Online Health Information Seeking Behavior OHISB Focusing on

Online Health Information Seeking Behavior (OHISB). Focusing on Elderly and Youth Marianne Paimre

Task 1 • When did you last search for health related information? • What kind of information channel/medium/source did you use? • What kind of information was it (on diseases, med. doctors, wellbeing and prevention…)?

Concepts. What is OHISB? Why to study OHISB? Models, approaches. What have we learned from previous studies? • Models • Approaches • Outcomes • General • OHISB of elderly • OHISB of students • unexplored aspects • OHISB & Estonia (The youth and elderly) • Why to study? • Outcomes of my pilot study (HISB & elderly) • Students’ OHISB • Next steps. • Conclusions • • Themes:

Main concepts Information behaviour (IB) Information seeking beh. (HSB) Health information beh. (HIB) HISB usually refers to the ways in which individuals seek information about their health, risks, illnesses, and health-protective behaviors (Lambert and Loiselle, 2007). • OHIB • OHISB • • Figure 1: Wilson's 1999 nested model of information behavior

Lambert & Loiselle, 2007

I conducted some searches in EBSCO databases • UTLIB: Search term “online health information behavior” produced in EBSCO databases about 274 matches. • Search term “online health information SEEKING behavior” 239 matches • “health information search behavior” 8 • TLU AC. LBR: • “online health information behavior 197 • “online health information seeking behavior 131 • “online health information search behavior” 10

Task 2. Are these concepts relevant/ appropriate also today? • Information search behavior, • Information seeking behavior, • Information behavior? • Infootsikäitumine, • Infokäitumine • Online information behavior • Infokäitumine veebikeskkonnas

Why to study OHISB? • to contribute to the prevention of diseases, • to make adequate interventions to improve public health in the future, • to improve information services … ECDC TECHNICAL REPORT: • The internet would appear to provide the ideal medium for the provision of information targeted at the prevention and control of communicable disease for both health consumers and health professionals. • This potential is restricted by the relative absence of studies, particularly on the efficacy of the use of the web for public health communication, specifically for communicable diseases. • The closing of this knowledge gap has the potential to contribute to the prevention and control of communicable diseases across Europe.

From a area of information science to a multidisciplinary research field 'OHISB' AND ELDELRY 19892018 "OHISB" 1989 -2018 "OHISB & elderly" 1200 1060 1000 800 600 400 200 0 121 3 0 1989 -1998 39 7 1999 -2008 2009 -2018 • Research published in a number of foreign scientific and academic journals confirms that this is a truly multidisciplinary research area investigated avidly by the world’s prominent information scientists, sociologists, psychologists, health promoters and educationalists Figure 1. Articles on OHISB in EBSCO databases focusing on studies of elderly, 1 st January 1989 - 31 st Dec. 2018 (phrase search model )

Some existing models of IB • Brookes defined information as that which affects the world view or knowledge of the person receiving it. His 'fundamental equation’ (below) states: • K[S] + ΔI = K[S + ΔS] • . . . which states in its very general way that the knowledge structure K[S] is changed to the new modified structure K[S+ΔS] by the information ΔI, the ΔS indicating the effect of the modification. (Brookes 1980: 131) • Traditionally, information theorists have paid most attention to the processes undertaken by people when they approach a system (a library, a database) for information. • Ellis (1989) for instance, identified a list of characteristic actions within information seeking behaviour: • starting • browsing / chaining / monitoring • differentiating • extracting • verifying • Ending.

Figure 2: Extension of Wilson's 1981 model of information-seeking behaviour Figure 3. Dervin's sense-making metaphor (1992)

Figure 4: Modified Wilson's 1996 Model of Information Behavior

What have we learned from previous studies? A) Models used Source: Marton & Choo, 2012

B) Approaches/methods • Quan. studies • Rely on big datasets and used statistical analysis and focused on the associations of various determinants and the context of OHISB. • Online surveys, questionnaires, face-to-face surveys and structural equation modelling. Quantitative analysis using SPSS was often conducted and linear and binary logistic regressions were completed. • The data often derived from national trends surveys and cross-sectional nationally representative surveys. E. g. Gonzales and colleagues used the adult population file of the 20112012 California Health Interview Survey, analysing Internet use, online health information-seeking behaviour, and confidence in filling out online forms using binary logistic regression among 27 289 Latinos. • In a study conducted by Faith and colleagues the data from 7 674 people from all over the US were derived from the Health Information National Trends Survey. • Te Poel from Netherlands conducted a 4 -wave longitudinal survey study among 5322 respondents aged 16– 93. Usually the sample size was smaller, e. g. an online cross-sectional survey conducted by Mc. Crabb et al. used data obtained from the 819 orthopaedic trauma patients. (Paimre, 2019)

