scholarly journals Implementing and Utilizing the Personal Health Library (PHL) to Enable True Care Integration and Management (Preprint)

2020 ◽  
Author(s):  
Nariman Ammar ◽  
James E Bailey ◽  
Robert L Davis ◽  
Arash Shaban-Nejad
Keyword(s):  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Linked Data ◽  
Digital Health ◽  
Single Point ◽  
Personal Health ◽  
Care Providers ◽  
Care Integration ◽  
Modern Development

BACKGROUND Traditionally, health data management has been EMR-based and mostly handled by health care providers. Mechanisms are needed to give patients more control over their health conditions. Personal Health Libraries (PHLs) provide a single point of secure access to patients' digital health information that can help empower patients to make better-informed decisions about their health. OBJECTIVE This article reports our efforts on leveraging tools and methods from artificial intelligence and knowledge representation to construct a private, decentralized PHL that supports interoperability and, ultimately, true care integration. Also, it describes the technological infrastructures required to build Hybrid Recommendation Systems that query the PHL to deliver tailored push notification interventions focused on improving self-care behaviors in diabetic and cancer adults from underserved communities. METHODS For the construction and management of the PHL, we leverage several technological infrastructures, including the Social Linked Data (Solid) platform, which builds on the W3C protocol standard and vocabularies as well as the Linked Open Data Stack. Solid enriches the Linked Data stack with modern development tools including JavaScript-based frameworks (e.g., React), which makes both integration tasks using APIs and building Solid enabled applications a seamless experience. RESULTS To showcase the framework functionalities we present a prototype design and demonstrate the main features through two use case scenarios motivated both by requirements identified in the literature and by recommendations from Physicians from both Hematology and Preventive medicine fields at two children’s hospitals in Memphis, TN. CONCLUSIONS The proposed platform incorporates social determinants of health (SDoH) and ODLs in addition to digital health information to provide insights for informing both therapeutic and preventive interventions in chronic disease management. The PHL helps patients and their caregivers take a central role in making decisions regarding their health and equips health care providers with informatics tools to support the collection and interpretation of the collected knowledge

scholarly journals Patient portals and personal health information online: perception, access, and use by US adults

2016 ◽  
Vol 24 (e1) ◽  
pp. e173-e177 ◽  
Author(s):  
Sue Peacock ◽  
Ashok Reddy ◽  
Suzanne G Leveille ◽  
Jan Walker ◽  
Thomas H Payne ◽  
...  
Keyword(s):  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Race And Ethnicity ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Patient Portals ◽  
The Past ◽  
Patient Race

Background: Access to online patient portals is key to improving care, but we have limited understanding of patient perceptions of online portals and the characteristics of people who use them. Methods: Using a national survey of 3677 respondents, we describe perceptions and utilization of online personal health information (PHI) portals. Results: Most respondents (92%) considered online PHI access important, yet only 34% were offered access to online PHI by a health care provider, and just 28% accessed online PHI in the past year. While there were no differences across race or ethnicity in importance of access, black and Hispanic respondents were significantly less likely to be offered access (P = .006 and <.001, respectively) and less likely to access their online PHI (P = .041 and <.001, respectively) compared to white and non-Hispanic respondents. Conclusion: Health care providers are crucial to the adoption and use of online patient portals and should be encouraged to offer consistent access regardless of patient race and ethnicity.

scholarly journals Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis

JMIR Cancer ◽  
10.2196/17352 ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e17352
Author(s):  
Alexandra Greenberg-Worisek ◽  
Liaa Ferede ◽  
Joyce Balls-Berry ◽  
Ian Marigi ◽  
Emily Valentin Mendez ◽  
...  
Keyword(s):  
Health Care ◽  
Information Technology ◽  
Cancer Patients ◽  
Health Information Technology ◽  
Health Information ◽  
Health Care Providers ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Rural And Urban

Background Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. Objective Few studies have explored whether there is a difference in cancer patients’ current use of health information technology tools by residential location. Methods Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. Results Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). Conclusions The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions.

