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- Cancer (1)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 13 of 13 Research Studies DisplayedDesai AD, Wang G, Wignall J
User-centered design of a longitudinal care plan for children with medical complexity.
This study’s goal was to determine content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with complex medical conditions (CMC) in acute care settings. Thirty iterative one-on-one design sessions with 10 caregivers and 20 providers were conducted. There was high within-group variability in content preferences among caregivers compared to provider groups. The authors identified 6 design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.
AHRQ-funded; HS024299.
Citation: Desai AD, Wang G, Wignall J .
User-centered design of a longitudinal care plan for children with medical complexity.
J Am Med Inform Assoc 2020 Dec 9;27(12):1860-70. doi: 10.1093/jamia/ocaa193..
Keywords: Children/Adolescents, Chronic Conditions, Electronic Health Records (EHRs), Health Information Technology (HIT), Care Coordination, Caregiving
Casillas A, Cemballi AG, Abhat A
An untapped potential in primary care: semi-structured interviews with clinicians on how patient portals will work for caregivers in the safety net.
Researchers used qualitative methods to explore safety net providers' perspectives on portal use among caregivers for their patients. They found that providers recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. Further, caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency.
AHRQ-funded; HS022408; HS022561.
Citation: Casillas A, Cemballi AG, Abhat A .
An untapped potential in primary care: semi-structured interviews with clinicians on how patient portals will work for caregivers in the safety net.
J Med Internet Res 2020 Jul 20;22(7):e18466. doi: 10.2196/18466..
Keywords: Primary Care, Caregiving, Electronic Health Records (EHRs), Health Information Technology (HIT)
Latulipe C, Mazumder SF, Wilson RKW
Security and privacy risks associated with adult patient portal accounts in US hospitals.
The authors sought to identify the proportions of hospitals that provide proxy accounts to caregivers of adult patients, endorse password sharing with caregivers, and enable patients to restrict the types of information seen by their caregivers. They found that almost half of surveyed hospital personnel recommended password sharing and that few hospitals enabled patients to limit the types of information seen by those with proxy access. They concluded that hospitals and electronic health record vendors need to improve the availability and setup process of proxy accounts in a way that allows caregivers to care for patients without violating their privacy.
AHRQ-funded; HS021679.
Citation: Latulipe C, Mazumder SF, Wilson RKW .
Security and privacy risks associated with adult patient portal accounts in US hospitals.
JAMA Intern Med 2020 Jun;180(6):845-9. doi: 10.1001/jamainternmed.2020.0515..
Keywords: Electronic Health Records (EHRs), Health Information Technology (HIT), Caregiving, Hospitals
Ramirez-Zohfeld V, Seltzer A, Xiong L
Use of electronic health records by older adults, 85 years and older, and their caregivers.
Healthcare providers may not offer patient portal (PP) access to electronic health records (EHRs) to their patients older than 85 years, due to the false impression that they do not utilize technology. It is imperative that older adults be given equal opportunity to use technology in regard to their healthcare. The objective of this study was to characterize the content and frequency of use of PP messaging tethered to EHRs by older adults, aged 85 years and older, and their caregivers.
AHRQ-funded; HSO24071.
Citation: Ramirez-Zohfeld V, Seltzer A, Xiong L .
Use of electronic health records by older adults, 85 years and older, and their caregivers.
J Am Geriatr Soc 2020 May;68(5):1078-82. doi: 10.1111/jgs.16393..
Keywords: Electronic Health Records (EHRs), Health Information Technology (HIT), Elderly, Caregiving
De Marchis EH, Hessler D, Fichtenberg C
Part I: A quantitative study of social risk screening acceptability in patients and caregivers.
This study evaluated patient and caregiver acceptability of social risk screening. Adult patients and the adult caregivers of pediatric patients were recruited from primary care clinics and emergency departments across nine states for a survey; survey items included the Center for Medicare and Medicaid Innovation Accountable Health Communities' social risk screening tool and questions about the appropriateness of screening and including social risk data in electronic health records. Results showed that a strong majority of surveyed patients and caregivers found social risk screening to be appropriate. Most also felt comfortable including social risk data in electronic health records. The researchers conclude that lack of patient acceptability is unlikely to be a major implementation barrier.
AHRQ-funded; HS026664.
Citation: De Marchis EH, Hessler D, Fichtenberg C .
Part I: A quantitative study of social risk screening acceptability in patients and caregivers.
Am J Prev Med 2019 Dec;57(6 Suppl 1):S25-s37. doi: 10.1016/j.amepre.2019.07.010..
Keywords: Children/Adolescents, Caregiving, Screening, Social Determinants of Health, Electronic Health Records (EHRs), Health Information Technology (HIT)
Ancker JS, Sharko M, Hong M
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
Parents routinely access young children's medical records, but medical societies strongly recommend confidential care during adolescence, and most medical centers restrict parental records access during the teen years. In this study, the investigators sought to assess public opinion about adolescent medical privacy. The investigators concluded that although medical societies recommend confidential care for adolescents, public opinion was largely in favor of parental access.
AHRQ-funded; HS021531.
Citation: Ancker JS, Sharko M, Hong M .
