Digital health literacies: maximising service-user equity in the digitised healthcare landscape 

Louise Occomore-Kent Leave a comment

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About me

I am a London-based Speech and Language Therapist (SLT). After starting my clinical career in the National Health Service (NHS) nearly 2 decades ago, I moved to City St George’s in 2017 where I am currently a Senior Lecturer and Doctoral Researcher. I teach pre- and post- registration SLTs in my clinical area of head and neck oncology and voice disorders. My research focuses on improving services for people with voice and swallowing difficulties on the suspected head and neck cancer pathway. The disparate digital health literacies skills among the population I work with presents clinical challenges, with a clear anecdotal impact on health and wellbeing outcomes based on Service Users’ (SU’s) abilities and motivations to connect with others online, access health information, and to use this information to make health decisions. In research, those with higher digital literacies skills are often those who become involved with patient and public involvement groups through their confidence to join online meetings, and their knowledge of the health system and the changes they would like to see. For SUs without smart phones, without email and without access to virtual meeting platforms, it is increasingly difficult for them to engage with research activity. I have therefore chosen this topic to explore how I might increase digital literacies skills in my client group and increase participation and equity for those with lower digital literacies skills in my research. I studied module EDM122 because open practices and digital literacies are vital to healthcare education, provision, and research, and I am passionate about all 3!

Digital Literacies

The term Digital Literacy was coined by Gilster1 almost 3 decades ago to describe a person’s ability to navigate, find, use, and evaluate information from various digital sources. Digital Literacies (DL) is now preferred, recognising the breadth of skills this encapsulates which originally included the three areas of cognitive, technical and socio-emotional as defined by Ng et al. in 20122.

More recently, the JISC Digital Capabilities Framework3  model included 6 components, with Health Education England (HEE) adapting the model (Figure 1) to 7 areas of capability4. HEE’s model was designed to support health professionals to develop their DL skills, with 4 levels in each domain so that levels of proficiency can be developed and evaluated in each.  

Figure 1: HEE Digital Literacy Capability Framework (2018). Licensed under CC-BY-NC-SA.

Digital Literacies in the context of Health Literacy

While the concept of health literacy emerged in the 1970’s5, the term has evolved alongside healthcare developments. Liu et al.6 defined health literacy as having 3 main components: knowledge of health, healthcare and health systems; processing and using information in various formats in relation to health and healthcare; and ability to maintain health through self-management and working in partnerships with health providers. Better health behaviours are more common among those with higher health literacy levels, which are associated statistically with higher education level and socio-economic status7. Bujnowska-Fedak and Węgierek (2020) found in their study that a high proportion of patients adopted healthier lifestyles based on internet health information8. They also found that patients were using the internet to make informed choices about whether or not to make an appointment to see a doctor, and to select a doctor to make an appointment with. In an exponentially digitised healthcare system, it is unsurprising that health literacies and digital literacies intersect greatly, a concept known as digital health literacy (DHL)9 – sometimes e-health literacy. Moreover, digital tools are commonly proposed as the method by which the population’s health literacy may be increased, including medication reminders and virtual support groups and information sources for certain conditions10. Ban et al., defined DHL as ‘the capacity to translate health knowledge acquired from digital environments into actions7’. Norman and Skinner’s11‘Lily model’ sought to illustrate the various DL encapsulated by DHL, or e-Health Literacy (Figure 2).

Figure 2: Norman and Skinner’s Lily Model of e-Health Literacy©. Image from Gilstad, H. (2014)12. Licensed with permission to copy for personal and academic use.

The 2020 SARS-CoV-2 pandemic necessitated and drove many digital solutions to be implemented at pace13. While it was assumed these developments would be embraced and retained post-pandemic, this has not always been reality. For example, while telemedicine became commonplace during the pandemic out of necessity, more than 70% of patients still preferred a face to face consultation post-pandemic14 in a study of more than 1000 patients. Of note, the largest age group of respondents was under 25 years old, and both recruitment and the survey itself were conducted via social media platforms and online. This is a significant limitation given that SUs without knowledge of the survey or the ability to respond, i.e. those with poor digital literacy skills, were unable to share their views regarding preferences for telemedicine or face to face care. Iyanna et al.15 identified DHL as a key barrier to health technology acceptance and implementation whereby healthcare professionals reported that patients found platforms and tools difficult to understand, hard to interact with or too complicated. Older patients, and those who speak English as an additional language experienced the most difficulty, with other studies reporting lower DHL skills in older populations16 due to a variety of factors. It is therefore conceivable that an even larger percentage of patients prefer face to face care if those without DHL skills and older adults were facilitated to participate in Moulaei et al.’s survey14.