Correlates of Willingness to Share Data from Wearable Health and Activity Trackers: Analysis of 2019 Health Information National Trends Survey Data (Preprint)

2021 ◽  
Author(s):  
Camella J. Rising ◽  
Anna Gaysynsky ◽  
Kelly D. Blake ◽  
Roxanne E. Jensen ◽  
April Oh
Keyword(s):  
Physical Activity ◽  
Health Care ◽  
Health Behaviors ◽  
Health Information ◽  
Health Care Providers ◽  
Digital Health ◽  
Care Providers ◽  
Activity Trackers ◽  
Share Data ◽  
National Trends

BACKGROUND Sharing data from wearable health and activity trackers with others (e.g., health care providers, family, friends) may improve health and behavioral outcomes of wearable users by generating social support and supporting health self-management competency. Investigating individual factors that influence US adults’ willingness to share wearable data with different types of individuals may provide insights about population subgroups most or least likely to benefit from wearable interventions. Specifically, identifying digital health behaviors potentially associated with willingness to share wearable data is needed given that use and engagement with various technologies may broadly influence online health information-sharing behaviors. OBJECTIVE To identify sociodemographic, health, and digital health behavior correlates of US adults’ willingness to share wearable data with health care providers and with family or friends. METHODS Data for the analytic sample (N=1300) were obtained from the National Cancer Institute’s 2019 Health Information National Trends Survey. Digital health behavior measures included frequency of wearable use, use of smartphones or tablets to help communicate with providers, use of social networking sites to share health information, and participating in an online health community. Multivariable logistic regression analysis of weighted data examined associations between digital health behaviors and willingness to share wearable data, controlling for sociodemographics and health-related characteristics. RESULTS A majority of US adults were willing to share wearable data with providers (81.86%) and with family or friends (69.51%). Those who reported higher health self-efficacy (odds ratio [OR] 1.97, 95% CI 1.11, 3.51), higher level of trust in providers as a source of health information (OR 1.98, 95% CI 1.12, 3.49), and higher level of physical activity (OR 2.00, 95% CI 1.21, 3.31) had greater odds of reported willingness to share data with providers. Additionally, those with higher frequency of wearable use (OR 2.15, 95% CI 1.35, 3.43) and reported use of smartphones or tablets to help communicate with providers (OR 1.99, 95% CI 1.09, 3.63) had greater odds of reported willingness to share with providers. Only higher level of physical activity was associated with greater odds of reported willingness to share wearable data with family or friends (OR 1.70, 95% CI 1.02, 2.84). CONCLUSIONS Findings of this study suggest that, among US adult wearable users, behavior-related factors, rather than sociodemographic characteristics, are key drivers of willingness to share health information from wearables with others. Moreover, behavioral correlates of willingness to share wearable data are unique to the type of recipient (i.e., providers vs. family or friends). Future studies could use these findings to inform development of interventions that aim to improve use of patient-generated data from wearable devices in health care settings, in particular.

scholarly journals Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis (Preprint)

2019 ◽  
Author(s):  
Alexandra Greenberg-Worisek ◽  
Liaa Ferede ◽  
Joyce Balls-Berry ◽  
Ian Marigi ◽  
Emily Valentin Mendez ◽  
...  
Keyword(s):  
Health Care ◽  
Information Technology ◽  
Cancer Patients ◽  
Health Information Technology ◽  
Health Information ◽  
Health Care Providers ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Rural And Urban

BACKGROUND Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. OBJECTIVE Few studies have explored whether there is a difference in cancer patients’ current use of health information technology tools by residential location. METHODS Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. RESULTS Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). CONCLUSIONS The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions.

scholarly journals Using a Personal Health Library–Enabled mHealth Recommender System for Self-Management of Diabetes Among Underserved Populations: Use Case for Knowledge Graphs and Linked Data

10.2196/24738 ◽  
2021 ◽  
Vol 5 (3) ◽  
pp. e24738
Author(s):  
Nariman Ammar ◽  
James E Bailey ◽  
Robert L Davis ◽  
Arash Shaban-Nejad
Keyword(s):  
Health Care Providers ◽  
Linked Data ◽  
Digital Health ◽  
Health Data ◽  
Self Management ◽  
Personal Health ◽  
User Requirements ◽  
Use Case ◽  
Care Providers ◽  
Case Scenario

