G. Giunti Garcia
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Designing digital patient experiences
The digital health design framework
Timing, Indicators, and Approaches to Digital Patient Experience Evaluation
Umbrella Systematic Review
BACKGROUND: The increasing prevalence of DH applications has outpaced research and practice in digital health (DH) evaluations. Patient experience (PEx) was reported as one of the challenges facing the health system by the World Health Organization. To generate evidence on DH and promote the appropriate integration and use of technologies, a standard evaluation of PEx in DH is required. OBJECTIVE: This study aims to systematically identify evaluation timing considerations (ie, when to measure), evaluation indicators (ie, what to measure), and evaluation approaches (ie, how to measure) with regard to digital PEx. The overall aim of this study is to generate an evaluation guide for further improving digital PEx evaluation. METHODS: This is a 2-phase study parallel to our previous study. In phase 1, literature reviews related to PEx in DH were systematically searched from Scopus, PubMed, and Web of Science databases. Two independent raters conducted 2 rounds of paper screening, including title and abstract screening and full-text screening, and assessed the interrater reliability for 20% (round 1: 23/115 and round 2: 12/58) random samples using the Fleiss-Cohen coefficient (round 1: k1=0.88 and round 2: k2=0.80). When reaching interrater reliability (k>0.60), TW conducted the rest of the screening process, leaving any uncertainties for group discussions. Overall, 38% (45/119) of the articles were considered eligible for further thematic analysis. In phase 2, to check if there were any meaningful novel insights that would change our conclusions, we performed an updated literature search in which we collected 294 newly published reviews, of which 102 (34.7%) were identified as eligible articles. We considered them to have no important changes to our original results on the research objectives. Therefore, they were not integrated into the synthesis of this review and were used as supplementary materials. RESULTS: Our review highlights 5 typical evaluation objectives that serve 5 stakeholder groups separately. We identified a set of key evaluation timing considerations and classified them into 3 categories: intervention maturity stages, timing of the evaluation, and timing of data collection. Information on evaluation indicators of digital PEx was identified and summarized into 3 categories (intervention outputs, patient outcomes, and health care system impact), 9 themes, and 22 subthemes. A set of evaluation theories, common study designs, data collection methods and instruments, and data analysis approaches was captured, which can be used or adapted to evaluate digital PEx. CONCLUSIONS: Our findings enabled us to generate an evaluation guide to help DH intervention researchers, designers, developers, and program evaluators evaluate digital PEx. Finally, we propose 6 directions for encouraging further digital PEx evaluation research and practice to address the challenge of poor PEx.
Objective: The objective of this study is to explore the perceived utility of different types of PGHD from mHealth solutions which could serve as tools for HCPs to support participatory care in MS.
Method: A mixed-methods approach was used, combining qualitative research and participatory design. This study includes three sequential phases: data collection, assessment of PGHD utility, and design of data visualizations. In the first phase, 16 HCPs were interviewed. The second and third phases were carried out through participatory workshops, where PGHD types were conceptualized in terms of utility.
Results: The study found that HCPs are optimistic about PGHD in MS care. The most useful types of PGHD for HCPs in MS care are patients' habits, lifestyles, and fatigue-inducing activities. Although these subjective data seem more useful for HCPs, it is more challenging to visualize them in a useful and actionable way.
Conclusion: HCPs are optimistic about mHealth and PGHD as tools to further understand their patients' needs and support care in MS. HCPs from different disciplines have different perceptions of what types of PGHD are useful; however, subjective types of PGHD seem potentially more useful for MS care. ...
Objective: The objective of this study is to explore the perceived utility of different types of PGHD from mHealth solutions which could serve as tools for HCPs to support participatory care in MS.
Method: A mixed-methods approach was used, combining qualitative research and participatory design. This study includes three sequential phases: data collection, assessment of PGHD utility, and design of data visualizations. In the first phase, 16 HCPs were interviewed. The second and third phases were carried out through participatory workshops, where PGHD types were conceptualized in terms of utility.
Results: The study found that HCPs are optimistic about PGHD in MS care. The most useful types of PGHD for HCPs in MS care are patients' habits, lifestyles, and fatigue-inducing activities. Although these subjective data seem more useful for HCPs, it is more challenging to visualize them in a useful and actionable way.
Conclusion: HCPs are optimistic about mHealth and PGHD as tools to further understand their patients' needs and support care in MS. HCPs from different disciplines have different perceptions of what types of PGHD are useful; however, subjective types of PGHD seem potentially more useful for MS care.
The potential of mHealth is enormous for chronic conditions, yet the integration of these technologies into the clinical infrastructures and healthcare pathways remains an ongoing challenge. Digi-HTA has been developed to support health technology assessment activities for novel digital healthcare technologies. The use of Early Health Technology Assessment (EHTA) can help product development. The present study describes the way in which EHTA can guide the development of a product to anticipate future needs and market access.
