Inclusive Healthcare and Why It Matters
By Justin Darley | 07/04/2019
Written with contributions from Lou Shackleton and Catarina Nyberg.
In this series on inclusive and accessible healthcare, we will look at the role that design can play in creating services and digital products that people use to get access to the healthcare they need.
As the population continues to grow and live longer, and we see a continued rise in diet and lifestyle related health problems, the NHS recognises in its Digital Strategy that there is a “desperate need for health and care services to be better integrated and for people to better manage their own health and wellbeing."
This series will explore the positive and negative user experiences of health services or products. As well as focusing on the patient and carer experience, we’ll also investigate problems faced by people working in health who have to use or commission digital products in a clinical or admin setting. Our research will highlight what works well for people when they seek or are referred to use health interventions, what gets in their way, and how online services and digital products help or hinder their experience.
There’s no shortage of themes and issues to unpick and examine:
- Some people are dying earlier than they should as a result of not accessing the healthcare they need, when they need it.
- Despite their symptoms, people either delay seeking healthcare or don’t seek it at all.
- Trust is an issue for both traditional and digital services and leads to delays in seeking healthcare.
- There are differences in health outcomes relating to socioeconomic status, ethnicity, geographical region and other social factors “that may be considered unfair” [Health profile for England: 2017].
- The blame for lack of health engagement and lifestyle-related conditions does not lie solely with the patient. There are a range of factors that limit access to, or ease of obtaining, quality healthcare. Having a disability and/or mental health condition, the area you live in, how much money you have, and your age can all affect how easy or hard it is to access the healthcare you need.
- Digital change has the potential to remove barriers to care, or create new ones (and will probably do both)
- Change that involves patients taking control will transform the way patients and prospective patients access healthcare – whether through digital self-service or other means – and has the potential to remove barriers to care, create new ones, or maintain existing ones (and will probably do all three)
Who do these issues affect and why?
The list of those affected makes for uncomfortable but unsurprising reading. In short, those sectors of society already marginalized in other ways are further disadvantaged by barriers to healthcare and poor health outcomes.
People with learning disabilities have worse physical and mental health than people without a learning disability and many die prematurely from avoidable causes. Those most affected by mental illness often wait the longest for treatment and receive the worst care. In 2014, disabled adults in England were more likely than non-disabled adults to report their current health status as bad and those with long term limiting illnesses or a disability are more likely to have lower levels of health literacy.
Socioeconomic factors play a part: people living in deprived areas can expect to live shorter lives and to spend a smaller proportion of their lives in good health. Homeless people have higher rates of premature mortality and an increased prevalence of a range of infectious diseases, mental diseases and substance misuse.
The causes are, of course, many and complex but some themes do emerge:
- The healthcare journey
Several of the stages in the standard “healthcare journey” either pose challenges to patients seeking to access healthcare or “opportunities” to drop out of the journey or slip through the net. Both traditional and digital services are unnecessarily complex and difficult to use, resulting in people not seeking healthcare when they need to, and missing booked appointments once they have sought care.
- Difficulty accessing Primary Care (GP / doctor services)
In the UK, Primary Care (GP/doctor services) is a key gateway to other services and yet it is itself sometimes difficult to access. GPs are faced with an increase in both the size and complexity of their workload with many GP partners considering closing their lists to manage workload [GPs in Crisis]. At a time when funding is decreasing, the funding available tends to flow first to hospitals, limiting the funding available for primary care (as well as social and community care). Homeless people face particular challenges in accessing primary care.
- Systems designed without considering user needs
More generally, services aren’t designed with users in mind and a focus on usability and inclusive design is key for both traditional and digital services. Hard-to-use systems are avoided almost regardless of their purpose. Health services designed without usability and accessibility in mind will disproportionately affect some of the marginalized users who already face challenges. “40% of people with a learning disability reported a difficulty using health services, compared to 18% of people with no chronic health condition or impairment” [Mencap]
Integration and re-design in the NHS and the role of technology
To reduce the growth in demand for care, improve the experience of people using the system, and to simplify that system, the NHS is pursuing better integration of health and social care and seeking to redesign services. Outpatient services, for example, will be redesigned to avoid up to a third of outpatient appointments and to provide care for patients without them having to visit hospital.
In the future, the NHS will increasingly be more joined-up and coordinated in its care. “Breaking down traditional barriers between care institutions, teams and funding streams so as to support the increasing number of people with long-term health conditions, rather than viewing each encounter with the health service as a single, unconnected ‘episode’ of care” (NHS long-term plan). As part of this process, the NHS will look to break down the divide between primary and community health services.
Digital technology is starting to influence every stage of the journey, through apps, activity trackers, health tags and other wearables, the NHS website, GP appointment booking systems, electronic health records and more. In the NHS Long Term Plan, “digitally-enabled primary and outpatient care will go mainstream across the NHS.” Over the next five years, “every patient will have the right to online ‘digital GP consultations.’ “
Digital technology has great potential but is not a silver bullet. It can, in fact, create new and different problems.
“For digital interventions to be successful, the incentives for patients and staff need to be aligned, routines must not be disrupted, and the technology must save time” - Susan Michie, UCL [NHS Digital Strategy]
Digital health self-service is increasing but there are issues:
- Trust is a traditional barrier with a new flavour in this context – people are concerned about data privacy and security, and may still have low trust in healthcare providers
- There are usability problems: systems can be difficult to access and time-consuming to navigate
- Public digital health services have not, yet, reached the potential to support traditional health services effectively, nor to support the individual in managing their own health
Taking Control of Health
One of the five strands in the NHS Long-term plan is devoted to people being in control - “People will get more control over their own health and more personalised care when they need it” – this includes:
- Choice at the point of referral
- More personalised, therapeutic options
- More person-centred care
- More support for people to manage their own health
- Increasing the use of Personal Health Budgets
- Increasing social prescribing
- More choice in end of life care planning
At Sigma we’re interested in theories of behavioural change. Using behaviour frameworks, like The Behaviour Change Wheel (Michie et al, 2014 - ) and Self Determination Theory (SDT, Deci & Ryan 1985;2008) in system and service design, can help people to understand how to manage their own health and make key lifestyle changes in support of that goal. We can interpret from SDT, for example, that for people to take control of their own health, it’s important that they:
- Are genuinely able to act out of their own free will and are in control of any choices on offer. To do this they must feel that they have enough information to make decisions.
- Feel that any actions they need to take are neither too difficult nor too easy, and that there is the potential to progress.
- Feel part of a community, collaboration or social interaction.
- Feel that an action is meaningful – that it connects their values or sense of self.
Over the next few months, we’ll be looking at:
- The role that design and digital technology can play in people accessing the healthcare they need, when they need it
- Best practice examples of where traditional and digital services are working together to improve access
- How design can be used to help the health service better meet the needs of people who are currently underserved or who are not accessing the healthcare they need
- How to improve usability and accessibility in digital health