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  • 1. Børøsund, E.
    et al.
    Cvancarova, M.
    Moore, S. M.
    Ekstedt, Mirjam
    KTH, School of Technology and Health (STH), Health Systems Engineering, Systems Safety and Management.
    Ruland, C. M.
    Comparing effects in regular practice of e-communication and web-based self-management support among breast cancer patients: Preliminary results from a randomized controlled trial2014In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 16, no 12, article id e295Article in journal (Refereed)
    Abstract [en]

    Background: While Web-based interventions have been shown to assist a wide range of patients successfully in managing their illness, few studies have examined the relative contribution of different Web-based components to improve outcomes. Further efficacy trials are needed to test the effects of Web support when offered as a part of routine care. Objective: Our aim was to compare in regular care the effects of (1) an Internet-based patient provider communication service (IPPC), (2) WebChoice, a Web-based illness management system for breast cancer patients (IPPC included), and (3) usual care on symptom distress, anxiety, depression, (primary outcomes), and self-efficacy (secondary outcome). This study reports preliminary findings from 6 months' follow-up data in a 12-month trial. Methods: We recruited 167 patients recently diagnosed with breast cancer and undergoing treatment from three Norwegian hospitals. The nurse-administered IPPC allowed patients to send secure e-messages to and receive e-messages from health care personnel at the hospital where they were treated. In addition to the IPPC, WebChoice contains components for symptom monitoring, tailored information and self-management support, a diary, and communication with other patients. A total of 20 care providers (11 nurses, 6 physicians, and 3 social workers) were trained to answer questions from patients. Outcomes were measured with questionnaires at study entry and at study months 2, 4, and 6. Linear mixed models for repeated measures were fitted to compare effects on outcomes over time. Results: Patients were randomly assigned to the WebChoice group (n=64), the IPPC group (n=45), or the usual care group (n=58). Response rates to questionnaires were 73.7% (123/167) at 2 months, 65.9 (110/167) at 4 months, and 62.3% (104/167) at 6 months. Attrition was similar in all study groups. Among those with access to WebChoice, 64% (41/64) logged on more than once and 39% (25/64) sent e-messages to care providers. In the IPPC group, 40% (18/45) sent e-messages. Linear mixed models analyses revealed that the WebChoice group reported significantly lower symptom distress (mean difference 0.16, 95% CI 0.06-0.25, P=.001), anxiety (mean difference 0.79, 95% CI 0.09-1.49, P=.03), and depression (mean difference 0.79, 95% CI 0.09-1.49, P=.03) compared with the usual care group. The IPPC group reported significant lower depression scores compared with the usual care group (mean difference 0.69, 95% CI 0.05-1.32, P=.03), but no differences were observed for symptom distress or anxiety. No significant differences in self-efficacy were found among the study groups. Conclusions: In spite of practice variations and moderate use of the interventions, our results suggest that offering Web support as part of regular care can be a powerful tool to help patients manage their illness. Our finding that a nurse-administered IPPC alone can significantly reduce depression is particularly promising. However, the multicomponent intervention WebChoice had additional positive effects.

  • 2.
    Chang, Fangyuan
    et al.
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Biomedical Engineering and Health Systems, Technology in Health Care. Department of Design, Shanghai Jiao Tong University, Shanghai, China.
    Östlund, Britt
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Biomedical Engineering and Health Systems, Technology in Health Care.
    Kuoppamäki, Sanna
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Biomedical Engineering and Health Systems, Technology in Health Care.
    Domesticating Social Alarm Systems in Nursing Homes: Qualitative Study of Differences in the Perspectives of Assistant Nurses2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e44692Article in journal (Refereed)
    Abstract [en]

