Isto presented at the annual Canadian Association of Information Science conference organized in September online a paper exploring the question of how aging affects experiences and views of information and technology use. The presentation and extended abstract are available online.
Some more HIBA findings were presented at the International Conference on Health Information Management Research (ISHIMR) organized online by Linnaeus University and the University of Sheffield. Material for the presentation that focused on developing a classification of the types of interactions with electronic patient portals and health records can be found below.
Current research on electronic patient portals and electronic health records shows a broad range of benefits to both 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 with 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.
Results from several past and on-going HIBA studies were featured in a presentation held by Heidi at the Information Science Trends symposium on Health Information behaviour organised by the ASIS&T European Chapter this week.
New e-health services and technologies are developed around the world with expectations of multiple individual and system-wide benefits. Even if there is no single reason why many e-health projects have failed to deliver their expected gains, one central contributing factor has been their narrow focus on technology and a failure to understand the use of e-health in the context of citizens’ general health information behaviour. Here we report key findings from the ongoing research project Taking Health Information Behaviour into Account: implications of a neglected element for successful implementation of consumer health technologies on older adults, funded by the Academy of Finland (2015-2020). The project aims at explicating premises for the development of e-health services that are comprehensible, meaningful, and useful in the context of how older adults seek, use and manage information, and more specifically health information, in their everyday lives.
ASIST 2019 conference was organised in Melbourne in the end of October 2019. Members of HIBA participated this conference, but as you travel so far from Finland, it also makes sense to visit local researchers that work on topics interesting to HIBA. Luckily, I had an opportunity to do exactly this.
SYDNEY
In Sydney I visited professor Kirsten McCaffery, the leader of Health Literacy Lab in the University of Sydney. They are a research group at the University of Sydney School of Public Health.
University of Sydney
Furthermore, I spend a day with the faculty members of IKM and Digital Studies Program, University of Technology Sydney (UTS). I had the priviledge to have Senior lecturer Bhuva Narayan as my host for this visit. The discussions varied from differences of countries statuses in eHealth, research on older adults to teaching Information Studies related topics.
Bhuva and Heidi and inspiring discussions!
UTS, University of Technology Sydney
WOLLONGONG
In Wollongong I was taken a good care by the faculty members of Centre for Persuasive Technology and Society, in University of Wollongong. During a two day visit I also met local PhD students.
Workshop together with local PhD students
CANBERRA
In Canberra I met several researchers from Australian National University (ANU).
From ANU Institute for Communication in Health Care professor Diana Slade kindly found time to chat with me about the research done in their research group and in HIBA.
I also had lively discussion with Associate Professor Hanna Suominen, originally from Turku. The topics varied from strategic Our Health in Our Hands research initiate to differences of doing research and living in Finland and in Australia.
Enthusiastic visitor
Dr Ying-Hsang Liu showed me kindly around the campus and Canberra and future research topics were invented e.g., over a lovely japanese dinner.
Heidi and Ying-Hsang
MELBOURNE
Before the conference, and arrival of HIBA colleagues Kristina and Noora, I had a really nice unofficial breakfast meeting with Rebecca French from Victorian Health Promotion Foundation.
Meeting Rebecca
During my visit, in addition to researchers, I also saw a lot of beautiful landscapes, big cities and also some native animals 🙂 Overall the trip was a success!
Wallabi said Hi!
Noora, Heidi and Isto were participating in the 10th Conceptions in Library and Information Science Conference (CoLIS) in Ljubljana, Slovenia the week before midsummer. Heidi presented together with Isto a co-authored paper with Noora and Kristina titled The concept of usefulness in library and information science research discussing the notion of usefulness and its relation to other concepts and ways of seeing information, systems and services useful and approachable. The study is a part of HIBA project and aims at a better understanding of the different aspects of how e-health services can be experienced useful by their users.
Introduction. There is not much doubt that information, information services and systems need to be useful. In this light, the relatively lack of conceptual elaboration of the concept of usefulness in the library and information science literature can be regarded as somewhat surprising.
Method. This paper provides a conceptual overview of the use of the notion of usefulness in library and information science literature, explicates its relation to key parallel concepts, and on the basis of an empirical vignette in the context of health information research, discusses the potential limits and advantages of referring to usefulness instead of and together with other related concepts.