Integration of digital self-management solutions into health care processes requires the involvement of health care professionals in the adoption and use of the solutions as part of the care pathway. We conducted 23 interviews with diverse profiles of health care professionals participating in the treatment of chronic patients in three different countries. Our results indicate that health care professionals appeared relatively motivated at the prospect of having access to patient-generated data. Nevertheless, they appeared less confident in weighing what types of data could be collected efficiently through mobile devices and how it could be presented in ways that would provide value to the care process. Our results identify four broad categories for how patient-generated health data could be useful: monitoring, prevention, research, and transparency of condition parameters.
Usability assessment of an interactive health technology for kidney living donors
Protocol for a prospective cross-sectional survey
Introduction Several web portals for kidney patients are available, but assessments of their performance are scarce. A crucial aspect of living donation is to provide standardised information about the risks of the procedure. This is of particular interest among candidates for kidney living donation. In 2019, the Digital Care Path for Living Kidney Donor Candidates was launched in Finland as part of the Health Village portal, containing information about the donation process and facilitating communication between clinicians, transplant coordinators and patients. The performance of this eHealth service has not yet been studied. The present study will investigate living donor candidates' experience with the Health Village and Digital Care Path for Living Kidney Donor Candidates. Participants' general attitudes towards the use of eHealth services will also be explored as a secondary objective. Methods and analysis A prospective cross-sectional survey study will take place. Participants will be kidney donor candidates who have used the digital care path since its implementation in January 2019 up to 1 March 2021 (N=122). The surveys will include demographic data, electronic device ownership and digital health literacy. Platform's ease of use will be assessed with the System Usability Scale. Open-ended questions will be used to gather suggestions. Ethics and dissemination The research protocol has been approved by the Helsinki University Hospital ethical committee (HUS/501/2021) to ensure that the work is done in accordance with the declaration of Helsinki and Declaration of Istanbul. Recruitment will start during the first semester of 2021. Initial results are expected during the second semester of 2021. Pre-results.
Digital Patient Experience
Umbrella Systematic Review
Background: The adoption and use of technology have significantly changed health care delivery. Patient experience has become a significant factor in the entire spectrum of patient-centered health care delivery. Digital health facilitates further improvement and empowerment of patient experiences. Therefore, the design of digital health is served by insights into the barriers to and facilitators of digital patient experience (PEx). Objective: This study aimed to systematically review the influencing factors and design considerations of PEx in digital health from the literature and generate design guidelines for further improvement of PEx in digital health. Methods: We performed an umbrella systematic review following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. We searched Scopus, PubMed, and Web of Science databases. Two rounds of small random sampling (20%) were independently reviewed by 2 reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed using the Fleiss-Cohen coefficient (k1=0.88 and k2=0.80). Thematic analysis was applied to analyze the extracted data based on a small set of a priori categories. Results: The search yielded 173 records, of which 45 (26%) were selected for data analysis. Findings and conclusions showed a great diversity; most studies presented a set of themes (19/45, 42%) or descriptive information only (16/45, 36%). The digital PEx-related influencing factors were classified into 9 categories: patient capability, patient opportunity, patient motivation, intervention technology, intervention functionality, intervention interaction design, organizational environment, physical environment, and social environment. These can have three types of impacts: positive, negative, or double edged. We captured 4 design constructs (personalization, information, navigation, and visualization) and 3 design methods (human-centered or user-centered design, co-design or participatory design, and inclusive design) as design considerations. Conclusions: We propose the following definition for digital PEx: "Digital patient experience is the sum of all interactions affected by a patient's behavioral determinants, framed by digital technologies, and shaped by organizational culture, that influence patient perceptions across the continuum of care channeling digital health." In this study, we constructed a design and evaluation framework that contains 4 phases-define design, define evaluation, design ideation, and design evaluation-and 9 design guidelines to help digital health designers and developers address digital PEx throughout the entire design process. Finally, our review suggests 6 directions for future digital PEx-related research.
Patient and public involvement (PPI) is increasingly used for improving quality of the research. There are many barriers in translating PPI into practice, including lacking examples of good practices. Frameworks that have been developed in one setting do not readily transfer to other settings. In this paper, we examine the implementation of PPI in the context of a digital health research project that explores the design, development and use of mHealth for persons with Multiple Sclerosis taking an iterative user-centered design approach. Methods: Instrumental case study to describe the PPI process on a digital health research project. Results: Overall experience was positive. We found 3 roles for PPI involvement: strategic members; design and development partners; and expert members. Challenges lay on unclear PPI terminology; managing roles and expectations; and ensuring accessibility.
