Why inclusive design in healthcare is so important for individuals and society

- an example of blood donation services

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Risk stratification is important in delivering effective healthcare but needs to be individualised rather than based on group characteristics

Coinciding with Pride Month, men who have sex with men are now able to donate on equal terms regardless of their gender and sexuality in a progressive change to the rules about blood donation in England, Scotland, and Wales. This is a landmark change which has delighted gay couples. All potential donors are now screened according to the same criteria, with decisions made according to their individual risk rather than their identity. Beyond increasing the pool of eligible blood donors in the UK, this example of enabling fair and equitable access demonstrates the impact of inclusive design on individuals and society.

Donated blood is used in life saving surgery, cancer treatments, and research into new therapies and is often in short supply, so broadening the donor pool whilst maintaining safety is clearly of benefit to the service and the population it serves. However, where this progressive redesign enables fair and equitable access, inclusion has a broader impact on donors and society. To gain public trust, policies must be in line with evidence, particularly within the realm of health and science (Haire, Whitford & Kaldor, 2017). However, within blood transfusion services specifically, exclusion based on gender and sexuality had become at odds with clinical evidence regarding the safety of advanced testing and risk management (Berman, 2018). The discrepancy between demonstrated safety and continued exclusion of a demographic group leads to further risk:

  • Exclusion without justification can cause those who feel discriminated against to lose trust in services and professionals. Loss of trust can lead to reduced engagement in broader health services or adherence to health advice, disadvantaging the health of individuals within these communities. For example, patients with sickle cell disease who perceived discrimination within the health service were 53% more likely to be non-adherent to their physician’s recommendations due to lack of trust in medical professionals (Haywood et al., 2014).Meanwhile those with a lack of trust for the NHS were less likely to want a Covid-19 vaccine. Exclusion can lead to poorer health outcomes for excluded individuals.
  • Societal perception, stigma, and prejudice can arise if a social or demographic group is seen to be excluded or treated differently, due to the human motivation to attribute cause. Meaning if we are similar to the person being ostracised, we are likely to attribute their exclusion to systemic failings, and if we perceive ourselves as different, we are likely to consider those excluded to be personally responsible for their treatment (Sahar, 2014Abrams et al., 2004). Exclusion can exacerbate stigma and social divides across society.

As such, inclusion is imperative to enhancing the health of individuals as well as societal cohesion. Within the blood service, the discrepancy between policy and evidence has now been addressed and the service redesigned for inclusivity. Allowing members of a historically marginalised community to participate equally facilitates trust and enhances the sense of self-efficacy and self-control, whilst challenging societal stigma  (Haire, Whitford & Kaldor, 2017). With self-efficacy and self-control fundamental attributes for engagement in health promoting behaviours such as screening attendance or uptake of exercise, inclusion has a much broader beneficial impact on individual health.

Where service design is about optimising the extent to which services are desirable for all involved, feasible to deliver, and viable long term, inclusive service design is the act of ensuring that the service designed is fit for use by all. In the example of blood transfusions, the service is now designed to promote dignity and equality for all who wish to donate, whilst maintaining some of the highest safety standards worldwide. Rather than gendered questions and an automatic dismissal, all potential donors are invited to complete the same risk-based questionnaire based on health, travel, and sexual behaviours. These changes allow an informed decision based on individualised risk rather than assumptions or blanket restrictions. If the risk is deemed too high and the potential donor must be turned away, they will be provided straightforward advice regarding when they may be able to donate, in line with other health or travel risks. The use of more sophisticated and individualised risk stratification opens many opportunities in healthcare e.g., more accurate and targeted screening for those at highest risk of an illness, and determining who could benefit most from certain preventative treatments.

The basic design of the NHS delivery system has changed little since its inception. It was designed for a very different population with different needs in an era of patriarchy. Challenging assumptions is a core feature of modern service design, and human centred design more broadly. When designing technology or non-digital services, user research and co-design are the two most effective ways of challenging assumptions early in a design process. Diverse and inclusive tech teams are key to designing inclusive tech (Capgemini Research Institute, 2021). User groups are invited to participate, provide their views, and give their feedback so that diverse experiences are included and accounted for from the outset. In the example of blood donations, the FAIR (For the Assessment of Individualised Risk) steering committee included representatives of UK blood services, Public Health England, a range of epidemiology and psychology experts, the National Aids Trust, Terrence Higgins Trust, Stonewall and other LBGT+ organisations. With each stakeholder group providing different expertise, from medical to lived experience, they collectively formed the recommendations for the changes to blood donation to be rolled out across all most of the UK.

Overall, inclusive design in healthcare services is the right thing to do in terms of ethics, equity, de-stigmatisation, empowering individuals, developing trust, and enhancing further health promoting behaviours. Any systemic difference in treatment between groups of people must be supported by evidence, and certainly should not be the result of poor design. To achieve inclusive design, the Capgemini Research Institute (2021) advocates for diverse and inclusive teams as a fundamental starting point. From here, it is important to then engage users throughout the process in research, conceptualisation and design, development, and further testing. If it really is not possible to conduct primary research with representatives of the communities being designed for, there is a wealth of high-quality secondary research available, for example the Stonewall report of lesbian, gay and bisexuals people’s experiences living in Wales. Finally, as designers of products or services for people, we must acknowledge our limitations and challenge ourselves to do better. One thought provoking tool is Idean’s ‘Cards for Humanity,’ where you are dealt you two random cards, a person and a trait and are challenged to work out how you can meet their needs and may be used to drive out assumptions and enhance inclusivity.

What are your examples of inclusive service design? Are there any services that you believe could benefit from more inclusive design? We would love to discuss the services you manage to understand how we can work with you to optimise inclusion to deliver maximum impact for your users and your organisation.

Author


Emily de Courtenay Wellum
Service Design Consultant

Emily de Courtenay Wellum is a Service Design Consultant within Digital Factory in Capgemini Invent studying Health Psychology to understand the psychological factors involved in promoting health.

 

Matthew Cooke
Chief Clinical Officer

Professor Matthew Cooke, Chief Clinical Officer at Capgemini, having spent a career as an NHS emergency medicine consultant and having been the National Clinical Director for Emergency Care in England. #EDdoUK.

 

 

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