Skip to main content
Download PDF

Exploring how members of the public access and use health research and information: a scoping review

BMC Public Health volume 23, Article number: 2179 (2023) Cite this article

Abstract

Background

Making high-quality health and care information available to members of the general public is crucial to support populations with self-care and improve health outcomes. While attention has been paid to how the public accesses and uses health information generally (including personal records, commercial product information or reviews on healthcare practitioners and organisations) and how practitioners and policy-makers access health research evidence, no overview exists of the way that the public accesses and uses high quality health and care information.

Purpose

This scoping review aimed to map research evidence on how the public accesses and uses a specific type of health information, namely health research and information that does not include personal, product and organisational information.

Methods

Electronic database searches [CINAHL Plus, MEDLINE, PsycInfo, Social Sciences Full Text, Web of Science and SCOPUS] for English language studies of any research design published between 2010–2022 on the public’s access and use of health research or information (as defined above). Data extraction and analysis was informed by the Joanna Briggs Institute protocol for scoping reviews, and reported in accordance with the PRISMA extension for scoping reviews.

Results

The search identified 4410 records. Following screening of 234 full text studies, 130 studies were included. One-hundred-and-twenty-nine studies reported on the public’s sources of health-research or information; 56 reported the reasons for accessing health research or information and 14 reported on the use of this research and information. The scoping exercise identified a substantial literature on the broader concept of ‘health information’ but a lack of reporting of the general public’s access to and use of health research. It found that ‘traditional’ sources of information are still relevant alongside newer sources; knowledge of barriers to accessing information focused on personal barriers and on independent searching, while less attention had been paid to barriers to access through other people and settings, people’s lived experiences, and the cultural knowledge required.

Conclusions

The review identified areas where future primary and secondary research would enhance current understanding of how the public accesses and utilises health research or information, and contribute to emerging areas of research.

Peer Review reports

Background

Making high-quality health and care information available to members of the general public is crucial to support populations with self-care and improve health outcomes, as knowledge ‘holds the potential to change practice and achieve positive clinical, population and other outcomes,’ [1] (p.524). Minimally, ‘high quality information’ may be understood as information grounded in primary research, free from commercial sponsorship and other conflicts of interest [2]. Additional criteria such as conciseness, simplicity of design, and continued updating may be required by some authorities for research-based information to be considered ‘high quality information’ (e.g. [3]).

The science of how people access and use health information is not new (e.g. [4]). However, if the requirement of ‘high quality’ for health information is adopted, that is, that the information be ‘research’ or ‘research-based’, the existing literature presents a number of shortcomings. Firstly, the literature that has examined how research is accessed and used has tended to focus on practitioners and policymakers (e.g. in the emerging field of Research on Research use [5]), with relatively little attention paid to how members of the public access and use research. Secondly, while a rich literature exists on how the public access and use health information, it has tended to conflate all types of health information – including research evidence and information such as personal records, medication labels and physician’s personal web pages [6]. Consequently, little is known about how the public accesses and uses high quality health information, and there are no summaries or overviews of this topic.

In this light, a scoping review methodology was deemed appropriate as such reviews are intended to ‘map the literature and provide an overview of evidence, concepts, or studies in a particular field’ and the results may be used to inform priorities for future research on the topic of interest [7].

Accordingly, this review aimed to systematically search for and describe the research evidence on how members of the public access and use (high quality) health research or information (HRI) relating to human health and healthcare; the reasons for access and use of HRI and the factors that may shape how they access and use HRI. In order to approximate the notion of ‘high quality information’, the review adopted a narrower definition of ‘health information’ than in the broader literature, excluding personal records, product information, and information on establishments providing healthcare.

Methods

The review was informed by the Joanna Briggs Institute guidance for conducting scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews [8, 9]. The search was conducted in three steps: an initial search of a select number of academic databases (CINAHL plus, MEDLINE and Web of Science) to identify and narrow the range of relevant search terms to inform the final search strategy; an expanded search of academic databases (CINAHL Plus, MEDLINE, PsycInfo, Social Sciences Full Text, Web of Science and SCOPUS) with the identified search terms; and manual search of the reference lists of included systematic reviews and meta-analyses. Alongside, experts in the field were consulted to ensure all relevant studies had been included in the retrieved corpus.

This search strategy departed from the current JBI guidance on scoping reviews as neither grey literature nor manual searching of the reference lists of all included studies was conducted, due to resource constraints.

The protocol was registered with the Open Science Forum (registration https://doi.org/10.17605/OSF.IO/RXP39) on 16/02/2022.

Data sources

Search terms included subject headings, free text and wild-card terms located in the title or abstract for population of interest (members of the public e.g. general public, public, people, community, lay public, lay person, patient, carer), concept of interest (access to and use of human health research or information. e.g.: access*, utilisation/utilisation, us*, adopt*, uptake, engagement; AND research evidence, research findings, research publications, research articles, research outputs, scientific evidence, scientific findings, scientific articles, scientific publications, scientific knowledge, research, information) and context of interest (e.g. health, healthcare).

The search was limited to studies published between 01–01-2010 and 18–01-2022. This was informed by the rapid changes in communications technologies over the last decade and evidence that most studies on the use in healthcare of social media, a technology able to reach less traditional audiences [10], were published after 2010 [11] (Table 1). The full electronic search strategy is presented as Supplement 1.

Table 1 Inclusion and exclusion criteria
Full size table

Study selection

Studies were eligible for inclusion in this review if: they investigated the access and use of HRI by members of the general public from any socio-cultural background, age, gender and ability, and national setting, following any research design, and they were published in the English language in peer-reviewed journals. The inclusion of English language only publications was due to the limited availability of resources for translation.

Access to HRI was defined as the process of finding and obtaining HRI or physically accessing HRI in varied formats. Studies which discussed how information is accessed conceptually only (e.g. National Institute of Health and Care Research (NIHR) [12]) were not included. HRI use or utilization was defined as what people did with the research or information they had accessed, including how they assessed, applied or adapted the research or information to their needs and context [13] rather than their intention or stated preference. Studies which discussed ‘access to health information’ where it was clear that by ‘health information’ was meant personal health records, information about physicians, hospitals or medication labelling or similar types of information (personal, product and institutional information) only were not included. Studies in which ‘health information’ included these last types of information as well as research evidence and data for each was presented separately, were included.

Collating, summarising and reporting the results

Records were exported to Proquest® RefWorks for deduplication and then exported to Rayyan (Rayyan https://www.rayyan.ai/). Independent (blind) screening of abstract/titles against eligibility criteria was completed by two reviewers [CHS, KH]. The two reviewers initially screened 25 records independently and then conferred to establish common understanding. Each reviewer screened 50% of remaining records and then checked 20% each other’s screening for accuracy. One reviewer [CHS] screened all full-texts against the eligibility criteria, and a second reviewer [KH] checked 5%. Any disagreements were resolved through discussion. A third reviewer was identified as arbitrator, though this was not needed [LB or TV].

A bespoke data extraction tool was developed and piloted on five included studies (See Additional file 1). Two reviewers [SQM, CHS] extracted data from included studies, and a third reviewer [ND] checked 10% of the extracted data for accuracy.

Data were extracted on: study characteristics (author/s, date, title, journal, keywords, study type, methodology); population characteristics; reasons/purpose for accessing/using HRI (general interest, specific condition); source of HRI; utilization of accessed HRI; condition/aspect of health or healthcare to which the HRI accessed relates; and factors facilitating access or barriers to accessing the HRI. Data for each category was summarised in table form, accompanied by a narrative.

Figure 1 presents a flow diagram for the scoping review process adapted according to the PRISMA extension for scoping reviews (PRISMA-ScR) statement [14].

Fig. 1
figure 1

PRISMAScR diagram

Full size image

Results

Study characteristics

The search produced 4410 records. Following deduplication and title and abstract screening the full text of 234 studies were screened and 130 studies were included in this review (Fig. 1).

Two studies investigated access to research by members of the public [15, 16]. One hundred and twenty-eight studies investigated access to health information by members of the public (Supplement 2).