    Background: New social alarm solutions are viewed as a promising approach to alleviate the global challenge of an aging population and a shortage of care staff. However, the uptake of social alarm systems in nursing homes has proven both complex and difficult. Current studies have recognized the benefits of involving actors such as assistant nurses in advancing these implementations, but the dynamics by which implementations are created and shaped in their daily practices and relations have received less attention. Objective: Based on domestication theory, this paper aims to identify the differences in the perspectives of assistant nurses when integrating a social alarm system into daily practices. Methods: We interviewed assistant nurses (n=23) working in nursing homes to understand their perceptions and practices during the uptake of social alarm systems. Results: During the four domestication phases, assistant nurses were facing different challenges including (1) system conceptualization; (2) spatial employment of social alarm devices; (3) treatment of unexpected issues; and (4) evaluation of inconsistent competence in technology use. Our findings elaborate on how assistant nurses have distinct goals, focus on different facets, and developed diverse coping strategies to facilitate the system domestication in different phases. Conclusions: Our findings reveal a divide among assistant nurses in terms of domesticating social alarm systems and stress the potential of learning from each other to facilitate the whole process. Further studies could focus on the role of collective practices during different domestication phases to enhance the understanding of technology implementation in the contexts of complex interactions within a group.

  • 3. Christensen, Sara E.
    et al.
    Möller, Elisabeth
    Bonn, Stephanie E.
    Ploner, Alexander
    Bälter, Olle
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Lissner, Lauren
    Bälter, Katarina
    Relative Validity of Micronutrient and Fiber Intake Assessed With Two New Interactive Meal- and Web-Based Food Frequency Questionnaires2014In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 16, no 2, p. e59-Article in journal (Refereed)
    Abstract [en]

    Background: The meal-and Web-based food frequency questionnaires, Meal-Q and MiniMeal-Q, were developed for cost-efficient assessment of dietary intake in epidemiological studies. Objective: The objective of this study was to evaluate the relative validity of micronutrient and fiber intake assessed with Meal-Q and MiniMeal-Q. The reproducibility of Meal-Q was also evaluated. Methods: A total of 163 volunteer men and women aged between 20 and 63 years were recruited from Stockholm County, Sweden. Assessment of micronutrient and fiber intake with the 174-item Meal-Q was compared to a Web-based 7-day weighed food record (WFR). Two administered Meal-Q questionnaires were compared for reproducibility. The 126-item MiniMeal-Q, developed after the validation study, was evaluated in a simulated validation by using truncated Meal-Q data. Results: The study population consisted of approximately 80% women (129/163) with a mean age of 33 years (SD 12) who were highly educated (130/163, 80% with >12 years of education) on average. Cross-classification of quartiles with the WFR placed 69% to 90% in the same/adjacent quartile for Meal-Q and 67% to 89% for MiniMeal-Q. Bland-Altman plots with the WFR and the questionnaires showed large variances and a trend of increasing underestimation with increasing intakes. Deattenuated and energy-adjusted Spearman rank correlations between the questionnaires and the WFR were in the range rho=.25-.69, excluding sodium that was not statistically significant. Cross-classifications of quartiles of the 2 Meal-Q administrations placed 86% to 97% in the same/adjacent quartile. Intraclass correlation coefficients for energy-adjusted intakes were in the range of .50-.76. Conclusions: With the exception of sodium, this validation study demonstrates Meal-Q and MiniMeal-Q to be useful methods for ranking micronutrient and fiber intake in epidemiological studies with Web-based data collection.

  • 4.
    Christensen, Sara
    et al.
    Karolinska Institutet.
    Möller, Elisabeth
    Karolinska Institutet.
    Bonn, Stephanie
    Karolinska Institutet.
    Ploner, Alexander
    Karolinska Institutet.
    Wright, Antony
    Sjölander, Arvid
    Karolinska Institutet.
    Bälter, Olle
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Lissner, Lauren
    Göteborgs Universitet.
    Bälter, Katarina
    Karolinska Institutet.
    Two New Meal- and Web-Based Interactive Food Frequency Questionnaires: Validation of Energy and Macronutrient Intake2013In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 15, no 6, p. e109-Article in journal (Refereed)
    Abstract [en]

