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.

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!

Visiting Australian researchers

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!

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

MIE and VITALIS in Gothenburg, April 2018

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:

https://mie2018.org/home/proceedings/

Anticipating ageing

A new article Anticipating ageing: Older adults reading their medical records (full-text for subscribers) on older adults perceptions of reading their medical record and using e-health services, written in collaboration between HIBA project and researchers of Swedish DOME Consortium has been published in Information Processing & Management. A post-print version of the article can be found at http://www.istohuvila.se/node/560

Abstract

In spite of the general interest in health information behaviour, there is little earlier research on how older adults, who are still active in working life but approaching retirement, differ from other age groups. A survey with Swedish patients who had ordered and read their medical record was conducted to map the preferences and motivations of older adults (born 1946-1960) ordering a copy of their medical record, and using medical records based e-health and information services in the future. The results do not indicate an obvious linear relationship between age and motivation to use online health information but show several differences between the age groups. Older adults were less interested in communication with their medical doctor by e-mail. Yet, they had searched health information in the Internet during the last week more likely than young. They were more inclined to read medical record to get an overview of their health than young, but less confident that they understood most of the content or turn to their family and friends to seek help than the elderly. When compared to younger adults and elderly people, older adults are the least confident and least motivated to use online health information. It is suggested that older adulthood can be seen as a transitory stage of life when the need of health information increases and engagement with health changes. The results agree with prior research on the potential usefulness of (online) medical records as a way to inform citizens. However, specific provision strategies may be necessary to match the needs and motivations of different age groups.