Preferred format and strategies for seeking and trusting online health information: a survey of cardiology outpatient attendees across three New Zealand hospitals

Introduction

We all need reliable, relevant and understandable information to make decisions about self- and family-care, deal with our health and health problems and support the choices we make about managing them. The Internet is an important source of health-related information for global users and has democratised available information and information sharing. However, in recent years, the sheer quantity of information, the surge of misinformation, the blending of fact with fake information and the lack of standardised regulation of the Internet leaves online consumers vulnerable.^1,2 This ‘infodemic’, a term coined by the World Health Organization, has been described as one of the greatest threats to global health.³

While health professionals are the most trusted and preferred source of health information,^4,5 the COVID-19 pandemic has also served to reduce access to health care providers and has exacerbated unmet preventive and diagnostic health needs.⁶ However, even if consumers are able to access health care, unmet information needs may still remain. This may be due to a range of factors, such as: what is communicated (eg unfamiliar medical jargon, language issues); how it is communicated (eg verbal vs written vs pictures); how clear the communication is and how clarity is checked with the patient; the distress or anxiety at the time of communication (eg uncertain prognosis); and significant health service time constraints that limit conversations. Furthermore, it has been estimated that individuals immediately forget 40–80% of information conveyed during a consultation,⁷ and may think of other relevant questions afterwards.

People with one of more long-term conditions or a life-threatening illness have been reported to have higher rates of online information seeking.^8,9 These populations are heterogeneous by age, gender, ethnicity, education and digital literacy but they all require access to reliable, relevant health information so they can make sense of uncertainty and navigate opinion from true or false information.

When faced with a heart health concern, consumers may be referred to a cardiology outpatient clinic. However, the load of information they may receive is often complex and complicated, and time to discuss and ask questions and clarify understanding is very short. It was hypothesised that consumers attending cardiology outpatients may have high information needs and be motivated to seek information online. In three New Zealand (NZ) hospital cardiology outpatient clinics, we aimed to investigate the experiences of consumers when searching for online health information, what they would trust, and their preferences for the way it is presented. This knowledge is critical to online health portal providers in their curation of online content, and the provision of formats that support building knowledge and skills for self-management, self-efficacy and ultimately equity of health outcomes.

Methods

The description of this cross-sectional survey is given according to the CROSS checklist for reporting surveys.¹⁰

Results

Between June 2016 and August 2017, 708 surveys were filled in (336 at Counties Manukau, 237 at Hutt Valley and 135 at Auckland) with 658 (93%) including data on age, gender and ethnicity (Table 1). Of the survey respondents, 51% were female, two-thirds were aged between 45 and 75 years and 16% self-identified as being of Māori, 12% Pacific, 60% European and 12% as other ethnicities (mainly Indian or Asian).

Table 2 describes survey question total responses. The majority (566/702 (81%)) had used the Internet (or someone in their family had searched for them) at some time in the past, with 442/695 (64%) having looked online in the past 12 months for health-related information. Adjusting for gender and ethnicity, the frequency of searching for health information was strongly associated with age (Table 3). Compared to the 75+ year age group, the odds of looking online at least every 3 months for health information was strongly associated with being in the younger age groups; for 45–64 years OR 1.88 (95% CI 1.14–3.10), for 24–44 years OR 3.85 (95% CI 2.08–7.13) and for less than 25 years OR 4.34 (95% CI 1.54–12.20).

Discussion

Our study sought to understand differences in health information seeking in a diverse population receiving care at three NZ cardiology hospital outpatient clinic sites. These hospitals serve a high proportion of Māori and Pacific people, many of whom live in the most deprived neighbourhoods and who experience a high burden of chronic health conditions,¹³ barriers to accessing health care and for whom health services create high health literacy demands. We found that most participants had searched for online health information usually triggered after visiting a health provider and often to check side-effects of medications. Pacific respondents reported a lower likelihood of search success compared to the European reference group, and those younger than 65 years were more concerned about the quality of information than older age groups. Overall, fact sheets (80%) were the most preferred format (87% European, 74% Māori, 66% Pacific, 71% other ethnicities), followed by short videos (31%) and discussion groups (23%). The respondents were discerning in terms of which websites they would trust, with the majority (72%) agreeing that it would help if their doctor or nurse recommended where to look online for health information. Trust strategies included if the advice appeared to come from a knowledgeable source (61%), was prepared by an expert (44%), the reasoning behind the advice was explained (35%) or appeared to be impartial and independent (32%).