    Background: Meal-Q and its shorter version, MiniMeal-Q, are 2 new Web-based food frequency questionnaires. Their meal-based and interactive format was designed to promote ease of use and to minimize answering time, desirable improvements in large epidemiological studies. Objective: We evaluated the validity of energy and macronutrient intake assessed with Meal-Q and MiniMeal-Q as well as the reproducibility of Meal-Q. Methods: Healthy volunteers aged 20-63 years recruited from Stockholm County filled out the 174-item Meal-Q. The questionnaire was compared to 7-day weighed food records (WFR; n=163), for energy and macronutrient intake, and to doubly labeled water (DLW; n=39), for total energy expenditure. In addition, the 126-item MiniMeal-Q was evaluated in a simulated validation using truncated Meal-Q data. We also assessed the answering time and ease of use of both questionnaires. Results: Bland-Altman plots showed a varying bias within the intake range for all validity comparisons. Cross-classification of quartiles placed 70%-86% in the same/adjacent quartile with WFR and 77% with DLW. Deattenuated and energy-adjusted Pearson correlation coefficients with the WFR ranged from r=0.33-0.74 for macronutrients and was r=0.18 for energy. Correlations with DLW were r=0.42 for Meal-Q and r=0.38 for MiniMeal-Q. Intraclass correlations for Meal-Q ranged from r=0.57-0.90. Median answering time was 17 minutes for Meal-Q and 7 minutes for MiniMeal-Q, and participants rated both questionnaires as easy to use. Conclusions: Meal-Q and MiniMeal-Q are easy to use and have short answering times. The ranking agreement is good for most of the nutrients for both questionnaires and Meal-Q shows fair reproducibility.

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  • 5. Ciolfi Felice, Marianela
    et al.
    Søndergaard, Marie Louise Juul
    Balaam, Madeline
    Analyzing User Reviews of the First Digital Contraceptive: Mixed Methods Study2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, p. e47131-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People in Western countries are increasingly rejecting hormone-based birth control and expressing a preference for hormone-free methods. Digital contraceptives have emerged as nonhormonal medical devices that make use of self-tracked data and algorithms to find a user's fertile window. However, there is little knowledge about how people experience this seemingly new form of contraception, whose failure may result in unwanted pregnancies, high health risks, and life-changing consequences. As digital contraception becomes more widely adopted, examining its user experience is crucial to inform the design of technologies that not only are medically effective but also meet users' preferences and needs. OBJECTIVE: We examined the user experience offered by Natural Cycles-the first digital contraceptive-through an analysis of app reviews written by its users worldwide. METHODS: We conducted a mixed methods analysis of 3265 publicly available reviews written in English by users of Natural Cycles on the Google Play Store. We combined computational and human techniques, namely, topic modeling and reflexive thematic analysis. RESULTS: For some users of digital contraception, the hormone-free aspect of the experience can be more salient than its digital aspect. Cultivating self-knowledge through the use of the technology can, in turn, feel empowering. Users also pointed to an algorithmic component that allows for increased accuracy over time as long as user diligence is applied. The interactivity of the digital contraceptive supports mutual learning and is experienced as agential and rewarding. Finally, a digital contraceptive can facilitate sharing the burden of contraceptive practices or highlight single-sided responsibilities while creating points of friction in the required daily routines. CONCLUSIONS: Digital contraception is experienced by users as a tamed natural approach-a natural method contained and regulated by science and technology. This means that users can experience a method based on a digital product as "natural," which positions digital contraceptives as a suitable option for people looking for evidence-based nonhormonal contraceptive methods. We point to interactivity as core to the user experience and highlight that a digital contraceptive might allow for collaboration between partners around contraceptive practices and responsibilities. We note that the user diligence required for the digital contraceptive to provide accurate and frequent data is sometimes not enough. Future research could look at designing (and redesigning) digital contraceptives with primary users and intimate partners, enhancing the experience of tamed naturalness; exploring how trust fluctuates among involved actors and in interactions with the technology; and, ultimately, designing more inclusive approaches to digital contraception.

