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.

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 Rapid health data repository allocation using predictive machine learning

2020 ◽  
Vol 26 (4) ◽  
pp. 3009-3036
Author(s):  
Md Ashraf Uddin ◽  
Andrew Stranieri ◽  
Iqbal Gondal ◽  
Venki Balasubramanian
Keyword(s):  
Machine Learning ◽  
Health Care Providers ◽  
Digital Health ◽  
Wearable Sensors ◽  
Health Data ◽  
Small Samples ◽  
Data Repository ◽  
Care Providers ◽  
Storage Allocation ◽  
Health Records

Health-related data is stored in a number of repositories that are managed and controlled by different entities. For instance, Electronic Health Records are usually administered by governments. Electronic Medical Records are typically controlled by health care providers, whereas Personal Health Records are managed directly by patients. Recently, Blockchain-based health record systems largely regulated by technology have emerged as another type of repository. Repositories for storing health data differ from one another based on cost, level of security and quality of performance. Not only has the type of repositories increased in recent years, but the quantum of health data to be stored has increased. For instance, the advent of wearable sensors that capture physiological signs has resulted in an exponential growth in digital health data. The increase in the types of repository and amount of data has driven a need for intelligent processes to select appropriate repositories as data is collected. However, the storage allocation decision is complex and nuanced. The challenges are exacerbated when health data are continuously streamed, as is the case with wearable sensors. Although patients are not always solely responsible for determining which repository should be used, they typically have some input into this decision. Patients can be expected to have idiosyncratic preferences regarding storage decisions depending on their unique contexts. In this paper, we propose a predictive model for the storage of health data that can meet patient needs and make storage decisions rapidly, in real-time, even with data streaming from wearable sensors. The model is built with a machine learning classifier that learns the mapping between characteristics of health data and features of storage repositories from a training set generated synthetically from correlations evident from small samples of experts. Results from the evaluation demonstrate the viability of the machine learning technique used.

scholarly journals “We are very individual”: Anticipated effects on stroke survivors of using their person-generated health data (Preprint)

2019 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Care ◽  
Health Services ◽  
Focus Groups ◽  
Health Care Providers ◽  
Digital Health ◽  
Stroke Care ◽  
Health Data ◽  
Stroke Survivors ◽  
Care Providers ◽  
Patient Reported

BACKGROUND Person-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may have changes in their engagement with their own health care, their relationship with their healthcare providers, and their sense of social support and connectedness. Research into evaluating those reported effects however, has not kept up; thus a method for developing patient-reported outcome measures (PROMs) of utilising PGHD, called the PROM-PGHD Development Method, was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems (K-SRS). A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform health care providers on decisions about stroke care, and thereby improve health outcomes. Moreover, eliciting the input of stroke survivors is important because there could be differences in their perspectives and that of their care providers, regarding treatment and management. OBJECTIVE This paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology. METHODS This study gathered the perspectives of six stroke survivors and five clinicians through three focus groups and three interviews, recruited for convenience. In the stroke survivors’ focus groups, participants were asked to give their perspectives on how using the PGHD from Jintronix may affect their outcomes; while in the clinicians’ focus group, clinicians were asked for their perspectives on how PGHD use may affect the outcomes of stroke survivors. Participants were also asked questions intended to encourage them to comment on the initial items of the PROM-PGHD. Deductive thematic analysis was performed. RESULTS Survivors and clinicians had varying perspectives in three of the six themes presented, and puts emphasis on the importance of allowing stroke survivors to participate in the evaluation of digital health services. However, the potential for tensions to occur between the needs and preferences of patients and their care providers could be reduced through a similar understanding of health treatment goals. This paper has further demonstrated that outcomes of utilising PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative, and nil effects on their health behaviours. CONCLUSIONS This study is the first to gather and compare the perspectives of stroke survivors and clinicians, in order to develop a PROM-PGHD for a simulated rehabilitation system. The reported PGHD utilisation outcomes would directly inform the development of a PROM-PGHD for K-SRS, of which this paper is a key step. Additionally, they could help inform health care providers on decisions about stroke care. This is particularly relevant in the area of poststroke simulated rehabilitation technologies.

Engagement patterns of users and providers: a study of messaging on app usage in a smartphone app for the treatment of eating disorders (Preprint)

2020 ◽  
Author(s):  
Jane Kim ◽  
Jisung Park ◽  
Jenna Tregarthen
Keyword(s):  
Eating Disorders ◽  
Health Care Providers ◽  
Digital Health ◽  
Communication Styles ◽  
Care Providers ◽  
Digital Tool ◽  
Self Monitoring ◽  
Multiple Phenotypes ◽  
Monitoring Tools ◽  
Level Data

BACKGROUND By offering the ability to immediately communicate with health care providers, digital health apps may significantly bolster the therapeutic relationship. Increasing opportunities of engagement with a digital tool, self-monitoring tools show confer promise in allowing patients to go through periods in between in-clinic visits. Little is known however, regarding the usage of the apps and whether communication between providers and app users in fact encourages usage. OBJECTIVE The objective of this study was to investigate the users of an app for eating disorders and summarize the characteristics of usage, characteristics of communication (i.e. messages sent and received), and assess whether the degree of communication and the degree of app usage (of the main features of the app precluding provider contact) were related. METHODS Users of an app for eating disorders (Tregarthen et al) consented for their de-identified, aggregate level data to be utilized for research. Records of five hundred users were randomly sampled from May 2017 to July 2017. All users in the sampled cohort were linked to a clinician. Raw data included 97,732 observations of meal logs submitted via app across 500 individuals. RESULTS Our data demonstrated a high degree of variability across users in their engagement patterns of the app. Receiving more messages on average had a greater effect on usage than sending messages, implying that being checked in on by clinicians may encourage users to engage more with their app. Data also demonstrated that there were multiple phenotypes in terms of preferences regarding communication – while a portion of users seemed to benefit, a large minority did not demonstrate a change in usage based on the frequency of communication. CONCLUSIONS Understanding usage phenotypes can be instrumental in helping clinician and apps understand who their user is. This work demonstrates that variability among the user population in terms of usage and communication styles, as well as usage and behavior. This information can ultimately be leveraged for guiding effective treatment delivery.

