Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Abstract Background: Connected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services. Objective: The objective of this study was to explore user attitudes toward sharing personal health data (PHD). The study was executed within the first year after the implementation of the new General Data Protection Regulation (GDPR) legal framework. Methods: The authors analyzed the results of an online questionnaire survey to explore the willingness of 8004 people using connected health services across four European countries to share their PHD and the conditions under which they would be willing to do so. Results: Our findings indicate that the majority of users are willing to share their personal PHD for scientific research (1811/8004, 22.63%). Age, education level, and occupation of the participants, in addition to the level of digitalization in their country were found to be associated with data sharing attitudes. Conclusions: Positive attitudes toward data sharing for scientific research can be perceived as an indication of trust established between users and academia. Nevertheless, the interpretation of data sharing attitudes is a complex process, related to and influenced by various factors

The Extent and Coverage of Current Knowledge of Connected Health: Systematic Mapping Study

Background: This paper examines the development of the Connected Health research landscape with a view on providing a historical perspective on existing Connected Health research. Connected Health has become a rapidly growing research field as our healthcare system is facing pressured to become more proactive and patient centred. Objective: We aimed to identify the extent and coverage of the current body of knowledge in Connected Health. With this, we want to identify which topics have drawn the attention of Connected health researchers, and if there are gaps or interdisciplinary opportunities for further research. Methods: We used a systematic mapping study that combines scientific contributions from research on medicine, business, computer science and engineering. We analyse the papers with seven classification criteria, publication source, publication year, research types, empirical types, contribution types research topic and the condition studied in the paper. Results: Altogether, our search resulted in 208 papers which were analysed by a multidisciplinary group of researchers. Our results indicate a slow start for Connected Health research but a more recent steady upswing since 2013. The majority of papers proposed healthcare solutions (37%) or evaluated Connected Health approaches (23%). Case studies (28%) and experiments (26%) were the most popular forms of scientific validation employed. Diabetes, cancer, multiple sclerosis, and heart conditions are among the most prevalent conditions studied. Conclusions: We conclude that Connected Health research seems to be an established field of research, which has been growing strongly during the last five years. There seems to be more focus on technology driven research with a strong contribution from medicine, but business aspects of Connected health are not as much studied

Recommendations to enable and sustain personal health data access and sharing:an empirical approach

