Explaining age-related variation in the use of patient accessible electronic health records

A new article reporting findings on age-related variation in how people use patient accessible electronic health records has been published in Information Technology and People. The study is collaborative work between HIBA project and Swedish DOME research consortium and is freely available as open access.

The results show that younger respondents of a survey study conducted in Sweden were more likely to be interested in PAEHR contents for general interest. They did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in the patient accessible electronic health records useful and aimed for them but to experience the technology as inherently difficult to use.

The study shows also how people in different ages think differently about information and technology, and how information technologies like patient accessible electronic health records should be studied separately from information and technology perspectives. People can have different views of technologies and the information they are used to make available. To understand the different views, the study suggests to look not only to people’s technological but also to their informational frames of reference.

Citation

Huvila, I., Cajander, Å., Moll, J., Enwald, H., Eriksson-Backa, K. and Rexhepi, H.(2021), “Technological and informational frames: explaining age-related variation in the use of patient accessible electronic health records as technology and information”, Information Technology & People, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/ITP-08-2020-0566

Abstract

Purpose

Data from a national patient survey (N = 1,155) of the Swedish PAEHR “Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data.

Design/methodology/approach

Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions.

Findings

The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use.

Research limitations/implications

The sample excludes non-users and is not a representative sample of the population of Sweden. However, although the data contain an unknown bias, there are no specific reasons to believe that it would differently affect the survey’s age groups.

Practical implications

Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients.

Social implications

This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions in much of the earlier work, they need to be addressed separately.

Originality/value

Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other.

Keywords

  • Information seeking behaviour
  • End users
  • Technology
  • Theoretical concepts

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.

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.

 

Pacific Asia Conference on Information Systems (PACIS 2018)

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

 

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.

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.