International Symposium on Health Information Management Research

Foreword

Peter Bath, Evalill Nilsson — Tue, 03 May 2022 00:00:00 +0200

Digital health information – opportunities and challenges for active engagement for personal health and well-being

Anne Moen — Tue, 03 May 2022 00:00:00 +0200

Digital health information is transforming health care, driving ongoing practice transformation, new application areas and opportunities for innovation and change. In this keynote, I will share a vision for active citizen engagement using digital information for health and well-being purposes where we, as citizens, can benefit from emerging opportunities. To take full advantage of opportunities for a) self-care and prevention of ill-health, b) collaboration and coordination in periods of active treatment, or c) selfmanagement to reap the full benefits of ongoing therapy, understanding access to information, comprehension of health information (literacy), and citizens deliberate every-day choices are important. Current challenges include the restricted access to information, apprehension regarding the integrity of information, retaining meaning when data are used for multiple purposes and lack of clear governance. I will share examples from ongoing research where we seek to equip citizens with novel tools to engage in self-care, collaboration and self-management and discuss experiences and challenges for the potential of digital tools to foster engagement in personal health and well-being.

Designing digital services for better patient health, care and well-being – what evidence do we have?

Sabine Koch — Tue, 03 May 2022 00:00:00 +0200

Digital health services aim to improve care and health system performance, offering new opportunities for delivering health and social care (from prevention and health promotion to curative interventions, rehabilitation and self-management). Whether or not digital health services really provide better health outcomes and contribute to the sustainability of health systems depends to a high degree on how they are designed and implemented in a given context. Apart from the quality of design and implementation processes, systematic assessment and evaluation of digital health services is needed. To date, such evaluations are relatively scarce and difficult to generalize. Nevertheless, there exists a lot of evidence in form of design guidelines for certain digital health services, literature on unintended consequences of health information technology and assessment indicators for eHealth implementation. This keynote will draw upon the available evidence, illustrated by case studies from different research projects.

eHealth 3.0: Personalized digital twins to capture and use different kinds of clinical knowledge

Gunnar Cedersund, Tilda Herrgårdh — Tue, 03 May 2022 00:00:00 +0200

The first generation of eHealth is already a fact: usage of telecommunication to e.g. diagnose patients remotely is now an integrated part of healthcare. We are therefore now in the middle of the second generation of eHealth: artificial intelligence (AI) and machine learning (ML). There are important showcases illustrating that such ML can perform diagnosis and image analysis at the level of a trained radiologist, for specific applications REF. However, ML has critical and inherent shortcomings, which severely limit the impact that ML in itself can have on healthcare. For instance, ML models need the right type of data from thousands of patients to train the models, they do not make use of or add to the physiological or biochemical understanding of the patient or drug, and they are always developed for a single purpose: they have a hard time generalizing to usage of new variables, data, or for prediction of new variables. ML is therefore often referred to as narrow AI. In contrast, mechanistic models can overcome all of these shortcomings, but they take a very long time to develop, and there are no mechanistic models available for all relevant processes in patients. We therefore present a new hybrid approach, which combines strengths of ML and mechanistic modelling; and illustrate how this combination can be used to develop digital twins of a patient.

Using mobile health and the impact on health-related quality of life

Tue, 03 May 2022 00:00:00 +0200

Social Support Dynamics and User Engagement in a Diabetes Online Community using Text Mining

Cidila Da Moura Semedo, Peter Bath, Ziqi Zhang — Tue, 03 May 2022 00:00:00 +0200

Information behaviours within an online support group for autistism spectrum

Suzanne Duffin, Peter A. Bath, Laura Sbaffi — Tue, 03 May 2022 00:00:00 +0200

Multilevel multiscale hybrid model for clinical decision support

Tilda Herrgårdh — Tue, 03 May 2022 00:00:00 +0200

Design and Implementation Framework of Pet-like Companion Robot Technology for Care of Older People: A Scoping Review

Deniz Özdemir, Jaroslav Cibulka, Olga Stepankova, Iva Holmerova — Tue, 03 May 2022 00:00:00 +0200

