Genomics England

Test ordering and tracking platform which supports the NHS in ordering Whole Genome Sequencing tests to help diagnose patients with rare diseases and cancers

Background

Genomics England is owned by the Department of Health and Social Care, partnered with the NHS to provide whole genome sequencing diagnostics.

I worked as a product designer on the test ordering and tracking squad supporting the NHS in ordering Whole Genome Sequencing (WGS) tests to help diagnose patients with rare diseases and cancers. From March 2021 to April 2022, I undertook a large research project in collaboration with a dedicated HCD researcher to map the current in-depth journey of a genomic test order from clinicians in a hospital to workers in a genomic lab to discover pain points and opportunities.

Understanding the problem

When I joined Genomics England, the existing test ordering platform had little legacy research, designs or documentation existing for me to discover why the process worked the way it did. 

However, it was known that working with a government entity like the NHS means a lot of red tape, which led to the platform not being used in the way it was intended.

The process was meant to allow clinicians to access patient information from the Test Ordering and Tracking platform to be able to order WGS tests directly from there, but at some point, it had been decided that this was too risky as any clinician who had access to the patient search could find private patient data. While indeed risky, the solution to create paper-based forms to order the tests that would then be sent to genomic labs where they would be transcribed into the platform, was a problematic one that caused an unnecessary and lengthy extra step as well as allowing the opportunity for mistakes made during transcription.

I was brought on board to uncover exactly where the issues and pain points lay to be able to provide solutions.

Research

In order to map the current in-depth journey of a genomic test order, the research needed to be divided into two sections, based on the two main user groups.

First having 1:1 interviews with the clinicians who worked in hospitals and would be the ones deciding to order a WGS test for their patient and then filling in the paper-based form.

The second and largest section of research was then going into different genomic lab hubs to perform contextual and observational interviews to be able to map out the exact processes they were following once receiving the forms and discover friction points.

Interviews with clinicians

These interviews were set up with two clinicians from every trust that is involved in WGS so we conducted ten 1:1 sessions over a video call. The main goals for these interviews using the questions in the discussion guide were to discover:

  • How much knowledge and training do clinicians have with the Test Ordering platform

  • The process they take with filling in the required forms to order a test 

  • Their levels of clinical knowledge 

  • How samples are matched with order forms and how they are tracked

  • Communication between clinicians and the staff in the Genomic Lab Hubs

  • Frustrations and issues they have when using the platform 

Findings

Whilst the process to request a WGS test had a few differences from trust to trust this was the most typical process followed and it showed that most clinicians will not even interact with the test order platform at all but rather go straight to the test order form (ToF) and a nurse will get consent via a record of discussion (RoD)

Unfortunately, while the way the process was being run was obviously flawed, the NHS is not going to be giving up paper-based forms anytime soon or at least it is going to be a very slow process as different trusts take time to adapt. So while the most obvious solution would be getting rid of forms altogether and making the test ordering process digital, as seen by the research very few clinicians are even interacting with the platform at all. However, based on the interviews with the few clinicians who were using the platform, some friction points were uncovered, that once solved, would make the platform easier to use.

With the new understanding of how the process was working from a clinician's side, our view switched towards the GLH’s to see if the solution could be found within that process.

Contextual and observational interviews in the 7 GLH’s:

While the clinician user groups were spread out over a number of trusts, visiting the genomic lab hubs was easier as there are only 7 over the whole of the UK. This meant arranging in-person visits was a simpler task which allowed us to interview the workers in the GLH’s face to face as well as watch them go through the receiving and transcription process of the test order forms. These visits happened over a number of weeks and the main things we set out to discover were:

  • The workflow of an admin within the GLH including receiving the forms and matching samples

  • Common issues with transcribing the paperwork 

  • How they communicate with the referring clinicians when there is an issue with their forms

  • Frustrations and issues they have when using the platform

  • The setup of the labs including the systems they use and office/lab setups


As well as having 1:1 sessions with the people in the labs to ask specific questions, I got to observe them as they went about their day at work in each GLH. 

GLH Visits

Personas

While each GLH worked slightly differently, I determined 3 main personas that generally covered all 7 GLHs.

Findings

These months of research just showed how much goes into a journey of a WGS test order, involving multiple departments, locations and clinical expertise. There was no easy solution here where legacy decisions, bureaucracy and red tape stand in the way. This meant thinking outside the box and figuring out what we did have the power to change.

Solutions

Finding solutions to the friction points on the Test Ordering Platform was a quick win to start hopefully improving the process, at least in a small way. Fixing the logic of the task flows within the platform, it will hopefully make the transcription process slightly smoother as it would save an admins time when starting a new test order.

The major issue is how illogical the search functionality worked. A clinical indication was made to be selected first and then only which patient this applied to, which meant if any changes were needed to be made, a user had to search again for the patient every time. This wireframe prototype is showing a fix to that flow.

With the findings that each GLH did things slightly differently and all used different LIMs, any solution needed to work for the majority. Armed with all this research and findings, it was clear the major theme in the issues with the process was human error.

While as stated earlier the most obvious solution would be to do away with paper forms, taking the test order process fully digital, therefore not leaving admins with low clinical literacy responsible for inputting genomic data they do not understand into multiple systems, this was not going to be anytime soon.

Instead, the agreed-upon solution was to implement Robotic Process Automation (RPA) which would scan the test order forms and perform the transcription instead of an admin as well as send the data directly into both the Test Order Platform and the LIMS, eliminating the double entry of data, and then tracking the progress of forms and samples removing the need for an admin to spend time doing this. This was something that could be implemented in any of the GLHS despite their differences.