Background Traditionally, digital health data management has been based on electronic health record (EHR) systems and has been handled primarily by centralized health providers. New mechanisms are needed to give patients more control over their digital health data. Personal health libraries (PHLs) provide a single point of secure access to patients' digital health data and enable the integration of knowledge stored in their digital health profiles with other sources of global knowledge. PHLs can help empower caregivers and health care providers to make informed decisions about patients’ health by understanding medical events in the context of their lives. Objective This paper reports the implementation of a mobile health digital intervention that incorporates both digital health data stored in patients’ PHLs and other sources of contextual knowledge to deliver tailored recommendations for improving self-care behaviors in diabetic adults. Methods We conducted a thematic assessment of patient functional and nonfunctional requirements that are missing from current EHRs based on evidence from the literature. We used the results to identify the technologies needed to address those requirements. We describe the technological infrastructures used to construct, manage, and integrate the types of knowledge stored in the PHL. We leverage the Social Linked Data (Solid) platform to design a fully decentralized and privacy-aware platform that supports interoperability and care integration. We provided an initial prototype design of a PHL and drafted a use case scenario that involves four actors to demonstrate how the proposed prototype can be used to address user requirements, including the construction and management of the PHL and its utilization for developing a mobile app that queries the knowledge stored and integrated into the PHL in a private and fully decentralized manner to provide better recommendations. Results To showcase the main features of the mobile health app and the PHL, we mapped those features onto a framework comprising the user requirements identified in a use case scenario that features a preventive intervention from the diabetes self-management domain. Ongoing development of the app requires a formative evaluation study and a clinical trial to assess the impact of the digital intervention on patient-users. We provide synopses of both study protocols. Conclusions The proposed PHL helps patients and their caregivers take a central role in making decisions regarding their health and equips their health care providers with informatics tools that support the collection and interpretation of the collected knowledge. By exposing the PHL functionality as an open service, we foster the development of third-party applications or services and provide motivational technological support in several projects crossing different domains of interest.

Patients' Perceptions of Different Information Exchange Mechanisms: An Exploratory Study in the United States

2020 ◽  
Vol 59 (04/05) ◽  
pp. 162-178
Author(s):  
Pouyan Esmaeilzadeh
Keyword(s):  
United States ◽  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Information Exchange ◽  
The United States ◽  
Exchange Mechanism ◽  
Care Providers ◽  
Security Risks ◽  
Direct Exchange

Abstract Background Patients may seek health care services from various providers during treatment. These providers could serve in a network (affiliated) or practice separately (unaffiliated). Thus, using secure and reliable health information exchange (HIE) mechanisms would be critical to transfer sensitive personal health information (PHI) across distances. Studying patients' perceptions and opinions about exchange mechanisms could help health care providers build more complete HIEs' databases and develop robust privacy policies, consent processes, and patient education programs. Objectives Due to the exploratory nature of this study, we aim to shed more light on public perspectives (benefits, concerns, and risks) associated with the four data exchange practices in the health care sector. Methods In this study, we compared public perceptions and expectations regarding four common types of exchange mechanisms used in the United States (i.e., traditional, direct, query-based, patient-mediated exchange mechanisms). Traditional is an exchange through fax, paper mailing, or phone calls, direct is a provider-to-provider exchange, query-based is sharing patient data with a central repository, and patient-mediated is an exchange mechanism in which patients can access data and monitor sharing. Data were collected from 1,624 subjects using an online survey to examine the benefits, risks, and concerns associated with the four exchange mechanisms from patients' perspectives. Results Findings indicate that several concerns and risks such as privacy concerns, security risks, trust issues, and psychological risks are raised. Besides, multiple benefits such as access to complete information, communication improvement, timely and convenient information sharing, cost-saving, and medical error reduction are highlighted by respondents. Through consideration of all risks and benefits associated with the four exchange mechanisms, the direct HIE mechanism was selected by respondents as the most preferred mechanism of information exchange among providers. More than half of the respondents (56.18%) stated that overall they favored direct exchange over the other mechanisms. 42.70% of respondents expected to be more likely to share their PHI with health care providers who implemented and utilized a direct exchange mechanism. 43.26% of respondents believed that they would support health care providers to leverage a direct HIE mechanism for sharing their PHI with other providers. The results exhibit that individuals expect greater benefits and fewer adverse effects from direct HIE among health care providers. Overall, the general public sentiment is more in favor of direct data transfer. Our results highlight that greater public trust in exchange mechanisms is required, and information privacy and security risks must be addressed before the widespread implementation of such mechanisms. Conclusion This exploratory study's findings could be interesting for health care providers and HIE policymakers to analyze how consumers perceive the current exchange mechanisms, what concerns should be addressed, and how the exchange mechanisms could be modified to meet consumers' needs.