Eighty included studies (62%) applied a quantitative research methodology [17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93], 33 studies (25%) followed a qualitative methodology [15, 94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123,124,125], 13 studies (10%) were mixed- or multi-method studies [16, 126,127,128,129,130,131,132,133,134,135,136,137], and four (3%) were reviews [138,139,140,141].

Fifty-nine included studies were conducted in North America (45%) [15, 17, 30, 33,34,35, 38, 39, 42, 43, 46, 49,50,51, 54, 56, 60,61,62, 66, 67, 69, 71, 75, 76, 78, 79, 82,83,84, 87, 88, 91, 94,95,96, 98,99,100,101,102,103,104,105, 107, 108, 114,115,116, 118,119,120,121,122, 124, 128, 129, 136, 137], 18 in Europe (14%) [16, 24, 26, 27, 53, 57,58,59, 74, 77, 85, 86, 111, 113, 117, 125, 127, 142], 18 in Asia (14%) [19, 28, 29, 48, 55, 65, 68, 73, 80, 81, 89, 90, 97, 110, 123, 132, 134, 135], 11 in Africa (8%) [20, 25, 31, 45, 52, 63, 64, 72, 112, 126, 130], nine in the Middle East (7%) [18, 22, 23, 32, 47, 93, 109, 143, 144], five in Australasia (4%) [40, 41, 44, 70, 133] and two in South America (2%) [37, 106]. Four studies spanned several continents (3%) [21, 92, 131, 139] and another four studies did not state any specific geographical location (3%) [36, 138, 140, 141].

The studies included people with specific health conditions (n=33) [21, 25,26,27, 29, 31, 35, 45, 51,52,53, 66, 69, 74, 78, 84, 86, 90, 94, 97, 99, 100, 118, 125, 129, 131], hearing or visual impairment (n=4) [22, 107, 119, 133], carers (n= 11) [18, 23, 37, 50, 51, 91, 99, 104, 109, 131, 132], the elderly (n=6) [44, 67, 72, 85, 87, 134], youth or teens (n=12) [32, 35, 64, 67, 82, 94, 119, 129, 130, 135, 137, 140], minority populations (n=22) (e.g. ethnic minorities [33, 38, 39, 42, 61, 75, 96, 98, 101, 105, 114,115,116, 118, 122, 139], homeless people [60, 62] or refugees [41, 46, 88, 111], and criminalised individuals [102]. Twenty-four studies included other populations (e.g. African American breast cancer survivors [95], members of public libraries [143], women in Tanzania [126] a rural community [127], students in an ESOL class [17, 28, 34, 41, 47, 60, 62, 67, 70, 80, 83, 93, 95, 106, 110, 112, 113, 117, 120, 123, 124, 126, 127, 145]. Eighteen studies were a sample of the general population [16, 19, 24, 43, 48, 49, 56, 58, 68, 73, 77, 79, 81, 92, 108, 121, 128, 144] and sixteen studies did not identify the population [15, 20, 21, 30, 36, 71, 76, 89, 98, 103, 116, 118, 136, 138, 140, 141]. Some study populations had several of the characteristics listed above.

Access to health research and information by members of the public

Sixty-one studies listed healthcare professionals (including GPs, nurses, allied health professionals, complementary and alternative therapists) as a source of HRI. Sixty studies mentioned informal sources (friends, work colleagues, families and neighbours); and 18 studies mentioned other types of professional advisors, such as pastors, educators, governmental officials or charity sector workers (Table 2).

Table 2 Sources of HRI for the general public
Full size table

Forty-five studies listed a type of setting (a place or event) as the source of HRI, including medical settings (n = 14), formal community settings such as town hall meetings (n = 20), formal educational settings (n = 5), other educational settings (n = 14) such as workshops/lectures, and settings such as bookshops or libraries (n = 12) (Table 2).

Finally, 83 studies reported on the tools used by members of the public to access HRI. This comprised: mass media (n = 51), printed information (n = 48) the internet (n = 38). Internet sources included social media (n = 27); various specialist governmental, non-governmental and personal websites (n = 25); and search engines (n = 19). Online communities of various types (platform unspecified) were mentioned as a way to access HRI in 13 studies. Other sources mentioned among included studies were scholarly sources such as academic journals, textbooks and encyclopaedias (n = 16), phone services and applications (n = 13), and marketing materials (n = 3) (Table 2).

Reasons for accessing and using health research and information

Fifty-six studies reported on reasons for seeking HRI by members of the public. The main reasons for seeking HRI were: (i) to find health-related information for other people and on different topics (n = 46); (ii) to navigate the healthcare system, such as preparing for meetings with healthcare professionals (HCPs) and advocating on one’s behalf, making one’s own health decisions, including whether to seek professional help, and sometimes to avoid going to an HCP, and to verify, clarify or add to information received from other sources; to manage one’s own health (n = 31); and (iii) to obtain psycho-social support by reading testimonials from other people, gain reassurance and comfort, and to gain a sense of control over the diagnosis, condition or treatment (n = 9) (Table 3).

Table 3 Reasons for seeking or accessing health research or information (HRI)
Full size table

Fourteen included studies reported the ways which the HRI accessed was used by members of the public (Table 4). Reasons for use included: to improve participants’ own health behaviours and/or ability to manage their health (n = 4); to support health-related decision making (n = 5); to facilitate or enhance conversations or encounters with HCPs (n = 4); to increase people’s own understanding of a health-related topic (n = 3); to assess the information from another source (n = 2); and to share with or educate others in the context of providing psychosocial support (n = 1).

Table 4 Reported use/utilisation of accessed health research or information (HRI)
Full size table

Factors influencing access to and use of health research and information

Barriers to accessing and using health research or information

Thirty studies reported barriers to accessing and using HRI. The main barriers related to: (i) the source characteristics (n = 24); (ii) the characteristics of the person accessing or using HRI (n = 12); the nature of the condition for which HRI was desired (n = 3). Other barriers such as a fear that seeking information could be distressing, inability to determine the quality of information appeared in seven studies (Table 5).

Table 5 Barriers to accessing and/or using health research or information
Full size table

Factors that facilitate accessing and using health research and information

Six studies discussed factors that facilitated members of the public access and use of HRI. Six studies reported factors related to the source of information that facilitated access to HRI. These included ease of access [120, 124, 142], anonymity [125, 142], cost [142], format and language in which HRI was presented [117, 120], and quantity and complexity of contents [128]. Factors facilitating access were: reports that did not use technical terms and acronyms but ‘sound[ed] scientific’ [117]; on-demand availability of the channel [120, 124, 142]; information that was up-to-date and provided both an outline of the topic and detail [128].

Factors influencing choice of source of health research and information

Three studies reported the factors that influenced people’s choice of source of HRI. Two studies found that the health condition searched for, and how it was perceived (i.e. trivial or stigmatising) influenced choice of source [103, 115]. One study reported that presenting health condition could influence choice [125]; one study noted that the healthcare provision available to study participants influenced choice of source [103]; and one study highlighted that patterns of access and use of HRI differed according to when in the patient journey this information was sought, and according to the purpose (for instance, the internet was not considered useful for making health decisions but it was useful for other health-related reasons) [115].

Discussion

This scoping review was the first to be conducted with the aim to identify the extent and nature of the research literature on how members of the public access and use high quality health research and information.

The scoping review identified 130 studies that investigated how members of the public accessed HRI. Mass media was the most studied source of information, followed by printed information and the internet. The reasons for members of the public accessing and using HRI included to improve health behaviours, and/or ability to manage their health, to help with health-related decision making, facilitating or enhancing conversations or encounters with healthcare professionals, increasing people’s own understanding of a health-related topic; assessing the information from another source, and sharing with or educating others in the context of providing psychosocial support. The factors that constrained access and use of HRI, related to the source characteristics, the characteristics of the person accessing the HRI and the nature of the condition for which HRI was accessed. Six studies reported on the factors facilitating access and use of HRI, and three studies discussed factors that influenced the choice of one source rather than another.

Health information vs health research

The review identified a substantial literature on broader concept of ‘health information’ but limited reporting of the general public’s utilisation of health research.

