A digital self-care intervention for Ugandan patients with heart failure and their clinicians: User-centred design and usability study

Background: The prevalence of heart failure (HF) is increasing in Uganda. Ugandan patients with HF report receiving limited information about their illness, disease management, or empowerment to engage in self-care behaviors. Interventions targeted at improving HF self-care have been shown to improve patient quality of life and to reduce hospitalizations in high-income countries. However, such interventions remain underutilized in resource-limited settings like Uganda. Objective: To develop a digital health intervention that enables improved self-care amongst HF patients in Uganda. Methods: We implemented a user-centred design process to develop a self-care intervention entitled Medly Uganda. The ideation phase comprised a systematic scoping review and preliminary data collection amongst HF patients and clinicians in Uganda. An iterative design process was then used to advance an initial prototype into a fully-functional digital health intervention. The evaluation phase involved usability testing of the developed intervention amongst Ugandan patients with HF and their clinicians. Results: Medly Uganda is a digital health intervention that is fully integrated within a government-operated mobile health platform. The system allows patients to report daily HF symptoms, receive tailored treatment advice, and connect with a clinician when showing signs of decompensation. Medly Uganda harnesses Unstructured Supplementary Service Data technology that is already widely used in Uganda for mobile phone-based financial transactions. Usability testing showed the system to be accepted by patients, caregivers, and clinicians. Conclusions: Medly Uganda is a fully-functional and well-accepted digital health intervention that enables Ugandan HF patients to better care for themselves. Moving forward, we expect the system to help decongest cardiac clinics and improve self-care efficacy amongst HF patients in Uganda.

Protecting Personal Health Data through Privacy Awareness

Digital health data is important to keep secure, and patients' perception around the privacy of it is essential to the development of digital health records. In this paper we present people's perceptions of the communication of data protection, in relation to their personal health data and the access to it; we focused particularly on people with chronic or long-term illness. Based on their use of personally accessible health records, we inquired into their explicit perception of security and sense of data privacy in relation to their health data. Our goal was to provide insights and guidelines to designers and developers on the communication of data protection in health records in an accessible way for the users. We analyzed their approach to and experience with their own health care records and describe the details of their challenges. A conceptual framework called "Privacy Awareness' was developed from the findings and reflects the perspectives of the users. The conceptual framework forms the basis of a proposal for design guidelines for Digital Health Record systems, which aim to address, facilitate and improve the users' awareness of the protection of their online health data.

Co-Creation of Massive Open Online Courses to Improve Digital Health Literacy in Pregnant and Lactating Women

Background: Digital health literacy (DHL) increases the self-efficacy and empowerment of pregnant and lactating women (PLW) in using the Internet for health issues. The European project IC-Health aimed to improve DHL among PLW, through the co-creation of Massive Open Online Courses (MOOCs). Methods: The co-creation of the MOOCs included focus groups and the creation of communities of practice (CoPs) with PLW and healthcare professionals aimed to co-design the MOOCs. The quantitative measures of MOOCs’ acceptability, experience in the co-creation process and increase in DHL (dimensions of finding, understanding and appraisal) were assessed. Results: 17 PLW participated in focus groups, 113 participants were included in CoPs and 68 participants evaluated the acceptability of MOOCs. A total of 6 MOOCs aimed at improving PLW’s DHL were co-designed. There was a significant improvement in self-perceived DHL after using MOOCs (p-value < 0.001). The acceptability of MOOCs and co-creation experience were positively valued. Conclusions: The preliminary results of the quantitative assessment showed a higher self-perceived DHL after the IC-Health MOOCs. These results suggest that IC-Health MOOCs and the co-creation methodology appear to be a viable process to carry out an intervention aimed to improve DHL levels in European PLW.

Barriers and Facilitators to Accessing Digital Health Tools Faced by South Asian Canadians in Surrey, British Columbia: Community-Based Participatory Action Exploration Using Photovoice

Background South Asian community members in Canada experience a higher burden of chronic disease than the general population. Digital health innovations provide a significant opportunity to address various health care challenges such as supporting patients in their disease self-management. However, South Asian community members are less likely to use digital tools for their health and face significant barriers in accessing them because of language or cultural factors. Objective The aim of this study is to understand the barriers to and facilitators of digital health tool uptake experienced by South Asian community members residing in Canada. Methods This study used a qualitative community-based participatory action research approach. Residents from Surrey, British Columbia, Canada, who spoke 1 of 4 South Asian languages (Hindi, Punjabi, Urdu, or Tamil) were invited to participate in focus group discussions. A subsample of the participants were invited to use photovoice methods in greater depth to explore the research topics. Results A total of 197 participants consented to the focus group discussions, with 12 (6.1%) participating in the photovoice phase. The findings revealed several key obstacles (older age, lack of education, and poor digital health literacy) and facilitators (social support from family or community members and positive attitudes toward technology) to using digital health tools. Conclusions The results support the value of using a community-based participatory action research approach and photovoice methods to engage the South Asian community in Canada to better understand digital health competencies and needs. There were several important implications for policy makers and future research, such as continued engagement of community leaders by health care providers and administrators to learn about attitudes and preferences.