Digital Health Engagement in the US Population: Insights From the 2018 Health Information National Trends Survey

2021 ◽  
pp. e1-e4
Author(s):  
Chelsea L. Ratcliff ◽  
Melinda Krakow ◽  
Alexandra Greenberg-Worisek ◽  
Bradford W. Hesse
Keyword(s):  
Public Health ◽  
Health Information ◽  
Health Care Providers ◽  
Digital Health ◽  
Smart Device ◽  
P Value ◽  
Care Providers ◽  
Cross Sectional ◽  
The Us ◽  
National Trends

Objectives. To examine prevalence and predictors of digital health engagement among the US population. Methods. We analyzed nationally representative cross-sectional data on 7 digital health engagement behaviors, as well as demographic and socioeconomic predictors, from the Health Information National Trends Survey (HINTS 5, cycle 2, collected in 2018; n = 2698–3504). We fitted multivariable logistic regression models using weighted survey responses to generate population estimates. Results. Digitally seeking health information (70.14%) was relatively common, whereas using health apps (39.53%) and using a digital device to track health metrics (35.37%) or health goal progress (38.99%) were less common. Digitally communicating with one’s health care providers (35.58%) was moderate, whereas sharing health data with providers (17.20%) and sharing health information on social media (14.02%) were uncommon. Being female, younger than 65 years, a college graduate, and a smart device owner positively predicted several digital health engagement behaviors (odds ratio range = 0.09–4.21; P value range < .001–.03). Conclusions. Many public health goals depend on a digitally engaged populace. These data highlight potential barriers to 7 key digital engagement behaviors that could be targeted for intervention. (Am J Public Health. Published online ahead of print May 20, 2021: e1–e4. https://doi.org/10.2105/AJPH.2021.306282 )

scholarly journals Continuity of care in Ghana: the promise of smart-med

2014 ◽  
Vol 3 (4) ◽  
pp. 473
Author(s):  
Henry Ogoe ◽  
Odame Agyapong ◽  
Fredrick Troas Lutterodt
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Continuity Of Care ◽  
Medical Information ◽  
Care Delivery ◽  
Personal Health Records ◽  
Personal Health ◽  
Care Providers ◽  
Health Records ◽  
Fragmentation Of Care

Individuals tend to receive medical care from different health care providers as they drift from one location to another. Oftentimes, multiple providers operate disparate systems of managing patients medical records. These disparate systems, which are unable to share and/or exchange information, have the propensity to create fragmentation of care, which poses a serious threat to the realization of continuity of care in the Ghanaian health care delivery. Continuity of care, which is the ability to seamlessly access, update, and manage patients medical information as they visit multiple providers, is a crucial component of quality of care in any health delivery system. The current system of managing patients records in Ghanapaper-basedmakes continuity of care difficult to actualize. To this end, we have developed a smartcard based personal health records system, SMART-MED, which can effectively promote continuity of care in Ghana. SMART-MED is platform-independent; it can run as standalone or configured to plug into any Java-based electronic medical record system. Results of a lab simulation test suggest that it can effectively promote continuity of care through improved data security, support interoperability for disparate systems, and seamless access and update of patients health records. Keywords: Continuity of Care, Fragmentation of Care, Interoperability, Personal Health Records, Smartcard.

scholarly journals Use and Effects of Patient Access to Medical Records in General Practice Through a Personal Health Record in the Netherlands: Protocol for a Mixed-Methods Study