scholarly journals Gestational diabetes mellitus: a qualitative study of lived experiences of South Asian immigrant women and perspectives of their health care providers in Melbourne, Australia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mridula Bandyopadhyay
Keyword(s):  
Health Care ◽  
Gestational Diabetes ◽  
South Asian ◽  
Health Care Providers ◽  
Lived Experiences ◽  
Lifestyle Modification ◽  
Self Management ◽  
Asian Women ◽  
Care Providers ◽  
South Asian Women

Abstract Background South Asian women are at a high risk of developing gestational diabetes mellitus than other women in Australia. Gestational diabetes affects up to 14–19% of all pregnancies among South Asian, South East Asian, and Arabic populations placing women at risk of adverse pregnancy outcomes. Although, gestational diabetes resolves after childbirth, women with gestational diabetes are up to seven times more likely to develop type 2 diabetes within five to ten years of the index pregnancy. Increasingly, South Asian women are being diagnosed with gestational diabetes in Australia. Therefore, we aimed to gain a better understanding of the lived experiences of South Asian women and their experiences of self-management and their health care providers’ perspectives of treatment strategies. Methods Using an ethnographic qualitative research methodology, semi-structured one-on-one, face-to-face interviews were conducted with 21 health care providers involved in gestational diabetes management and treatment from the three largest tertiary level maternity hospitals in Melbourne, Victoria, Australia. In-depth interviews were conducted with 23 South Asian women post diagnosis between 24–28 weeks gestation in pregnancy. Results Health care providers had challenges in providing care to South Asian women. The main challenge was to get women to self-manage their blood glucose levels with lifestyle modification. Whilst, women felt self-management information provided were inadequate and inappropriate to their needs. Women felt ‘losing control over their pregnancy’, because of being preoccupied with diet and exercise to control their blood glucose level. Conclusions The gestational diabetes clinical practice at the study hospitals were unable to meet consumer expectations. Health care providers need to be familiar of diverse patient cultures, rather than applying the current ‘one size fits all’ approach that failed to engage and meet the needs of immigrant and ethnic women. Future enabling strategies should aim to co-design and develop low Glycaemic Index diet plans of staple South Asian foods and lifestyle modification messages.

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 Patients’ Views on Self-Management of Chronic Musculoskeletal Pain

2020 ◽  
Vol 5 (4) ◽  
pp. 254-266
Author(s):  
Barbka Huzjan ◽  
Ivana Hrvatin
Keyword(s):  
Health Care ◽  
Chronic Pain ◽  
Musculoskeletal Pain ◽  
Health Care Providers ◽  
Multidisciplinary Approach ◽  
Research Question ◽  
Chronic Musculoskeletal Pain ◽  
Self Management ◽  
Care Providers ◽  
The Individual

Research Question (RQ): Chronic musculoskeletal pain is a complex condition and one of the most important causes of suffering of modern times. Self-management refers to the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition. The research question is; what is the view on the selfmanagement of chronic musculoskeletal pain from the patient's perspective? Purpose: The purpose of this literature review was to review original articles that reported how selfmanagement educational programmes are viewed from the patient’s perspective. Method: We used an integrative review of the literature. The search was conducted from November 2019 to March 2020 on the PubMed, PEDro and OTseeker databases. We included original studies, written in English that examined the patients’ point of view on self-management. The included studies, needed to be conducted on adult patients of both sexes, that were suffering from chronic pain and were educated on self-management of their pain. Two authors independently searched for original studies. Results: Nine article were included in the review. Most of the studies included a multidisciplinary approach. Patients reported they more frequently used passive strategies to manage their pain. They want to be included in the management and be able to communicate with the provider of selfmanagement. There are several positive aspects of a multidisciplinary and groups approach. Organization: Health care providers can encourage an individual to proactively behave through ongoing processes of communication, partnerships and the creation of appropriate self-management plans over time. Society: We assume that the analysis will help to identify the social responsibility of the individual and society in the common concern for the health of the population and the individual within it. Originality: The research provides an up-to-date, new overview of the patients' perspective on self management on chronic pain. The review can be helpful to health care providers s they can compare their expectations with patients's. Limitations / further research: Further research would focus on high quality studies, and specific forms of multidisciplinary approach, and finding what patients use at a home setting and how to help them continue in the self management of their pain. Limitations of this review include the lack of risk of bias assessment and the fact that this is not a systematic review.

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 Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Belinda Fabrianesi ◽  
Rebecca Bosward ◽  
Stacy Carter ◽  
Annette Braunack-Mayer
Keyword(s):  
Data Sharing ◽  
Health Care Providers ◽  
Scoping Review ◽  
Public Attitudes ◽  
Health Data ◽  
Public Confidence ◽  
Care Providers ◽  
Private Industry ◽  
Good Communication ◽  
Government Health

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

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