Classifying Health Information Interactions and their Motivations

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.

Abstract

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.

HIBA @ ASIS&T-EC Health Information Behaviour Symposium

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.

Abstract

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.

Review study on older adults’ views on e-health

A HIBA project review on earlier literature on older adults’ views on e-health services shows that a heterogeneous body of research exists on older adults’ views on eHealth services. Common themes in the literature include eHealth service uses, enablers and barriers, and outcomes. eHealth service use can have positive outcomes but also negative consequences. The findings show that the methodological approach of the study is linked with the type of findings reported. There seems also to be a positivity bias particularly in quantitative studies.

Citation: Hirvonen, N.; Enwald, H.; Känsäkoski, H.; Eriksson-Backa, K.; Nguyen, H.; Huhta, A.-M. & Huvila, I. Older adults’ views on eHealth services: a systematic review of scientific journal articles. International Journal of Medical Informatics, 2020, 135.

What is usefulness?

A new HIBA article discusses the meaning of usefulness in the context of health information and ehealth use and more broadly how it has been and could be used in information science research. Instead of focussing merely on relevance of information or usability of systems, the focus on usefulness can help to address the user and use (versus e.g. system, content or topic) perspective to engagements with people, services, systems and beyond. The article, available on open access, is based on presentation held in June at CoLIS 10 conference in Ljubljana and published as part of the proceedings that conference in Information Research journal.

Huvila, I.; Enwald, H.; Hirvonen, N. & Eriksson-Backa, K.
The concept of usefulness in library and information science research.
Information Research, 2019, 24(4), paper colis1907.

Abstract: 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. 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. A review of literature relating to the concept of usefulness was conducted to examine how it has been used in library and information science. 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. 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.

ASIST 2019

The Annual Meeting of Association for Information Science and Technology (ASIS&T) was organized in Melbourne, Australia at 19th to 23rd October 2019.

The theme of the conference was INFORMATION… ANYONE, ANYWHERE, ANY TIME, ANY WAY

ASIST could be considered as one of the main conferences of Library and Information Science (LIS) field. This year conference was already 82nd meeting of this research community. This was the second time ever outside of North America and first time it was organized in Australia!

The keynote speakers

In her opening keynote ‘Mixing reality for cultural proliferation’ Mikaela Jade discussed her journey as an Indegenous woman building a technology company Indigital. The company works to develop new ways to digitise and translate knowledge and culture from remote communities.

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Opening keynote photo from ASIST 2019 pages

Helena Teede, an Endocrinologist, the Executive Director of Monash Partners Academic Health Sciences Centre and Director of the Monash Centre for Health Research and Implementation, School of Public Health, Monash University gave the closing keynote ‘Changing the Paradigm: Driving Disruption Through Collaboration to Create a Learning Health System’.

She talked about the lack of strategic planning of research, silos & lack of systems approaches. The ideas of data-driven healthcare improvement were strongly present in her statements and she also called for metrics to guide action in healthcare.

General notions and an example of a panel

Regarding to education in LIS field, data science seemed to be a hot topic, especially in the USA. Several sessions related to this discussion. Past was pondered, e.g., in a panel named Does Information Science Need History and Foundations? Furthermore, also the future of the field raised in the discussions. ASIST has always presentations and panels from a wide spectrum of topics and this year was not an exception. Everything between Breaking Social Media Bubbles for Information Globalization to Research Data Sharing Across National Borders. The Final Program Booklet can be found from here.

As an example of the several interesting panel discussions available in the conference we highlight here one.

Kristina attended a panel discussion about digital equity for marginalized and displaced people. The panellists were Gregory Rolan and Sue McKemmish, both from Monash University, Australia, Kathy Carbone from UCLA, USA, and Barbara Reed from Recordkeeping Innovation in Australia. The theme included for example refugees, stateless people or otherwise geographically displaced people but also children taken into custody. Digital equity was seen as equity for all in new and emerging digital information systems, also those who do not participate within the digital sphere. Documentation overall was seen as central, both the right to having ones information kept in records, and to know where possible records exist, what they contain and why they have been created. These records can be of different kinds, including digital health records. In addition to more formal records, also, for example, children in care could have apps where they can keep their own records.

HIBA project

The members of HIBA were well presented in the panel discussion “Information Behaviour and Practices Research Informing Technology and Service Design”.

The panel discussion, lead by Noora Hirvonen, included short presentations from Isto Huvila (via a video), Ying-Shang Liu, Kristina Eriksson-Backa and Heidi Enwald.

The panel discussion, lead by Noora Hirvonen, included short presentations from Isto Huvila (via a video), Ying-Shang Liu, Kristina Eriksson-Backa and Heidi Enwald. After the presentations the discussion was openned and we received many interesting and lively questions and comments.

Isto discussed archaeology-related information work and practices in relation to development of documentation and information management technologies and services. Heidi talked about her research about health promotion e-health services design and HIL from the projects MOPO, GASEL and PrevMetSyn.