Crucially, only two included studies investigated access of health research by members of the public, and none of the included studies explored the use of health research by members of the public. One case study conducted in the USA found that a library of brief podcasts on health research (duration 22 min each) was feasible to co-produce with local community partners and generated user views /engagement over 18 months [15]. However, this preliminary study, conducted in a single state in the USA, did not specify the number of study participants and their demographics, limiting learnings from the study, as well as the generalisability and transferability of its findings. Another mixed-methods study investigated the relationship between information sources and public trust in health research in two European countries (Italy, Slovakia) [16]. In this study, traditional media (e.g. television, newspapers) and digital media (e.g. blogs, social networks) were the most widely cited information channels, followed by personal interaction and exchanges (e.g. family, friends, experts, people in authority), echoing the overall results of this scoping review. At ten roundtable discussions participants (n = 192) reported obtaining credible health research from a source considered authoritative and competent (e.g. health professionals). The experts provided the information needed to help the individual understand and evaluate complex issues via direct interaction. Taken together, these two studies suggest that the public will engage with health research in diverse ways and that delivery by a source perceived as competent or authoritative may be important to engagement with health research, whatever the medium.

All other included studies centred on the broad concept of ‘health information’. This potentially obscures the interest among the general public in accessing research evidence. For example, 16 included studies reported ‘scholarly/academic sources’ as a source of HRI, potentially indicating direct access to health research by members of the public (Table 2). This is supported by a recent mixed-methods study conducted by the UK’s National Institute of Health and Care Research, which found a strong interest among the general public in being able to access research findings [12]. However, neither the NIHR study nor the majority of studied mentioning scholarly/academic sources provide demographic data or disaggregated demographic data for the participants accessing and using these sources. Furthermore, the two included studies that highlight the use of scholarly sources of HRI and also provide relevant participant data [121, 122], suggest that such sources are more prevalent among more educationally privileged groups: in these two studies, up to 90–100% of study participants were college or university educated. It does not follow, however, that only more educated groups tend to access health research through scholarly or academic sources. Indeed, as studies such as Vandrevala et al. (forthcoming) have shown, information access and use is often a social act, with members of the public not only seeking information for themselves but others within their social network. The paucity of research on how members of the public access and use health research evidence, and the use of the umbrella term, ‘health information’, without explicit definition and distinguishing between the types of ‘health information’ sought, may underestimate the extent of access and use of research evidence, among the general public. The issue of paywalls excluding the general public from access to academic or scholarly sources such as journals was not raised in the retrieved literature.

Another issue highlighted by this review concerns the similarities and differences between how the general public and policymakers and practitioners use health research and HRI, respectively, though this will need further exploration. Like practitioners and policymakers, the general public’s uses included conceptual and instrumental uses of HRI [5]. In addition, the general public used HRI to obtain or provide psychosocial support, a use that was not noted in relation to research use by practitioners and policymakers.

A vast diversity of ways of accessing health research or information

Included studies reported a wide range sources to access HRI, with at least 84 different sources identified, which were classified into three broad categories: ‘other people’, ‘professional settings’ (medical, community or educational places), and ‘independent searches’ (that covered all those tools that people use to do their own ‘research’ to access the information that they need). The review found that, even as interest in the internet and social media as means to access or deliver HRI has increased (e.g. [146, 147]), ‘traditional’ sources of information such as mass media or printed material are still relevant. For example, a 2016 survey conducted among Asian American groups in New York City (n = 1373), USA, found that the internet was among the least used sources of HRI, with print media being the most used source [46]. Similarly, a 2021 survey among cancer patients (n = 404) in Japan found the most widely used source of HRI to be newspapers, followed by healthcare professionals, and that the internet was used by a small proportion of the patients only [65]. These examples are not unique, and hint that diversification of means of delivering HRI to support self-care may be a more suitable approach for delivering HRI, though this conclusion is tentative and will need confirmation through a more systematic study and further research.

Communications technology has advanced rapidly in the past decade, notably through the increase in the number of internet platforms and the development of new functionalities so that, for instance, YouTube is no longer just a means to share video material but also features discussion boards. Instagram as a means to access HRI was mentioned in only one study [55], there was an absence of studies evaluating the role of Tiktok, a popular channel [148], and social media influencers as ways to deliver HRI (e.g. [149]), suggesting that this literature is now dated. Equally, podcasts were infrequently mentioned in the included studies, in spite of their growing appeal as a way to disseminate medical knowledge [150].

In addition, many studies lacked detail. For instance, studies reported ‘online chatrooms’ as a source of information without specifying the platform for the chatroom, whether social media or a specialist health organisation. Some sources of information such as social media were insufficiently distinguished in studies, for example Twitter and Instagram, which tend to favour one or the other format and may therefore appeal to different audiences. Generally, very few included studies considered or reported on the format of the HRI accessed.

Barriers and facilitators to independent searches vs other sources of health research or information

Included studies did not generally explore barriers and facilitators to the use of HRI, or, if they did, they did not report barriers to use separately from barriers to access. This section focuses therefore on barriers to and facilitators of access.

The studies included in this review described a wide range of factors that shaped how the public accessed HRI. These were classified into 16 different factors under four overarching categories that related to personal characteristics, source characteristics and nature of the health condition of interest or presenting and ‘other’ factors.

Relating these to the sources of HRI identified in this review (‘other people’, ‘professional settings’ and ‘independent searches’), included studies provided a detailed understanding of barriers to access and, in particular, barriers to access through independent searches, where major considerations related to how information is presented, namely: the format, the language used, the quantity of information and the level of detail provided. There was no consensus among studies, however, with some identifying as facilitators shorter pieces in simple, non-technical language while others indicated that accessible but ‘scientific-sounding’ (including some level of technical language) and more detailed information facilitated access to HRI.

Only one barrier was identified that related to ‘other people’ as sources of HRI, and that concerned the availability of the source. None of the studies specifically identified barriers relating to ‘professional settings’, though conceivably, features of the setting, including its physical features, may act as a barrier to accessing HRI. One example was provided by a study of people with autism which reported struggling with the physical environment of specialist clinics [151].

Studies provided a good understanding of the characteristics of the individual seeking information that may act as a barrier to accessing HRI, mainly their possession of specific technical skills (technological, linguistic, information retrieval) and time. However, again, these pertained mostly to independent searches rather than accessing HRI through other sources. No mention was made of the cultural knowledge and skills needed to navigate the professional settings or relationships through which HRI may be accessed, although it is known that lack of familiarity with healthcare systems and its norms can be a barrier to accessing these settings (e.g. [152]), and therefore, potentially, HRI.

Another factor shaping how people accessed HRI that was seldom investigated in included studies was the role of past experience with healthcare services, either an individual’s own lived experience of these services or that of other members of their community or social network. This was reported in one included study only [140], and in relation to a specific community (Lesbian, Gay and Bisexual adolescents). This absence is surprising, given the evidence that negative experiences with healthcare provision will impact health behaviours (e.g. [153]) and that negative experiences in the community will impact information seeking generally (e.g. [154]).

In a systematic review including 344 studies, Mirzaei et al. [6] identified a total of 1595 significant ‘predictors of health information seeking behaviours’, (defined as the variables affecting the actions of seeking out information) and classified these into 67 different categories. Although health information seeking behaviour and accessing and using HRI are not identical conceptually, there were parallels between the current scoping review findings and Mirzaei et al.’s [6] comprehensive typology. In addition, this scoping review built on Mirzaei et al.’s [6] findings: while Mirzaei et al. [6] had identified the role of previous exposure to a healthcare source of information as a predictor of health information seeking behaviour, this review identified that past lived experience with healthcare services generally (whether or not it was a source of information) in shaping how members of the public accessed HRI. Given the differences between this scoping review and Mirzaei et al. [6]’s systematic review, it is not possible to draw firm conclusions regarding influences on accessing different types of health information (Mirzaei et al.’s [6] definition is broader) or differences across groups (Mirzaei et al. [6] include the general public as well as healthcare practitioners and healthcare students). This will need further detailed exploration.

Limitations

Due to funding and time constraints this review only included peer-reviewed studies published in English language between 01/01/2010 and 18/01/2022. No grey literature searches or manual searching of the reference lists of included studies were conducted. However, we searched the reference lists of relevant systematic reviews and meta-analysis, and consulted experts in the field to ensure that very few, if any, relevant studies produced during this period had been overlooked. Studies published since January 2022, unpublished studies or studies in other languages, though, will not have been captured.