Analysis. A review of literature relating to the concept of usefulness was conducted to examine how it has been used in library and information science.
Results. A close reading of the literature shows an overlap between related concepts but at the same time, diverging foci of interest in and emphasis on what and how information, information services and, for instance, information systems are considered beneficial or suitable for their users and particular uses.
Conclusion. There is a need for better conceptual clarity in the literature regarding usefulness and related concepts. The review shows that usefulness can be literally a useful concept for addressing the user and use (versus e.g. system, content or topic) perspective to engagements with people, services, systems and beyond.
HIBA project is organising a session on health information at the Finnish national Information Studies Symposium 2018 in Turku/Åbo Finland with two papers presenting the findings from the project. Links to extended abstracts of all presentations can be found below.
The biannual conference Well-being in the information society was organized in Turku on August 27-29, 2018, with the theme “Fighting inequalities”. The conference strives to be multidisciplinary and attracts delegates from several disciplines and well-being was in this conference analyzed from different viewpoints including wealth, the digital world, social policy and health. Several of the presentations were of interest also for the project HIBA.
The first keynote speaker was Director Sascha Marschang from the European Public Health Alliance, who talked about opportunities and gaps in digital health in Europe. Challenges include an ageing society and growing numbers of non-communicable diseases, as well as barriers to healthcare access. A digital divide is still a reality in Europe with e.g. elderly, lower educated and minority groups excluded, and there is a need for digital health literacy, that is a complex concept and involves several competencies, including basic, digital, media and health literacies. eHealth can provide opportunities and complement conventional healthcare, it can engage people, be fun, timely, accurate, and tailored but cannot replace face-to-face contact and Sascha Marschang claimed that health and eHealth must work in harmony. He also called for research into actual use of eHealth!
Roland Trill from Flensburg University of Applied Science, Germany, continued on the topic health literacy and had combined the eHEALS scale and the Digital Health Literacy Instrument (DHLI) to study current digital health literacy of diabetes in Germany. He called for further research on digital health literacy and claimed that health care professionals are target groups for improving this literacy. Anne-Marie Tuikka (University of Turku) showed that the claims by the keynote speaker seemed to be true. She had studied nationwide data gathered by the National Institute for Health and Welfare and focused on the digital disability divide, defined as the gap between disabled and non-disabled people. The results showed that internet use was related to age, education level, marital status, and employment, and that people needing disability services used internet less than others. Internet can have an empowering impact on disabled people, but the results indicate that there could be a digital disability divide in Finland.
The conference chair, professor Reima Suomi, opening the WIS 2018 conference (photo: Gunilla Widén)
Nilmini Wickramasinghe from Deakin University, Australia, presented a study on the use of games for controlling diabetes and obesity. A pilot study already showed that there is an interest in using games for this purpose. Vitalija Petrulaitiene (Tampere University of Technology), on the other hand, presented and overview of how employee well-being can be supported through digital services, especially applications related to fitness, nutrition, or ergonomics. Marina Weck from Häme University of Applied Science presented digital assistive technology that means to use ICT for the support of everyday tasks and activities among elderly. A pilot study found that ageing people’s needs and preferences for digital assistive technology were positive, although they were not yet familiar with the latest devices or applications, and hence, for example, healthcare service providers could increase the utilization of technology and facilitate the integration of digital assistive technology. Hanna-Leena Huttunen (University of Oulu) had found that patients suffering from migraines are interested in using wearable sensors and mobile applications to manage their symptoms, especially to identify early symptoms and help them in everyday life.