  • 6.
    Gaudenzi, Giulia
    et al.
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology. KTH, Centres, Science for Life Laboratory, SciLifeLab. Karolinska Inst, Dept Global Publ Hlth, Tomtebodavagen 18 A, S-17177 Stockholm, Sweden..
    Kumbakumba, Elias
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda..
    Rasti, Reza
    Karolinska Inst, Dept Global Publ Hlth, Tomtebodavagen 18 A, S-17177 Stockholm, Sweden..
    Nanjebe, Deborah
    MSF Epictr Mbarara Res Ctr, Mbarara, Uganda..
    Reu, Pedro
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Affinity Proteomics. KTH, Centres, Science for Life Laboratory, SciLifeLab.
    Nyehangane, Dan
    MSF Epictr Mbarara Res Ctr, Mbarara, Uganda..
    Martensson, Andreas
    Uppsala Univ, Dept Womens & Childrens Hlth, Int Maternal & Child Hlth, Uppsala, Sweden..
    Nassejje, Milly
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda..
    Karlsson, Jens
    Karolinska Univ Hosp, Dept Microbiol Tumor & Cell Biol, BioClinicum, Stockholm, Sweden..
    Mzee, John
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda.;Holy Innocents Childrens Hosp, Mbarara, Uganda..
    Nilsson, Peter
    KTH, Centres, Science for Life Laboratory, SciLifeLab. KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Affinity Proteomics.
    Businge, Stephen
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda.;Holy Innocents Childrens Hosp, Mbarara, Uganda..
    Loh, Edmund
    Karolinska Univ Hosp, Dept Microbiol Tumor & Cell Biol, BioClinicum, Stockholm, Sweden.;Nanyang Technol Univ, SCELSE, Singapore, Singapore..
    Boum, Yap, II
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda.;MSF Epictr Mbarara Res Ctr, Mbarara, Uganda..
    Svahn Andersson, Helene
    KTH, Centres, Science for Life Laboratory, SciLifeLab. KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology.
    Gantelius, Jesper
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology. KTH, Centres, Science for Life Laboratory, SciLifeLab.
    Mwanga-Amumpaire, Juliet
    Mbarara Univ Sci & Technol, Fac Med, Dept Paediat & Child Hlth, Mbarara, Uganda.;MSF Epictr Mbarara Res Ctr, Mbarara, Uganda..
    Alfven, Tobias
    Karolinska Inst, Dept Global Publ Hlth, Tomtebodavagen 18 A, S-17177 Stockholm, Sweden..
    Point-of-Care Approaches for Meningitis Diagnosis in a Low-Resource Setting (Southwestern Uganda): Observational Cohort Study Protocol of the "PI-POC" Trial2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 11, article id e21430Article in journal (Refereed)
    Abstract [en]

