Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

Personal data sharing acceptance for mobile application’s users : health sector analysis

Mobile applications have become essential to people’s daily lives, since nowadays they use mobile applications for many things other than just communicating. The use of mobile health applications has also increased. These apps have several benefits for both healthcare providers and patients. Companies that own mobile applications collect all types of personal information of their users. Geolocation is one of those data types. It is especially important for health mobile applications since it can help slow the spread of contagious diseases. When determining whether to disclose this kind of data, users must consider the benefits and risks of doing so. This study’s main goal is to discover which socio-demographic factors and perceived benefits and risks most strongly influence users’ willingness to share their geolocation data with mobile applications. It was concluded that the users’ generation, marital status, parenthood and employment status are the variables that impact the users’ willingness to share geolocation data with mobile apps. Being able to use the service provided by an app and having their data used for other purposes are the most frequent benefit and risk experiences by the users, respectively. Yet, it was also shown that certain risks and benefits are viewed differently by users based on their generation and gender. The following conclusions about other factors that influence the users’ willingness to share geolocation data with apps were also drawn: users are more likely to share that data periodically rather than continuously; if the data processing procedures are transparent and if data anonymity is granted, that willingness increases; some characteristics of the company that owns an app influences that willingness; rewards like donations to charity, discounts and virtual reward points have little impact on the users’ decision.Nos dias de hoje, as pessoas usam aplicações para tudo. Inevitavelmente, a consequente utilização de aplicações do setor da saúde também tem vindo a aumentar. As aplicações do setor da saúde trazem vantagens para os prestadores de serviços de saúde e para os pacientes. As empresas detentoras das aplicações recolhem todo o tipo de informação pessoal dos utilizadores, nomeadamente a geolocalização. É especialmente importante para o setor da saúde, visto que pode ajudar na prevenção de doenças contagiosas. Partilhar este tipo de informação traz benefícios e riscos que têm de ser avaliados pelos utilizadores quando decidem se devem partilhá-lo com as aplicações. O principal objetivo deste estudo é perceber quais os fatores sociodemográficos, riscos e benefícios que mais influenciam a disponibilidade dos utilizadores para partilhar dados pessoais de geolocalização com aplicações móveis, em particular, com aplicações do setor da saúde. Concluiu-se que a geração, o estado civil, a parentalidade e a situação profissional são os fatores que influenciam a decisão de partilhar dados pessoais de geolocalização com aplicações móveis. Poder utilizar o serviço prestado por uma app e ter os seus dados utilizados para outros fins são, respetivamente, o benefício e o risco mais referidos pelos utilizadores. Alguns benefícios e riscos são percecionados de forma diferente por utilizadores de géneros e gerações diferentes. Relativamente a outros fatores que influenciam a disponibilidade dos utilizadores para partilhar dados de geolocalização aferiu-se que: estão mais disponíveis para partilhar esses dados esporadicamente do que continuamente; se o processamento de dados for transparente e o anonimato for garantido, essa disponibilidade aumenta; algumas características das empresas detentoras das apps influenciam essa decisão; recompensas como doações para a caridade, descontos e pontos de recompensa virtuais, não são relevantes para a sua decisão

Considerations for the development of mobile phone apps to support diabetes self-management: systematic review