The conference dinner was held at Turku Castle
Susanne Hämäläinen (Karelia University of Applied Sciences) and Päivi Sihvo (Savonia University of Applied Sciences) claimed that digitalization has not progressed as quickly as desired in social and health care and that both employees and citizens lack know-how and education about new technological developments. Digitalization should help customers and increase their welfare and that is why eProfessionals that can act as moderators between IT staff and health professionals are one important solution for digitalization. Tiina Nokkala (University of Turku, School of Economics) said that health information systems are not patient-centred, in the best case patients can look at their own medical records, but not add anything to them. There is a need for shared decision-making, and being able to make own entries can enhance feelings of management and empowerment among patients, but in order for patients to make their own entries in their records (e.g. blood sugar or blood pressure measurement data), there is a need to use similar metadata as for entries by professionals. Jani Koskinen from Turku University School of Economics, on his part, suggested that as modern healthcare relies strongly on technology and information systems there is also a special need for eHealth ethics. eHealth ethics could be the intersection of the traditional codes of ethics used within the two fields of healthcare and information technology or systems.
Kristina chaired a session on digital health and later presented a short paper by Hai Nguyen and herself based on first results from the survey of use and experiences of the online diabetes risk test at the website of the Finnish Diabetes Association. The paper is found in the proceedings. The results indicate that an active information-seeking style is sígnificantly related to intentions to seek more information in the case of increased risk of diabetes type 2, and that this has to be taken into consideration when providing information on websites offering self-assessments.
PACIS 2018 was organized in 26th to 30th June in Yokohama, Japan. It invited submissions in current and emerging areas of Information Systems research, especially those related to the conference theme “Opportunities and Challenges for the Digitized Society: Are We Ready?”
The annual conference offered keynote speeches and several concurrent tracks in addition to workshops. Tracks focused e.g., on smart cities, e-government, human computer interaction, IS education and e-learning and IS in healthcare.
The first keynote was given by Ikujirō Nonaka, emeritusprofessor, best known for his study of knowledge management. Nonaka has also proposed the SECI model, to present the spiraling knowledge processes of interaction between explicit knowledge and tacit knowledge.
Keynote by Nonaka
PACIS had attracted over 500 registered participants from all around the world. The conference took place in very modern Minato Mirai district in Yokohama.
Sight of Minato Mirai, the central business district of Yokohama.
Lunch with a view. Bentō lunch box provided at the conference.
HIBA-project presented work in progress by Nguyen, Eriksson-Backa and Enwald with the title: Preliminary results of a survey on user opinions and experiences on an online diabetes risk test.
Heidi Enwald presenting the poster by HIBA project.
Finland was nicely represented also as the best paper award was given to Finnish-Australian collaboration:
Ethical Evaluation of a Value Sensitive Persuasive System: Case Milky Way
by Liisa Kuonanoja (University of Oulu), Shahla Meedya (University of Wollongong), Khin Than Win (University of Wollongong) and Harri Oinas-Kukkonen (University of Oulu)
The conference proceedings and also our paper can be found here:
https://drive.google.com/drive/folders/1aI6jwwAAF40h238qsR85n7Er1ZOdQFmf
Medical Informatics Europe (MIE) conference was arranged in Gothenburg, Sweden in 24.-26.4.2018. At the same time Scandinavian eHealth event, VITALIS, took place in the same premises.
MIE covers a wide range of topics relating to medical informatics – from health literacy, different eHealth tools to data mining.
The first MIE was hosted in Cambridge, UK in 1978 and therefore MIE2018 marked the 40th anniversary for the conference. MIE2018 offered around 200 oral and 150 poster presentations. In addition, there were around 50 workshops, demonstrations and tutorials to attend to.
MIE2018 and Vitalis
Tuesday started early with a set of sessions and workshops. From HIBA research group Heidi Enwald was one of the organizers and presenters of the workshop “Re-defining eHealth Literacy for the 21st century. Discussing the evolution of the concept from different perspectives”.
In the workshop and, also afterwards, different definitions and measures of eHealth literacy were discussed. It was seen that we also need to get forward from discussing these issues; we need to identify what differentiates eHealth literacy from other health related literacy concepts, what are the future skills and abilities that relate to this concept and how should they be addressed. Heidi Enwald represents HIBA group in eHealth literacy network that continues discussion around the topic.
After Opening ceremony a Keynote speech was given by Patricia Flatley Brennan, the director of National Library of Medicine.
Keynote speech by Patricia Brennan
She spoke, among other things, about data-powered health that includes optimizing medication effectiveness, more efficient pathogen detection and targeted therapies. She mentioned that the nature of evidence in evidence-based medicine is also about to change. Furthermore, data does not take care of itself and therefore, e.g., data savvy librarians are needed.
