‘We have the internet in our hands’: Bangladeshi college students’ use of ICTs for health information

Innovations in Information and Communications Technologies (ICTs), and especially mobile health, have been predicted to transform provider-patient relationships through the dissemination of health information, and by encouraging patient autonomy, self-management, and self-care [16]. People’s capacity to access health information is informed by power inequalities in health systems. Thus, while patients may know what symptoms they experience, they usually lack the medical knowledge for diagnosis and have to rely on health providers’ expert knowledge [12]. Physicians and other health providers also determine, and control access to, health care and treatment [16]. Health professionals thus serve a critical gatekeeping function. As health system intermediaries, they are particularly powerful, deciding on the flow of health resources (materials, medicines and information) and on what information is shared with patients. They thus ‘control the public’s knowledge of actual events’ ([34]: 144), acting as the ‘keeper[s] of medical knowledge’ and powerful decision-makers [16]. Bloom et al. [12] argue that health systems should be conceptualised as knowledge economies which exist to make clinical, medical, diagnostic and care expertise available to populations. This broader view of health includes all actors, both formal and informal, who provide expert health information. It thus draws attention to the wide range of health information and services which are also provided through markets, and incorporates analysis of economic and socio-political interests which underlie the different actors and institutions constituting the health knowledge economy. It furthermore emphasises health systems as concerned, not just with ill-health and disease, but with all activities that facilitate, restore and preserve health [13]. Such a perspective is appropriate for understanding college students’ health information seeking, which has blurred boundaries between health and medical concerns, and lifestyle and sexuality issues. A biomedical understanding of health and health information seeking does not necessarily highlight the emotional and other sexual health issues that college students are exploring (such as anxiety about or duration of sexual intimacy), nor does it address their lifestyle choices which impact on health (diet, fitness, skincare etc.). It also overlooks exposure to pornography in a range of sites (local magazines, imported videos). In this paper, health information refers to anything relating to the body and its wellbeing.

College students, as young adults in pursuit of sexual and reproductive health (SRH) information, encounter health system – and other – gatekeepers who control access to information [34, 54]). In Bangladesh, a culture of silence surrounds sexual relationships for unmarried young people, including college students, which means that many are hesitant to seek care even from health care providers. If they do decide to do this, the process is long and anxiety-filled [49]. This silence, and lack of health information, affects both young men and young women. Moreover, health professionals are not the only ones who perform a gatekeeping function. Teachers, parents, family members, older siblings and other community members may have access to information and resources which can be shared or withheld. They, like formal health gatekeepers, are influenced by a range of socio-economic and cultural factors, and use information and resources to promote or discourage particular behaviours [34]. This expertise, coupled with their status in society, enables them to exercise power and to provide or deny access to health services and resources based on a combination of personal knowledge, conservatism, resistance to changing cultural values, self-interest and finances.

The concept of a ‘digital divide’ captures the relationship between technological innovation, inequality and exclusion along the lines of gender, educational attainment and income [25]. Hilbert has, for example, argued that ‘Traditionally, longstanding inequalities prevent women from accessing ICT, leading to a vicious circle between digital exclusion, unemployment, low income and lacking education’ ([27]: 486). In keeping with this, male college students have been identified as those most likely to engage with digital technology [24, 35, 46],¹ although as Hilbert [27] and Antonio and Tuffley [6] point out, when females do use internet technology, a range of benefits become possible. ICTs – particularly laptops and mobile phones with internet access – challenge existing forms of gatekeeping. They make health information (ranging from expert biomedical information, to experiential patient information and to unsubstantiated myths/claims) accessible and have the potential to undermine medical and socio-cultural gatekeeping practices that control college students’ access to information about sexual and reproductive activities. Access to ICTs thus enables college students to bypass medical and other gatekeepers of SRH information. College students’ readiness to engage with digital technologies (including Facebook) is readily apparent in Bangladesh with much focus on chatting, message sending, gaming, sharing videos, and posting [38, 47, 55]. Little attention has however been paid to the ways in which Facebook, or other service providers, facilitate discussions about health and health information dissemination and whether this differs for men and women college students.