Background: There is increased research interest in the use of mobile phone apps to support diabetes management. However,there are divergent views on what constitute the minimum standards for inclusion in the development of mobile phone apps. Mobile phone apps require an evidence-based approach to development which will consequently impact on their effectiveness. Therefore, comprehensive information on developmental considerations could help designers and researchers to develop innovative and effective patient-centered self-management mobile phone apps for diabetes patients. Objective: This systematic review examined the developmental considerations adopted in trials that engaged mobile phone applications for diabetes self-management. Methods: A comprehensive search strategy was implemented across 5 electronic databases; Medline, Scopus, Social Science Citation Index, the Cochrane Central Register of Controlled Trials and Cumulative Index of Nursing and Allied Health Literature (CINALHL) and supplemented by reference list from identified studies. Study quality was evaluated using the Joanna Briggs Critical appraisal checklist for trials. Information on developmental factors (health behavioral theory, functionality, pilot testing,user and clinical expert involvements, data privacy and app security) were assessed across experimental studies using a template developed for the review. Results: A total of 11 studies (10 randomized controlled trials and 1 quasi-experimental trial) that fitted the inclusion criteria were identified. All the included studies had the functionality of self-monitoring of blood glucose. However, only some of them included functions for data analytics (7/11, 63.6%), education (6/11, 54.5%) and reminder (6/11, 54.5%). There were 5/11(45.5%) studies with significantly improved glycosylated hemoglobin in the intervention groups where educational functionality was present in the apps used in the 5 trials. Only 1 (1/11, 9.1%) study considered health behavioral theory and user involvement, while 2 (2/11, 18.1%) other studies reported the involvement of clinical experts in the development of their apps. There were 4 (4/11, 36.4%) studies which referred to data security and privacy considerations during their app development while 7 (7/12, 63.6%) studies provided information on pilot testing of apps before use in the full trial. Overall, none of the studies provided information on all developmental factors assessed in the review. Conclusions: There is a lack of elaborate and detailed information in the literature regarding the factors considered in the development of apps used as interventions for diabetes self-management. Documentation and inclusion of such vital information will foster a transparent and shared decision-making process that will ultimately lead to the development of practical and user-friendly self-management apps that can enhance the quality of life for diabetes patients

Development and Content Validation of Scoresheet and User Manual to Assess the Quality of Health Apps

There has been a continuous growth of health application programs (apps) both in web-based and mobile platforms in recent years. However, there has been no instrument available to assess the degree of quality of these apps in Finland during the time this study has been initiated. The aim of this study was to develop an easy-to-use and practical scoresheet and user manual to assess the degree of quality of health apps as well as validate its contents using an expert panel. The design of the study adopted a two-stage process. The first stage entails designing the instrument in which the identification of conceptual framework, item generation and determining the structure of the instrument were performed. A comprehensive literature review was undertaken as well as the examination of applicable legislations, policies and guidelines pertaining to mHealth and digital health devices. The second stage entailed judgement wherein the scoresheet was tested for face validity with a small representative sample (n=6) of intended users and two rounds of content validation using an expert panel (n=19). The Content Validity Index (CVI) both in item and scale-levels were computed. The result of the study yielded a total of 34 content validated items categorized into five distinctive domains – Basic Details, Health Content, Technical Properties, User-orientation, Privacy and Safety. The CVIs on item-level for all items reached a favorable score of > 0,78 on the assertions of relevance and clarity. Whilst it garnered > 0,90 on scale level based on universal agreement and average. This study paved ways for the scoresheet and user manual to proceed with further psychometric measurement procedures such as reliability, feasibility and acceptability.Terveydenhuollon ei-lääkinnällisten sovellusten (apps) määrä on kasvanut jatkuvasti viime vuosina sekä verkko- että mobiilialustoilla. Tämän tutkimuksen aloittamisen aikana ei Suomessa kuitenkaan ollut saatavilla instrumenttia näiden sovellusten laadun arvioimiseksi. Tämän tutkimuksen tarkoituksena oli kehittää helppokäyttöinen ja käytännöllinen mittari ja käyttöopas terveyssovellusten laadun arvioimiseksi ja validoida sen sisältö asiantuntijapaneelin avulla. Tutkimus toteutettiin kaksivaiheisena. Ensimmäisessä vaiheessa kehitettiin mittari eli määritettiin teoreettinen viitekehys, ja muodostettiin sen perusteella mittarin osiot ja rakenne. Vaiheessa yksi toteutettiin kattava kirjallisuuskatsaus sekä koottiin yhteen terveyssovelluksia koskeva lainsäädäntö ja viralliset ohjeistukset. Tutkimuksen toisessa vaiheessa arvioitiin kehitetyn mittarin ilmivaliditeettia (face validity) tavoiteltua käyttäjäjoukkoa edustavalla tarkoituksenmukaisella otoksella (n=6). Sisältövaliditeetin (content validity) testaamiseen rekrytoitiin asiantuntijapaneeli (n=19) ja he toteuttivat mittarille kaksi validointikierrosta. Vastauksista laskettiin Content Validity Index (CVI) sekä osioiden että mittarin tasolla (item and scale levels). Tutkimuksen tuloksena syntyi 34 kohdan asiantuntijapaneelin validoima mittari terveyssovellusten laadun arvioimiseen. Mittarin kohdat on luokiteltu aihealueittain viiteen osa-alueeseen: perustiedot, terveyteen liittyvä sisältö, tekniset ominaisuudet, käyttäjälähtöisyys, sekä yksityisyys ja turvallisuus. Kaikkien osioiden CVI pisteet saavuttivat suotuisat lukemat > 0,78 relevanssiuden ja selkeyden osalta. Lisäksi mittari sai > 0,90 pisteet koko mittarin tasolla (universal agreement and average). Tämä tutkimus tuotti uuden tavan arvioida terveyssovellusten laatua. Jatkossa mittarin ja sen käyttöoppaan psykometrisiä ominaisuuksia kuten reliabiliteettia sekä käyttökelpoisuutta ja hyväksyttävyyttä tulee edelleen testata