    Background: A timely differential diagnostic is essential to identify the etiology of central nervous system (CNS) infections in children, in order to facilitate targeted treatment, manage patients, and improve clinical outcome. Objective: The Pediatric Infection-Point-of-Care (PI-POC) trial is investigating novel methods to improve and strengthen the differential diagnostics of suspected childhood CNS infections in low-income health systems such as those in Southwestern Uganda. This will be achieved by evaluating (1) a novel DNA-based diagnostic assay for CNS infections, (2) a commercially available multiplex PCR-based meningitis/encephalitis (ME) panel for clinical use in a facility-limited laboratory setting, (3) proteomics profiling of blood from children with severe CNS infection as compared to outpatient controls with fever yet not severely ill, and (4) Myxovirus resistance protein A (MxA) as a biomarker in blood for viral CNS infection. Further changes in the etiology of childhood CNS infections after the introduction of the pneumococcal conjugate vaccine against Streptococcus pneumoniae will be investigated. In addition, the carriage and invasive rate of Neisseria meningitidis will be recorded and serotyped, and the expression of its major virulence factor (polysaccharide capsule) will be investigated. Methods: The PI-POC trial is a prospective observational study of children including newborns up to 12 years of age with clinical features of CNS infection, and age-/sex-matched outpatient controls with fever yet not severely ill. Participants are recruited at 2 Pediatric clinics in Mbarara, Uganda. Cerebrospinal fluid (for cases only), blood, and nasopharyngeal (NP) swabs (for both cases and controls) sampled at both clinics are analyzed at the Epicentre Research Laboratory through gold-standard methods for CNS infection diagnosis (microscopy, biochemistry, and culture) and a commercially available ME panel for multiplex PCR analyses of the cerebrospinal fluid. An additional blood sample from cases is collected on day 3 after admission. After initial clinical analyses in Mbarara, samples will be transported to Stockholm, Sweden for (1) validation analyses of a novel nucleic acid-based POC test, (2) biomarker research, and (3) serotyping and molecular characterization of S. pneumoniae and N. meningitidis. Results: A pilot study was performed from January to April 2019. The PI-POC trial enrollment of patients begun in April 2019 and will continue until September 2020, to include up to 300 cases and controls. Preliminary results from the PI-POC study are expected by the end of 2020. Conclusions: The findings from the PI-POC study can potentially facilitate rapid etiological diagnosis of CNS infections in low-resource settings and allow for novel methods for determination of the severity of CNS infection in such environment.

  • 7.
    Grünloh, Christiane
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Myreteg, Gunilla
    Örebro University Business School, Örebro, Sweden.
    "The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden2016In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 18, no 6, p. 470-483Article in journal (Refereed)
    Abstract [en]

    Background: Uppsala County in Sweden launched an e-health patient portal named Journalen in 2012, which allows patients to access their medical records over the Internet. However, the launch of Journalen was critically debated in the media. The professionals were strongly skeptical and one reason was possible negative effects on their work environment. This study hence investigates the assumptions and perspectives of physicians in order to understand their framing of the patient portal in relation to their work environment.

    Objective: The study uses the concept of Technological Frames to examine how physicians in different specialties make sense of the patient portal in relation to their work environment.

    Methods: 12 semi-structured interviews were conducted with physicians from different specialties. Interviews were transcribed and translated. A theoretically informed thematic analysis was performed.

    Results: The thematic analysis revealed four main themes: work tool, process, workload, and control. Physicians perceive medical records as their work tool, written for communication within healthcare only. Considering effects on work environment the physicians held a negative attitude and expected changes, which would affect their work processes in a negative way. Especially that patients might read their test results prior to the physician was seen as possibly harmful for patients and as an interference with their established work practices. They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload. Other perceptions were that the portal would increase controlling and monitoring of physicians, and increase or create a feeling of mistrust from patients. Regarding benefits for the patients most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.

    Conclusions: Supported by the study we conclude: 1) The transfer of a paper-based healthcare process where patients read on paper, into a digital process challenges current work practices and has consequences for the work environment. Mostly this is explained by the changing positions between the physicians and the patient: the latter can drive the process, which reduces the physicians’ ability to guide the patient. 2) The physicians’ experiences were expressed as worries: patients would not understand the content of the record and become unnecessary anxious from misunderstandings. The concerns are to some extent based on a generalized view of patients, which might disregard those, who already actively participate in healthcare. This study hence reveals a need to provide physicians with information about the values for patients from using patient portals. 3) A change of work practices may be beneficial to increase patient participation, but such changes should preferably be designed and discussed with physicians. However, the strong resistance from the physicians made this challenging when launching Journalen.

  • 8.
    Grünloh, Christiane
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Institute of Informatics, Technische Hochschule Köln, University of Applied Sciences, Gummersbach, Germany.
    Myreteg, Gunilla
    Uppsala University, Department of Business Studies.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    “Why Do They Need to Check Me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study2018In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 20, no 1, article id e11Article in journal (Refereed)
    Abstract [en]

    Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians’ constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient’s role, lack of skills (technical or regarding medical jargon), motives to read, and patients’ characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of “power” in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of “monitoring the doctor” but to make sense of the situation.