Mobile phones and digital technology offer new ways of bypassing gatekeepers and innovative means of accessing health information, leading to what some commentators have heralded as ‘digitally engaged citizens’ – people accessing, using and promoting health information through digital technology unencumbered by intermediaries, and gatekeepers; a process termed disintermediation [17, 37]. This vision suggests that people such as these college students, should be able to use digital technology to access medical and health information, unfiltered by both formal and informal gatekeeping. It also suggests that, particularly in the area of sexual and reproductive health, this can have beneficial consequences for young people in terms of improving both male and female college students’ knowledge and understanding. In promising to bypass gatekeepers, mobile phones and other digital technologies may both echo and facilitate the liberating potential of medicine such as pills, injections, solutions. Geest and Whyte, building on Appadurai’s analysis of objects embodying particular values and having ‘social lives’, point out that ‘pharmaceuticals objectify the healing art of physicians and make it into some-thing that can be used by anyone’ ([19]: 348). These medicines – which are increasingly available over-the-counter in private pharmacies and unlicensed facilities – become things which embody the power and skill of medical specialists, through their highly-technological, curative, portable and saleable properties. These same properties also undermine medical professionals’ gatekeeping functions by offering people the promise, and perhaps the illusion, of being able to treat themselves.

This liberatory potential and the opening up of previously-controlled information, Eysenbach [17] hypothesises, will mean that traditional health system intermediaries and other gatekeepers are being superseded. Just as pharmaceuticals have enabled people to bypass health intermediaries, prioritising the ‘inherent power’ of drugs to heal ([19]: 34), phones and other technologies can be used to disseminate previously discreet information to young men and women. Health experts and other societal gatekeepers will no longer ‘stand between’ users and SRH information. However, users will still have to find ways of navigating the vast amount of information available to them through digital technology. Eysenbach proposes that gatekeepers will be replaced by other types of intermediaries who ‘stand by’, rather than between, users, helping them to identify relevant and accurate information. These new mediators, or apomediators, use digital technology to become educated about a particular subject, and then share this knowledge with peers as and when relevant [18, 37]. ICTs thus hold out a promise to eliminate traditional gatekeepers and, through a process of apomediation, to give users ‘direct, convenient access to an abundant amount of health information’, enabling them to share health information amongst themselves ([17]: 162). In so doing, this may have the potential to restructure health systems [16, 37].

Positive health system innovation extends beyond the public provision of health information through technology and the elimination of those gatekeepers whose access to knowledge and resources inhibits healthy and informed choices. The information provided has to be appropriate and any corresponding treatment efficacious. Health systems must retain the capacity to manage public health, while bearing in mind broader public goods and positive externalities that result from health system delivery. They need to accredit and regulate professional behaviour and ensure that medical providers, who may have their own prejudices and biases, do not exploit unequal power relations [12]. Ultimately health system innovation should ‘create the opportunities for health care organizations to build higher-quality, cost efficient and easily accessible health care organizations that are better adapted to the needs of their consumers with a lower overall cost’ ([11]: 49). This includes being aware of the ways in which digital technology opens up a world of readily-available health information, and of how processes of disintermediation and apomediation may change health information seeking in ways that impact on health service delivery.

This study draws on data from two questionnaire surveys undertaken in Mirzapur by this research team. The first survey, undertaken between October 2013 and February 2014, drew a random sample of 854 households from the general population.⁶ The sample was designed to select about twice as many female as male respondents, with some 80% of respondents being either the household head or the spouse of the household head. Hereafter this is referred to as the General Survey. A second survey, referred to as the Student Survey, examined health information seeking and behavioural change among college students in Mirzapur. Undertaken in August 2015, it drew a random sample of 436 college students from two of Mirzapur’s largest colleges, namely Mirzapur Degree College and Government Saadat College, chosen because of high student numbers.⁷ The colleges are similar in terms of student numbers, both are government institutions which offer university-level education (from Higher Secondary School Certificate up to Masters-level degrees) and both are easily accessible by road. The survey was designed to select approximately equal numbers of men and women. Trained enumerators spent time at the colleges, recruiting survey respondents using a combination of non-probability sampling⁸ approaches based on convenience and snowballing. Students ranged from 17 to 28 years of age, with a median age of 21, and most students were unmarried (men 95%; women 76%). Survey respondents were grouped into socio-economic quintiles (poorest, poor, middle, rich and richest) based on the Asset Index developed by the Mirzapur Health and Demographic Surveillance System (HDSS) which in turn is correlated with the BDHS (Bangladesh Demographic and Health Survey) index.

