, Sandra; Cork, Beatrice; Fields, Matthew; Griffin, Thomas; Haunert, Laura; Kline, Judy; Krier, Connie; Lagunes, Juan; Lambert, Ruth L.; Malloy, Caeli; Quick, Jack; Shedd-Steele, Rivienne; Strom, Sylvia; Carter-Harris, Lisa; School of Nursing
The Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as the meaningful involvement of patients, caregivers, clinicians, insurers, and others throughout the entire research process – from planning, to conducting the study, to disseminating study results. The purposes of this paper are to: 1) describe methods used to engage community members across the various phases of a PCORI-funded comparative effectiveness trial to increase colorectal cancer screening; and 2) report results of qualitative and quantitative evaluations of community advisory board members’ experiences on this project. Decisions to join and stay engaged with the study included feeling valued and appreciated, being compensated, the opportunity to contribute to research based on their skills and expertise, and being committed to colon cancer prevention efforts. Challenges identified by advisory board members included the significant time commitment, transportation, and meeting location. Lessons learned and guidance for researchers committed to patient and community engagement are described.

Browsing by Subject "Patient engagement"

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