Qual. Studies • The main aim of this kind of research is to assess people’s logic, beliefs, deep motives for using Internet, values, skills and difficulties in finding relevant information and to explore perceptions and experiences with OHISB. Interviews (semi-structured or in-depths) thinkaloud technique, …. This approach enables to study OHISB in more detail and collect useful information. • For example, Mendes and colleagues from Portugal explored the health information-seeking practices of healthy young adults and how they assessed and ranked sources of information. 15 interviews were conducted and these included the collection of basic sociodemographic data. • Fergie from the UK studied young adults' experiences of seeking online information about diabetes and mental health in the age of social media. They conducted 40 semi-structured interviews with young adults, with experience of diabetes and other diseases. • One of the drawbacks of this method that could be established was the inability to make generalisations. (Paimre, 2019)

MM design • In the mixed method design and combined studies various methods were applied. This approach enabled researchers to explore the object in a multidimensional setting and to study the phenomenon in all its complexity. • E. g. the research carried out by Morrison and colleagues examined the specific effect on engagement of providing two different design features - tailoring and self-assessment. A qualitative study explored participants' engagement with each version of the intervention and a larger quantitative study systematically compared participants' use of the intervention and self-reported engagement using a partial factorial design. • Most often survey and interviews were used. For example the study conducted by Yong aimed to examine users’ self-perceived health information behaviour according to their health literacy ability. The study conducted self-administered surveys with 131 public library users and semi-structured intensive interviews with 20 users as a follow-up. Surveys found that most participants had proficient levels of health literacy, and there was an association between health literacy and some demographic characteristics such as gender and educational level. The majority assessed their health information behaviour as high. Interviewees identified critical barriers to seeking, evaluating, and using health information delivered by public libraries. • The Parks made a semantic network analysis on breast cancer information. The study used online discussion forums whose participants were Korean Americans living in the USA. A mixed methodology of both content and semantic network analyses was used for data analysis. • As Mayoh wrote: “Findings indicate that if the study had used a single research method in isolation, something would have been lost or misunderstood regarding the phenomenon…”. (Paimre, 2019)

Studies indicate, that • The internet health information-seeking experience is influenced by agespecific lifestyle trends and typical health status as well as disease risk changes as a result of ageing, • People who feel they have a lot at stake are more likely to engage intensely with online resources. (A 2006 study of 347 men and 72 women in the US living with HIV/AIDS, for example, found that two thirds of the participants searched for health information at least half the time they were online) • Most common reason adolescents used the internet [as a health resource] was to search for information about a personal problem whereas young adults and middle-aged adults were most likely to use the internet to search for information about a condition of a loved one. • Online health information seekers generally feel more reassured having consulted health information sites (Barry & Domegan, 2011)

Studies on elderly : Education and familiarity with Internet searching affect significantly task performance. Health, Internet search experience, and information credibility influence decisions to seek for information online. Primary challenges is lack of technical skills, internet search skills, and medical knowledge (Wu and Li , 2016). Possessing more education is associated with greater e-health literacy. Females and those highly educated, report greater use of Web 2. 0 for health information. (Tennant et al, 2015). Computer self-efficacy (CSE) and outcome expectations regarding internetbased health information act as primary determinants of individual’s intention to use e. Health offerings (Rockmann and Gevald, 2015). Seniors who use the Internet, the Internet is a preferred source of health information too. Elderly most frequently search for health information after an appointment rather than to prepare for an appointment(Medlock et al. 2015).

Adolescents: Youngsters seek HI due to perceived risk of a health threat, perception that one’s knowledge is lacking, fear or anxiety) (Afifi and Weiner, 2004; Brashers et al. , 2002; Kahlor, 2010). Students are motivated to seek health information by personal relevance, emotions, identity and media coverage (Myrick et al 2016). The main health concerns include illegal drug use, smoking marijuana, smoking cigarettes, HIV/AIDS, drinking liquor, becoming a young parent, being hurt in a fight, cancer, diabetes, and having a bad heart (Lariscy et al, 2011). Five over-arching themes emerged accounting for why certain health issues command their concern, and these were remarkably consistent across groups. These include: (1) desire to avoid dying at a young age, (2) social stigma, (3) choices that have negative legal and health ramifications, (4) choices that eliminate youth activities, and (5) avoiding the "heredity is destiny" syndrome. (Lariscy et al, 2011). If online social media (My. Space, Facebook) can overcome some wariness regarding credibility, they may become important sources for adolescents seeking health information (Ibid).

• Mitchell et al (2014) revealed on the basis of online surveys of of 5542 Internet users ages 13 through 18 in the United States that The most common reasons youth look for sexual health information is for privacy and curiosity. Sexual minority youth are more likely than heterosexual youth to report that they looked for information online because they did not have anyone to ask. Findings indicate that online information is most valuable to those youth who lack alternatives. Care needs to be taken to help ensure that the sexual health information online is accurate and includes topics specific to sexual minority youth. • St Jean et al. (2015) found some evidence that youths’ pre-existing beliefs regarding health-related topics influence their online searching behaviours (selection of keywords and search results, their credibility assessments etc). Barman-Adhikari & Rice (2011) demonstrated how the structure of social network ties (e. g. , connection with parents) and the content of interactions (e. g. , e-mail forwards of health information) across ties were critical correlates of online sexual health information seeking. • Kim et al (2016) found that digital ad exposure could influence adolescents’ OHISB. Wan-Ying et al (2016) studied comparatively (in Hong Kong, South Korea, and the U. S) how self-disclosure was driven by the level of trust in social media and uncertainty reduction actions. …

