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.

 

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

 

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.

HIBA workshop in Uppsala

HIBA researchers Isto Huvila, Noora Hirvonen, Heidi Enwald and Kristina Eriksson-Backa met each other in Uppsala in October 10th to 11th 2017 to discuss ongoing studies and plan future research. Moreover, the research group met researchers from the DOME consortium to share ideas and talk about potential common research interests.

Isto Huvila

Isto talking about the HIBA project

DOME AND HIBA researchers

DOME and HIBA researchers discussing

HIBA researchers

HIBA researchers having dinner at Aaltos

Osallistu terveysriskitestejä koskevaan tutkimukseen!

HIBA-projekti selvittää kokemuksia e-terveyspalveluista. Nyt käynnissä olevassa tutkimuksessa selvitetään riskitestipalvelujen käyttöön liittyviä kysymyksiä.

Vastaamalla kyselyyn voit auttaa e-terveyspalveluiden kehittämistä. Kyselyn vastaukset käsitellään luottamuksellisesti, ja ne tulevat ainoastaan tutkimuskäyttöön. Vastaukset eivät sisällä henkilökohtaista tietoa ja niitä käsitellään siten, että yksittäiset henkilöt eivät ole tunnistettavissa.

Jos et ole käyttänyt ennen Diabetesliiton diabetes-riskitestiä, tee testi ennen kyselyyn vastaamista.

Vastaa tutkimuskyselyyn tästä.

Current research in health information literacy research

Isto, Noora and Heidi from HIBA project participated in the 5th European Conference in Information Literacy in Saint-Malo, France. All were a part of the Health Information Literacy Special Session organised by Anne-Kathrin Mayer (ZIPD, Leibniz Institute for Psychology Information) and Maija-Leena Huotari (University of Oulu).

In the session, Veronika Kuhberg-Lasson (ZIPD) discussed the health information literacy knowledge (HILK) of students from vocational schools in Germany. According to the study, lower education lead to lower HILK with no significant differences between vocations. However, when tested for personality differences, the authors suggested that instead of the level of education, the use of untrustworthy information sources might be related to higher levels of extraversion.

Heidi presented a paper on the Relationship between Everyday Health Information Literacy and Attitudes towards Mobile Technology among Older People, a cooperation between researchers participating in the HIBA project, Oulu Deaconess Institute and the University of Oulu. The study investigated how everyday health information literacy (EHIL) was related to the use of traditional and advanced mobile information technologies, and how older adults felt about the use of advanced mobile technologies (i.e. smart phones, tablet computers). Regarding their EHIL, only 28% felt that it is easy to access reliable health information from the Internet. A minority had used advanced mobile information technologies, but the attitudes in the group of respondents were generally rather positive. The findings showed that confidence and positive opinions on EHIL had more positive opinions on mobile information technology. The study suggests that older adults with different levels of EHIL should be engaged in the development of new mobile information technologies.

Noora presented a paper related to EHIL together with Teija Keränen and Maija-Leena Huotari titled Examining the Applicability of the Everyday Health Information Literacy Screening Tool in the Context of Energy. In the study, The factorial structure of the EHIL screening tool modified for energy information was similar to the original tool. The tool can be used to find individuals who lack motivation or have difficulties in finding or evaluating information.

Anna-Maija Huhta (University of Oulu), who has previously worked in HIBA project, presented a co-authored paper Concepts Related to Health Literacy in Online Information Environments: A Systematic Review. Huhta and her colleagues had conducted a review of how information is approached in various health related literacy concepts. Majority of the analysed texts were written in medical and health sciences. The most common concepts were health literacy, ehealth literacy, health information literacy, and (everyday) health information literacy. Similar to all definitions was that all focussed on the ability to understand, comprehend and use information but also to use information as a tool. Differences related to the role of prior knowledge, information needs, critical evaluation of information and types of information considered.