The General Survey asked people about their ‘health’, ‘health information’ and ‘a serious health condition’. While it left open the definition of health, it offered a biomedical definition of a serious health condition (going to a hospital or using medicine for several months). This implied – and was interpreted to mean – a formal domain of health-seeking rather than more informal, personal notions of health. In the Student Survey, building on the results of the General Survey, we asked about both health and sexual health.

The surveys were complemented by four focus group discussions (two with women students and two with men), and in-depth interviews with college students (ten male and ten female), identified by the colleges as being good with smartphones. Men were interviewed by a male interviewer and women by a female. Students were asked to decide where the interview should take place. Many of the men opted to come to Kumudini Hospital (where we were staying), while most women students chose their homes. When interviewing women students, we were allowed to go into their bedrooms, but always the door was left open and senior women loitered outside. For these interviews, we identified students who owned smart phones as we felt they were the most likely users of mHealth. Interviews were translated and transcribed, before being coded according to key terms and analysed by themes.

Ethical clearance was obtained from the Ethical Review Board of Icddr,b. For in-depth interviews, informed written consent was obtained from the participants. For the focus group discussions and surveys, verbal consent was taken before commencing with the discussion. One limitation of this study lies in the design of the general population survey questionnaires, which did not ask about sexual health and which implied biomedical notions of health and ill-health, rather than personal notions of health.

This section compares mobile phone ownership amongst college students with mobile phone ownership amongst the general population of Mirzapur. It then explores the degree to which college students are interested in health information, whether they are more likely to use their phones to access health information and the extent to which such use is gendered. Finally, it examines college students’ and other Mirzapur residents’ use of technology for health information.

The data show that Mirzapur’s college students are economically relatively well positioned, more likely to own mobile phones, and more aware of the internet than the general population and youth in the general population (Tables 1–4). These college students are interested in health information and are more likely to use their mobiles and, where available, computers to access this information (Tables 5–8). Does this mean that ICTs are the tools through which health systems are undergoing innovation and change? Are ICTs facilitating an emergent process of disintermediation and apomediation in Bangladesh’s health system?

The concept of disintermediation imagines a process of unmediated access to information, which enables people to navigate around gatekeepers, retrieving information which is usually controlled by professional interest groups of various kinds. Evidence from Bangladesh, however, points to the importance of social and cultural gatekeeping in a conservative society, with constraints (stricter for women and unmarried men) on young people’s sexual health information. Young people trying to get information on issues such as sexual and reproductive health thus often have to overcome barriers imposed by a wide range of health gatekeepers, including family, elders, guardians of socio-cultural knowledge, health system providers and medical experts, as the keepers of medical knowledge and what it is ‘appropriate’ for them to know, and as decision makers about access to services and treatment. The reality in Mirzapur is therefore far from a utopian world of disintermediation and apomediation. While both male and female students looked for health information online – from how to care for one’s skin to what to do about tumours – and were able to access some information, there were limits to what information they accessed and how they could use it. Lupton, focusing on ‘digitally-engaged patients’, argues that digital technology and disintermediation should provide the means of ‘preserving and promoting their own good health, including accessing relevant information, monitoring their own health and taking responsibility for managing their medical conditions’ ([37]: 857). In the case of college students’ online health information seeking, it is however clear that practical, technological, gender and cultural barriers created considerable limitations.