  • 9.
    Jonsson, Marika
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Habilitering & Hälsa, Västra Götalandsregionen, Skövde, Sweden.
    Johansson, Stefan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID. Faculty of Engineering, LTH Department of Design Sciences, Certec, Lund, Sweden.
    Hussain, Dena
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gulliksen, Jan
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Gustavsson, Catharina
    Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, p. e45118-e45118Article in journal (Refereed)
    Abstract [en]

    AbstractBackground:Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments.

    Objective:This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments.

    Methods:In line with Arksey and O’Malley’s framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus.

    Results:A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements.

    Conclusions:Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services.

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  • 10.
    Moll, Jonas
    et al.
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden..
    Rexhepi, Hanife
    Univ Skövde, Sch Informat, Skövde, Sweden..
    Cajander, Asa
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden..
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS).
    Huvila, Isto
    Uppsala Univ, Dept ALM, Uppsala, Sweden..
    Hägglund, Maria
    Uppsala Univ, Dept Womens & Childrens Hlth, Uppsala, Sweden..
    Myreteg, Gunilla
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden.;Uppsala Univ, Dept Business Studies, Uppsala, Sweden..
    Scandurra, Isabella
    Örebro Univ, Sch Business, Ctr Empir Res Informat Syst, Orebro, Sweden..
    Ahlfeldt, Rose-Mharie
    Univ Skövde, Sch Informat, Skövde, Sweden..
    Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden2018In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed)
    Abstract [en]

    Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

  • 11.
    Moll, Jonas
    et al.
    Uppsala University, Uppsala.
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Huvila, Isto
    Åbo Akademi University, Faculty of Social Sciences and Economics.
    Hägglund, Maria
    Uppsala University, Department of Women's and Children's Health, Uppsala, Sweden.
    Myreteg, Gunilla
    Uppsala University, Department of Information Technology, Department of Business Studies.
    Scandurra, Isabella
    Örebro University.
    Åhlfeldt, Rose-Mharie
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in SwedenIn: Journal of Medical Internet Research, E-ISSN 1438-8871Article in journal (Refereed)
    Abstract [en]

    Background: Internationally, there is a movement toward providing patients online access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens the possibility to access their medical information online. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.

    Objectives: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

    Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chisquare tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

    Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

    Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

  • 12. Rhedin, S. A.
    et al.
    Eklundh, A.
    Ryd-Rinder, M.
    Naucler, P.
    Mårtensson, A.
    Gantelius, Jesper
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology. KTH, Centres, Science for Life Laboratory, SciLifeLab.
    Zenk, I.
    Svahn Andersson, Helene
    KTH, Centres, Science for Life Laboratory, SciLifeLab. KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology.
    Nybond, Susanna
    KTH, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), Protein Science, Nano Biotechnology. KTH, Centres, Science for Life Laboratory, SciLifeLab.
    Rasti, R.
    Lindh, M.
    Andersson, M.
    Peltola, V.
    Waris, M.
    Alfvén, T.
    Protocol Introducing a New Algorithm for Classification of Etiology in Studies on Pediatric Pneumonia: Protocol for the Trial of Respiratory Infections in Children for Enhanced Diagnostics Study2019In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 21, no 4, article id e12705Article in journal (Refereed)
    Abstract [en]