Abstract The amount of personal health data (PHD) for each individual in Europe has radically increased due to the adoption of various technologies in everyday life, such as mobile phones and wearable sensors. PHD can include different types of health-related data, such as medical records, fitness tracking, transportation data, or behavioral data from social media. Health data are invaluable to support people in acquiring timely knowledge about their health and wellbeing. Access to PHD provides users of information systems (IS) with the opportunity to acquire self-knowledge and participate in decision making, while sharing PHD with other stakeholders can facilitate knowledge sharing. Despite this, recent reports support that, on average, only 18% of the European population have used their PHD through digital services (European Commission, 2019). Prior research about PHD access in IS has mainly focused on the technical aspects of the topic. This had led to limited empirical knowledge about users’ access encounters with PHD. In the frame of this dissertation, access encounters are considered the moments that users interacted with their PHD through IS. As for PHD sharing, the implementation of new General Data Protection Regulation (GDPR) renewed research interest towards the exploration of users’ willingness to share their PHD with other stakeholders in a healthcare context. A literature review addressed the lack of case studies in prior work about PHD access and sharing, thus motivating the development of the first empirical studies. The development of the rest of the studies was exploratory, building upon the findings that emerged through the course of empirical work. This doctoral dissertation uses an embedded case study consisting of four embedded units to answer a single research question (RQ). This dissertation contributes with updated knowledge that lies at the intersection of IS, health informatics, and human-data interaction (HDI), answering the RQ: What recommendations are relevant for IS designers and developers to enable PHD access and sharing? Based on the findings of the case study, five recommendations (R) were found to be relevant for IS designers and developers in connected health (CH) to foster the development of IS. The five recommendations can also sensitize policy makers to consider the timely nature of the two research topics. The recommendations are particularly relevant to this audience due to the timeframe of the study (2018–2020), which coincides with the enforcement of the new GDPR in May 2018. The recommendations highlight the temporal and subjective nature of PHD access and sharing, introducing implications at a theoretical and practical level. This dissertation proposes the consideration of the five recommendations during the design and development phases of IS: R1) consider how users perceive health and PHD; R2) consider what data types and formats foster PHD access; R3) simplify medical terms, provide visualizations, and interfaces to nurture usability and personalization features, thus promoting thus the perceived value of PHD; R4) consider age, education, occupation, and digitalization to encourage PHD sharing with stakeholders; and R5) consider data privacy under the prism of data types, access control and trust, conditions of sharing, and the purpose of data processing.Tiivistelmä Henkilökohtaisen terveystiedon määrä Euroopassa on kasvanut jokapäiväisen teknologian, kuten matkapuhelimien ja puettavien sensorien, lisäännyttyä. Henkilökohtainen terveystieto voi sisältää erilaista terveyteen liittyvää tietoa, kuten potilasasiakirjoja, kuntoilutietoa tai terveyskäyttäytymiseen liittyvää tietoa. Terveystieto auttaa ihmisiä ymmärtämän terveyttään ja hyvinvointiaan. Pääsy terveystietoon antaa tietojärjestelmien käyttäjille mahdollisuuden parempaan itsetuntemukseen ja päätöksentekoon osallistumiseen, ja terveystiedon jakaminen voi auttaa tietämyksen jaossa. Tästä huolimatta tutkimukset osoittavat, että vain 18 prosenttia eurooppalaisista on käyttänyt henkilökohtaista terveystietoaan (European Commission, 2019). Aiempi tutkimus henkilökohtaisen terveystiedon saatavuudesta on keskittynyt teknisiin seikkoihin. Tästä johtuen empiiristä tutkimustietoa käyttäjien kokemuksista henkilökohtaisen terveystiedon saatavuudesta on vähemmän. Tässä väitöskirjassa tarkastellaan niitä ajallisia hetkiä, joissa ihmiset käyttivät tietojärjestelmiä henkilökohtaisen terveystietonsa hyödyntämiseen. Eurooppalaisen tietosuojalainsäädännön (General Data Protection Regulation) käyttöönottoa tarkasteltiin tutkimuksessa henkilökohtaisen terveystiedon jakamisen näkökulmasta. Tutkimuksessa raportoitu kirjallisuuskatsaus osoitti, että empiirisestä tutkimuksesta henkilökohtaisen terveystiedon käyttämisestä ja jakamisesta on puute. Tämä johti tutkimuksessa raportoituun tutkimukseen. Tutkimusmenetelmänä käytettiin sulautettua tapaustutkimusta, joka koostui neljästä tapausyksiköstä, jotka vastasivat yhteen tutkimuskysymykseen. Tämä tutkimuskysymys on: Mitkä suositukset ovat relevantteja tietojärjestelmien suunnittelijoille henkilökohtaisen terveystiedon käytön ja jakamisen suunnitteluun? Tapaustutkimuksen löydösten pohjalta väitöskirjassa esitetään viisi suositusta, jotka ovat relevantteja terveyteen liittyvien tietojärjestelmien suunnittelijoille ja toteuttajille. Nämä viisi suositusta voivat myös auttaa päättäjiä terveystiedon jakamiseen liittyvissä ajankohtaisissa kysymyksissä. Suositukset ovat erityisen relevantteja tälle kohderyhmälle, koska tutkimus on tehty juuri uuden eurooppalaisen tietosuojalainsäädännön (GDPR) soveltamisen aikaan 2018. Suositukset korostavat henkilökohtaisen terveystiedon käytön ja jakamisen ajallista ja subjektiivista luonnetta. Sillä on vaikutuksia sekä teoreettisella ja käytännön tasolla. Ehdotetut suositukset ovat: R1) ota huomioon se, kuinka käyttäjät ymmärtävät terveyttä ja terveyteen liittyvää tietoa, R2) ota huomioon eri datatyypit ja formaatit terveystiedon saavutettavuudessa, R3) yksinkertaista lääketieteellisiä termejä, tarjoa visualisaatioita ja rajapintoja käytettävyyden ja personoinnin tueksi ja lisätäksesi henkilökohtaisen terveystiedon koettua arvoa, R4) ota huomioon ikä, koulutustausta, ammattitausta ja digitalisaation aste henkilökohtaisen terveystiedon jakamiseen kannustamisessa, ja R5) ota huomioon yksityisyys eri tietotyyppien, luottamuksen, jakamisen ehtojen ja tiedon prosessoinnin tarkoituksen näkökulmista

Rehabilitation needs of head and neck cancer patients and stakeholders:case study

Abstract Background: The incidents of Head and Neck Cancer (HNC) are rising worldwide, suggesting that this type of cancer is becoming more common. The foreseen growth of incidents signifies that future rehabilitation services will have to meet the needs of a wider population. Objective: The aim of this paper is to explore the needs of patients, caregivers and healthcare professionals during HNC rehabilitation. Methods: This paper reports the empirical findings from a case study that was conducted in a cancer rehabilitation center in Copenhagen to elicit the needs of HNC cancer patients, informal caregivers and healthcare professionals. Results: Four areas of needs during the rehabilitation process were identified: service delivery, emotional, social and physical needs. Service delivery needs and emotional needs have been identified as the most prevalent. Conclusions: Stakeholders’ needs during the rehabilitation process were found to be interrelated. All stakeholders faced service delivery challenges in the form of provision and distribution of information, including responsibilities allocation between municipalities, hospitals and rehabilitation services. Emotional and social needs have been reported by HNC patients and informal caregivers, underlining the importance of inclusion of all actors in the design of future healthcare interventions. Connected Health (CH) solutions could be valuable in provision and distribution of information