The proportion of people using the Internet for health information was similar to that reported in the United Kingdom (68%),¹⁴ a survey including seven European countries (71%)¹⁵ and in the United States (72%),¹⁶ and has been increasing over time.^17,18 A similar proportion to our study have used the Internet to help diagnose a health worry¹⁶ and online health seeking behaviour is reported to be higher in younger age groups.^14,19

The motivations behind seeking help online are also similar. A United Kingdom qualitative study reported four main reasons: the desire for reassurance; the desire for a second opinion to challenge other information; the desire for greater understanding to supplement other information; and perceived external barriers to accessing information through traditional sources.¹⁴

From this survey, the provision of fact sheets was the most preferred means of having information delivered with about one-third of people also interested in other formats such as video and discussion groups. There were distinct Pacific ethnic preferences for these other formats. The way information is presented can affect patients’ understanding and perception of their risk and can influence their decisions.^20,21 In NZ, ethnic differences have been found in patient preferences for communication formats with respect to cardiovascular disease (CVD) risk (eg pictures such as 100 people charts or bar graphs, numbers such as absolute risk or natural frequencies, or verbal communication from their health provider).²² Internationally, cultural variation in preference of online health information sources has also been reported.²³ A recent national survey found that Iranian people preferred presentation of health information in the form of images, educational videos and texts.¹⁸ Song et al. reported that compared to Americans, Koreans and people from Hong Kong had more trust in blogs, online support groups and social networking sites and were less likely to prefer expertise-based information sources (eg WebMD and CDC).²³ However, trust in expertise-based information sources demonstrated no cultural differences.²³

As with our study, the wish for health professional involvement in navigating online health information has also been reported in a 2017 survey of 400 Australian adults,⁴ especially given the volume of web-based health information available and inconsistency of information between sources.⁴ As treatment and side effects of medicines were the most frequent topics searched in our study, it would seem quite critical for health professionals to specifically recommend where to look up this information. Brand recognition has also been found to be important in determining trust.¹⁴ However, while brands may be trusted, Gunter et al. warned about an apparently illusory truth effect – that repetition is mistaken for accuracy – with social media repeating information with re-tweets and re-postings but often mixing fact with fiction and also not disclosing biases (eg sale of a product).²⁴

In this infodemic era, the general advice for health professionals is to find good online resources, curated content from trusted sites, and offer them as handouts or direct email links.²⁴ In addition, clinicians could post trusted information on a social media platform that works for them (eg Facebook or Twitter). Furthermore, by clicking the ‘like’ button on these trusted sites, it will increase the chance that the information will be picked up by social media algorithms.²⁴ Conversely, health professionals have been advised to not share or actively engage against ‘false information’ as this too will make bad content more likely to be picked up by algorithms. In order to support health professional and consumer online patient information needs, website tools, such as the CRAAP test (Currency, Relevance, Authority, Accuracy and Purpose) and DISCERN²⁵ have been used to evaluate the reliability and trustworthiness of health websites.²⁶ However, these take time to apply and are themselves reliant on awareness and digital literacy.

A strength of the study relates to understanding the preferences of NZ consumers attending cardiology outpatients, which are likely to represent people with one or more long term conditions needing advice and management from a cardiology specialist. A further strength is the diversity of participants, in particular the proportions of Māori and Pacific participants (16 and 12%) compared with the NZ population (16.5 and 8% in 2018). However, we were unable to further investigate the potential reasons for the differences by ethnicity and we did not collect any information on education, area deprivation or occupation, which could potentially augment these results. Furthermore, there are no data on the proportion of attendees at the outpatient clinics who declined to take part, although anecdotally the short nature of the survey aided completion. The free text responses both corroborated and added to the survey question options.

We acknowledge that this study was conducted in 2016/17 in a pre-COVID-19 era. However, we believe the findings are still relevant due to increasing use of the Internet (88% in 2012²⁷ to 93% in 2022²⁸), misinformation and concerns with the quality of online content^1,2 and need for consumer strategies to trust online content. Understanding how NZ consumers assess trustworthiness and preferences with respect to what and how information is delivered and the clarity of communication are key principles of health education resource development.²⁹ The widespread popularity of fact sheets is an important new finding overall, particularly for those of Māori and Pacific ethnicity who have a higher burden of long term conditions and have been traditionally underserved by health services. This format preference makes it particularly salient for NZ policymakers and providers of consumer health portals to include fact sheets in their offerings, as well as videos and discussion groups.

In January 2024, Te Whatu Ora launched a new consumer-facing website with limited topics and initially focussed on COVID-19 content and immunisations (www.info.health.nz). Healthify (https://healthify.nz/) provides a summary for each health topic followed by more in-depth information which may include videos, graphics, FAQs and less commonly links to discussion/online forums (only if known to be well moderated). Consumer feedback to Healthify often includes requests for NZ-based videos. A number of topic- and medicine-specific factsheets have also been created and translated into te reo and Pacific languages. Additionally, there are over 30 different languages pages of dedicated health information, including NZ Sign Language with a range of sign language videos created in collaboration with Platform Trust and DeafRadio (personal communication J Bycroft).

Conclusion

This study has described the internet and online experiences and preferences of a diverse sample of New Zealanders attending cardiology outpatients and provides a window into the extent and variation of online health information needs to support knowledge and choices regarding self-management. With the rising tide of misinformation and ‘fake news’, now more than ever before, policy makers and health portal providers need to be vigilant with respect to quality of content and consumer preferences for information formats, and health professionals need to support consumers by guiding them to NZ-appropriate trusted health information websites.

Supplementary material

Supplementary material is available online.