Nevertheless, in Mirzapur, access to digital technology offered college students ways to evade some gatekeepers’ social control and, in so doing, to make health and SRH information more freely available to them. Sexual health is an area where gatekeeping is particularly prevalent. Conventionally information about SRH was seldom shared between adults and students, and particularly not between adults and young women ([48]: 169; [28, 31, 49, 52]). In our research, male and female students were accessing and sharing SRH information. This enabled some women students to gain a better understanding of their bodies and a sense that they had more control over their fertility. For example, Nisha, a young married woman, wanted to know what form of contraception was most appropriate. As she was too shy and uncomfortable to approach a doctor and was confused about the information she had received through conventional health information sources (miking, posters, television, newspapers), she turned to the internet, learning how a woman’s body operates and how an embryo evolves. She read that, if she avoided intercourse 7–12 days after menstruation, then she did not need to use any contraception. For Nisha, this was better than other sources because it provided her, in her estimation, with a ‘full or entire analysis’. While access to this information provided Nisha with some reassurance, it may not have been a complete and medically-accurate analysis and there are few guarantees that she will be able to delay pregnancy as a result of this knowledge.

There are, of course, potential disadvantages associated with the bypassing health professionals and other traditional gatekeepers. Van der Geest and Reynolds Whyte [19] examine the consequences of this in relation to drugs and medication. They point out that people who adopt ‘self-treatment’ are dependent on impersonal market relations and vulnerable to exploitation by other, less medically-qualified persons – such as informal drug vendors, shop keepers, etc. – who, while advising on pharmaceutical consumption, may not have patients’ best interests at heart. Similar issues are at stake in relation to mobile phones and access to health information, reflecting both the need for a broader health knowledge economy approach [12] and the need to consider how currently unregulated ICT-mediated health information can make ‘unsubstantiated claims to medical authority’, or ‘misleading claims’ or suggest ‘inappropriate treatment’ that may ultimately cause harm ([13]: 6,7). These and other risks are evident in the college students’ navigation of health information, including that the students will not be able to identify effective, accurate suppliers of information; that the information and health solutions found online will not produce the results desired; that they will spend money on ineffective treatments and that they will misuse drugs resulting in increased threats to their health and public health more broadly. At present however, the risks experienced by Mirzapur’s college students are relatively low. This is because, first, the kinds of health information – and consequent treatments – being pursued by Mirzapur’s college students tend to focus primarily on skin, fitness and beauty rather than severe illness or disease. Secondly, these students are not at present purchasing drugs online and thus their actions do not have high risk potential. Recall, for example, Johnny’s recommendation of garlic for asthma. This is unlikely to have major negative consequences and, if instances of asthma continue, affected persons are likely to seek further information and treatment. Thirdly, despite challenging societal norms and bypassing conventional gatekeepers, through unmediated internet access, college students’ use of inaccurate health information may have contradictory consequences. Take for example Nisha’s search for appropriate information about contraception. For young married women such as Nisha, the expectation is that they should bear children soon after marriage, so the consequence of poor SRH information on avoiding pregnancy is not likely to be of concern, except for the young women themselves. The consequences of inaccurate contraceptive information, if coupled with sexual activity, would however be far more significant for unmarried women [28]. Moreover, the long-term consequences of using mobile phones to access a wide range of health information should not be under-estimated. Hampshire et al. [24] have argued that, as new forms of technology create new health markets, so young people and others will be increasingly targeted and they will have to develop appropriate resources, networks and skills to navigate their way through these markets.

To date, however, access to the internet, usually through mobiles and occasionally computers, has provided male and female students in Mirzapur with discretion and anonymity, factors which, for youth, may be more important to them than health providers’ qualifications [32] and biomedical accuracy. In private, female students searched for information about their menstrual cycle and pregnancy, while male students searched for topics like HIV, the use of condoms and sexual performance. Their more general health interests – how to stay healthy, avoid disease and so forth – were publicly shared, as the students ‘liked’ health pages and Facebook feeds. Even this seemingly minor act of ‘liking’ a page, and promoting it amongst peers has, as Lünich and colleagues argue, a gatekeeping function in that it rates and promotes particular websites’ and certain kinds of information [36].