Infections, antibiotic treatment and mortality in patients admitted to ICUs in countries considered to have high levels of antibiotic resistance compared to those with low levels

Background: Antimicrobial resistance is an increasing concern in ICUs worldwide. Infection with an antibiotic resistant (ABR) strain of an organism is associated with greater mortality than infection with the non-resistant strain, but there are few data assessing whether being admitted to an intensive care unit (ICU) with high levels of antimicrobial resistance is associated with a worse outcome than being admitted to an ICU with low rates of resistance. The aim of this study was, therefore, to compare the characteristics of infections and antibiotic treatments and patient outcomes in patients admitted to ICUs in countries considered as having high levels of antibiotic resistance and those admitted to ICUs in countries considered as having low levels of antibiotic resistance.Methods: Data from the large, international EPIC II one-day point prevalence study on infections in patients hospitalized in ICUs were used. For the current study, we compared the data obtained from patients from two groups of countries: countries with reported MRSA rates of ≥ 25% (highABR: Greece, Israel, Italy, Malta, Portugal, Spain, and Turkey) and countries with MRSA rates of < 5% (lowABR: Denmark, Finland, Netherlands, Norway, and Sweden).Results: On the study day, 1187/2204 (53.9%) patients in the HighABR ICUs were infected and 255/558 (45.7%) in the LowABR ICUs (P < 0.01). Patients in the HighABR ICUs were more severely ill than those in the LowABR ICUs, as reflected by a higher SAPS II score (35.6 vs 32.7, P < 0.05) and had longer median ICU (12 days vs 5 days) and hospital (24 days vs 16 days) lengths of stay. They also had higher crude ICU (20.0% vs 15.4%) and hospital (27.0% vs 21.5%) mortality rates (both P < 0.05). However, after multivariable adjustment and matched pair analysis there were no differences in ICU or hospital mortality rates between High or LowABR ICU patients overall or among those with infections.Conclusions: Being hospitalized in an ICU in a region with high levels of antimicrobial resistance is not associated per se with a worse outcome. © 2014 Hanberger et al.; licensee BioMed Central Ltd

Infections, antibiotic treatment and mortality in patients admitted to ICUs in countries considered to have high levels of antibiotic resistance compared to those with low levels

Background: Antimicrobial resistance is an increasing concern in ICUs worldwide. Infection with an antibiotic resistant (ABR) strain of an organism is associated with greater mortality than infection with the non-resistant strain, but there are few data assessing whether being admitted to an intensive care unit (ICU) with high levels of antimicrobial resistance is associated with a worse outcome than being admitted to an ICU with low rates of resistance. The aim of this study was, therefore, to compare the characteristics of infections and antibiotic treatments and patient outcomes in patients admitted to ICUs in countries considered as having high levels of antibiotic resistance and those admitted to ICUs in countries considered as having low levels of antibiotic resistance. Methods: Data from the large, international EPIC II one-day point prevalence study on infections in patients hospitalized in ICUs were used. For the current study, we compared the data obtained from patients from two groups of countries: countries with reported MRSA rates of greater than= 25% (highABR: Greece, Israel, Italy, Malta, Portugal, Spain, and Turkey) and countries with MRSA rates of less than 5% (lowABR: Denmark, Finland, Netherlands, Norway, and Sweden). Results: On the study day, 1187/2204 (53.9%) patients in the HighABR ICUs were infected and 255/558 (45.7%) in the LowABR ICUs (P less than 0.01). Patients in the HighABR ICUs were more severely ill than those in the LowABR ICUs, as reflected by a higher SAPS II score (35.6 vs 32.7, P less than 0.05) and had longer median ICU (12 days vs 5 days) and hospital (24 days vs 16 days) lengths of stay. They also had higher crude ICU (20.0% vs 15.4%) and hospital (27.0% vs 21.5%) mortality rates (both P less than 0.05). However, after multivariable adjustment and matched pair analysis there were no differences in ICU or hospital mortality rates between High or LowABR ICU patients overall or among those with infections. Conclusions: Being hospitalized in an ICU in a region with high levels of antimicrobial resistance is not associated per se with a worse outcome

Infections, antibiotic treatment and mortality in patients admitted to ICUs in countries considered to have high levels of antibiotic resistance compared to those with low levels

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