    Background: There is a need to better distinguish viral infections from antibiotic-requiring bacterial infections in children presenting with clinical community-acquired pneumonia (CAP) to assist health care workers in decision making and to improve the rational use of antibiotics. Objective: The overall aim of the Trial of Respiratory infections in children for ENhanced Diagnostics (TREND) study is to improve the differential diagnosis of bacterial and viral etiologies in children aged below 5 years with clinical CAP, by evaluating myxovirus resistance protein A (MxA) as a biomarker for viral CAP and by evaluating an existing (multianalyte point-of-care antigen detection test system [mariPOC respi] ArcDia International Oy Ltd.) and a potential future point-of-care test for respiratory pathogens. Methods: Children aged 1 to 59 months with clinical CAP as well as healthy, hospital-based, asymptomatic controls will be included at a pediatric emergency hospital in Stockholm, Sweden. Blood (analyzed for MxA and C-reactive protein) and nasopharyngeal samples (analyzed with real-time polymerase chain reaction as the gold standard and antigen-based mariPOC respi test as well as saved for future analyses of a novel recombinase polymerase amplification-based point-of-care test for respiratory pathogens) will be collected. A newly developed algorithm for the classification of CAP etiology will be used as the reference standard. Results: A pilot study was performed from June to August 2017. The enrollment of study subjects started in November 2017. Results are expected by the end of 2019.Conclusions: The findings from the TREND study can be an important step to improve the management of children with clinical.

  • 13. Talhouk, Reem
    et al.
    Akik, Chaza
    Araujo-Soares, Vera
    Ahmad, Balsam
    Mesmar, Sandra
    Olivier, Patrick
    Balaam, Madeline
    KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.
    Montague, Kyle
    Garbett, Andrew
    Ghattas, Hala
    Integrating Health Technologies in Health Services for Syrian Refugees in Lebanon: Qualitative Study2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 7, article id e14283Article in journal (Refereed)
    Abstract [en]

    Background: Lebanon currently hosts around one million Syrian refugees. There has been an increasing interest in integrating eHealth and mHealth technologies into the provision of primary health care to refugees and Lebanese citizens. Objective: We aimed to gain a deeper understanding of the potential for technology integration in primary health care provision in the context of the protracted Syrian refugee crisis in Lebanon. Methods: A total of 17 face-to-face semistructured interviews were conducted with key informants (n=8) and health care providers (n=9) involved in the provision of health care to the Syrian refugee population in Lebanon. Interviews were audio recorded and directly translated and transcribed from Arabic to English. Thematic analysis was conducted. Results: Study participants indicated that varying resources, primarily time and the availability of technologies at primary health care centers, were the main challenges for integrating technologies for the provision of health care services for refugees. This challenge is compounded by refugees being viewed by participants as a mobile population thus making primary health care centers less willing to invest in refugee health technologies. Lastly, participant views regarding the health and technology literacies of refugees varied and that was considered to be a challenge that needs to be addressed for the successful integration of refugee health technologies. Conclusions: Our findings indicate that in the context of integrating technology into the provision of health care for refugees in a low or middle income country such as Lebanon, some barriers for technology integration related to the availability of resources are similar to those found elsewhere. However, we identified participant views of refugees' health and technology literacies to be a challenge specific to the context of this refugee crisis. These challenges need to be addressed when considering refugee health technologies. This could be done by increasing the visibility of refugee capabilities and configuring refugee health technologies so that they may create spaces in which refugees are empowered within the health care system and can work toward debunking the views discovered in this study.

  • 14. Varsi, Cecilie
    et al.
    Ekstedt, Mirjam
    KTH, School of Technology and Health (STH), Health Systems Engineering, Systems Safety and Management. Oslo University Hospital, Norway.
    Gammon, Deede
    Ruland, Cornelia M.
    Using the Consolidated Framework for Implementation Research to Identify Barriers and Facilitators for the Implementation of an Internet-Based Patient-Provider Communication Service in Five Settings: A Qualitative Study2015In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 17, no 11, article id e262Article in journal (Refereed)
    Abstract [en]