Such actions facilitate apomediation, the process by which college students use digital technology and, having become educated about their bodies and health conditions, share knowledge with their peers, and provide information to family members when relevant [37]. Apomediation is, in theory, different to gatekeeping because it does not reinforce hierarchical power relations. While gatekeepers are seen to stand ‘in-between’ people and health information and treatment, apomediators are understood to ‘stand by’ their peers and others in need of health information ([17]: 162). Apomediators have the choice whether to share information, when to share it and in what format, but with few guarantees about the accuracy or efficacy of this information. Bithi, helped her newly-married sister who had experienced two successive miscarriages, by downloading a health app containing pregnancy information and instructions on activities to avoid. Other girls shared information on menstrual hygiene and not getting pregnant with close friends. This kind of information sharing is highly significant in a society where college students, and indeed all young people’s but especially young women’s, sexuality has been carefully monitored, and SRH information strictly controlled by gatekeepers, because it gives these students access to information which helps them understand more about their bodies and their fertility and thus to make more (but not necessarily wholly) informed decisions about intercourse, sexual health and reproduction.

In theory disintermediation and apomediation provide college students with greater choice as to who might offer health information. Some may continue to use the intermediaries they have always used. Others might look to new intermediaries. The tendency to look for new intermediaries, Eysenbach suggests, is particularly pronounced among young people who, ‘strive to become more autonomous and to reduce the power of intermediaries such as their parents, with peers taking on the role of the former intermediaries’ ([17]: 162). Older adolescents seek to challenge authority, strive for greater autonomy and find peer-to-peer apomediation attractive.

Our study shows that willingness to engage in disintermediation and apomediation is influenced by age, gender, health condition and by familiarity with digital technology. Despite young men having greater access to digital technology, college students of both genders are using phones and computers to explore sexuality and healthy lifestyle choices. This information is relatively easy to act upon, not requiring significant social and financial resources. Mirzapur’s students found online information to be useful and engaged, to some extent, in peer apomediation, sharing health information in face-to-face discussions with friends and similarly-aged relatives who were not as experienced online, and through ‘likes’ and forwarding posts.

Familiarity with technology also influences the extent to which college students use digital technology as a means to bypass intermediaries. Thus, the more intensively students used mobiles, the less likely they were to defer to their parents as the primary health intermediary. There is, as shown above, a dominance of male students among internet users, reflecting both lower levels of familial gatekeeping and their greater access to the internet. This, Eysenbach [17] suggests, creates potential for a feedback loop; as students get better at accessing information, there is more reliance on peers to share information.

There are also new intermediaries, such as digital providers and college teachers that – whilst embedded in conventional socio-cultural systems and power relations – allow the possibility of bypassing gatekeepers. College teachers are required to teach SRH in schools [52]. Socio-cultural norms, shame and fear of stigma which prohibit the sharing of this information across age and gender categories make this an embarrassing experience for teachers and students alike. As a result, some teachers have avoided teaching this and have instead referred students to the internet. This has particularly influenced women college students. Shahinoor’s teacher, for example, explained: ‘If you have any problem, you will find a separate page after logging into internet’. So, when Shaninoor was interested to find out more about contraception, she remembered ‘Sir told us that if there are any health or questions like that… Sir gave us an address, so I searched by typing that’. At the time of the interview, Shahinoor had never searched on Google, she had only used the website address given to her by her teacher. Bithi’s teacher, equally embarrassed to teach biology, had said ‘you can find anything if you Google it’ and thus encouraged her to explore health and reproductive information online. Bithi then searched for health information online, finding information and downloading health apps.

Digital service providers in the telecommunications industry also act as new gatekeepers to health information through the types of internet access and bundles they offer. Social network providers such as Facebook provide information to members through, for instance, selected links which direct college students, and other young people, to particular websites. In so doing, Facebook offers an illusion of using the whole internet, but this is limited to particular sites. As indicated in the following quotations, at least some of Mirzapur’s college students, both male and female, do not recognise this distinction and associate internet searching with Facebook:

Interviewer: ‘How long have you been using the internet’? Respondent: ‘I’ve basically been connected to the internet because of Facebook. Since 2012, it could be said’.

Interviewer: ‘So which medium do you use to get information’? Respondent: ‘… for the exchange of information I use the internet, mainly Facebook browsing’.