Limiting the review to English language studies may have influenced in the geographical bias of included literature, with a majority of studies conducted among North American populations. However, evidence indicates that the conclusions of most systematic reviews are not altered through the omission of non-English language studies, and the exclusion of non-English language publications aligns with recommendations from the Cochrane collaboration [155].

The conclusions from this review were hampered by poor reporting in some included studies particularly the lack of clear definitions for the term ‘health information’. As a result this review may have included studies with a broader definition of ‘health information’, though this is likely to apply in a very small number of cases only.

Implications

This scoping review found a lack of research on research use by members of the public. This absence may not reflect the extent to which the public uses research, given the subset of studies identifying scholarly sources as a means to access HRI by the general public in this review, and the fact that people will often access HRI on others’ behalf in their communities or social networks. This justifies more primary research in this area or a detailed review focusing on this subset, including contacting authors for more information on their study. Research on research access and use by the general public could also usefully explore the differences in access and use between the general public and practitioners and policymakers, for instance, through a systematic review including grey literature and increased number of databases consulted.

The review also identified the need for an update on the barriers in accessing HRI, following the observation that barriers (e.g. cost of internet access) have considerably decreased for some groups in the last decade. More specifically, it highlighted a need to enrich current knowledge of the facilitators of both HRI access and use and barriers to use of HRI, in relation to the following:

  • The factors shaping access to HRI through ‘other people’ and ‘professional settings’, with specific attention to features of the setting and the presence or absence of cultural skills to navigate the professional settings where HRI is accessed;

  • A better understanding of the role of lived experience of individuals or communities with healthcare providers in shaping access to HRI;

  • A better understanding of person and setting characteristics that facilitate access to HRI

  • A better understanding generally of the factors shaping how the public uses HRI.

Finally, the literature was found to be dated in relation to the sources of HRI explored, underscoring the need for primary research to update our knowledge of the communications tools currently in use among different populations, and the formats that are now being adopted by social media networking platforms (e.g. Instagram in-feed, stories, and reels; YouTube Community Tab).

Conclusions

This scoping exercise, the first to adopt a narrow definition of health information in an attempt to understand how the public accesses and uses ‘high quality health and care information’, identified major patterns of access and use and also identified gaps in the existing research literature. Major patterns included: the use of a wide diversity of sources to access HRI, with traditional sources still relevant alongside newer sources; access and use for HRI a wide range of reasons, from the conceptual to the psychosocial, both for self and for others. Barriers to use related to how HRI is presented (e.g. language, quantity of information and level of detail) and its availability; the skill, knowledge and time of the person accessing the information, their physical condition and autonomy; and the perception of a health topic or the personal and social implications of searching a given topic. Gaps in the evidence included: a limited number of studies focussing on how members of the public accesses health research and how the public uses health research; the absence of newer (online) sources of HR/I, and the lack of exploration of the features and functionalities of online sources. The review also identified that there is a need for more detailed studies on the factors that shape how the public access HRI through other people and by visiting professional settings. Primary research investigating the factors that shape how the public uses health research and information is also needed, notably, by paying more attention to lived experience of healthcare provision and the cultural knowledge that is required by the public when attempting to access certain sources of health information.

Finally the review found that, given the challenges around reporting and the lack of precise definition of the term ‘information’, identifying how the public accesses and uses high quality information is not straightforward at present. More precise definitions of the term ‘information’, and studies based on these will be needed to find ways for policy-makers to better support self-care and improve health outcomes among the general public.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

HCP:

Healthcare professional or provider

HISB:

Health information seeking behaviour

HRI:

Health research or information

References

  1. Appleby, B, F C, A B. A. Knowledge mobilisation in bridging patient-practitioner-researcher boundaries: A systematic integrative review. J Adv Nurs. 2021;77:523–36.

  2. Cochrane. What is Cochrane? 2023 [Available from: https://www.cochrane.org/news/what-cochrane.

  3. NHS. Standard for creating health content 2023 [Available from: https://service-manual.nhs.uk/content/standard-for-creating-health-content.

  4. Usmani, S, Alamgir A. Knowledge Translation, Knowledge Mobilization, or Knowledge Transfer-Are they synonymous in Canadian context? Background and context. 2020.

  5. Tseng V.Research on research use: Building theory, empirical evidence, and a global field. 2022.

  6. Mirzaei A, Aslani P, Luca E, Schneider C. Predictors of Health Information-Seeking Behavior: Systematic Literature Review and Network Analysis. J Med Internet Res. 2021;23(7): e21680.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Pollock D, Davies EL, Peters MDJ, Tricco AC, Alexander L, McInerney P, et al. Undertaking a scoping review: A practical guide for nursing and midwifery students, clinicians, researchers, and academics. J Adv Nurs. 2021;77(4):2102–13.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Peters MDJ, Casey M, Tricco AC, Pollock D, Munn Z, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Implement. 2021;19(1):3–10.

    Article  PubMed  Google Scholar 

  9. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMAScR): Checklist and Explanation. Ann Intern Med. 2018;169:467–73.

    Article  PubMed  Google Scholar 

  10. Bodnar LM, Fox MP. What the hashtag? Using twitter and podcasting to extend your scientific reach. Paediatr Perinat Epidemiol. 2020;34:553–5.

    Article  PubMed  Google Scholar 

  11. Smailhodzic E, Hooijsma W, Boonstra A, Langley DJ. Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Services Research. 2016;16(442).

  12. NIHR. Knowledge is Power: Public perspectives on Open Access publishing 2021 [Available from: https://www.nihr.ac.uk/documents/knowledge-is-power-public-perspectives-on-open-access-publishing/28787.

  13. Barwick MA, Boydell KM, Stasiulis E, Ferguson HB, Blase K, Fixsen D. Research utilization among children's mental health providers. Implement Sci. 2008;3.

  14. Page M, McKenzie J, Bossuyt P, Boutron I, Hoffmann T, Mulrow C, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:N71.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Balls-Berry J, Sinicrope P, Valdez Soto M, Brockman T, Bock M, Patten C. Linking Podcasts With Social Media to Promote Community Health and Medical Research: Feasibility Study. JMIR Form Res. 2018;2(2).

  16. Brondi S, Pellegrini G, Guran P, Fero M, Rubin A. Dimensions of trust in different forms of science communication: the role of information sources and channels used to acquire science knowledge. Jcom J Sci Commun. 2021;20(3).

  17. Abara E, Narushima M, Abara EO. Patterns of computer and Internet usage among urology patients in two rural Northern Ontario communities. Journal de l’Association des urologues du Canada. 2010;4(1):37–41.

    PubMed  PubMed Central  Google Scholar 

  18. Afeef M, Felemban N, Alhazmi N, Natto ZS. Factors associated with a late visit to dentists by children: A cross-sectional community-based study in Saudi Arabia. J Taibah Univ Med Sci. 2021;16(4):513–20.

    PubMed  PubMed Central  Google Scholar 

  19. Ahmad M, Malik A, Mahmood K. Dengue-Related Information Needs and Information-Seeking Behavior in Pakistan. Health Commun. 2021:1–11. Epub 2021 Nov 7. PMID: 34747288.

  20. Akidi JO. The role of information literacy in the actualization of healthy living: A case study of Abia State.  Library Philosophy Pract. 2019.

  21. Alhuwail D, Abduo H, Alqabandi N, Abu-Ghefreh A, Dawwas B, et al. Engagement and Usage Patterns of a Diabetes Education Website Tailored for Arabic Speakers: A Case Study of a Diabetes Website from Kuwait. J Consumer Health Int. 2018;22(4):337–51.

    Article  Google Scholar 

  22. Almusawi H, Alasim K, BinAli S, Alherz M. Disparities in health literacy during the COVID-19 pandemic between the hearing and deaf communities. Res Dev Disabil. 2021;119: 104089.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Alsaadi MM. Evaluation of internet use for health information by parents of asthmatic children attending pediatric clinics in Riyadh. Saudi Arabia Ann Saudi Med. 2012;32(6):630–6.