Smart Glasses in complex care environments, initial studies

Charlotte Romare — Tue, 03 May 2022 00:00:00 +0200

Communication Breakdowns between Nurses and IT Department: Why Hospitals Fail at Improving the Usability of Health Information Technology

Diane Golay, Åsa Cajander, Deman Hussein, Ali Azeez, Stefano Bonacina — Tue, 03 May 2022 00:00:00 +0200

Often, Health Information Technology (HIT) in hospitals consists of off the shelf systems that are configured and implemented by IT department workers. This means that these employees have a significant impact of the usability of HIT systems. Nonetheless, we currently do not know how IT department workers work. This prevents us from formulating educated recommendations aimed at improving HIT usability, known to be poor, especially from nurses’ perspective. In this paper, we hence present the results from an interview study, shedding light on 1) the communication channels that exist between nurses and IT department at a large public hospital in Sweden, and 2) the problems that undermine system-related communication between these two groups. Our findings stress the need for successful two-way communication between nurses and IT department in order to improve the usability of HIT in use.

Customers’ Technology Acceptance of Mobile Applications for Personalized Healthcare

Rositsa Dimitrova, Panayiotis H. Ketikidis — Tue, 03 May 2022 00:00:00 +0200

In line with the global trend towards mobile technologies and the increased interest in personalized healthcare solutions various mobile applications for personalized healthcare have been created. The acceptance rate is lower than accepted and existing academic research reveals the need for further examination of the factors motivating people to use such applications. The present study, based on the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2) model, examines the extent of the influence of price value, social influence, hedonic motivation and performance expectancy on the behavioural intention of end customers to use mobile health applications. The moderating factors age, gender and experience are also assessed. A survey was conducted among 123 residents of Bulgaria, aged 18-50, who are actively using smart phones. The researcher discovered that performance expectancy, followed by hedonic motivation, are the factors with the strongest influence on the individuals’ decision to use mobile health applications

Effectiveness of a computer-assisted algorithm for onsite screening of diabetic retinopathy from retinal photographs at diabetic outpatient clinics

Sheila John, Sangeetha Srinivasan, Keerthi Ram, Mohanasankar Sivaprakasam — Tue, 03 May 2022 00:00:00 +0200

Purpose: To examine the effectiveness of a computer-assisted algorithm for onsite screening for diabetic retinopathy (DR) at diabetic outpatient clinics. Methods: 1263 patients were examined over two years. Undilated fundus photographs were acquired at the clinic. Photographs were independently assessed by an ophthalmologist and optometrist in a darkened room in a masked fashion and also processed through the algorithm. DR was defined per the International Clinical Diabetic Retinopathy Disease Severity Scale and severity of diabetic retinopathy.

Results: 2526 eyes of 1263 patients were assessed. The algorithm successfully graded 2153 (85%) images with 63.04% sensitivity and 79.63% specificity compared to an ophthalmologist; in comparison to an optometrist, sensitivity and specificity were 60.87% and 79.05%, respectively. The agreement between ophthalmologist and optometrist was kappa=0.835 for presence of DR, 0.835 for severity of DR. Conclusion: This algorithm may be a utilized in a diabetic clinic for a quick screening with only the retinal photographs.

Understanding reactions to swine flu, Ebola, and the Zika virus using Twitter data: an outlook for future infectious disease outbreaks

Wasim Ahmed, Peter A. Bath, Laura Sbaffi, Gianluca Demartini — Tue, 03 May 2022 00:00:00 +0200

Infectious disease outbreaks are a serious public health threat which can disrupt world economies. This paper presents an in-depth qualitative analysis of n=15,415 tweets that relate to the peak of three major infectious diseases: the swine flu outbreak of 2009, the Ebola outbreak of 2014, and the Zika outbreak of 2016. Tweets were analysed using thematic analysis and a number of themes and sub-themes were identified. The results were brought together in an abstraction phase and the commonalities between the cases were studied. A notable similarity which emerged was the rate at which Twitter users expressed intense fear and panic akin to that of the phenomena of “moral panic” and the “outbreak narrative”. Our study also discusses the utility of using Twitter data for in-depth qualitative research as compared to traditional interview-methods. Our study is the largest in-depth analysis of tweets on infectious diseases and could inform public health strategies for future outbreaks such as the coronavirus outbreak.

