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.

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.

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!

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.

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.

 

New article: Taking Health Information Behaviour into Account in the design of e-health services

The HIBA project approach and rationale for studying health information behaviour and health information literacy as a premise of developing successful e-health services is discussed in a new article just published in the Finnish Journal for eHealth and eWelfare vol 8, issue 4.

Abstract

The aim of this article is to bring forward the benefits of a better integration of a comprehensive understanding of individuals information behaviour in the design and development of e-health services. This study is a descriptive review based on a non-exhaustive selection of literature that describes the state-of-the-art, problems and opportunities identified in e-health, health information behaviour and health information literacy research. By focusing on how to tailor the information provided and the technological devices to fit the information behaviour, the approach has also potential to uncover new insights into how to adequately implement and integrate ICTs into everyday life practices of other hard-to-reach groups in society. We presuppose that it will be possible to give practical recommendations based on a combined understanding of individual differences in health information behaviour and users expectations and experiences, acquired through empirical studies focusing on older adults. Moreover, the usefulness of health information literacy as an indicator of the patterns and competences related to health information behaviour is highlighted.

Full text of the article at FinJeHeW site.

Learning about information literacy at ECIL and participating ASIST

The European Conference on Information Literacy (ECIL) took place at Prague, Czech Republic at 10.-13.10.2016. Straight after ECIL the Annual Meeting of the Association for Information Science and Technology (ASIST) gathered researchers all around the world to Copenhagen, Denmark. Timing of the conferences provided me a great opportunity to join both of the conferences.

ECIL is initiated and organized by the Department of Information Management of Hacettepe University and Department of Information and Communication Sciences of Zagreb University. The main theme this year was Information Literacy in the Inclusive Society. IMG_9144_ECIL_blogiin

The keynote speeches were given by Tara Brabazon and Jan Van Dijk, and futhermore, invited speakers were Ole Pilerot, Vít Šisler and Annemaree Lloyd. Especially the keynote speeches raised discussion as Tara was intentionally very provocative in her speech and Jan´s perspective was from outside of the information and library science field.

As a member of the HIBA project I presented some of our results relating to older adults health information literacy skills. The study presented was part of the GASEL study.

WP_20161010_17_44_11_Pro_blogiin Heidi

Heidi´s PechaKucha presentation on “everyday health information literacy of older people in Finland”.

ECIL focused strongly on libraries and information literacy teaching, but there was always also a more theoretical and/or general paper or panel sessions to attend for.

IMG_9410_ECIL blogiin

Example of the interesting panel discussions in ECIL.

The abstract book of ECIL can be found here: http://ecil2016.ilconf.org/wp-content/uploads/2016/10/ECIL2016_BoA.pdf and selected full text papers will be later published in a ECIL’s Proceedings Books are  published by Springer (agreement with the publisher is on yearly basis) under Communications in Computer and Information Science series (CCIS).

ASIST´s theme was Creating Knowledge, Enhancing Lives through Information & Technology. Plenary speeches were given by Greg Welch from University of Central Florida and by Markus Bundschus from Roche Diagnostics.

The topics of ASIST presentations and panels covered all from health information behaviour to digital data curation and the science of games. In addition to sessions relating to information behaviour I found myself listening sessions about e.g., multiculturalism of LIS education, digital sociology and information science research, open peer review and lifelogging. Examples of the panels in ASIST: IMG_9862_ASIST blogiinIMG_9811_ASIST blogiin

ASIST included not only paper presentations and panels but also several poster presentations. Again I was there presenting the results relating HIBA and GASEL projects. This time the topic was “opinions and use of mobile information technology around older people”.

IMG_9828_ASIST blogiin Heidi

Heidi with the poster.

The ASIST proceedings and information of the previous conferences can be found here (free view for ASIST members): https://www.asist.org/publications/annual-meeting-proceedings/

Older people were present also in the street view of Copenhagen with a campaign “Do we ever stop dreaming?”

IMG_9796_ASIST_blogiin

Next ECIL will be organized in St-Malo, France and next ASIST at Washington DC. Shall we meet there?

(Post blog written by Heidi Enwald)

Focus on health information behaviour

IMG_9067_Isto_HIBA

Heidi, Noora and Isto from HIBA participated in this year’s ISIC – The Information Behaviour Conference in Zadar, Croatia. Also Anna-Maija who worked in the project in autumn 2015 was with us in Zadar.

Heidi Enwald, foto: Mate Juric

Heidi reported findings from an earlier GASEL project in a paper titled Health information behaviour, attitudes towards health information and motivating factors for physical activity among older people: differences by sex and age together with coauthors, Noora  and her coauthors presented a poster Validating the factorial structure of the everyday health information literacy screening tool in three different populations, and we all from HIBA presented the project in a poster, imaginatively titled Taking health information behaviour into account in the development of e-health services.

IMG_8904_Ian

Prof. Ian Ruthwen

There were also several other interesting papers relating directly to the themes of HIBA. Prof. Ian Ruthwen discussed in his opening keynote information behaviour during significant life events. The talk gave much food for thought as health related events are a major category of these types of major episodes in life but also because it is not always the case. Much of the everyday health and health information practices are not experienced as significant events that apparently also affects how we react to them and what kinds of information practices stem from these mundane events and how they differ from more significant episodes of life.

Of other interesting papers, you could mention the two other papers in Heidi’s session. Ina Fourie and Valerie Nesset reported of an exploratory review of research on cancer pain and information-related needs, and Theresa Anderson and Ina Fourie discussed about information interactions related to empathetic care for the dying.