    Background: Although there is growing evidence of the positive effects of Internet-based patient-provider communication (IPPC) services for both patients and health care providers, their implementation into clinical practice continues to be a challenge. Objective: The 3 aims of this study were to (1) identify and compare barriers and facilitators influencing the implementation of an IPPC service in 5 hospital units using the Consolidated Framework for Implementation Research (CFIR), (2) assess the ability of the different constructs of CFIR to distinguish between high and low implementation success, and (3) compare our findings with those from other studies that used the CFIR to discriminate between high and low implementation success. Methods: This study was based on individual interviews with 10 nurses, 6 physicians, and 1 nutritionist who had used the IPPC to answer messages from patients. Results: Of the 36 CFIR constructs, 28 were addressed in the interviews, of which 12 distinguished between high and low implementation units. Most of the distinguishing constructs were related to the inner setting domain of CFIR, indicating that institutional factors were particularly important for successful implementation. Health care providers' beliefs in the intervention as useful for themselves and their patients as well as the implementation process itself were also important. A comparison of constructs across ours and 2 other studies that also used the CFIR to discriminate between high and low implementation success showed that 24 CFIR constructs distinguished between high and low implementation units in at least 1 study; 11 constructs distinguished in 2 studies. However, only 2 constructs (patient need and resources and available resources) distinguished consistently between high and low implementation units in all 3 studies. Conclusions: The CFIR is a helpful framework for illuminating barriers and facilitators influencing IPPC implementation. However, CFIR's strength of being broad and comprehensive also limits its usefulness as an implementation framework because it does not discriminate between the relative importance of its many constructs for implementation success. This is the first study to identify which CFIR constructs are the most promising to distinguish between high and low implementation success across settings and interventions. Findings from this study can contribute to the refinement of CFIR toward a more succinct and parsimonious framework for planning and evaluation of the implementation of clinical interventions.

  • 15.
    Zhu, Bin
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID. China Academy of Art, China.
    Hedman, Anders
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Feng, Shuo
    KTH, School of Computer Science and Communication (CSC).
    Li, Haibo
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Osika, Walter
    Designing, Prototyping and Evaluating Digital Mindfulness Applications: A Case Study of Mindful Breathing for Stress Reduction2017In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 19, no 6, article id e197Article in journal (Refereed)
    Abstract [en]

    Background: During the past decade, there has been a rapid increase of interactive apps designed for health and well-being. Yet, little research has been published on developing frameworks for design and evaluation of digital mindfulness facilitating technologies. Moreover, many existing digital mindfulness applications are purely software based. There is room for further exploration and assessment of designs that make more use of physical qualities of artifacts. Objective: The study aimed to develop and test a new physical digital mindfulness prototype designed for stress reduction. Methods: In this case study, we designed, developed, and evaluated HU, a physical digital mindfulness prototype designed for stress reduction. In the first phase, we used vapor and light to support mindful breathing and invited 25 participants through snowball sampling to test HU. In the second phase, we added sonification. We deployed a package of probes such as photos, diaries, and cards to collect data from users who explored HU in their homes. Thereafter, we evaluated our installation using both self-assessed stress levels and heart rate (HR) and heart rate variability (HRV) measures in a pilot study, in order to measure stress resilience effects. After the experiment, we performed a semistructured interview to reflect on HU and investigate the design of digital mindfulness apps for stress reduction. Results: The results of the first phase showed that 22 of 25 participants (88%) claimed vapor and light could be effective ways of promoting mindful breathing. Vapor could potentially support mindful breathing better than light (especially for mindfulness beginners). In addition, a majority of the participants mentioned sound as an alternative medium. In the second phase, we found that participants thought that HU could work well for stress reduction. We compared the effect of silent HU (using light and vapor without sound) and sonified HU on 5 participants. Subjective stress levels were statistically improved with both silent and sonified HU. The mean value of HR using silent HU was significantly lower than resting baseline and sonified HU. The mean value of root mean square of differences (RMSSD) using silent HU was significantly higher than resting baseline. We found that the differences between our objective and subjective assessments were intriguing and prompted us to investigate them further. Conclusions: Our evaluation of HU indicated that HU could facilitate relaxed breathing and stress reduction. There was a difference in outcome between the physiological measures of stress and the subjective reports of stress, as well as a large intervariability among study participants. Our conclusion is that the use of stress reduction tools should be customized and that the design work of mindfulness technology for stress reduction is a complex process, which requires cooperation of designers, HCI (Human-Computer Interaction) experts and clinicians.

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