Inclusive design in health

A couple of weeks ago, our first ever Inclusive Design Lead started. It has been a long road to get to this point so here is my view of the journey that got us to where we are. It is based on a keynote I gave at the Interact conference last year. This is a journey created by many people who have shared and passed on the baton of inclusive design in our organisation. I know I’ll also have missed people who have played a role in this, as it’s a constant effort from many angles and core to the values of so many of us that work here.

The start

Inclusion and inclusive design in the NHS started with the 76-year-old NHS constitution. You can read that constitution on line and see that its first principle is ‘ The NHS provides a comprehensive service, available to all.’ It also says,

‘It is available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status… it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.’

Inclusion and an inclusive service is core to the NHS. It is the starting point for our constitution and the foundations on which the NHS is built upon. It was designed with inclusive intent. As it is our privilege to follow that legacy, everything we design, develop and deliver must have inclusivity at the core.

Sometimes when we talk about inclusion, we can slide into talking about accessibility. In the context of the work we have been doing in the area, inclusive design is an approach and accessibility is one of the (many) outcomes of that approach. They both mean that more people are able to use NHS services in times of need. When people are not included, they can’t access the things they need and in the context of health, this can lead to the most ‘riskiest risk’ — clinical risk, a risk where lives are at stake.

Exclusion is a clinical risk.

One example is descriptions and pictures of symptoms to look out for on different skin tones. A rash that appears red on white skin may not appear red on skin that’s brown or black. People whose skin tone is not represented in our content do not have the same opportunity to recognise symptoms and understand what they need to do next. People may also be caring for someone or a child of a different skin tone to their own, and therefore even less likely to be familiar with the variations. For some symptoms for example, skin turning blue, this can literally be a matter of life and death. A website may meet accessibility standards and may have been tested with users with access needs, but without pictures and descriptions of how symptoms appear on different skin tones, it isn’t inclusive. This is just one example of how inclusive design is both a clinical safety and a health inequality issue. (The solution, to be clear, isn’t as simple as just adding words on a page. We need to present these descriptions in ways that feel inclusive to the people they represent and recognise a training system that doesn’t necessarily educate clinicians in how skin symptoms may appear in non-white skin tones.)

Our start

So where did our current work on inclusive design come from? To be clear, it wasn’t me, I didn’t start it. It started during covid and with a collaboration of colleagues who got together to do something about inclusion. They saw the inequalities in health care, the disproportionate incidence of covid and the disproportionate impact of covid on certain groups.

This was work people decided to do on top of their already high workload, because of their belief in the need for change. There were lots of aspects to their work, from researching and co-designing with communities who face the most barriers to accessing healthcare, to increasing the diversity of our teams and inclusive recruitment practice.

One part of this work was inclusive design and developing a microsite for a knowledge bank of everything they knew and were learning about how to do this well. This was side of desk work. This didn’t come from senior management. It wasn’t funded or sponsored. The push from this group influenced the organisation to spend money on a small independent look at inclusion in our product delivery and where we needed to do better.

This work provided evidence of blockers to inclusion work, including the observation that the people doing inclusion work tended to be user centred design folk and in roles with relatively less power. There were many recommendations but one of the most important was to pay people to work on it and have a senior fully funded role. We needed to put our money where our mouth was and show inclusion work was valued. Senior members of the organisation also needed to use their power and amplify the voice of those already doing this work.

This work was being done by a collective who had managed to get some budget to get an independent view on our work, but now what? I looked around me. There was no one responsible for this, no one accountable for this work, no senior sponsor, no one amplifying voices. I hadn’t been part of the collective, but I was part of the leadership team of the portfolios that those involved in the collective worked within. I have some lived experience of exclusion, but I also have a lot of power and privilege, including my role as a leader within this influential organisation.

If not me, then who?

I am not an expert in inclusion, in fact it’s impossible to know everything in this space, so I would hope that anyone who is well informed about inclusion is not likely to claim to know it all. But what I did was just do something. I decided to do what I could to drive inclusive design forward. I used my role in the organisation to get senior management support, the people and the work seen at senior levels, funding and approval to get the recommendations into practice with a phase 2.

This next phase delivered a number of things including a roadmap for implementing inclusive design, based on the needs of the organisation. It included as its number one priority the recruitment of a dedicated Inclusive Design Lead. Just at the point this work delivered its output, a perfectly timed merger, restructure and therefore (quite rightly) a recruitment freeze was announced within the organisation. This obviously scuppered the Inclusive Design Lead recruitment. There was again no one with a dedicated paid role to lead this work, continue the momentum and take it forward. I again looked around me. Still no one. So we worked out where we could beg and borrow someone or some budget to do something.

Our work had shown that we needed an agreed definition of inclusive design and what that looked like in practice. We needed something to point to to say this is what we mean, this is what we need to do. Often inclusive design doesn’t happen because we just don’t know how to put it into practice, or how to integrate it into delivery or may believe it is too hard or will slow things down. Something that practically described the how, could help break down some of those barriers so this is what we focussed on in our next piece of work.

This delivered the definition and principles that Ellen and Sam talk about here https://digital.nhs.uk/blog/design-matters/2023/what-is-inclusive-design#:~:text=%E2%80%9CInclusive%20design%20is%20an%20approach,their%20background%20or%20life%20experience.%E2%80%9D.

We also worked with colleagues across the organisation to ensure it was included in the inclusive digital healthcare framework for the NHS https://www.england.nhs.uk/long-read/inclusive-digital-healthcare-a-framework-for-nhs-action-on-digital-inclusion/

So, what is next?

We’ve shared the definition and principles and are evaluating how they are being used. We want to test their use wider than our internal teams and there is the rest of the roadmap we developed that needs to be delivered. We have recruited our first ever Inclusive Design Lead, Max, a full-time paid senior position leading inclusive design and accessibility. What comes next is us handing the baton to Max to lead and drive this work. I won’t stop advocating, amplifying voices, or doing what I can to push for inclusion in everything that we do though.

Thoughts from the journey

One of the things that we know is that guidance and standards are one thing, how you implement and apply them is another. The practical reality for people on the ground doing work in inclusive design is that you constantly have to push against all other delivery pressures. We also need to ensure psychologically safe environments for this work to happen.

Paul Cilliers said, ‘Diversity is not a problem to be solved, it is the precondition for the existence of any interesting behaviour’. Perhaps it could also be said ‘Inclusion isn’t a problem to be solved, it is the precondition for the existence of any service’. In order to actually deliver outcomes, we need to ensure that what we deliver does not exclude. This is incredibly important in the context of health.

And my final thought is, we need to stop saying if only we had this, we could do it, or we need to have this to be able to do it.

Just do something.

There is never going to be a perfect situation of budget, mandate, senior support etc etc.

This isn’t someone else’s job or responsibility. It is mine, it is yours, it is ours. It can only happen if each and every one of us understands that.