In 2014, the UK National Health Service (NHS) ‘Five Year Forward View' plan set out key objectives to reform the NHS, which included empowering the population as a whole (particularly those with long-term health conditions) to take more responsibility for managing their own healthcare and introducing initiatives to use technology to improve services and reduce costs. The “Long Term Plan” explains how the 2014 initiatives will be further developed. This chapter presents a review of literature on digital health information and information usability. It presents the key findings from a mixed methods study that explored how people with MS (PwMS) access and use health digital information when trying to manage their MS. While the study found that there is much good quality digital health information available for PwMS, and that this facilitates shared decisions, some necessary information is still missing. The chapter concludes with recommendations for digital health information providers.
TopIntroduction
The Internet has changed the way many people around the world search for information about healthcare. Governments, healthcare providers, and agencies have been quick to move to providing a range of digital health services and resources, which continue to expand at a rapid pace. Eysenbach (2001, para. 3) offered the following definition of e-health:
e-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies.
Rapid developments since Eysenbach’s definition mean that there is now a confusing array of seemingly interchangeable terms used to describe health information that is provided on a digital platform (examples include telemedicine, digi-health, health informatics, and e-health). The increasing use of mobile devices has itself generated several new terms (such as health-app and m-health).
In this chapter, the term “digital health information” is used to refer to health information that can be accessed online or in some other electronic format.
This chapter will provide some background to multiple sclerosis (MS) and to various National Health Service (NHS) policies and initiatives, before discussing some literature on digital and health literacies and the usability of information. Finally, the chapter will present findings from a case study that explored if, and how, people with MS (PwMS) use technology to access health information and engage in shared decision making with clinicians. The chapter will conclude with recommendations for digital health information providers and suggestions for future research.
TopBackground To Multiple Sclerosis
MS is a neurological condition of the central nervous system. The name derives from the scars (sclerosis) that usually form in multiple sites of the nerves in the brain and spinal cord. It is an autoimmune disease, which means that the body’s immune system attacks itself instead of attacking germs or infections. In MS, these attacks damage myelin, which coats the nerves in the central nervous system. The damaged nerves cause a wide range of physical and cognitive symptoms in people with MS (PwMS).
There is no universally accepted theory defining the cause of MS and there is no cure for it. MS is not hereditary, contagious, or infectious. Worldwide, there are many clinical studies and trials researching potential causes of and treatments for MS.
Twice as many women have MS than men (MS Trust, 2019). The typical age of onset and diagnosis is 20-40. It is rare in children, but childhood cases have increased in recent years (perhaps due to better diagnostic technology).
There is no universal consensus on how many different types of MS there are, and neurologists continue to debate the criteria for diagnosing the different types of MS, particularly benign MS. However, the National Health Service (NHS), MS Trust, and MS Society in the UK agree that there are four types of MS: relapsing remitting (RR), secondary progressive (SP), primary progressive (PP), and benign MS.
Although there are some patterns and trends in MS and its progression, the unique and diverse course of MS for each individual means that providing relevant information and services to support PwMS can be a challenge.
MS is a long-term health condition. The life expectancy of those with MS is improving as new drugs and treatments for it are developed. This means that many people will live with MS for most of their adult lives and need different types of information to help them understand and manage their MS as it changes, they grow older, and new treatments emerge.
The MS International Federation’s (MSIF) 2013 Atlas of MS recorded that 2.3 million people around the world have been diagnosed with MS. This shows a 2.4% increase in the number of cases of MS since the previous record was published in 2008. The MSIF findings show that MS is most prevalent in North America and Europe.
The UK has one of the highest prevalence rates of MS per level of population in the world (MS Trust, 2019). Despite this prevalence, there is no mandatory NHS register for MS and no comprehensive data on the exact number of people living with MS in the UK and the types of MS that they have. The lack of accurate data has serious implications for healthcare planning and provision, policy making, and assessing the economic impact of MS in the UK. The MS Society and University of Swansea established a UK register in 2011 as part of a collaborative study. Although the data has grown since its establishment, some PwMS and clinicians are unaware of it, or prefer not to register details in it.