10.2196/10193 ◽  
2018 ◽  
Vol 7 (9) ◽  
pp. e10193 ◽  
Author(s):  
Maria MT Vreugdenhil ◽  
Rudolf B Kool ◽  
Kees van Boven ◽  
Willem JJ Assendelft ◽  
Jan AM Kremer
Keyword(s):  
Health Care ◽  
General Practice ◽  
Health Care Providers ◽  
Personal Health Record ◽  
Mixed Methods Study ◽  
Personal Health ◽  
Care Providers ◽  
Group Discussions ◽  
Web Based ◽  
Staff Level

Background In the Dutch health care system, general practitioners hold a central position. They store information from all health care providers who are involved with their patients in their electronic health records. Web-based access to the summary record in general practice through a personal health record (PHR) may increase patients’ insight into their medical conditions and help them to be involved in their care. Objective We describe the protocol that we will use to investigate the utilization of patients’ digital access to the summary of their medical records in general practice through a PHR and its effects on the involvement of patients in their care. Methods We will conduct a multilevel mixed-methods study in which the PHR and Web-based access to the summary record will be offered for 6 months to a random sample of 500 polypharmacy patients, 500 parents of children aged <4 years, and 500 adults who do not belong to the former two groups. At the patient level, a controlled before-after study will be conducted using surveys, and concurrently, qualitative data will be collected from focus group discussions, think-aloud observations, and semistructured interviews. At the general practice staff (GP staff) level, focus group discussions will be conducted at baseline and Q-methodology inquiries at the end of the study period. The primary outcomes at the patient level are barriers and facilitators for using the PHR and summary records and changes in taking an active role in decision making and care management and medication adherence. Outcomes at the GP staff level are attitudes before and opinions after the implementation of the intervention. Patient characteristics and changes in outcomes related to patient involvement during the study period will be compared between the users and nonusers of the intervention using chi-square tests and t tests. A thematic content analysis of the qualitative data will be performed, and the results will be used to interpret quantitative findings. Results Enrollment was completed in May 2017 and the possibility to view GP records through the PHR was implemented in December 2017. Data analysis is currently underway and the first results are expected to be submitted for publication in autumn 2019. Conclusions We expect that the findings of this study will be useful to health care providers and health care organizations that consider introducing the use of PHR and Web-based access to records and to those who have recently started using these. Trial Registration Netherlands Trial Registry NTR6395; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6395 (Archived by WebCite at http://www.webcitation.org/71nc8jzwM) Registered Report Identifier RR1-10.2196/10193

scholarly journals Development and Evaluation of a New Security and Privacy Track in a Health Informatics Graduate Program: Multidisciplinary Collaboration in Education (Preprint)

2017 ◽  
Author(s):  
Leming Zhou ◽  
Bambang Parmanto ◽  
James Joshi
Keyword(s):  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Health Informatics ◽  
Graduate Program ◽  
New Technologies ◽  
Security And Privacy ◽  
Care Providers ◽  
Widespread Application ◽  
Mobile Health Apps

BACKGROUND The widespread application of technologies such as electronic health record systems, mobile health apps, and telemedicine platforms, has made it easy for health care providers to collect relevant data and deliver health care regimens. While efficacious, these new technologies also pose serious security and privacy challenges. OBJECTIVE The training program described here aims at preparing well-informed health information security and privacy professionals with enhanced course materials and various approaches. METHODS A new educational track has been built within a health informatics graduate program. Several existing graduate courses have been enhanced with new security and privacy modules. New labs and seminars have been created, and students are being encouraged to participate in research projects and obtain real-world experience from industry partners. Students in this track receive both theoretical education and hands-on practice. Evaluations have been performed on this new track by conducting multiple surveys on a sample of students. RESULTS We have succeeded in creating a new security track and developing a pertinent curriculum. The newly created security materials have been implemented in multiple courses. Our evaluation indicated that students (N=72) believed that receiving security and privacy training was important for health professionals, the provided security contents were interesting, and having the enhanced security and privacy training in this program was beneficial for their future career. CONCLUSIONS The security and privacy education for health information professionals in this new security track has been significantly enhanced.

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