    Article  PubMed  Google Scholar 

  24. Alvarez-Galvez J, Salinas-Perez J, Montagni I, Salvador-Carulla L. The persistence of digital divides in the use of health information: a comparative study in 28 European countries. Int J Public Health (Springer Nature). 2020;65(3):325–33.

    Article  Google Scholar 

  25. Anyaoku EN, Nwosu OC. Extent of access to health information and sources for chronic disease patients in tertiary health institutions in South East Nigeria: Implications for libraries role. Library Philosophy Pract. 2017;2017(1).

  26. Athanasopoulou C, Välimäki M, Koutra K, Löttyniemi E, Bertsias A, Basta M, et al. Internet use, eHealth literacy and attitudes toward computer/internet among people with schizophrenia spectrum disorders: A cross-sectional study in two distant European regions. BMC Med Inform Decis Making. 2017;17(1).

  27. Bianco A, Zucco, R., Nobile CGA, Pileggi C, Pavia M. Parents seeking health-related information on the Internet: cross-sectional study. J Med Int Res. 2013;15(9).

  28. Chae J, Quick BL. An examination of the relationship between health information use and health orientation in Korean mothers: focusing on the type of health information. J Health Commun. 2015;20(3):275–84.

    Article  PubMed  Google Scholar 

  29. Chung K, Cho H, Y., Kim YR, Jhung K, Koo HS, et al. Medical Help-Seeking Strategies for Perinatal Women With Obstetric and Mental Health Problems and Changes in Medical Decision Making Based on Online Health Information: Path Analysis.  J Med Int Res. 2020;22(3).

  30. Das BR, Bressers, M. B, Leatherman JC. Rural health care information access and the use of the internet: Opportunity for university extension.  J Ext. 2015;53(2).

  31. Edewor N. Access to health information by people living with HIV/AIDS in Nigeria.  Lib Philos Pract. 2010:1–9.

  32. Esmaeilzadeh S, Ashrafi-Rizi H, Shahrzadi L, Mostafavi FA. Survey on adolescent health information seeking behavior related to high-risk behaviors in a selected educational district in Isfahan. PloS one. 2018;13(11).

  33. Eysenbach G, Powell J, Zhang Y, Lee YJ, Boden-Albala B, Larson E, et al. Online health information seeking behaviors of Hispanics in New York City: a community-based cross-sectional study. J Med Int Res. 2014;16(7).

  34. Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, et al. Cancer-Related Information Seeking Among Cancer Survivors: Trends Over a Decade (2003–2013). J Cancer Educ. 2016;31(2):348–57.

    Article  PubMed  Google Scholar 

  35. Frey SM, Fagnano M, Mammen JR, Halterman JS. Health-related internet use among adolescents with uncontrolled persistent asthma. J Asthma. 2020;58(12):1610–5.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Garg N, Venkatraman A, Pandey A, Kumar N. YouTube as a source of information on dialysis: A content analysis. Nephrology. 2015;20(5):315–20.

    Article  PubMed  Google Scholar 

  37. Garrido D, Watanabe A, Ciamponi AL, Couto TM, Alves LAC, Haddad A, et al. Patterns of Internet and smartphone use by parents of children with chronic kidney disease.  PloS One. 2019;14(2).

  38. Geana M, Greiner K, Cully A, Talawyma M, Daley C. Improving health promotion to American Indians in the Midwest United States: preferred sources of health information and its use for the medical encounter. J Commun Health. 2012;37(6):1253–63.

    Article  Google Scholar 

  39. Gonzalez M, Sanders-Jackson A, Wright T. Web-Based Health Information Technology: Access Among Latinos Varies by Subgroup Affiliation. J Med Int Res. 2019;21(4).

  40. Greenstock L, Naccarella L, Kron RW, Elliott K, Fraser C, Bingham A, et al. Telecommunications and health information for culturally and linguistically diverse communities.  Telecommun J Aust. 2013;63(1):14.1-8.

  41. Greenstock L, Woodward-Kron R, Fraser C, Bingham A, Naccarella L, Elliott K, et al. Telecommunications as a means to access health information: an exploratory study of migrants in Australia. J Public Health Res. 2012;1(3):216–21.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Hillyer G, Schmitt K, Lizardo M, Reyes A, Bazan M, et al. Electronic communication channel use and health information source preferences among Latinos in Northern Manhattan. J Community Health. 2017;42(2):349–57.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Hogan TP, Hill NJ, Locatelli SM, Weaver FM, Thomas FP, et al. Health Information seeking and technology use among Veterans with spinal cord injuries and disorders. PM & R: Journal of Injury, Function & Rehabilitation. 2016;8(2):123–30.

    Article  Google Scholar 

  44. Honey M, Waterworth S, Aung H. Older consumers’ readiness for e-health in New Zealand. Stud Health Technol Inform. 2016;225:178–82.

    PubMed  Google Scholar 

  45. Lorver TR. Assessment of Utilization of Health Information Resources by Diabetic Patients in Benue State Nigeria. Lib Philos Pract. 2020:1–103.

  46. Islam NS, Patel S, Wyatt LC, Sim S-C, Mukherjee-Ratnam R, et al. Sources of health information among select Asian American Immigrant Groups in New York City. Health Commun. 2016;31(2):207–16.

    Article  PubMed  Google Scholar 

  47. Jalilian M, Kakaei H, Nourmoradi H, Bakhtiyari S, Mazloomi S, et al. Health Information seeking behaviors related to COVID-19 among young people: an online survey. Int J High Risk Behav Addict. 2021;10(1):1–6.

    Article  Google Scholar 

  48. Jo HS, Hwang M, S., Lee H, Jo HS, Hwang M-S, et al. Market segmentation of health information use on the Internet in Korea.  Int J Med Inform. 2010;79(10):707–15.

  49. Kelley MS, Su D, Britigan DH. Disparities in health information access: results of a County-Wide survey and implications for health communication. Health Commun. 2015;31(5):575–82.

    Article  PubMed  Google Scholar 

  50. Kim H, Mahmood A, Goldsmith JV, Chang H, Kedia S, Chang CF. Access to broadband Internet and its utilization for health information seeking and health communication among informal caregivers in the United States. J Med Syst. 2021;45(2):1–9.

    Article  Google Scholar 

  51. Kim K, Kwon N. Profile of e-patients: analysis of their cancer information-seeking from a national survey. J Health Commun. 2010;15(7):712–33.

    Article  PubMed  Google Scholar 

  52. Kugbey N, Meyer-Weitz A, Oppong AK. Access to health information, health literacy and health-related quality of life among women living with breast cancer: Depression and anxiety as mediators. Patient Educ Couns. 2019;102(7):1357–63.

    Article  PubMed  Google Scholar 

  53. Laurent MR, Cremers S, Verhoef G, Dierickx D. Internet use for health information among haematology outpatients: a cross-sectional survey. Inform Health Soc Care. 2012;37(2):62–73.

    Article  PubMed  Google Scholar 

  54. Lee C-j, Gray S, W., Lewis N. Internet use leads cancer patients to be active health care consumers. Patient Educ Counsel. 2010;81:63.

  55. Lim HM, Wong S, S., Yip KC, Chang FWS, Chin AJZ, et al. Online health information-seeking behaviour of patients attending a primary care clinic in Malaysia: a cross-sectional study. Fam Prac. 2022;39(1):38–45. Published: 23 August 2021.

  56. Lustria MLA, Smith SA, Hinnant CC. Exploring digital divides: an examination of eHealth technology use in health information seeking, communication and personal health information management in the USA. Health Informatics J. 2010;17(3):224–43.

    Article  Google Scholar 

  57. Maddock C, Lewis I, Ahmad K, Sullivan R. Online information needs of cancer patients and their organizations. Ecancermedicalscience. 2011;5:235.

    CAS  PubMed  PubMed Central  Google Scholar 

  58. Marazienė D, Klumbienė J, Tomkevičiūtė J, Misevičienė I. Sources and reasons for seeking health information by Lithuanian adults. Medicina (Kaunas). 2012;48(7):371–8.

    PubMed  Google Scholar 

  59. Marco-Ruiz L, Wynn, R., Oyeyemi SO, Budrionis A, Yigzaw KY, et al. Impact of Illness on Electronic Health Use (The Seventh Tromsø Study - Part 2): Population-Based Questionnaire Study. J Med Int Res. 2020;22(3).