Sigríður Björk Einarsdóttir and Ágústa Pálsdóttir had investigated the health information literacy of parents of children with a disability or long-term illness using qualitative interview study. The authors conclusion was that information seeking takes time and especially with information that should be easily available, takes time and effort.

Finally, Anne-Kathrin Mayer (presented by Veronika Kuhberg-Lasson) investigated the different approaches to measuring information literacy skills. The authors had found discrepancies between objective and subjective measures, and suggested further research on their causes and relations to other factors.

As a whole, the presentations show that it is not uncomplicated to measure and study health information literacy and to say what should be measured and how. Appropriate practices, confidence and good outcomes depend on multiple factors — as their lack of. At the same time, it seems that it is possible to develop scales that can be useful as proxies of certain constellations of practices to understand better how people interact with health information.

2017-09-20 at 2 58 pm: Sheila Webber live blogged the session at http://information-literacy.blogspot.se/2017/09/health-information-literacy-session-pam.html

ZPID Symposium – Health Literacy Across the Life Span

Leibniz Institute for Psychology Information, ZPID organized a one day symposium “Health Literacy Across the Life Span” at 10th of March 2017. The day included interesting speakers from Germany and Finland from multiple backgrounds. The symposium was intentionally kept as small-scale and the aim was to sustain discussion and possible future collaboration.

Renate Soellner from University of Hildesmein, Germany told about research project ”Health competence – model building and validation”. They developed, tested and validated a qualitative structural model (so called concept-map) on health literacy. The main questions were: Which skills and abilities build the health literacy construct? How do health competent persons behave? An article has been published on the model (Soellner, Lehartz & Rudinger 2017). Central concepts of the model are self-control and self-regulation.

Sonia Lippke from Jacobs University Bremen, Germany started her talk by telling about the HAPA model (Schwartzer 1992) In this health behaviour change model self-efficacy is one central factor and the goals turn into  plans that turn into behavior. Non-intender becomes intender and finally actor. Health literacy can be seen as part of this model. According to Lippke the main deficiency on this model is that is focuses only on one behaviour at time. Therefore she has been involved in developing a new ”lifestyle change model” called Compensatory Carry-Over Action Model (CCAM).

Sonia Lippke

Maija-Leena Huotari from University of Oulu, Oulu, Finland told about the research project conducted at Information Studies in University of Oulu and Åbo Akademi University. She talked about the everyday health information literacy (EHIL) screening tool (Niemelä et al. 2012) and about the new research project, CogAHealth, that is funded by Academy of Finland and has started in Autumn 2016. In this project the concept of cognitive authority is central and Huotari spoke also about it´s connection to EHIL.

Anne-Kathrin Mayer and Maija-Leena Huotari

Cristiane Firnges from Robert Koch Institute, Berlin, Germany pointed out the need to develop health literacy measures for younger populations, i.e., age-specific assessment tools. She belongs to Health Literacy in Childhood and Adolescence (HLCA) Consortium: https://www.hlca-consortium.de/

Firnges and her colleagues have been developing of MOHLAA-measuring instrument. HLS-EU-Q47 (e.g., Sorensen et al. 2013) measure was used as a blueprint. Not all tems and items contents of the HLS-EU-Q47 were well understood by adolescents or they might have answered them based on hypothetical estimations/lack of experience. There was found to be a need to adapt particular items for adolescents´cognitive abilities and to their lifeworld and experiences. Limited experiences with navigating the health care system and managing diseases was obvious among the teenagers. Critical thinking is still challenge and they might be overly confident about their skills. Adolescents, especially younger ones, have strong trust to their parents.

Anne-Kathrin Mayer and Cristiane Firnges

Orkan Okan from University of Bielefeld, Germany presented the childhood perspective. Measuring health literacy of primary school-aged children (MoMChild study). He started by telling about a systematic literature review on health literacy instruments and what of them have been used for children. Okan and his colleagues has been adapting HLS-EU-Q for this age group and they are now collecting large-scale data among German children.