This limited access undermines the concept of the internet, which is to enable anyone to connect up to anyone else without gatekeepers and without permission. ‘The internet by definition is a vast collection of interlinked sites – over a billion of them, at last count. And Facebook offers about 0.0000002% of this to the user’ ([41]: no page number; [53]). The implications are significant, as Facebook is Bangladesh’s most popular internet service, used by 64% of students in Mirzapur.

Given the limited internet literacy and the heavy reliance on mobile phones to access the internet, there is little scope or incentive for college students to go beyond these sites. This gatekeeping function is of particular consequence not only because it is not immediately apparent, but also because, as Facebook is a commercial platform, its users’ interests are exploited to sell targeted advertising space. This can turn a user’s passing concern with, say baldness, into a targeted marketing strategy directing the user to a range of commercial, rather than efficacious or appropriate, medication and, as suggested above, making users vulnerable to unscrupulous market exploitation that does not have their health interests at heart. In addition, while Facebook does provide access to four health-related websites, college students are more inclined to ‘like’ informal, unregulated health information – such as Johnny’s reporting of the benefits of garlic described above. This informal, unregulated health information is, as Eysenbach suggests, an important aspect of apomediation, with experience-based information and personal accounts of efficacy assuming increased significance and credibility. The incorporation of digital technologies in health systems may thus mean that, while ‘former intermediaries do not disappear completely’ ([17]: 165), new gatekeepers give the appearance of being apomediaries, obscuring commercial interest behind a façade of peer-to-peer mediation.

Almost two decades ago, Goldsmith predicted that ‘the internet has a greater potential to fundamentally transform both the structure and the core processes of medicine than any new technology we have seen in the past fifty years […] The most important effect of the internet will be to strengthen the consumer’s role in relation to practitioners and health care institutions, and to create a powerful new tool to help people manage their own health risks more effectively’ ([21]: 155–6). This paper shows that mobile phones and computers have created new opportunities for college students in Mirzapur to access and to share health information which was previously controlled by health intermediaries and other gatekeepers, and often discouraged by socio-cultural values and norms. Despite predictions that ICT innovations will transform patient-provider relationships and health systems, access to health information in Mirzapur was not unfettered. Social and cultural control through senior family members and other cultural gatekeepers of access to digital sources of information continues to be very strong, particularly for young women. At the same time, new intermediaries such as school teachers and some commercial digital platforms have played a more enabling role in encouraging access. But this has been at the price of determining what sources of information to reveal or to restrict, as the case of service providers like Facebook show.

Disintermediation has taken place to varying degrees with both male and female students searching online for health information. The ways in which college students share information online, through ‘likes’, forwarding posts etc., is more in keeping with what one might expect in this era of digital innovation. Yet it is perhaps the personal searches for sexual health, undertaken by both women and men, and the information found online but shared through discreet, private and personal face-to-face discussions, that most challenges social norms and is perhaps most innovative. This is perhaps most radical in the case of some young women students because it provides them with information which facilitates decisions about reproduction that were previously in the hands of senior women, men and health service gatekeepers.

Using mobile phones to access the internet was something college students were doing in relation to sexual health and lifestyle information, and was an activity which enabled them to bypass intermediaries and gatekeepers; but was not an activity undertaken in critical health situations. To what extent then, does this digital health information seeking portend future innovation and disruption in the health system?

The evidence of disintermediation and apomediation suggests that changes in access to health system knowledge and power relations are likely but will still have to contend with the power of social and cultural norms. There is evidence that familiarity with digital technologies enhances the likelihood that conventional gatekeepers will be circumvented and that, even as new intermediaries emerge, new sources of information will be promoted which are less grounded in socio-cultural norms and power relations, but access is still likely to be gendered and to be subject to policing by family members or by other social and political forces. The data suggest that apomediation and experience-based credibility may become increasingly desirable and relevant but that this will raise important questions about the quality and reliability of information and how these are ‘brokered’. Because these college students are likely to continue using digital technology as they age, improvements in their technological skills, in the technology itself, and in access to the technology are to be expected. Ultimately however, large-scale health system innovation may depend not on the innovations used by college students, but rather on the degree to which powerful internet gatekeepers – such as Facebook – are able to dominate control over SRH information while marketing seemingly unmediated health information and treatments in the guise of peer-to-peer apomediation.