The lifespan of older people is growing together with their proportion in the population growth in the older population. This leads to an increasing need for support services for older adults who will inevitably experience a significant decrease in their cognitive capabilities and mental health conditions. Cognitive functions, including memory, attention, sleeping, problem-solving activities, or speed processing, are playing a crucial role in everyone’s independent daily life. Technologies can help maintain their independence and improve quality of life, reducing the care costs. In this regard, Smart home applications (SMAs) offer a solution to the complex needs of older adults and their families, monitoring physiological and functional issues, as well as aiding in emergency detection and response. This chapter provides an overview of current applications reported in the scientific literature, identifies the frameworks proposed for designing these types of applications, and defines evidence-based recommendations for designing SMAs for cognitive health of older adults.
Design-Relevant Factors Affecting the Patient Experience in Digital Health
Preliminary Results of an Umbrella Systematic Review
Since Covid-19, digital health interventions (DHIs) have been embraced as never before. The pandemic led to many new challenges, including the patient experience in digital health care delivery. In this literature study, we identified and synthesized factors that impact patient experience in digital health (dPEx), and reviewed the methods and strategies relevant to its design and implementation. We conducted an umbrella review including 15 reviews representing 543 studies. Four themes were identified that describe design-relevant factors that impact dPEx: individual context, content, technical issues, and design features. We propose a preliminary framework to explain the relationship between each factor and support user-centered design efforts. Further research is needed to identify which factors have the most impact.
Introduction: Multiple sclerosis (MS) is one of the world's most common neurologic disorders. Social media have been proposed as a way to maintain and even increase social interaction for people with MS. The objective of this work is to identify and compare the topics on Twitter during the first wave of COVID-19 pandemic. Methods: Data was collected using the Twitter API between 9/2/2019 and 13/5/2020. SentiStrength was used to analyze data with the day that the pandemic was declared used as a turning point. Frequency-inverse document frequency (tf-idf) was used for each unigram and calculated the gains in tf-idf value. A comparative analysis of the relevance of words and categories among the datasets was performed. Results: The original dataset contained over 610k tweets, our final dataset had 147,963 tweets. After the 10th of march some categories gained relevance in positive tweets ("Healthcare professional", "Chronic conditions", "Condition burden"), while in negative tweets "Emotional aspects" became more relevant and "COVID-19" emerged as a new topic. Conclusions: Our work provides insight on how COVID-19 has changed the online discourse of people with MS.
The impact of COVID-19 on abortion access
Insights from the European Union and the United Kingdom
Government policies on abortion are a longstanding topic of heated political debates. The COVID-19 pandemic shook health systems to the core adding further to the complexity of this topic, as imposed national lockdowns and movement restrictions affected access to timely abortion for millions of women across the globe. In this paper, we examine how countries within the European Union and the United Kingdom responded to challenges brought by the COVID-19 crisis in terms of access to abortion. By combining information from various sources, we have explored different responses according to two dimensions: changes in policy and protocols, and reported difficulties in access. Our analysis shows significant differences across the observed regions and salient debates around abortion. While some countries made efforts to maintain and facilitate abortion care during the pandemic through the introduction or expansion of use of telemedicine and early medical abortion, others attempted to restrict it further. The situation was also diverse in the countries where governments did not change policies or protocols. Based on our data analysis, we provide a framework that can help policy makers improve abortion access.
Advances in voice recognition, natural language processing, and artificial intelligence have led to the increasing availability and use of conversational agents (chatbots) in different settings. Chatbots are systems that mimic human dialogue interaction through text or voice. This paper describes a series of design considerations for integrating chatbots interfaces with health services. The present paper is part of ongoing work that explores the overall implementation of chatbots in the healthcare context. The findings have been created using a research through design process, combining (1) literature survey of existing body of knowledge on designing chatbots, (2) analysis on state-of-the-practice in using chatbots as service interfaces, and (3) generative process of designing a chatbot interface for depression screening. In this paper we describe considerations that would be useful for the design of a chatbot for a healthcare context.
Designing during, and for Pandemics
A multidisciplinary approach
The physical and social distancing measures that have been adopted worldwide because of COVID-19 will probably remain in place for a long time, especially for senior adults, people with chronic conditions, and other at-risk populations. Teleconsultations can be useful in ensuring that patients continue to receive clinical care while reducing physical crowding and avoiding unnecessary exposure of health care staff. Implementation processes that typically take months of planning, budgeting, pilot testing, and education were compressed into days. However, in the urgency to deal with the present crisis, we may be forgetting that the introduction of digital health is not exclusively a technological issue, but part of a complex organizational change problem. This viewpoint offers insight regarding issues that rapidly adopted teleconsultation systems may face in a post–COVID-19 world.