Utilizing Digital Health to Collect Electronic Patient-Reported Outcomes in Prostate Cancer: Single-Arm Pilot Trial

Background: Measuring patient-reported outcomes (PROs) requires an individual’s perspective on their symptoms, functional status, and quality of life. Digital health enables remote electronic PRO (ePRO) assessments as a clinical decision support tool to facilitate meaningful provider interactions and personalized treatment. Objective: This study explored the feasibility and acceptability of collecting ePROs using validated health-related quality of life (HRQoL) questionnaires for prostate cancer. Methods: Using Apple ResearchKit software, the Strength Through Insight app was created with content from validated HRQoL tools 26-item Expanded Prostate Cancer Index Composite (EPIC) or EPIC for Clinical Practice and 8-item Functional Assessment of Cancer Therapy Advanced Prostate Symptom Index. In a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates, participants were recruited, and instructed to download Strength Through Insight and complete ePROs once a week over 12 weeks. A mixed methods approach, including qualitative pre- and poststudy interviews, was used to evaluate the feasibility and acceptability of Strength Through Insight for the collection and care management of cancer treatment. Results: Thirty patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Moreover, 86% (25/29) reached satisfactory questionnaire completion (defined as completion of 60% of weekly questions over 12 weeks). The lower bound of the exact one-sided 95% CI was 71%, exceeding the 70% feasibility threshold. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources), and only a few participants identified with having a low digital literacy level (defined as only having the ability to gather information on the Web). Interviews were thematically analyzed to reveal the following: (1) value of emotional support and wellness in cancer treatment, (2) rise of social patient advocacy in online patient communities and networks, (3) patient concerns over privacy, and (4) desire for personalized engagement tools. Conclusions: Strength Through Insight was demonstrated as a feasible and acceptable method of data collection for ePROs. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported that using the smartphone app is easier than or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. This study expands on current research involving the value of digital health, as a social and behavioral science, augmented with technology, can begin to contribute to population health management, as it shapes psychographic segmentation by demographic, socioeconomic, health condition, or behavioral factors to group patients by their distinct personalities and motivations, which influence their choices