  60. Masson CL, Chen IQ, Levine JA, Shopshire MS, Sorensen JL. Health-related internet use among opioid treatment patients. Addict Behav Rep. 2019;9:100157. https://doi.org/10.1016/j.abrep.2018.100157.

  61. Messias DKH, Estrada RD. Patterns of communication technology utilization for health information among hispanics in South Carolina: Implications for health equity. Health Equity. 2017;1(1):35–42.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Mi M, Stefaniak J, Afonso N. Community needs assessment to reach out to an underserved population. Med Ref Serv Q. 2014;33(4):375–90.

    Article  PubMed  Google Scholar 

  63. Nangsangna RD, da-Costa Vroom F. Factors influencing online health information seeking behaviour among patients in Kwahu West Municipal, Nkawkaw, Ghana. Online J Public Health Inform. 2019;11(2):e13. https://doi.org/10.5210/ojphi.v11i2.10141.

  64. Osei Asibey B, Agyemang S, Boakye Dankwah A. The Internet Use for Health Information Seeking among Ghanaian University Students: A Cross-Sectional Study. Int J Telemed Appl. 2017;2017:1756473. https://doi.org/10.1155/2017/1756473.

  65. Ozaki A, Murakami, M., Nomura S, Sawano T, Tsubokura M, et al. Overall health information exposure, its barriers and impacts on attitude toward healthcare among cancer patients. The long-term aftermath of the 2011 triple disaster in Fukushima, Japan: A single institution cross-sectional study. Health Inform J. 2021;27(2):1–21.

  66. Özkan S, Mellema JJ, Nazzal A, Lee SG, Ring D. Online Health Information Seeking in Hand and Upper Extremity Surgery. J Hand Surg Am. 2016;41(12):e469–75. https://doi.org/10.1016/j.jhsa.2016.09.006.

  67. Paige SR, Alpert MJ, Bylund CL. Fatalistic cancer beliefs across generations and geographic classifications: examining the role of health information seeking challenges and confidence. J Cancer Educ. 2021;36(1):3–9.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Parija PP, Tiwari P, Sharma P, Saha SK. Determinants of online health information-seeking behavior: A cross-sectional survey among residents of an urban settlement in Delhi. J Educ Health Promot. 2020;9:344.

    Article  PubMed  PubMed Central  Google Scholar 

  69. Radina ME, Ginter AC, Brandt J, Swaney J, Longo DR. Breast cancer patients’ use of health information in decision making and coping. Cancer Nurs. 2011;34(5):E1–12.

    Article  PubMed  Google Scholar 

  70. Ragusa AT, Crampton A. Doctor google, health literacy, and individual behavior: a study of university employees’ knowledge of health guidelines and normative practices. Am J Health Educ. 2019;50(3):176–89.

    Article  Google Scholar 

  71. Ray R, Sewell A, A., Gilbert KL, Roberts JD. Missed Opportunity? Leveraging Mobile Technology to Reduce Racial Health Disparities. J Health Polit Policy Law. 2017;42(5):901–24.

  72. Reghagwa IC, Ono EO. The Influence Of Covid-19 Pandemic On The Access To Health Information By The Elderly In Edo State, Nigeria. Lib Philos Pract. 2021.

  73. Ren C, Deng Z, Hong Z, Zhang W. Health information in the digital age: an empirical study of the perceived benefits and costs of seeking and using health information from online sources.  Health Inform Lib J. 36(2):153–67.

  74. Renahy E, Parizot I, Chauvin P, Renahy E, Parizot I, et al. Determinants of the frequency of online health information seeking: results of a web-based survey conducted in France in 2007. Inform Health Soc Care. 2010;35(1):25–39.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Rooks RN, Wiltshire JC, Elder K, BeLue R, Gary LC. Health information seeking and use outside of the medical encounter: Is it associated with race and ethnicity? Soc Sci Med. 2012;74(2):176–84.

    Article  PubMed  Google Scholar 

  76. Schladen MM, Libin A, Ljungberg I, Isai B, Groah S. Toward literacy-neutral spinal cord injury information and training. Topics Spinal Cord Injury Rehabil. 2011;16(3):70–83.

    Article  Google Scholar 

  77. Schmidt H, Wild E-M, Schreyögg J. Explaining variation in health information seeking behaviour - Insights from a multilingual survey. Health Policy. 2021;125(5):618–26.

    Article  PubMed  Google Scholar 

  78. Seçkin G. Health information on the web and consumers' perspectives on health professionals' responses to information exchange. Medicine 20. 2014;3(2):e4.

  79. Seçkin G. Expansion of Parson's sick role into cyberspace: Patient information consumerism and subjective health in a representative sample of U.S. internet users. Soc Sci Med. 2019;247:112733. https://doi.org/10.1016/j.socscimed.2019.112733.

  80. Soni T, Lakshmi P, M. V, Kaur M. A cross sectional study on internet usage for health information among 1849 years in urban Chandigarh.  Indian J Commun Health. 2017;29(4):445–9.

  81. Suri VR, Majid S, Chang Y-K, Foo S. Assessing the influence of health literacy on health information behaviors: A multi-domain skills-based approach. Patient Educ Couns. 2016;99(6):1038–45.

    Article  PubMed  Google Scholar 

  82. Vader AM, Walters ST, Roudsari B, Nguyen N. Where Do College Students Get Health Information? Believability and Use of Health Information Sources. Health Promot Pract. 2011;12(5):713–22.

    Article  PubMed  Google Scholar 

  83. Viswanath K, McCloud R, Minsky S, Puleo E, Kontos E, Bigman-Galimore C, et al. Internet use, browsing, and the urban poor: implications for cancer control. JNCI Monographs. 2013;2013(46):199–205.

    Article  CAS  Google Scholar 

  84. Wang S, Yeh H, Stein A, Miller E. Use of Health Information Technology by Adults With Diabetes in the United States: Cross-sectional Analysis of National Health Interview Survey Data (2016-2018) JMIR Diabetes. 2022;7(1):e27220. https://doi.org/10.2196/27220.

  85. Weber W, Reinhardt A, Rossmann C. Lifestyle Segmentation to Explain the Online Health Information-Seeking Behavior of Older Adults: Representative Telephone Survey. J Med Internet Res. 2020;22(6):e15099. https://doi.org/10.2196/15099.

  86. Włodarczyk M, Włodarczyk J, Zalewska K, Olczyk M, Maryńczak K, Gajewski P, et al. Preferences of patients with inflammatory bowel disease for receiving specialized health services using technology: the role of Internet and other sources of medical information. Pol Przegl Chir. 2019;91(2):1–6.

    Article  PubMed  Google Scholar 

  87. Yamashita T, Bardo RA, Cummins P, Millar RJ, Sahoo S, et al. The Roles of Education, Literacy, and Numeracy in Need for Health Information during the Second Half of Adulthood: A Moderated Mediation Analysis. J Health Commun. 2019;24(3):271–83.

    Article  PubMed  Google Scholar 

  88. Yoon J, Huang H, Kim S. Trends in health information-seeking behaviour in the US foreign-born population based on the Health Information National Trends Survey, 2005–2014. . Inform Res Int Elect J. 2017;22(3).

  89. Zhang D, Shi Z, Hu H, Han GK. Classification of the use of online health information channels and variation in motivations for channel selection: cross-sectional survey. J Med Internet Res. 2020;23(3): e24945.

    Article  Google Scholar 

  90. Zhao J, Han H, Zhong, B., Xie W, Chen Y, et al. Health information on social media helps mitigate Crohn's disease symptoms and improves patients' clinical course.  Comput Human Behav. 2021;115.

  91. Zulman DM, Piette J, D., Jenchura EC, Asch SM, Rosland A-M. Facilitating out-of-home caregiving through health information technology: survey of informal caregivers' current practices, interests, and perceived barriers. J Med Int Res. 2013;15(7):e123.

  92. Colineau N, Paris C. Talking about your health to strangers: understanding the use of online social networks by patients. New Rev Hypermedia Multimedia. 2010;16(1–2):141–60.

    Article  Google Scholar 

  93. Alghamdi KM. Internet use by the public to search for health-related information. Int J Med Inform. 2012;81(6):363–73.