Ying-Hsang Liu from Australian National University in Canberra presented his work with engineers in the aerospace industry, for whom he is a consultant. According to him, industry understands challenges but may not have solutions and hence IBP models and theories are important. Engineers are also interested in metrics and hence we need to communicate with them about metrics, what results can be expected. In industry, time is valuable; results might be needed within a certain time limit. There is also a challenge with working with industry projects in that they are concerned about intellectual property and thus results might have to be kept secret.

Kristina presented the HIBA project and three of the studies conducted within it: the online survey study on diabetes risk test users by Hai Nguyen, the focus group study of older adults’ views on MyKanta and the recently conducted national survey of 1500 Finns aged 55-70 years, and their health information behaviour and views of e-health services. Some implications concerning the format and contents of e-health services based on the results were presented.

More info about our panel:

Huvila I, Enwald H, Eriksson-Backa K, Liu Y-H & Hirvonen N (2019) Information behaviour and practises research informing technology and service design. Proceedings of the Association for Information Science and Technology , 56(1), 541-545. ASIS&T 2019, Melbourne, Australia, 19-23 October 2019. (Panels and alternative events) https://asistdl.onlinelibrary.wiley.com/doi/full/10.1002/pra2.86?af=R

We also had time to go and meet some penguins!

About ASIST: https://www.asist.org/

2020 ASIS&T Annual Meeting goes to Pittsburgh!

Planning the final year of HIBA

The current project group gathered for a two-day work meeting in Turku/Åbo for reviewing  past and planning the forthcoming work during the final year of the HIBA project. Analysis of data from a set of focus group interviews conducted in 2018 is going on and data from a national survey conducted during the summer is about to start. There are several publications reporting new findings from the project coming out during the next few months and the project is also organising a panel session at the forthcoming Association for Information Science and Technology Annual Meeting in Melbourne, Australia on the role of information behaviour technology and service design.

What is usefulness and how to use it?

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.

Abstract

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.

New HIBA publications

HIBA research group has published new results from the project during the past months.

Huvila, I., Hirvonen, N., Enwald, H., & Åhlfelt, R.-M. (2019). Differences in Health Information Literacy Competencies Among Older Adults, Elderly and Younger Citizens. In Kurbanoğlu, S.; Špiranec, S.; Ünal, Y.; Boustany, J.; Huotari, M. L.; Grassian, E.; Mizrachi, D. & Roy, L. (Ed.), Information Literacy in Everyday Life. ECIL 2018. Communications in Computer and Information Science(pp. 136–143). Cham: Springer. https://doi.org/10.1007/978-3-030-13472-313. Open access post-print of the article.

Abstract: To address the research gap on age-based differences in health information literacy (HIL), we investigated how younger (born 1960-) and older adults (1946-1960), and elderly citizens (-1945) differed from each other by their HIL competencies. Data were collected with an online survey of patients using the Swedish national electronic health record system. Altogether, 2,587 users responded. One-way ANOVA with post hoc tests revealed several differences between the groups: younger adults were less likely to value health information than older adults; older adults and elderly were least likely to compare information from multiple sources and had trouble in determining health information needs; older adults were most likely to have trouble understanding health terminology and the elderly to have difficulties in understanding medicinal package labels. The study shows that HIL is not necessarily improving or declining but adapting to challenges of advanced age.

Huvila, I.; Moll, J.; Enwald, H.; Hirvonen, N.; Åhlfeldt, R.-M. & Cajander, Å. (2019) Age-related differences in seeking clarification to understand medical record informationInformation Research, 24(1), paper isic1834. Open access.

Abstract: Introduction Patient accessible electronic health records can be used to inform and empower patients. However, their use may require complementary information seeking since they can be difficult to interpret. So far, relatively little is known of the information seeking that takes place in connection to health record use, and especially the way it varies in different age groups. A better understanding of patients’ preferences of where and how to find explanatory information provides valuable input for the development of health information provision and counselling services.
Method. The analysis is based on the results of a national survey of Swedish individuals (N=1,411) who had used a national patient accessible electronic health record system (Journalen).
Analysis. The data were analysed in SPSS 24.0 using Kruskal-Wallis tests for detecting group-wise differences and Jonckheere-Terpstra tests for discovering age-related trends in the data.
Findings. Older patients were more likely to use a telephone and younger patients to use social contacts to ask for clarification. Generally, older adults born between 1946-1960 appear as passive information seekers.
Conclusion. Age groups differ in their preferences on how to seek clarification, which underlines the importance of a better understanding of individual differences in delivering not only technically but also intellectually accessible health information. Calling by telephone could be a habit of present older generations whereas, to a degree, searching information online could be a comparable habit of current younger generations.

HIBA at the Finnish Information Studies Symposium 2018

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.

Hälsoinformation och e-hälsa / Terveystieto ja e-terveys / Health
information and e-health

WIS 2018

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.