Using service design and digital to improve NHS screening for rare conditions

The challenge

Hypertrophic cardiomyopathy (HCM) is a rare genetic condition that affects the heart muscle. As it can be inherited, relatives of people who are diagnosed with HCM are usually invited for screening. This involves blood testing for specific gene variants as well as diagnostic tests such as echocardiograms.

Nationally, HCM practice falls short of standards set out by national experts and varies between centres. In Birmingham, screening is delivered across UHB’s four hospitals and the West Midlands Regional Genetics Unit. For patients, their relatives and for healthcare professionals, it can feel time consuming and inefficient, catering to the needs of the services rather than the people involved.

Background

Dr William Bradlow, a consultant cardiologist at UHB, had seen Unboxed’s service design work with NHS provider SH:24.

Dr Bradlow wanted to use the same approach to rethink the HCM service in Birmingham and the West Midlands. He knew there were opportunities to improve the service through better use of data and a more user-centred, community-based screening pathway.

With a big vision and an interest in design thinking, Dr Bradlow worked with Unboxed to access funding from the UHB Charity for an 8 week Discovery. This would allow us to explore and test his ideas, understand the technical landscape and bring together stakeholders from the key services involved in delivering HCM care.

Our approach

We wanted to understand where we could reduce complexity in the service. Screening for HCM is currently delivered across both the UHB cardiology service and the Genetics Counselling unit at the Birmingham Women’s Hospital. A community-based service would bring in a third provider - a specialist nursing team working out of primary care settings across the West Midlands. This kind of multi-service provision brings complexity where data is not shared easily, systems such as appointment booking and referrals are not integrated, and staff are used to different processes and ways of working.

Dr Bradlow’s vision was to design a service pathway around the needs of all of the people involved, including patients, their relatives, specialist nurses, administrative staff, genetics counsellors and consultants.

Immersion

From our past experience of service innovation in the NHS, we know that there are often layers of challenges to unpack before understanding what the problem is. The Unboxed team spent a day with Dr Bradlow, acting as Product Owner, to listen to his experience, map out his ideas and note the assumptions he was making about how the service could be improved.

From this, we were able to develop:

One of Dr Bradlow’s biggest frustrations was that data about HCM screening was not being routinely captured or made accessible in a way that was useful to clinical teams or researchers. His team were concerned that not enough people who could be at risk of developing HCM were being screened. It was difficult to track who was being invited for screening, their results and the subsequent outcomes for that person.

There are also other barriers to screening, from cultural perceptions around genetic testing to fear of living with a condition that can cause sudden cardiac death, but also a lack of information for patients and their families about the benefits of screening.

The UK National Screening Committee recently developed guidance on best practice in screening programmes. They highlight the importance of offering screening appointments at a time and location that is suitable to the person invited - which, for many, may be within a community setting like a GP surgery. Getting to hospital for an appointment can be difficult, costly and even frightening for many people.

We wanted to look at opportunities for shifting the HCM screening service from a hospital based service to a specialist nurse-led service based in primary care settings. A similar service exists in the West Midlands to screen for another inherited condition, familial hypercholesterolemia (FH). The FH service is part of a national transformation programme and supports the work of the Genomics Alliance to ‘mainstream’ genetic screening - moving genetic screening out of hospital units and into dedicated screening pathways for more consistent and more successful preventative care.

Primary research

We needed to test Dr Bradlow’s assumptions by bringing in the perspectives of other service users, not least patients living with HCM.

Through observation of clinical appointments, shadowing the core team and one to one interviews we were able to understand existing pain points, inefficiencies and frustrations. We started to build up different versions of the service map, imagining a new future where we could cut down on admin, capture and share data more efficiently and reduce anxiety for patients.

A technical review enabled us to map gaps in available data and understand the challenges in filling these gaps. We also found opportunities to use existing datasets to start to build and test an audit tool, using a mix of historical and ‘live’ data from a pilot.

With the support of Cardiomyopathy UK, we hosted a patient engagement workshop. This allowed us to better understand the experiences of patients at different stages of their HCM journey. They talked about the emotional and psychological effects of their diagnosis and the importance of support for their mental as well as physical health. Some patients found it hard to communicate with their consultants and valued the support of the Cardiomyopathy UK nurse in acting as an ‘interpreter’.

Stakeholder engagement

Service mapping allowed us to visualise the complexity within the service. This meant we could explore each touchpoint with different stakeholders.

Early on, we’d identified several sets of stakeholders who would be crucial to developing, implementing and delivering an improved HCM service:

Prototyping

Based on our hypotheses and insights from user research, we developed a series of digital and paper prototypes and tested these through ongoing conversations. These addressed key pain points in the service:

We presented these prototypes in the context of the proposed pathway at a Design Feedback workshop. We invited stakeholders to interact with the pathway, which we’d mapped on the wall as a series of touch points and interactions.

Creating a digitally-enabled screening pathway

Through this collaborative refinement and iteration, we were able to define a model for a community-based digital service to improve HCM screening. The proposed digital platform links the genomics laboratory, clinical genetics, and screening team. The service prioritises testing of the affected person and streamlines how this information is shared. Relatives are then invited for screening without needing a referral from primary care.

Through more convenient screening, better patient information and better use of data, more people will be screened, enabling earlier intervention for people at risk of the condition.

What we learnt

There’s always something new to learn when working in healthcare. The volume of information and complexity can be overwhelming at times. The process of working through it as a team and asking a lot of questions allowed us to really dig into the ‘why’ of the existing service at the same time as understanding the ‘how’.

Here are a few other things we learnt:

Find your ‘gatekeepers’

It’s so important to engage early with the people who could enable or block the implementation of the service. Bring them on the journey by involving them in workshops and testing. Invite their challenge and show them how you’re responding to that challenge.

Don’t reinvent the wheel

Look for exemplars - there is innovation everywhere in the NHS and you might be able to learn from or adapt something that is already being done elsewhere.

Ask, ask and ask again

One of the hardest things about this project was finding a version of the HCM pathway that could work across the different parts of the service and all the systems and processes that sit within them.

We often hear that it’s too hard to change certain processes in the NHS. But try questioning the logic behind existing processes. Once you start to unpick things, you often find that the conditions that defined those processes have changed and there is room for redefinition.

It’s crucial to do this with the people who wrangle with those processes every day - often it’s these people who have the ‘wow’ moment. That can mean asking the same questions over and over again - but it’s worth it.

Outcome

After an intensive seven week discovery and scoping phase, Unboxed supported the Cardiology team to develop a proposal and evaluation plan for a new service. With this they could apply to the British Heart Foundation to fund a pilot.

The pilot will evaluate how moving to a digital platform could make the service more accessible, in primary care settings and closer to patients. This would also free up specialist hospital staff for more complex work.

Capturing data at each step will ensure this data-driven service is simpler, faster, cheaper and more accountable, with performance metrics more accessible to researchers. For relatives with significant, treatable and before-now undetected HCM, these changes are expected to have a considerable impact.

A valuable outcome of the service design process is the collaboration of the people and teams who will be crucial to implementation and adoption when we come to pilot. By bringing them on the journey with us, we helped to build enthusiasm and motivation to unblock both technical and operational barriers to trialling the service.