Remote Monitoring of Patient- and Family-Generated Health Data in Pediatrics

Remote patient monitoring (RPM) is a form of telemedicine that involves the collection and transmission of health data from a patient to their health care team by using digital health technologies. RPM can be leveraged to aggregate and visualize longitudinal patient-generated health data for proactive clinical management and engagement of the patient and family in a child’s health care. Collection of remote data has been considered standard of care for years in some chronic pediatric conditions. However, software limitations, gaps in access to the Internet and technology devices, digital literacy, insufficient reimbursement, and other challenges have prevented expansion of RPM in pediatric medicine on a wide scale. Recent technological advances in remote devices and software, coupled with a shift toward virtual models of care, have created a need to better understand how RPM can be leveraged in pediatrics to improve the health of more children, especially for children with special health care needs who are reliant on high-quality chronic disease management. In this article, we define RPM for the general pediatric health care provider audience, provide case examples of existing RPM models, discuss advantages of and limitations to RPM (including how data are collected, evaluated, and managed), and provide a list of current RPM resources for clinical practitioners. Finally, we propose considerations for expansion of this health care delivery approach for children, including clinical infrastructure, equitable access to digital health care, and necessary reimbursement. The overarching goal is to advance health for children by adapting RPM technologies as appropriate and beneficial for patients, families, and providers alike.

Feasibility and Acceptability of a Physical Activity Tracker and Text Messages to Promote Physical Activity During Chemotherapy for Colorectal Cancer: Pilot Randomized Controlled Trial (Smart Pace II)

Background We conducted a pilot 2-arm randomized controlled trial to assess the feasibility of a digital health intervention to increase moderate-to-vigorous physical activity in patients with colorectal cancer (CRC) during chemotherapy. Objective This study aimed to determine whether a digital health physical activity intervention is feasible and acceptable during chemotherapy for CRC. Methods Potentially eligible patients with CRC expected to receive at least 12 weeks of chemotherapy were identified in person at the University of California, San Francisco, and on the web through advertising. Eligible patients were randomized 1:1 to a 12-week intervention (Fitbit Flex, automated SMS text messages) versus usual care. At 0 and 12 weeks, patients wore an Actigraph GT3X+ accelerometer for 7 days and completed surveys, body size measurements, and an optional 6-minute walk test. Participants could not be masked to their intervention arm, but people assessing the body size and 6-minute walk test outcomes were masked. The primary outcomes were adherence (eg, Fitbit wear and text response rate) and self-assessed acceptability of the intervention. The intervention would be considered feasible if we observed at least 80% complete follow-up and 70% adherence and satisfaction, a priori. Results From 2018 to 2020, we screened 240 patients; 53.3% (128/240) of patients were ineligible and 26.7% (64/240) declined to participate. A total of 44 patients (44/240, 18%) were randomized to the intervention (n=22) or control (n=22) groups. Of these, 57% (25/44) were women; 68% (30/44) identified as White and 25% (11/44) identified as Asian American or Pacific Islander; and 77% (34/44) had a 4-year college degree. The median age at enrollment was 54 years (IQR 45-62 years). Follow-up at 12 weeks was 91% (40/44) complete. In the intervention arm, patients wore Fitbit devices on a median of 67 out of 84 (80%) study days and responded to a median of 17 out of 27 (63%) questions sent via SMS text message. Among 19 out of 22 (86%) intervention patients who completed the feedback survey, 89% (17/19) were satisfied with the Fitbit device; 63% (12/19) were satisfied with the SMS text messages; 68% (13/19) said the SMS text messages motivated them to exercise; 74% (14/19) said the frequency of SMS text messages (1-3 days) was ideal; and 79% (15/19) said that receiving SMS text messages in the morning and evening was ideal. Conclusions This pilot study demonstrated that many people receiving chemotherapy for CRC are interested in participating in digital health physical activity interventions. Fitbit adherence was high; however, participants indicated a desire for more tailored SMS text message content. Studies with more socioeconomically diverse patients with CRC are required. Trial Registration ClinicalTrials.gov NCT03524716; https://clinicaltrials.gov/ct2/show/NCT03524716

Management of Medico-Legal Risks in Digital Health Era: A Scoping Review

Artificial intelligence needs big data to develop reliable predictions. Therefore, storing and processing health data is essential for the new diagnostic and decisional technologies but, at the same time, represents a risk for privacy protection. This scoping review is aimed at underlying the medico-legal and ethical implications of the main artificial intelligence applications to healthcare, also focusing on the issues of the COVID-19 era. Starting from a summary of the United States (US) and European Union (EU) regulatory frameworks, the current medico-legal and ethical challenges are discussed in general terms before focusing on the specific issues regarding informed consent, medical malpractice/cognitive biases, automation and interconnectedness of medical devices, diagnostic algorithms and telemedicine. We aim at underlying that education of physicians on the management of this (new) kind of clinical risks can enhance compliance with regulations and avoid legal risks for the healthcare professionals and institutions.