General lack of studies focusing on: Access to the internet, including skills for use; motivations for using the internet; how the search is undertaken; barriers to use; evaluation of source credibility; and utilisation of information sourced. issues of trust and credibility related to internet-based health-related information; and the specific needs of European public health organisations, which should be identified in relation to • developing websites targeting both professionals and citizens (as most available research relates to healthcare). (Source: to Barry & Domegan, 2011) • •

Why to study OHISB in ESTONIA? • The rise in the average life expectancy of Estonians has slowed down and, instead of a growth and there is a decrease in healthy life years. • The population is small and decreased until the most recent years. • The proportion of chronic patients in the population is increasing.

Youth • Estonian Statistics reveal, that searching for health information is among the most favorite online activities for young people in Estonia aged 16 -24. • It has turned out that more than 70% of young people had been looking for health information in the last 3 months. • But there is no more detail information available (what sources they prefer, how they retrieve, assess and interpret information etc. ). • It could be supposed that searching for HI is like some kind of leisure activity (searching for exciting news, searching for new goods for information). • Interviews with TLU students have revealed that they seek for HI very often. Usually they examine how a certain doctor has been rated/evaluated. Who are the best dentists in the city? Testing their health conditions (e. g. skin problems). Booking a doctor’s appointment online.

Task 3 • What would you ask TLU students about their OHISB? • Planning to do online survey and interviews and FG-s.

Elderly • Older people are also increasingly using the Internet, but it could be supposed that there is a substantial number of older Estonians who have never used a computer and a very modest share of those with advanced computer skills. • With respect to Internet usage information technology devices, Statistics Estonia collects only data among Estonian residents up to 74 years old

My pilot study, carried out in May, 2018 I was interested in the following aspects: • Do they have access to the internet and computers? If not, then why? • Where do they usually obtain information related to health and diseases? • Have they used internet to retrieve information on health issues? If not, then why? • Have they heard about e-health system? • Have they used this system? • How do they estimate their health conditions? • Have they used some other e-government systems (e-voting, e-tax board, e-banking, e-ticket or any other)? If no, then why? • If yes, then are they satisfied with these systems? • If they have used the internet to retrieve health related information, then what difficulties and problems they have encountered? • If they haven’t use internet yet, are they interested in becoming familiar with internet and computers? • Whether or not they would like to attend courses on internet?

Outcomes of my pilot study • Economically disadvantaged; • Reluctant to use computers, • Contrast themselves with young people, who they think spend too much time in internet entertainment environments; • They believe in their doctor rather than internet environment; • However, with the help of their children, the e-health system is sometimes used to obtain medical prescriptions and test results

• Surprisingly, the elderly claimed that health is important to them, but they prefer other topics. They said that they do not like to complain about their diseases, rather they try to focus on more positive and cheerful topics such as grandchildren, cooking, handicraft, TV shows. A joyful lady (77) noted: “If I want to discuss my health issues with somebody, I can always call my friends. In fact, we prefer to converse about more joyful things. It seems to me that it's not a good idea to bemoan all the time. If I have a problem, then I quickly go to the doctor. ” • The elderly participated in the FG admitted the decline in their health conditions, but they said they do not like to fill their daily routine with health concerns and complaining.

• Elderly liked to confront themselves to young people, who were considered weak and naive. Excessive use of internet and smart devices was considered a characteristic of young people and suitable for them. A lady (79) pointed out: “Listen, we have survived the Soviet time, thus, we are strong enough not to believe all kind of rubbish. …. All these miracle supplements and gemstones, this stuff is for younger people and they obtain all the information from the internet. They believe in it, it's for them, it's business … If I need some information about my health conditions and diseases, I will ask my doctor of course”. It may therefore be thought that the state-run IT courses would not be of particular interest to them.

• In the future, I am going to integrate all the other aspects influencing seniors’ online health information behaviour to my study. • This information could help to understand given age-group better which could be necessary in order diminish information gap in the society.

Conclusions • Various models and approaches available. • A lot of research done, but lack of good overviews and meta-studies of what has been done so far, • There a number of aspects not studied yet or enough (including the digital divide). • Researchers emphasizes the need to study OHISB in depth (with qualitative methods) • In aging Estonia, it is important to focus on the elderly and, on the other hand, the young people who are our future. • Senior citizens (74+) have even been excluded from statistics on IT use at the moment.

Next steps • It is necessary to repeat FG • To conduct a study on students interviews in some other social OHISB (MMD). centres in Estonia. Second, a quantitative study should be conducted to reveal additional aspects regarding health information behaviour of Estonian elderly and to obtain data on the basis of which more firm conclusions could be drawn.

Thank you!