Cancer patients´ information seeking behaviour related to online electronic healthcare records

Hanife Rexhepi, Isto Huvila, Rose-Mharie Åhlfeldt, Åsa Cajander — Tue, 03 May 2022 00:00:00 +0200

Patients’ online access to their EHR together with the rapid proliferation of medical information on the Internet has changed the way patients use information to learn about their health. It is well documented that patients often turn to the Internet to find information about their health. However, little is known about patients´ information seeking behaviour when using online EHRs. By using information horizons as an analytical tool this paper aims to investigate the information behaviour of cancer patients who have chosen to view their EHRs (readers) and to those who have not made that option (non-readers). Thirty interviews were conducted with patients. Based on information horizons, it seems that non-reading is associated with living in a narrower information world in comparison to readers. The findings do not suggest that the smallness would be a result of an active avoidance of information, or that it would be counter-productive for the patients.

Patient Empoverment and its Connection to Trust

Nomie Eriksson, Eva Söderström, Rose-Mharie Åhlfeldt — Tue, 03 May 2022 00:00:00 +0200

Patient Empowerment (PE) allows patients to be more active in managing their own health and quality of life. The aim of this paper is to analyze how trust affects PE, in the context of healthcare information systems. An interview study was conducted concerning patients’ online access to electronic healthcare records. Results show that PE requires that patients trust the information that healthcare professionals and their electronic health record systems provide. Without trust, patients cannot control their own participation in relation to the healthcare professionals. This may result in a diminished ability to participate in the healthcare processes regarding their own care. Practical implications include acquired knowledge about and awareness of how trust influences PE, with particular emphasis on healthcare professionals. A trust model is presented that illustrates the trustor-trustee dimensions of PE. This model has both theoretical and practical implications in its illustration of how trust and PE connect.

Fine-grained text simplification in French: steps towards a better grammaticality

Anaïs Koptient, Natalia Grabar — Tue, 03 May 2022 00:00:00 +0200

The question on easy access to medical and health information by patients has attracted attention of the society and researchers. It has been indeed observed that poor understanding of medical and health information by patients may be harmful for their healthcare process. We assume that simplification and adaptation of technical documents may provide a solution to this situation. While the dedicated guidelines to the simplification summarize different kinds of criteria to consider, actually, it is still difficult to respect all these criteria. Usually, automatic systems for text simplification address some lexical or syntactic transformations. Besides, little work is done on simplification and adaptation of medical and health texts. We propose to combine lexical and syntactic simplification within a rulebased system, and to make it more fine-grained through additional processing. More particularly, we consider transformation of passive sentences into active sentences, and we control the grammatical concordance within sentences. We work with technical medical documents in French. The results are mainly evaluated according to the three measures specifically dedicated to the simplification: semantics, simplicity and grammaticality.

Designing an App for Maternity Care: Improving Communication between Swedish Midwives and Arabic-speaking Women

Jean E Stevenson, Gunilla Byrman — Tue, 03 May 2022 00:00:00 +0200

Good communication is essential for good healthcare. In maternity care, inadequate communication
may contribute to poorer outcomes in pregnancy. A large number of Syrian, Arabic-speaking
immigrants arrived in Sweden in 2015-2016. A trans-disciplinary team acted as intermediaries
between midwives and a technical company to develop a Swedish-Arabic communication app for use
in antenatal care. An earlier study describes the creation of the content and the development of the
prototype. This paper describes the next phase of the study, i.e., testing the prototype, refining the
structure and content, and development of the next version. A user-centred approach with a norm
critical perspective was applied. Workshops and observations were performed for interaction between
the midwives and the research group, facilitating development from a user perspective. A final version
of the app was developed. Future plans are to evaluate the app and produce a Swedish-English
version.