As mentioned, MIE2018 provided many overlapping sessions to choose from and the decision was not always easy. Aging did not rise as a topic in many presentations, but there were some. For instance, Madeleine Blusi from Umeå University talked about aging in rural areas and their project that utilizes participatory design and attempts to create a service for including aged people into social activities they would otherwise no longer be able to join.
Madeleine Blusi from Umeå University
The VITALIS exhibition area was also available to visit by the participants of MIE2018.
Several kind of meetings were made possible by MIE2018 and VITALIS
The exhibition mostly contained booths of Swedish eHealth companies and made possible also the discussions between, e.g., researchers and advocates of industry.
The proceedings book of the conference is open access and can be found from the website:
Isto, Noora and Heidi from HIBA project participated in the 5th European Conference in Information Literacy in Saint-Malo, France. All were a part of the Health Information Literacy Special Session organised by Anne-Kathrin Mayer (ZIPD, Leibniz Institute for Psychology Information) and Maija-Leena Huotari (University of Oulu).
In the session, Veronika Kuhberg-Lasson (ZIPD) discussed the health information literacy knowledge (HILK) of students from vocational schools in Germany. According to the study, lower education lead to lower HILK with no significant differences between vocations. However, when tested for personality differences, the authors suggested that instead of the level of education, the use of untrustworthy information sources might be related to higher levels of extraversion.
Heidi presented a paper on the Relationship between Everyday Health Information Literacy and Attitudes towards Mobile Technology among Older People, a cooperation between researchers participating in the HIBA project, Oulu Deaconess Institute and the University of Oulu. The study investigated how everyday health information literacy (EHIL) was related to the use of traditional and advanced mobile information technologies, and how older adults felt about the use of advanced mobile technologies (i.e. smart phones, tablet computers). Regarding their EHIL, only 28% felt that it is easy to access reliable health information from the Internet. A minority had used advanced mobile information technologies, but the attitudes in the group of respondents were generally rather positive. The findings showed that confidence and positive opinions on EHIL had more positive opinions on mobile information technology. The study suggests that older adults with different levels of EHIL should be engaged in the development of new mobile information technologies.
Noora presented a paper related to EHIL together with Teija Keränen and Maija-Leena Huotari titled Examining the Applicability of the Everyday Health Information Literacy Screening Tool in the Context of Energy. In the study, The factorial structure of the EHIL screening tool modified for energy information was similar to the original tool. The tool can be used to find individuals who lack motivation or have difficulties in finding or evaluating information.
Anna-Maija Huhta (University of Oulu), who has previously worked in HIBA project, presented a co-authored paper Concepts Related to Health Literacy in Online Information Environments: A Systematic Review. Huhta and her colleagues had conducted a review of how information is approached in various health related literacy concepts. Majority of the analysed texts were written in medical and health sciences. The most common concepts were health literacy, ehealth literacy, health information literacy, and (everyday) health information literacy. Similar to all definitions was that all focussed on the ability to understand, comprehend and use information but also to use information as a tool. Differences related to the role of prior knowledge, information needs, critical evaluation of information and types of information considered.
Sigríður Björk Einarsdóttir and Ágústa Pálsdóttir had investigated the health information literacy of parents of children with a disability or long-term illness using qualitative interview study. The authors conclusion was that information seeking takes time and especially with information that should be easily available, takes time and effort.
Finally, Anne-Kathrin Mayer (presented by Veronika Kuhberg-Lasson) investigated the different approaches to measuring information literacy skills. The authors had found discrepancies between objective and subjective measures, and suggested further research on their causes and relations to other factors.
As a whole, the presentations show that it is not uncomplicated to measure and study health information literacy and to say what should be measured and how. Appropriate practices, confidence and good outcomes depend on multiple factors — as their lack of. At the same time, it seems that it is possible to develop scales that can be useful as proxies of certain constellations of practices to understand better how people interact with health information.
2017-09-20 at 2 58 pm: Sheila Webber live blogged the session at http://information-literacy.blogspot.se/2017/09/health-information-literacy-session-pam.html