ROO is a digitally native healthcare service that provides accessible carrier screening for recessive genetic disorders.
Angelica Nesi
Chi Hu
Dani Reis
Nattanun Sainont
Samuel Rueesch
NHS Imperial Healthcare Trust
Make sure everyone gets the best start in life
The NHS and the UK government collectively started to promote genomics for many years. With initiatives such as "The 100'000 Genome Project" research has been supported with the end goal to propel discoveries that could help to develop better healthcare services and treatments. As genomics is such an intricate and often misunderstood field of natural sciences, NHS asked us to ideate new human-centred services that could make genomics more accessible for people. Improving accessibility to such a broad but at the same time elaborated field could take many forms. Accessibility could, for example, mean improving the availability of genetic services throughout the UK, or enhancing the awareness and literacy among the population. Opportunities to make genomics more accessible are endless, and since it is such a promising and impactful field, it was an absolute pleasure to have the chance to work on it.
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The Service in a Nutshell
ROO is a digitally native healthcare service that provides accessible carrier screening for recessive genetic disorders. The project was developed in partnership with the Imperial College Healthcare NHS Trust. Together with a diverse cohort of healthcare experts and patients, we designed a service that can provide quick, easy, and equal access to these crucial genetic tests. In accordance with our research, we focused on couples and parents-to-be as they represent the population segment that can benefit the most from carrier screening. This specific user-base coupled with the complex and delicate topic of genomics required a tactful and empathy-driven design process. This balance between creating an efficient and simultaneously empathic and user-centred service was the core challenge and objective of this project.

Research & Insights

Given the initial spark of the future possibilities of genomics in the UK, we embarked on a mission to understand not only the user’s perspectives, but also trends, systems, regulatory constraints, and financial limitations of innovating in genomics. This required 15+ number of in-depth interviews with experts, ranging from frontline staff to legal experts. Current patients with genetic disorders and prospective users have also been interviewed and prototyped with, in various forms. Understanding, envisioning, and creating a collective future for genomics with experts and patients helped us to narrow down our focus, and spot potential opportunities for improvement. It was also crucial for understanding what are the current systems and interactions we can leverage for making the service feasible and viable.

Problem Definition

Following our extensive primary and secondary research, we found several interesting insights, however, one in particular caught our eyes. As medical experts described to us, patients—in this case couples—are often advised to take a genetic test rather late in their pregnancy. However, moving the entry point of carrier screening forward—even before conception—would anticipate hard decisions that couples have to take once a baby has been already conceived. To better underline the thought process that young couples currently undergo before having a child, we conducted further interviews with young mothers. We summarized our research in a comprehensive matrix where we divided what they "think", "do", "say" and "feel". Four key actions that later in the project were used to ideate services that can nudge people to perceive screening tests not as an antenatal service, but rather as a preventive solution that gives comprehensive information to young couples so they can act accordingly.

Better Genetic Screening
After conducting several ideation sessions we combined different ideas into a service called ROO. In a nutshell, the service digitalizes the initial midwife appointment. During this first meeting, couples are usually being inquired about personal information and family background. This data helps midwives to better understand if carrier screening is needed. Our assumption is that by digitalizing the first interaction with midwives, we can incentivize and give better preconception healthcare services to a wider range of the population. The service is designed and targeted to couples that have not yet conceived a baby; therefore, we put a lot of emphasis on creating a smooth experience that basically rebrands genomics as a more approachable technology, and also enables secure data sharing with their partners. Nonetheless, we have also considered many details and risks that can arise when testing is being done digitally. As already mentioned, genomics is a sensitive topic, thus, we always tried to put the users' safety first.
The Service in Five Steps
The service can be divided into five parts. Starting with the discovery phase where users first become aware of ROO through either targeted advertisement or cross-integration with existing NHS services. After registering with ROO, young couples can respond to a comprehensive pre-screening survey on our web application. Through the automatic evaluation of the users' responses, ROO can determine if a test is needed or not. It is important to consider that responses can give inconclusive results; hence, the system has to filter out cases where further human attention might be needed. If taking a test is advised, users can order a test-kit directly to their homes. Once the test kit has arrived, the user can follow the comprehensive instructions provided in the package and re-send the probe to the laboratory. After the analysis, a notification is sent to the user with the results. If needed, further instructions to contact a healthcare professional are going to be provided.
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