Comparing Two Definitions of ‘Welfare technology’ - An Ideal-type Analysis Using Industrial and Welfare Societies

Annika Hasselblad — Tue, 03 May 2022 00:00:00 +0200

The Swedish government has recently invested millions in ‘welfare technologies’, which are aimed at both enhancing safety and solve the demographic problem of an increasing elderly population and a consequent lack of healthcare personnel. Studies have shown that when welfare technologies are implemented, core values are getting lost due to a lack of knowledge on how to transform the caregiving and care-taking relationship through the use of digital technology. This study investigates correspondences between values associated with two welfare technology definitions and the ideal-types of a welfare and an industrial society. The results show that the definition created by IT & Telecom Industries includes values that are similar to those of the industrial society ideal-type, while the definition created by the Swedish Auxiliary Institute includes values similar to those associated with the welfare society ideal-type. This shows a gap in value prioritization of the creators of these definitions, which leads to confusion regarding the purpose of welfare technologies.

Classifying Health Information Interactions and their Motivations: A Study with Older Adults and Electronic Patient Portals

Isto Huvila, Kristina Eriksson-Backa, Noora Hirvonen, Heidi Enwald — Tue, 03 May 2022 00:00:00 +0200

Current research on electronic patient portals and electronic health records shows a broad range of benefits to patients, healthcare professionals and healthcare when patients are allowed to take part of their medical record information. There are, however, shortcomings in the current knowledge about patients’ and other stakeholders’ information interactions with electronic health record systems and what motivates them to use these. We present a tentative classification of information interactions with an electronic patient portal, the stakeholders involved in the interactions and reasons that motivate patients to interact with electronic health record information. The purpose of the classification scheme is 1) to inform the design of useful health information access systems, and simultaneously to 2) contribute to the broader information interaction research by acting as a first step in developing a more generic classification that brings together information interactions, their stakeholders and stakeholder motivations to engage with information.

A novel sensor-based architecture using 5G and Blockchain for remote and continuous health monitoring

Adelina Basnolli, Hasan Cana — Fri, 14 Aug 2020 00:00:00 +0200

The healthcare sector strives to improve the quality of care delivered to patients, especially considering new digital technologies, such as sensor-based networks (SBN). The application of SBN can help to provide remote and continuous monitoring for patients that need continuous treatment and management. In this context, this research proposed a novel sensor-based architecture for healthcare monitoring including 5G as a recent technology for low latency data communication. Blockchain is another component that is integrated to prevent forgery, tampering and enable more secure transmission. Furthermore, this study proposed a unique data architecture that is based on a new protocol that aims to transmit gathered sensor data over existing network architecture (for example, routers) without the need for intermediate devices such as mobile phones, PDAs or tablets. The proposed data architecture is discussed for its application in healthcare through two case scenarios, continuous monitoring of chronic diseases and back pain.

Continuous real-time remote monitoring of severely or chronically ill children

Edith Maier, Pascale Baer-Baldauf, Peter Jaeschke, Ulrich Reimer, Tom Ulmer — Tue, 03 May 2022 00:00:00 +0200

Compared to parents of healthy children, parents of severely or chronically ill children have significantly worse physical and mental health and a lower quality of life, e.g. because of lack of sleep. The proposed solution aims at assisting caregivers by means of a remote monitoring service run by professional nursing staff which should allow parents to get a good night’s sleep. A smart algorithm has been developed to detect if a particular parameter (heart rate, respiration rate or oxygen saturation) has exceeded a pre-defined threshold and thus may imply an emergency. Parents are only alerted after a professional nurse in the monitoring centre has cross-checked vital parameter trends and carried out an audio-visual inspection. The quality and accuracy of the system has been validated through iterative testing including a test performed in a children’s hospital to ensure that the monitoring system is not inferior to a hospital set-up.