    Article  PubMed  Google Scholar 

  94. Ahola Kohut S, LeBlanc C, O'Leary K, McPherson AC, McCarthy E, Nguyen C, et al. The internet as a source of support for youth with chronic conditions: A qualitative study. Child: care, healthand development. 2017;44(2):212–20.

  95. Ashing-Giwa K, Tapp C, Rosales M, McDowell K, Martin V, Santifer RH, et al. Peer-based models of supportive care: the impact of peer support groups in African American breast cancer survivors. Oncol Nurs Forum. 2012;39(6):585–91.

    Article  PubMed  Google Scholar 

  96. Chavarria EA, Chaney EH, Stellefson ML, Chaney JD, Chavarria N, Dodd V, et al. Types and factors associated with online health information seeking among college men in latino fraternities: A qualitative study. Am J Mens Health. 2017;11(6):1692–702.

    Article  PubMed  Google Scholar 

  97. Cho J, Smith K, C., Roter D, Guallar E, Noh DY, et al. Needs of women with breast cancer as communicated to physicians on the Internet. Supportive Care in Cancer. 2011;19(1):113–21.

  98. Clark CR, Baril CN, Achille E, Foster S, Johnson N, et al. Trust yet verify: physicians as trusted sources of health information on HPV for black women in socioeconomically marginalized populations. Prog Commun Health Partnersh. 2014;8(2):169–79.

    Article  Google Scholar 

  99. Coffey NT, Cassese J, Cai X, Garfinkel S, Patel D, Jones R, Shaewitz D, Weinstein AA. Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation. J Med Internet Res. 2017;19(5):e159. https://doi.org/10.2196/jmir.7027.

  100. Coffey NT, Weinstein AA, Cai C, Cassese J, Jones R, Shaewitz D, et al. Identifying and understanding the health information experiences and preferences of individuals with TBI, SCI, and Burn Injuries. J Patient Exp. 2016;3(3):88–95.

    Article  PubMed  PubMed Central  Google Scholar 

  101. Criss S, Woo, Baidal JA, Goldman RE, Perkins M, Cunningham C, et al. The Role of Health Information Sources in Decision-Making Among Hispanic Mothers During Their Children's First 1000 Days of Life. Matern Child Health J. 2015;19(11):2536–43.

  102. Donelle L, &, Hall J. Health Promotion Body Maps of Criminalized Woman. J Correct Health Care. 2016;22(4):331–41.

  103. Faith J, Thorburn S, Sinky TH. Exploring healthcare experiences among online interactive weight loss forum users. Comput Hum Behav. 2016;57:326–33.

    Article  Google Scholar 

  104. Feinstein NW. Making sense of autism: Progressive engagement with science among parents of young, recently diagnosed autistic children. Public Underst Sci. 2014;23(5):592–609.

    Article  PubMed  Google Scholar 

  105. Filippi M, McCloskey C, Williams C, Bull J, Choi W, Allen Greiner K, et al. Perceptions, Barriers, and Suggestions for Creation of a Tobacco and Health Website Among American Indian/Alaska Native College Students. J Community Health. 2013;38(3):486–91.

    Article  PubMed  PubMed Central  Google Scholar 

  106. Jensen M, Combariza Bayona DA, Sripada K. Mercury Exposure among E-Waste Recycling Workers in Colombia: Perceptions of Safety, Risk, and Access to Health Information. Int J Environ Res Public Health. 2021;18(17):9295. https://doi.org/10.3390/ijerph18179295.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  107. Kim HN. Understanding of how older adults with low vision obtain, process, and understand health information and services. Inform Health Soc Care. 2017;44(1):70–8.

    Article  PubMed  Google Scholar 

  108. King‐Shier K, Lau, A., Fung S, LeBlanc P, Johal S. Ethnocultural influences in how people prefer to obtain and receive health information. J Clin Nurs (John Wiley & Sons, Inc). 2018;27(7).

  109. Koohkan E, Yousofian S, Rajabi G, Zare-Farashbandi F. Health information needs of families at childhood cancer: A qualitative study. J Educ Health Promot. 2019;8:246.

    PubMed  PubMed Central  Google Scholar 

  110. Maitra C, Rowley J. Using a social media based intervention to enhance eye health awareness of members of a deprived community in India. Inf Dev. 2022;38(3):438–51. First published online May 17, 2021.

  111. Mårtensson L, Lytsy P, Westerling R, Wångdahl J. Experiences and needs concerning health related information for newly arrived refugees in Sweden. BMC Public Health. 2020;20(1):1044. https://doi.org/10.1186/s12889-020-09163-w.

    Article  PubMed  PubMed Central  Google Scholar 

  112. Obaremi OD, Olatokun WM. A survey of health information source use in rural communities identifies complex health literacy barriers. Health Info Libr J. 2022;39(1):59–67. Epub 2021 Feb 22.

  113. Papen U. Informal, incidental and ad hoc: The information-seeking and learning strategies of health care patients. Lang Educ. 2012;26(2):105–19.

    Article  Google Scholar 

  114. Peak T, Gast J, Ahlstrom DA. Needs assessment of Latino men’s health concerns. Am J Mens Health. 2010;4(1):22–32.

    Article  PubMed  Google Scholar 

  115. Ramirez AS, Graff K, Nelson D, Galica K, Leyva B, Banegas M, et al. Who Seeks Cita Con El Doctor? Twelve years of Spanish-Language radio program targeting US Latinos. Health Educ Behav. 2015;42(5):611–20.

    Article  PubMed  Google Scholar 

  116. Rust C, Davis C. Health literacy and medication adherence in underserved African-American breast cancer survivors: A qualitative study. Soc Work Health Care. 2011;50(9):739–61.

    Article  PubMed  Google Scholar 

  117. Scantlebury A, Booth A, Hanley B. Experiences, practices and barriers to accessing health information: A qualitative study. Int J Med Inform. 2017;103:103–8.

    Article  PubMed  Google Scholar 

  118. Shum J, Poureslami I, Cheng N, FitzGerald JM. Responsibility for COPD self-management in ethno-cultural communities: The role of patient, family member, care provider and the system. Divers Equal Health Care. 2014;11(3):201–13.

    Google Scholar 

  119. Smith SR, Kushalnagar P, Hauser PC. Deaf Adolescents’ Learning of Cardiovascular Health Information: Sources and Access Challenges. J Deaf Stud Deaf Educ. 2015;20(4):408–18.

    Article  PubMed  PubMed Central  Google Scholar 

  120. Vamos CA, Merrell L, Detman L, Louis J, Daley E. Exploring Women’s Experiences in Accessing, Understanding, Appraising, and Applying Health Information During Pregnancy. J Midwifery Womens Health. 2019;64(4):472–80.

    Article  PubMed  Google Scholar 

  121. Yi YJ. Health literacy and health information behavior of Florida public library users: A mixed methods study. J Librariansh Inf Sci. 2015;47(1):17–29.

    Article  Google Scholar 

  122. Yi YJ, Stvilia B, Mon L. Cultural influences on seeking quality health information: An exploratory study of the Korean community. Libr Inf Sci Res. 2012;34(1):45–51.

    Article  Google Scholar 

  123. Yusup PM, Damayani NA, Subekti P, Sugiana D, Kuswarno E. Dimensions of health information behavior of the poor affected by annual flooding in East Bandung region, Indonesia. Lib Philos Pract. 2019.

  124. Zach L, Dalrymple WP, Rogers ML, Williver-Farr H. Assessing internet access and use in a medically underserved population: implications for providing enhanced health information services. Health Info Libr J. 2011;29(1):61–71.

    Article  PubMed  Google Scholar 

  125. Schrank B, Sibitz I, Unger A, Amering M. How patients with schizophrenia use the internet: qualitative study. J Med Internet Res. 2010;12(5): e70.

    Article  PubMed  PubMed Central  Google Scholar 

  126. Benard R, Chipungahelo MS. Accessibility of women to health information in Tanzania: A case study of Morogoro Region. Libr Rev. 2017;66(6):415–29.

    Article  Google Scholar 

  127. Blaga OM, Cherecheș RM, Baba CO. A community-based intervention for increasing access to health information in rural settings. Transylvanian Rev Admin Sci. 2019;15(58):24–37.