Orkan Okan

Anne-Kathrin Mayer Research coordinator of Leibniz Institute for Psychology Information, ZPID told about the health information literacy knowledge test (HILK) they have developed and tested. The test includes 24 items and at the latest stage it has been tested among 144 students. They have also worked on validating the test.

Veronika Kuhberg is a doctoral student at ZPID. Her presentation focused on determinants of health information literacy (HILK) in vocational school students and especially to the role of locus of control and personal beliefs. Especially external health locus of control seems to be an independent factor affecting health information literacy among this population group.

Papers will be written based on the presentations and they will be published later as a book. The day was very fruitful and I thank for Anne-Kathrin Mayer for inviting me to participate!

Heidi

HIBA at Information Studies Days 2016

HIBA researchers were present at Information Studies Days (Informaatiotutkimuksen päivät) held in Tampere at 3rd and 4th of December 2016.

Information Studies days is a national, biennial conference arranged by the National Association of Information Studies ITY ry (Informaatiotutkimuksen yhdistys) and the three departments that provide education in the field of information studies in Finland, namely, Information Studies at the University of Oulu, Information Studies and Interactive Media at the University of Tampere, and Information Studies at Åbo Akademi University. In 2016 the days were organized at the University of Tampere with around 150 participants.

As the Chairman of ITY, HIBA researcher Heidi Enwald opened the days. Her welcoming words were followed by Kai Halttunen’s talk about the history of these days and Professor Erkki Karvonen’s keynote speech on how information and communication technologies shape society and culture.

I myself hosted a session labeled Health infomation behaviour, health information literacy and e-health with four presentations:

Heidi Enwald presented preliminary results of our systematic review on previous research on the views of older adults of the contents of eHealth services. It seems that relatively few studies have focused on the content of these services the main interest being in the acceptance of used technologies.

Jonas Tana talked about infodemiology which refers to the study of the determinants and distribution of health information in an electronic medium with a goal to improve public health. In his doctoral study Jonas is going to investigate how infodemiological data can be used to increase understanding of online health information seeking behaviour.

Anna-Maija Huhta

Anna-Maija Huhta explaining her research at Information Studies Days 2016. Picture: Heidi Enwald

I presented the framework of the project CogAHealth that has just started at the University of Oulu. In this project we are focusing on young people’s conceptions of cognitive authority in the context of health, that is, who and what do young people believe in health issues and how these beliefs are constructed. This joint project with Information Studies and Educational Sciences at the University of Oulu is funded by the Academy of Finland. In connection to this, doctoral student Anna-Maija Huhta, who is part of the CohAHealth research group, talked about her research concerning young people’s new health literacies. In particular, Anna-Maija is interested in studying young people’s literacy practices in social media.

HIBA researcher Kristina Eriksson-Backa hosted a session Information behaviour and information practices among minority and special groups with four presentations:

Ari Haasio talked about sharing information in a “small world” by prensenting a study of a discussion group called Hikikomero. Based on his analysis of the discussions, Ari presented a model of interaction in discussion group posts. Nahla Hewidy spoke about the service needs of asylum seekers. She and her colleagues had studied the needs of this group of people in order to formulate guidelines to develop and improve library services.

A doctoral student at the University of Oulu, Aira Pohjanen, presented her study concerning the information seeking of gender minorities. The study focused on the importance of peers in information seeking. At the end of this session, J Tuomas Harviainen presented an interesting and perhaps a bit unusual study on the information practices of Finnish sadomasochists.

In a parallel Knowledge management session HIBA researcher Helena Känsäkoski presented her study on information and knowledge processes in health care. In her presentation, Helena introduced a model of information and knowledge processes in health care and presented results of an empirical study on the role of the patients and families in these processes.

Audience

Audience listening to a presentation at Information Studies Days 2016. Picture: Heidi Enwald

Overall, this year there were 32 presentations at the Information Studies Days the topics ranging from information behaviour to digital humanities and data management. Extended abstracts for all of the presentations were published in Informaatiotutkimus 35(3).