The sustainability of non-12-step alcohol online support groups: views from group users

Sally Sanger, Peter A. Bath, Jo Bates — Tue, 03 May 2022 00:00:00 +0200

Online support groups for people with health issues are important digital sources of information for their users, and this includes alcohol online support groups (AOSGs) which provide help to problem drinkers. It is vital that these groups are sustainable as otherwise their usefulness and contribution to patient self-care and wellbeing is limited. The aim of the study drawn upon in this paper was to explore the impact of AOSGs’ discussion forums on users’ beliefs about problem drinking. The study involved semi-structured interviews with twenty-five users of online support groups for people who do not follow the 12-step programme for recovery of Alcoholics Anonymous. This paper focuses on users’ perspectives on sustainability, and the findings suggest that the general approach of the group to recovery and its social dynamics are especially important. It provides a useful contribution to the literature in offering a rare insight into the voices of users of non-12-step groups.

The Benefits of Using Online Health Support Groups for Information Acquisition for People with Type 2 Diabetes in the UK

Abdulaziz Almanea, Peter A. Bath, Laura Sbaffi — Tue, 03 May 2022 00:00:00 +0200

Type 2 diabetes (T2D) is a self-managed chronic condition that requires certain skills and knowledge to manage, both by the patient and health care professionals. People with T2D take daily decisions regarding their health and are responsible for the consequences. This creates a need to use different resources to obtain the required knowledge and the skills to control and manage the condition. This paper reports on a study to investigate the advantages of using online health support groups (OHSGs) for information exchange for people with T2D in the UK. In this paper, we collected data from 814 threads and posts from three diabetes UK-based OHSGs and analysed these using thematic analysis. The thematic analysis revealed three main benefits of using OHSGs for information acquisition: (1) Fulfilling information needs, (2) Overcoming barriers and (3) Supporting control and management of the condition. The results suggest that OHSGs serve as an excellent source for information acquisition for people with T2D.

Patients’ views on information about medications: a pharmacy-based survey focusing on their information sources and experiences of pharmacists using a clinical decision support system

Tora Hammar, My Zetterholm — Tue, 03 May 2022 00:00:00 +0200

The aim of this study was to describe patients’ view on information regarding their medication with focus on community pharmacists’ use of the clinical decision support system EES (electronic expert support system). This study was performed as a survey among patients who were collecting prescription medication at seven Swedish community pharmacies, with 281 respondents (response rate of 68%). Results show that patients receive information regarding their medication from many different sources with differences related to age, gender and native language. In general, most patients seemed satisfied with the information they had about their medicines, and with the information they got from pharmacists. Results show that awareness of how pharmacists work to improve medication safety, and knowledge about EES is low. However, results indicate that many patients have high trust in pharmacists, expect them to check for potential DRPs and are positive to pharmacists using EES more.

Electronic Health Records: Non-Swedish Speaking Refugee’s Perspective

Dua Abdulrazak Kadhim, Sarfraz Iqbal, Päivi Jokela — Tue, 03 May 2022 00:00:00 +0200

Electronic health record (EHR) is a ubiquitous e-health tool that includes both Electronic Medical Record (EMR) and personal health record (PHR). EHR is aimed to be a versatile digital tool that can benefit both caregivers and patients through Quick and easy access to medical information at any time from hospitals or primary care. However, the fact that the bulk of core records, including self-service data for patients, is only available in Swedish may limit the scope, availability and feasibility of self service through EHRs access for refugee patients who are non-Swedish speakers. Research results suggest that the EHRs should be meaningful, modified, and improved based on patient’s needs, by actively involving patients in their healthcare. The issues such as EHRs an information sharing communication System, lack of Information about using EHR, language barrier a hinderance in using EHR, EHRs as medical recommendation system, better instructions about EHRs, presenting medical information in diagnosis part in EHRs in other languages and presenting medical information in diagnosis part in EHRs by sound are very important to address non-Swedish speaking refugee patients’ needs to use EHRs.

Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health

Hanife Rexhepi, Jonas Moll, Isto Huvila, Rose-Mharie Åhlfeldt — Tue, 03 May 2022 00:00:00 +0200

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient´ preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of e.g., medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N=2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p=0.001) and the same goes for those who are not working/have worked in healthcare (p=0.007). An effect of disease groups was also found, showing that diabetes patients in particular want to receive bad news through the PAEHR