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
J Am Med Inform Assoc 2018 Dec;25(12):1593-99. doi: 10.1093/jamia/ocy120..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Policy
Fauer AJ, Hoodin F, Lalonde E
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
The authors of this article developed BMT Roadmap, a health information technology application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. They conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric hematopoietic stem cell transplantation (HSCT) patients and registered the study on ClinicalTrials.gov. They found that BMT Roadmap was a feasible intervention to implement in HSCT caregivers, associated with increased activation and decreased burden; quality of life, however, was lowered across hospitalization. The authors conclude that their findings support the need for further development of caregiver-specific self-directed resources and provision for both inpatient and outpatient across the HSCT trajectory.
AHRQ-funded; HS023613.
Citation: Fauer AJ, Hoodin F, Lalonde E .
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
Support Care Cancer 2019 Jun;27(6):2103-12. doi: 10.1007/s00520-018-4450-4..
Keywords: Cancer, Caregiving, Children/Adolescents, Electronic Health Records (EHRs), Health Information Technology (HIT), Quality of Life, Transplantation
Asan O, Scanlan MC, Crotty B
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
The objective of this study was to explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. The investigators suggest that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but also note potential drawbacks.
AHRQ-funded; HS023626.
Citation: Asan O, Scanlan MC, Crotty B .
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
Pediatr Crit Care Med 2019 May;20(5):435-41. doi: 10.1097/pcc.0000000000001895..
Keywords: Caregiving, Children/Adolescents, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Hospitals, Intensive Care Unit (ICU), Patient and Family Engagement
Kelly MM, Thurber AS, Coller RJ
Parent perceptions of real-time access to their hospitalized child's medical records using an inpatient portal: a qualitative study.
In this study, the authors’ objectives were to identify why parents used an inpatient portal application on a tablet computer during their child's hospitalization and identify their perspectives of ways to optimize the technology. The investigators concluded that providing parents with real-time clinical information during their child's hospitalization using an inpatient portal may enhance their ability to engage in caregiving tasks critical to ensuring inpatient care quality and safety.
Citation: Kelly MM, Thurber AS, Coller RJ .
Parent perceptions of real-time access to their hospitalized child's medical records using an inpatient portal: a qualitative study.
Hosp Pediatr 2019 Apr;9(4):273-80. doi: 10.1542/hpeds.2018-0166..
Keywords: Children/Adolescents, Caregiving, Hospitalization, Electronic Health Records (EHRs), Health Information Technology (HIT), Clinician-Patient Communication
Latulipe C, Quandt SA, Melius KA
Insights into older adult patient concerns around the caregiver proxy portal use: qualitative interview study.
The objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers. The investigators concluded that patients shared their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but were unaware of all the information those caregivers could access. They suggest that better portal design could alleviate these unwanted information disclosures.
AHRQ-funded; HS021679.
Citation: Latulipe C, Quandt SA, Melius KA .
Insights into older adult patient concerns around the caregiver proxy portal use: qualitative interview study.
J Med Internet Res 2018 Nov 2;20(11):e10524. doi: 10.2196/10524..
Keywords: Electronic Health Records (EHRs), Elderly, Health Information Technology (HIT), Caregiving
Taylor JO, Hartzler AL, Osterhage KP
Monitoring for change: the role of family and friends in helping older adults manage personal health information.
Although family and friends (FF) often play a significant support role in the health of older adults (OA), little is known about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, the investigators described the work, needs, and barriers of FF in the context of PHIM for OAs.
AHRQ-funded; HS022106.
Citation: Taylor JO, Hartzler AL, Osterhage KP .
Monitoring for change: the role of family and friends in helping older adults manage personal health information.
J Am Med Inform Assoc 2018 Aug;25(8):989-99. doi: 10.1093/jamia/ocy037..
Keywords: Caregiving, Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT)
Duckworth M, Leung E, Fuller T
Nurse, patient, and care partner perceptions of a personalized safety plan screensaver.
A patient safety plan dashboard was developed that captures disparate data from the electronic health record that is then displayed as a personalized bedside screensaver. End user perceptions of the content and interface of the personalized safety plan screensavers were identified and strategies to overcome the barriers to use for future iterations were defined. Differences emerged stemming from each group of end users' role on the care team.
AHRQ-funded; HS023535.
Citation: Duckworth M, Leung E, Fuller T .
Nurse, patient, and care partner perceptions of a personalized safety plan screensaver.
J Gerontol Nurs 2017 Apr;43(4):15-22. doi: 10.3928/00989134-20170313-05.
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Keywords: Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT), Caregiving, Patient Safety, Patient and Family Engagement, Care Coordination
Crotty BH, Walker J, Dierks M
Information sharing preferences of older patients and their families.
This study identified how patients older than 75 years (hereinafter, elders) and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals. It found that information sharing and control are complex issues even under the most well-meaning circumstances. While elders may delegate control and share information with family, they want to retain granular control of their information.
AHRQ-funded; HS021495.
Citation: Crotty BH, Walker J, Dierks M .
Information sharing preferences of older patients and their families.
JAMA Intern Med 2015 Sep;175(9):1492-7. doi: 10.1001/jamainternmed.2015.2903..
Keywords: Caregiving, Clinician-Patient Communication, Communication, Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT)