scholarly journals Data Checkers: A Grid-Based UI for Managing Patient-Generated Data Sharing to Support Collaborative Self-Care

2022 ◽  
Vol 3 ◽  
Author(s):  
Pei-Yao Hung ◽  
Drew Canada ◽  
Michelle A. Meade ◽  
Mark S. Ackerman
Keyword(s):  
Health Informatics ◽  
Spinal Cord Injuries ◽  
Healthcare Providers ◽  
Self Care ◽  
Qualitative Evaluation ◽  
Data Access ◽  
Health Conditions ◽  
Background Information ◽  
Design Requirements ◽  
Grid Based

Chronic health conditions are becoming increasingly prevalent. As part of chronic care, sharing patient-generated health data (PGHD) is likely to play a prominent role. Sharing PGHD is increasingly recognized as potentially useful for not only monitoring health conditions but for informing and supporting collaboration with caregivers and healthcare providers. In this paper, we describe a new design for the fine-grained control over sharing one's PGHD to support collaborative self-care, one that centers on giving people with health conditions control over their own data. The system, Data Checkers (DC), uses a grid-based interface and a preview feature to provide users with the ability to control data access and dissemination. DC is of particular use in the case of severe chronic conditions, such as spinal cord injuries and disorders (SCI/D), that require not just intermittent involvement of healthcare providers but daily support and assistance from caregivers. In this paper, after providing relevant background information, we articulate our steps for developing this innovative system for sharing PGHD including (a) use of a co-design process; (b) identification of design requirements; and (c) creation of the DC System. We then present a qualitative evaluation of DC to show how DC satisfied these design requirements in a way that provided advantages for care. Our work extends existing research in the areas of Human-Computer Interaction (HCI), Computer-Supported Cooperative Work (CSCW), Ubiquitous Computing (Ubicomp), and Health Informatics about sharing data and PGHD.

scholarly journals A pilot comparison of medical records sensitivity perspectives of patients with behavioral health conditions and healthcare providers

2021 ◽  
Vol 27 (2) ◽  
pp. 146045822110099
Author(s):  
Hiral Soni ◽  
Julia Ivanova ◽  
Adela Grando ◽  
Anita Murcko ◽  
Darwyn Chern ◽  
...  
Keyword(s):  
Mental Health ◽  
Drug Abuse ◽  
Behavioral Health ◽  
Health Information ◽  
Healthcare Providers ◽  
Health Conditions ◽  
Mixed Methods Approach ◽  
Record Data ◽  
Category Labels

This pilot study compares medical record data sensitivity (e.g., depression is sensitive) and categorization perspective (e.g., depression categorized as mental health information) of patients with behavioral health conditions and healthcare providers using a mixed-methods approach employing patient’s own EHR. Perspectives of 25 English- and Spanish-speaking patients were compared with providers. Data categorization comparisons resulted in 66.3% agreements, 14.5% partial agreements, and 19.3% disagreements. Sensitivity comparisons obtained 54.5% agreement, 11.9% partial agreement, and 33.6% disagreements. Patients and providers disagreed in classification of genetic data, mental health, drug abuse, and physical health information. Factors influencing patients’ sensitivity determination were sensitive category comprehension, own experience, stigma towards category labels (e.g., drug abuse), and perception of information applicability (e.g., alcohol dependency). Knowledge of patients’ sensitivity perceptions and reconciliation with providers could expedite the development of granular and personalized consent technology.

Abstract 247: Pilot Study Examining Heart Failure Patient Internet Use and Adherence to a Web Based Portal Designed to Support Self-Care.

2013 ◽  
Vol 6 (suppl_1) ◽  
Author(s):  
Redah Z Mahmood ◽  
Judith Grossi ◽  
Todd M Koelling
Keyword(s):  
Computer Use ◽  
Healthcare Providers ◽  
Intervention Group ◽  
Self Care ◽  
Web Based ◽  
Face To Face ◽  
Clinical Events ◽  
Home Based ◽  
Care Information ◽  
Use Of Internet

Background: Experts agree that HF patients should practice appropriate self-care behaviors to minimize the risk of adverse clinical events, including early unplanned readmissions. We sought to understand patient perceptions and adherence to a web-based system designed to support self-care of HF patients. Methods: 100 HF patients were surveyed regarding their computer use and attitudes toward using an internet based web-portal (WP) to support self-care, provide patient education, and communicate with healthcare providers (HCP’s). We then consented 42 patients to participate in a 12 week trial of using the WP to track clinical parameters (daily weights, blood pressure, sodium/fluid intake, exercise), provide links for HF self-education, and update HCP’s on their progress. Patients received a face to face teaching session on accessing and using the WP. Results: The computer use survey (N=100) demonstrated that 72% of patients reported having a computer at home, 67% used email and 71% used the internet. In the WP intervention group (N=41) only 24 (58.5%) were able to successfully access the WP and enter data during the pilot (see table 1). Conclusions: Pilot data showed a significant positive correlation (see table 1) between patients indicating use of internet to access heaIth care information (HCI) and adherence with the WP. Despite strong interest to use a home based WP for self-care and communication with providers, we found that many hurdles prevented patients from using the WP. Internet based educational tools for HF patients may be desirable, but limitations in patients’ ability to access internet based programs may ultimately render the tools ineffective.

Foundations for Meaningful Consent in Canada’s Digital Health Ecosystem: Findings from a Pan-Canadian Survey (Preprint)

2021 ◽  
Author(s):  
Nelson Shen ◽  
Iman Kassam ◽  
Haoyu Zhao ◽  
Wei Wang ◽  
Sarah Wickham ◽  
...  
Keyword(s):  
Health Services ◽  
Information Needs ◽  
Digital Health ◽  
Healthcare Providers ◽  
Data Access ◽  
Patient Access ◽  
Access Channel ◽  
Patient Consent ◽  
Data Source ◽  
Healthcare Privacy

BACKGROUND Patients are increasingly gaining online access to digital health services and expect to access their data from various sources through a central patient access channel. For digital health services to connect and mutually share data, it is critical to understand patient consent preferences to meet the privacy needs of Canadians. Understanding user consent requirements and information needs is necessary in developing a trustworthy and transparent consent management system to support patient access channels. OBJECTIVE The objective of this study was to understand (1) data control preferences, (2) information needs for consent, and (3) how preferences and needs may vary by different user characteristics. METHODS A secondary analysis of a national survey was completed using a retrospective descriptive study design. The cross-sectional survey, conducted in October 2019, used a series of vignettes and consent scenarios to develop a deeper understanding of Canadians’ privacy perspectives and preferences for consent management. Non-parametric tests, and logistic regression analyses were conducted to identify differences and associations between the various factors. RESULTS Of the 1017 total responses, 70.4% (716/1017) of participants self-identified as potential users. Almost all (672/716, 93.8%) felt the ability to control their data was important, while 53.8% (385/716) believed an “all or none” control at data source level was adequate. Most users prefer new data sources to be accessible by healthcare providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Users with positive healthcare privacy experiences were more likely than users with poor experiences to grant default access to healthcare providers (OR 2.78, 95%CI 1.34-5.74) and less likely to grant access to no-one (OR 0.31, 95%CI 0.14-0.72). From a list of nine information elements found in consent forms, users selected an average of 5.70 (SD 2.66) and 5.63 (SD 2.84) items to feel informed in consenting to data access by care partners, and commercial digital health service providers respectively. There were significant differences (p<0.05) in information needs between the scenarios. CONCLUSIONS Many survey participants would register and use a patient access channel and believe the ability to control data access is important, especially as it pertains to access by those outside their care. Positive healthcare experiences were a significant factor in this decision, signaling the importance of providing positive healthcare privacy experiences in both physical and digital environments. These findings suggest broad “all-or-none” approach by data source may be accepted; however, approximately one-fifth of users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for users to make an informed decision. Understanding their information needs will be critical, as these needs varied with use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.

scholarly journals Mining Social Media Data for Biomedical Signals and Health-Related Behavior

2020 ◽  
Vol 3 (1) ◽  
pp. 433-458 ◽  
Author(s):  
Rion Brattig Correia ◽  
Ian B. Wood ◽  
Johan Bollen ◽  
Luis M. Rocha
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Population Level ◽  
Data Access ◽  
Health Conditions ◽  
Social Phenomena ◽  
Medical Treatments ◽  
Social Media Data ◽  
Health Related ◽  
Media Data

Social media data have been increasingly used to study biomedical and health-related phenomena. From cohort-level discussions of a condition to population-level analyses of sentiment, social media have provided scientists with unprecedented amounts of data to study human behavior associated with a variety of health conditions and medical treatments. Here we review recent work in mining social media for biomedical, epidemiological, and social phenomena information relevant to the multilevel complexity of human health. We pay particular attention to topics where social media data analysis has shown the most progress, including pharmacovigilance and sentiment analysis, especially for mental health. We also discuss a variety of innovative uses of social media data for health-related applications as well as important limitations of social media data access and use.

Caring for Patients with Service Dogs: Information for Healthcare Providers

2016 ◽  
Vol 22 (1) ◽  
Author(s):  
Michelle Krawczyk
Keyword(s):  
Emotional Support ◽  
Healthcare Providers ◽  
Background Information ◽  
Future Research ◽  
Service Dogs ◽  
Patient Centered ◽  
Service Dog ◽  
Healthcare Settings ◽  
Centered Care

People with disabilities use various assistance devices to improve their capacity to lead independent and fulfilling lives. Service dogs can be crucial lifesaving companions for their owners. As the use of service dogs increases, nurses are more likely to encounter them in healthcare settings. Service dogs are often confused with therapy or emotional support dogs. While some of their roles overlap, service dogs have distinct protection under the American Disabilities Act (ADA). Knowing the laws and proper procedures regarding service dogs strengthens the abilities of healthcare providers to deliver holistic, patient-centered care. This article provides background information about use of dogs, and discusses benefits to patients and access challenges for providers. The author reviews ADA laws applicable to service dog use and potential challenges and risks in acute care settings. The role of the healthcare professional is illustrated with an exemplar, along with recommendations for future research and nursing implications related to care of patients with service dogs.

Application of Wireless Data Grids for Health Informatics

2008 ◽  
pp. 61-67 ◽  
Author(s):  
Omer Mahmood
Keyword(s):  
Health Informatics ◽  
Data Access ◽  
Rural And Remote ◽  
Wireless Data ◽  
Remote Communities ◽  
Remote Areas ◽  
Lack Of Information ◽  
Health Practitioners ◽  
Rural And Remote Areas ◽  
Information And Communication

Distance and inaccessibility create special challenges for health practitioners in rural and remote areas. Health professionals in rural and remote areas face problems such as prescription concerns due to lack of information. This occurs due to a gap in knowledge regarding medications, as health practitioners do not have access to medical history of their patients. Frequent migration of patients in rural and remote communities results in the loss of patients’ medical records. In addition, doctors have limited access to therapeutic information, as searching the Internet from most remote communities is expensive and slow. In addition, frequent migration of patients in remote communities results in the loss of patients’ histories. This chapter proposes a refined conceptual health information management model based on the model presented by Mahmood (2006). The discussed model is based on the use of Data Grid technology and Data Recharging techniques employed in conjunction with wireless communication technologies to overcome the problems and challenges faced by health practitioners. The model categorizes the health establishments in remote areas into two categories on the basis of geographical characteristics and data access requirements. The discussed model aims to meet information and communication technology (ICT) requirements of health practitioners operating in each recognized category.

Introduction

2017 ◽  
pp. 1-9
Keyword(s):  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Self Management ◽  
Societal Costs ◽  
Chronic Health ◽  
Fundamental Goal ◽  
Global Increase ◽  
Time Limitations

The fundamental goal of this book on self-management is to elaborate on the theories and practices that can help individuals with chronic health conditions to become as independent as possible by self-managing their conditions. The present chapter introduces the concept of self-management. This concept fundamentally denotes that individuals with chronic health conditions take responsibility for managing their chronic health conditions to the best of their abilities. Self-management also involves collaboration with healthcare providers. This chapter discusses several reasons why there is a need to study promoting self-management, including perspectives related to the global increase in the prevalence of chronic health conditions, the societal costs of chronic health conditions, and the time limitations of healthcare professionals providing care. It also includes a discussion of the terminology that is used in this book and concludes with an overview of the content provided by the sections of this book.

Caring for the Family Caregiver

2020 ◽  
pp. 200-214
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Health Literacy ◽  
Family Caregiver ◽  
Contextual Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Future Research ◽  
Disease Information ◽  
The Family ◽  
Caregiver Needs ◽  
Literacy Framework

There is little evidence for caregiver assessment and interventions based on unique social and contextual factors of caregiving. Current approaches to caring for the family caregiver involve a “one size fits all” approach where caregiver assessment may or may not occur, and there is no link between identification of caregiver needs and recommended resources. When caregiver assessment does occur, it does not involve unique caregiving characteristics that positively impact communication and health literacy. Caring for the Family Caregiver, a communication and health literacy framework, is introduced and consists of teaching healthcare providers to address caregiving types by finding disease information, assessing and integrating information, partnering with the caregiver, finding support, talking with the caregiver, and planning for caregiver self-care. Directions for future research are also summarized.

Fatigue

2019 ◽  
pp. 132-139
Author(s):  
Edith O’Neil-Page ◽  
Grace E. Dean ◽  
Paula R. Anderson
Keyword(s):  
End Of Life ◽  
Side Effect ◽  
Healthcare Providers ◽  
Self Care ◽  
Significant Others ◽  
Daily Activities ◽  
Course Of Disease ◽  
Cancer Related Fatigue ◽  
Care Requirements ◽  
The Impact

Individuals suffering from chronic or malignant disease may experience overwhelming and debilitating symptoms of extensive tiredness or sleepiness or an inability to meet daily self-care requirements and maintain personal interaction with significant others. However, they may be unable to verbalize the impact of fatigue on their daily activities. Fatigue is both personal and communal, affecting all aspects of life. Fatigue is often unrecognized by family and healthcare providers or is accepted as a “side effect” of disease and treatment. Cancer-related fatigue affects all aspects of life, at all ages, and may remain unacknowledged by healthcare providers. Yet with recognition and intervention, fatigue can be successfully managed throughout the course of disease, recovery, or through end of life.

scholarly journals Collaborating with Complementary and Alternative Medicine (CAM) Providers When Writing HPV Vaccine Review Articles

2020 ◽  
Vol 9 (2) ◽  
pp. 592
Author(s):  
Michael J. Deml ◽  
Léna G. Dietrich ◽  
Bernhard Wingeier ◽  
Gisela Etter ◽  
Caesar Gallmann ◽  
...  
Keyword(s):  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Hpv Vaccine ◽  
Healthcare Providers ◽  
Vaccine Hesitancy ◽  
Background Information ◽  
Communication Tools ◽  
Provider Perspectives ◽  
Review Articles ◽  
Complementary And Alternative

Novel strategies are needed to address vaccine hesitancy (VH), which correlates with complementary and alternative medicine (CAM). In Switzerland, CAM providers play important roles in vaccine counseling of vaccine hesitant (VH) parents, and traditional vaccination messaging tends to overlook CAM provider perspectives. In the setting of a Swiss national research program on VH, our key strategy has been to work together closely with CAM providers. To assess the feasibility of generating educational human papillomavirus (HPV) vaccine materials that would interest VH healthcare providers (HCPs), we invited four CAM providers to co-author two HPV vaccine review articles for general practitioners. We conducted thematic analysis of CAM provider comments to identify patterns that could complement and improve vaccination messaging from CAM perspectives. We identified several themes and generated an inventory of CAM provider messaging recommendations related to language use, presentation of background information, nuanced statements regarding HPV vaccine efficacy and safety, and communication tools that would be important to VH HCPs. Contrary to our initial expectations, and in an inclusive, respectful atmosphere of open dialogue, we were able to productively finalize our manuscripts. In the opinion of the CAM co-authors, the manuscripts effectively considered the communication needs and perspectives of VH HCPs. Engaging with CAM providers appears to be a feasible and innovative avenue for providing vaccine information and designing communication tools aimed at VH healthcare providers.

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