Interventions have been trialled to increase older adults’ DHL skills17  with other studies across all age groups having also shown benefits in increasing DHL skills18. The studies used a variety of assessments and frameworks to increase DHL skills, usually in the context of a training programme that included topics such as how to locate health information on the internet, how to evaluate the trustworthiness of the source and how to avoid health scams. The training programmes used a variety of pedagogical methods including classroom based approaches, individual training, and peer learning. In addition to these skills, access to resources is vital to develop DHL skills. Internet access and hardware/ device availability, affordability and compatibility were cited as key barriers for patients in utilising digital health tools16. Other studies reported data security concerns and the need for digital healthcare tools that are more culturally sensitive and adaptable19. Negative feelings towards technology including mistrust and a perception that it is a further barrier to accessing healthcare have also been documented20. People with disabilities, lower educational level and lower housing tenure have also been found to have less access to the internet21 and are therefore less able to develop and use DHL skills. HL has been shown to improve functional and mental health outcomes for people with long term conditions such as stroke22. With HL becoming increasingly dependent on DL, it may be hypothesised that patients with higher DHL may experience better health outcomes. However, a systematic review recommended that more treatment studies should measure participants’ DHL to elucidate this23.

Digital Literacies as a Social Determinant of Health (SDoH)

SDoH are defined by the World Health Organisation as ‘non-medical factors that determine health outcomes’24. With the increasing digitisation of healthcare, DL are now integrated as a key SDoH25 with a growing ‘digital divide’ in health outcomes for SUs based on their DHL26. While advancements such as access to health information on the internet are improving the health of many SU’s, there is poor equity owing to the digital divide and digital exclusion often impacting people with mental health difficulties, women, people of colour, and those in social deprivation27. Van Kessel et al.28 assert that DL is not merely an additional SDoH but a ‘super determinant’ of health owing to the pervasive nature of digital literacies and their intersections with all other SDoH.

Informing my practice

With reference to Driscoll’s reflective model29, I have identified key learning points for my practice both in clinical care and in research.   

What?

Putting patients at the centre of their care and involving them in decisions about their health are core principles of all healthcare professions30. When conducting health research, it is best practice to involve patients as co-applicants or advisors regarding key decisions that directly impact patient care31. More recently, co-design methodologies involve SUs in designing improvements to their own services32. With the increasing digitisation of the health sector, and growing opportunity to impact services, patients’ involvement and empowerment are increasingly dependent on DHL skills.

So what?

SLTs frequently increase SUs’ DL skills to support their communication difficulties33, for example to use text to speech software, to communicate with family abroad using a virtual platform, or to use a smart phone to re-order medical equipment. However, as a head and neck cancer clinician, a disease affecting a large number of people experiencing social deprivation34, I am aware that digital disadvantage and low DHL skills lead to under-representation of many of my SU population in research35. Supporting people to participate in research or improve services through increasing their DHL skills is rarely a focus of therapy itself. Some of the most under-represented voices in our society owing to communication disability and difference may be silenced further by a lack of DHL and resources to develop these. Empowering patients in their care and improving services in response to patients’ needs necessitates DHL skills to ensure all views are represented given that many patient and public consultations are conducted online and involve reading electronic meeting minutes, grant proposals, study workplans, plain language summaries and so on. When research such as mine explores how services are being configured and adapted, often involving digital solutions to increase efficiency, it is vital that people of all DHL abilities can contribute their views on service accessibility. Some studies have shown the value of including patients in research that develops technological advancements to increase patients’ DHL whilst including them in the rapid advancement of health digitisation36.

NHS England’s Framework for inclusive digital healthcare37 includes 5 domains: access & connectivity, inclusive design, building skills and capability, belief & trust, and leadership & partnerships. Wilson et al.38 proposed 3 key recommendations towards such digital inclusion that address some of the barriers outlined earlier. Firstly, providing user-friendly tools that are easy and engaging to navigate and culturally appropriate. Secondly, provision of devices, opportunities to connect, and retaining non-digital options to maximise inclusivity. Lastly, they acknowledged the important role of support and education to facilitate SUs in interacting with and using digital health tools.

Now what?

Based on this framework and the recommendations, I feel my role provides opportunities to address many of these areas. Firstly I feel able to support and educate SUs to enhance and apply their DHL skills to augment their health outcomes through both clinical practice and research. For example, I plan to work with SUs to support their access to social media sites, virtual support groups and online fora and tools relevant to their healthcare conditions as part of their therapy. To retain non-digital options and maximise participation, I will budget in my research costings to support digital and non-digital participation options for SU group members. Costing for devices, connectivity, travel and ensuring adequate infrastructure and support for hybrid options will maximise participant diversity and facilitate under-represented voices to be heard, while increasing SUs’ DHL skills wherever possible. With regards to user-friendly tools that are easy to navigate and culturally sensitive, I will support SUs to disseminate our research findings to lay audiences on open access platforms to grow their DHL skills while increasing open access information for the public about my research. Through actively inviting people with lower DHL skills to my patient advisory group wherever possible, I will also ensure that any tools and information developed in my research are accessible to those with all levels of DHL.

In conclusion, rapid technological growth is changing how healthcare and health information are delivered and accessed. Health outcome gaps are widening as result of the digital divide, posing a significant equity issue. Clinicians and health researchers are well-placed to enhance service-users’ DHL in response to the increasingly digitised health landscape. 

References

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