    Google Scholar 

  128. Bulled N. “You can find anything online”: Biocommunicability of cyber-health information and its impact on how the NET generation accesses health care. Hum Organ. 2011;70(2):153–63.

    Article  Google Scholar 

  129. Chisolm DJ, Hardin DS, McCoy KS, Johnson LD, McAlearney AS, Gardner, et al. Health literacy and willingness to use online health information by teens with asthma and diabetes. Telemed J Health . 2011;17(9):676–82.

  130. Jones N, Pincock K, Baird S, Yadete W, Hamory Hicks J. Intersecting inequalities, gender and adolescent health in Ethiopia. Int J Equity Health. 2020;19(1):97.

    Article  PubMed  PubMed Central  Google Scholar 

  131. Judd-Glossy L, Ariefdjohan M, Ketzer J, Matkins K, Schletker J, Krause A, et al. Considering the value of online support groups for colorectal conditions: perspectives from caregivers and adult patients. Pediatr Surg Int. 2022;38(1):31–42.

    Article  PubMed  Google Scholar 

  132. Lam W, Dawson A, Fowler C. The Health Literacy of Hong Kong Chinese Parents with Preschool Children in Seasonal Influenza Prevention: A Multiple Case Study at Household Level. PLoS One. 2015;10(12):e0143844. https://doi.org/10.1371/journal.pone.0143844.

  133. Terry DR, Lê Q, Nguyen HB. Moving forward with dignity: Exploring health awareness in an isolated Deaf community of Australia. Disabil Health J. 2016;9(2):281–8.

    Article  PubMed  Google Scholar 

  134. Turnbull ML, Jin Y, Yau AHY, Lai MSY, Cheung MYC, et al. Health in hyper-connected Hong Kong: examining attitudes and access to mobile devices and health information among older Chinese residents. MHealth. 2021;7:43.

    Article  PubMed  PubMed Central  Google Scholar 

  135. Waldman L, Ahmed T, Scott N, Akter S, Standing H, et al. “We have the internet in our hands”: Bangladeshi college students’ use of ICTs for health information. Glob Health. 2018;14(1):31.

    Article  Google Scholar 

  136. Yi YJ. Consumer health information behavior in public libraries: A qualitative study. Library Quarterly. 2015;85(1):45–63.

    Article  Google Scholar 

  137. Zaim H, Keedy H, Dolce M, Chisolm D. Improving Teen Girls’ Skills for Using Electronic Health Information. Health Literacy Res Pract. 2021;5(1):e26–34.

    Google Scholar 

  138. Cutilli CC. Patient education corner. Seeking health information: what sources do your patients use? Orthopaedic Nursing. 2010;29(3):214–9.

  139. Moorhead SA, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res. 2013;15(4):e85. https://doi.org/10.2196/jmir.1933.

  140. Rose ID, Friedman DB. We need health information too: A systematic review of studies examining the health information seeking and communication practices of sexual minority youth. Health Educ J. 2013;72(4):417–30.

    Article  Google Scholar 

  141. Tan SS-L, Goonawardene N. Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review. J Med Int Res. 2017;19(1):e9.

  142. Ohlow MA, Brunelli M, Lauer B. Internet use in patients with cardiovascular diseases: Bad Berka Cross-Sectional Study (BABSY). Int J Clin Pract. 2013;67(10):990–5.

    Article  PubMed  Google Scholar 

  143. Gavgani VZ, Qeisari E, & Jafarabadi, M. A. Health information seeking behavior (HISB) of people and some related factors; a study in developing country. Library Philosophy Pract. 2013.

  144. Neter E, Brainin E. eHealth literacy: extending the digital divide to the realm of health information. J Med Internet Res. 2012;14(1):e19. https://doi.org/10.2196/jmir.1619.

  145. Gavgani VZ, Qeisari E, Jafarabadi MA. Health information seeking behavior (HISB) of people and some related factors; a study in developing country. Library Philosophy Pract. 2013.

  146. Jia X, Pang Y, Liu L. Online health information seeking behavior: A systematic review. Healthcare. 2021;9:1740.

    Article  PubMed  PubMed Central  Google Scholar 

  147. Lim H, Dunn A, Lim J, Abdullah A, Ng C. Association between online health information-seeking and medication adherence: A systematic review and meta-analysis. DigitaL Health. 2022;8.

  148. Zenone M, Ow N, Barbic S. TikTok and public health: a proposed research agenda. BMJ Global Health. 2021;6:e007648.

  149. Bonnevie E, Rosenberg S, Kummeth C, Goldbarg J, Wartella E, Smyser J. Using social media influencers to increase knowledge and positive attitudes toward the flu vaccine. PLoS ONE. 2020;15(10): e0240828.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  150. Little A, Hampton Z, T. G, Meyer C, Kalnow A. Podcasting in Medicine: A Review of the Current Content by Specialty. Cureus. 2020;12(1):e6726.

  151. Cooper K, Mandy W, Butler C, Russell A. The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis. Autism. 2022;26(4):963–74.

    Article  PubMed  Google Scholar 

  152. Robinson A, Elarbi M, Todd A, Husband A. A qualitative exploration of the barriers and facilitators affecting ethnic minority patient groups when accessing medicine review services: Perspectives of healthcare professionals. Health Expect. 2022;25(2):628–38.

    Article  PubMed  Google Scholar 

  153. Schwei RJ, Johnson TP, Matthews AK, Jacobs EA. Perceptions of negative health-care experiences and self-reported health behavior change in three racial and ethnic groups. Ethn Health. 2017;22(2):156–68. https://doi.org/10.1080/13557858.2016.1244621.

    Article  PubMed  Google Scholar 

  154. Ahmadinia H, Eriksson-Backa K, Nikou, Shahrokh. Health information seeking behaviour during exceptional times: A case study of Persian-speaking minorities in Finland. Lib Inform Sci Res. 2022;44(2):101156.

  155. JPT H, J T, J C, M C, T L, MJ P, et al. Cochrane Handbook for Systematic Reviews of Interventions version 6.2 (updated February 2021). 2021.

Download references

Acknowledgements

The authors would like to acknowledge the funder for making this work possible and colleagues for their feedback on an early presentation of the review’s findings.

Funding

This review was funded by a research contract awarded by National Institute for Health and Care Research (NIHR Evidence). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funder has had no role in the design of the protocol nor any role in the conduct of the scoping review.

Author information

Authors and Affiliations

  1. Kingston University, Faculty of Health, Science, Social Care and Education, Kingston-upon-Thames, KT27LB, UK

    Celayne Heaton-Shrestha, Kristin Hanson, Tushna Vandrevala & Lindsay Bearne

  2. University of Surrey, Department of Psychology, Guildford, GU2 7XH, UK

    Sophia Quirke-McFarlane

  3. Guy’s and St Thomas’ NHS Foundation Trust, Department of Physiotherapy, London, SE1 7EH, UK

    Nancy Delaney

  4. St George’s, University of London, Population Health Research Institute, 1st Floor Jenner Wing, Cranmer Terrace, London, SW17 0RE, UK

    Lindsay Bearne

Authors
  1. Celayne Heaton-Shrestha
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kristin Hanson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sophia Quirke-McFarlane
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Nancy Delaney
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Tushna Vandrevala
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Lindsay Bearne
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

LB, TV contributed to the study’s conception; LB, TV, CHS, KH, contributed to the design of the methodology; CHS, KH, SQM, ND contributed to the performance of the search, data extraction and analysis; the first draft of the manuscript and the tables were created by CHS and refined with input from LB, TV and KH. CHS prepared the final draft of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Lindsay Bearne.

Ethics declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1:

Additional file 2: Supplementary table 1.

 Search strategy.

Additional file 3: Supplementary table 2.

 List of included studies, showing relevance to scoping review objective and evidence.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Heaton-Shrestha, C., Hanson, K., Quirke-McFarlane, S. et al. Exploring how members of the public access and use health research and information: a scoping review. BMC Public Health 23, 2179 (2023). https://doi.org/10.1186/s12889-023-16918-8

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1186/s12889-023-16918-8

Keywords

BMC Public Health

ISSN: 1471-2458

Contact us