Endocrinology Pathways

For NHS, NES Digital Service

This project lay the foundations for developing a service patterns approach for health and care. Working on Endocrinology pathways as a concrete area to improve, it identified common steps that occur across NHS pathways and common tasks that clinicians and patients have to complete repeatedly. Working on solutions for these in the specific context of Endocrinology, could mean discovering patterns of what works well and applying those again and again as a basic template to be adapted and developed further.

I adapted the scope and activities of this project countless times to deliver meaningful outputs and allow for feasible working patterns with the challenging context of 2020 lockdowns and rapidly changing policy decisions and NHS priorities. While the project was set up to focus on clinician interviews and designing an interface for a digital product, I was able to bring the patient experience to the centre and direct the work towards transforming an end-to-end service.

Background

NHS pathways are services, and it is perfectly possible to design them to work better for patients, staff, and the organisation. However, working inside the NHS often means working with people who are not familiar with design approaches or methodologies and can be skeptical. This often includes skepticism and reluctance around working directly with any users of the service, which was the biggest challenge for this project.

To collaborate effectively, I made sure to evidence all decisions, visualise what has been found and what is proposed, and work in the open where my team and stakeholders could see and feedback on everything. I also interviewed one patient and brought their experience continuously back to become the centre of the project. This is by no means a good standard for involvement or co-design, but was a big step forward from where I started.

Step 1: Agreeing the Brief

I revised the timeline and design brief several times with stakeholders and project team to make sure everyone is agreed on where we are going and how we are getting there.

Step 2: Desk research, interviews, and digital ethnography

Initially I was mostly given access to internal documents and existing strategic plans for transforming the service through the use of a digital product. I also spoke to twelve Endocrinology consultants and two nurses across Scotland, understanding how services currently differ locally and why, and where the key issues lie. Using desk research, I was able to show how valuable a patient perspective can be, and was finally able to also interview a patient as a result. With 2020 lockdowns, involving patients got even more difficult unfortunately. So I focused on digital ethnography which meant immersing myself in online spaces Endocrinology patients hang out in.

Step 3: Current pathway mapping

I showed all findings from clinician interviews in the context of this patient experience, to highlight how current Endocrinology pathways cause issues for patients as well as clinicians. I made visible that much of the underlying problem is a service design debt - all the management and admin patients are left to deal with when using a not very well considered service, and what detrimental effects this can have on their lives, health, and wellbeing.

Bringing all findings together, I mapped a current pathway. I contacted clinicians and patient again to give feedback and confirm. Then I experimented with different ways of showing where a change could make most impact and what the underlying problems is: disjointed pathways.

Step 4: Service blueprint and UI prototypes

Moving into the proposed future service, I put together a blueprint highlighting the new patient's journey at the top but also showing what each role's workflow and involvement would look like, and including technology and data at the bottom.

To make this proposition even less difficult to imagine, I included user interface prototypes for all roles. These took the form of sketches, as more finished versions only attracted feedback on colours or buttons instead of verifying or critiquing the overall concept of the changed end-to-end service.

To evaluate and refine this service prototype, I worked with the universal barriers to access framework and continuously tested that the proposed service overall removed barriers for patients rather than introducing new or different ones.

Service Design is a teamsport

As the work developed, buy-in and critical feedback from a range of stakeholders and digital team members became more and more important. This included a growing group of clinicians, clinical data modelling, user interface design, and software engineering. While having multiple perspectives adding to a prototype always increases its quality and chance of success, it is also a challenge to bring all these perspectives together into a design direction that can actually be moved forward and that focuses on making the service better for people. Managing this remotely was especially challenging. What worked was building trust, making clear no single person has all the answers, documenting all steps and decisions, and making all work happen in the open as much as possible with digital collaboration tools.

Impact

This is where it gets interesting. This project was cancelled! Covid19 projects like vaccinations and shielding kicked off and these things took priority for the NHS. Yet this is exactly why service design in continuously evolving contexts is so important, and where it can add real value. I used Endocrinology pathways to experiment with the idea of service patterns for health. The real success was understanding and defining common steps that happen across most NHS pathways, and identifying common tasks patients and staff repeat over and over again. Most importantly, this showed that there can be common solutions to support those.

This might be a straight forward conclusion for anyone who is a service designer, but it is still rather controversial in health. The argument goes that Diabetes is different from cancer, Highlands is different from Glasgow, and every patient is completely different from the next. That is of course true and important for clinical practice. Yet looking at the NHS as a service shows there are patterns in how things are run, and redesigning these is a huge opportunity for system change and service transformation.