Evaluating mobile health applications as digital therapeutical products

The emergence of new technological advancements and the unprecedented expansion of mobile phone usage has led to the exponential growth of Mobile Health Applications (mHealth apps) development and implementation in the global markets. mHealth apps have created innovative channels to diagnose, treat, monitor, and engage with patients in various healthcare settings, and therefore, it is an important exploration in the fields of information technology, healthcare, and cognitive behavioural sciences. However, a significant portion of mHealth apps has been identified to be developed without scientific or clinical evidence. The objective of implementing the proposed “mHealth App Evaluation Tool” and its validation of the perceived usefulness of the tool from clinicians, mHealth app developers and end-users is to provide a solution for addressing the current gap in evaluating the efficacy of unregulated mHealth apps. An extensive review of the literature from 2010 to 2022 was conducted in three separate phases, gathering and synthesising the core concepts of the mHealth app landscape, proposed frameworks and parameters, the evolution and construction of unidimensional and multidimensional scales and the use of multi-stakeholder participation for a holistic evaluation process. The proposed mHealth app evaluation tool was developed on the foundation of six design drivers: modifiability, scalability, multi-stakeholder involvement, simultaneous management of multiple evaluation projects, ease of use and accessibility. The development of the tool utilised the RestFul API pattern, leveraging Laravel PHP and Vue.js frameworks. The data collection process was completed in two separate phases. The first phase involved the data obtained from the participant’s evaluation of the WYSA app using the proposed mHealth App Evaluation Tool. The system auto-generated an associated average score out of 5 against each evaluation. The second phase involved the data collection during the 30 minutes interview session. Due to the ever-changing nature of software applications, it is inevitable that the elements of mHealth app evaluation will continue to evolve and change over time. What is deemed to be necessary and critical in evaluating mHealth apps today may not be so in years to come. The mHealth App Evaluation tool addresses the need for future criteria modifications, scalability, and the necessity to obtain expert knowledge from multiple stakeholders for a holistic mHealth app evaluation

Mobile Apps Leveraged in the COVID-19 Pandemic in East and South-East Asia:Review and Content Analysis

BackgroundThe COVID-19 pandemic increased attention to digital tools to support governmental public health policies in East and South-East Asia. Mobile apps related to the COVID-19 pandemic continue to emerge and evolve with a wide variety of characteristics and functions. However, there is a paucity of studies evaluating such apps in this region, with most of the available studies conducted in the early days of the pandemic. ObjectiveThis study aimed to examine free apps developed or supported by governments in the East and South-East Asian region and highlight their key characteristics and functions. We also sought to interpret how the release dates of these apps were related to the commencement dates of other COVID-19 public health policies. MethodsWe systematically searched for apps in Apple App Store and Google Play Store and analyzed the contents of eligible apps. Mobile apps released or updated with COVID-19–related functions between March 1 and May 7, 2021, in Singapore, Taiwan, South Korea, China (mainland), Japan, Thailand, Hong Kong, Vietnam, Malaysia, Indonesia, and the Philippines were included. The CoronaNet Research Project database was also examined to determine the timeline of public health policy commencement dates in relation to the release dates of the included apps. We assessed each app’s official website, media reports, and literature through content analysis. Descriptive statistics were used to summarize relevant information gathered from the mobile apps using RStudio. ResultsOf the 1943 mobile apps initially identified, 46 were eligible, with almost 70% of the apps being intended for the general public. Most apps were from Vietnam (n=9, 20%), followed by Malaysia, Singapore, and Thailand (n=6 each, 13%). Of note, most apps for quarantine monitoring (n=6, 13%) were mandatory for the target users or a population subset. The most common function was health monitoring (32/46, 70%), followed by raising public health awareness (19/46, 41%) through education and information dissemination. Other functions included monitoring quarantine (12/46, 26%), providing health resources (12/46, 26%). COVID-19 vaccination management functions began to appear in parallel with vaccine rollout (7/46, 15%). Regarding the timing of the introduction of mobile solutions, the majority of mobile apps emerged close to the commencement dates of other public health policies in the early stages of the pandemic between March and April 2020. ConclusionsIn East and South-East Asia, most governments used mobile health apps as adjuncts to public health measures for tracking COVID-19 cases and delivering credible information. In addition, these apps have evolved by expanding their functions for COVID-19 vaccination