In this month’s Meet the Innovator interview we speak with Román Rocha Lawrence, Director of Research and Development at ELAROS, and part-time Research Fellow at the University of Leeds, which collaboratively launched a digital platform to support specialist long COVID services through a patient-facing app and clinical web portal.
The innovation won the Outstanding Collaboration with Industry category at last year’s Innovate Awards, which celebrate innovation in health and care and are delivered by the AHSN Network in partnership with NHS Confederation.
Román tells us why long COVID services are so valuable and why perseverance and enjoying the process is key to being an innovator.
- Tell us a little bit about your innovation. The what and the why?
It has been estimated that nearly two million people in the UK have experienced long COVID symptoms, a disease that didn’t even exist until just over three years ago[i], as of January 2023 (ONS). During the Coronavirus (COVID-19) pandemic, specialist clinics had to rapidly mobilise to meet the needs of patients suffering with the condition, all whilst new research and national guidelines were emerging.
The C19-YRS digital platform was developed collaboratively between ELAROS, University of Leeds, and the Leeds Long COVID Rehab Team. It was created in the midst of the pandemic to support specialist long COVID services with the remote assessment, triage, monitoring, management, and rehabilitation of long COVID patients through a patient-facing app and clinical web portal.
The platform is centred around the COVID-19 Yorkshire Rehabilitation Scale (‘C19-YRS’); the world’s first patient-reported outcome measure (PROM) designed specifically for long COVID by clinical researchers at University of Leeds and NHS Trusts across the West Yorkshire region.
- Which AHSNs have you been supported by?
Yorkshire & Humber AHSN has supported us with spreading our innovation with clinics locally, and more widely through a national webinar between ELAROS, University of Leeds, Leeds NHS Trusts and Airedale NHS Trust.
Kent Surrey and Sussex AHSN has helped to spread our innovation with local clinics.
Eastern AHSN has provided direct procurement support to help implement the solution at Ipswich and East Suffolk ICB.
- What’s been your toughest obstacle to date then?
Services are still learning how best to support patients with long COVID and tackle the multitude of challenges this new condition has brought the NHS. Our toughest obstacle has been rapidly responding to different clients’ needs to address some of variation that exists in long COVID services, due to many factors such as funding and staffing, all whilst new research and national guidelines have been emerging, some of which we are proud to have contributed to.
- What are your hopes for the future?
We are incredibly excited for what’s in store with our national rollout of the system across Scotland, and hope that we can engage and bring on board more clinics in the United Kingdom in Northern Ireland and Wales.
We are on the cusp of internationalising our service and seeing our innovation spread more widely. We hope to see further interest from abroad and share our work globally, not just on long COVID, but other long-term conditions too as the platform has been rapidly and significantly developed with new features and other PROMs, enabling it to be used across multiple other conditions.
- What’s the best part about your job?
For me, personally, I love the diversity of my role and how every day is different, speaking to inspiring clinicians, researchers, and solving problems with our digital solutions that are continuously being developed by a growing team at ELAROS. Translating these problems into a tangible product that our staff and patient users benefit from and share their feedback is really fulfilling.
- What are your three pieces of advice for budding innovators?
- Perseverance is key. Whether it’s with regulatory hurdles or trying to find a solution around a problem, persevering with problem-solving and reaching out to your network to help you move forward is essential.
- Linked to the above, reach out to your network for support, as no one person can solve everything. You might think you have all the answers, or have enough capacity to overcome the known hurdles, but people often underestimate their workload and internal capacity to reach their goals, whereas you may already have some contacts to provide you with support (of any kind) or put you in touch with someone who can.
- Enjoy the process! It’s easy to get bogged down in the never-ending list of tasks to work on, or look up the mountain they have to climb, but once you successfully get through it, you will look back and take pride in what you’ve achieved, so it’s better that you adopt the mindset of seeing each task or perceived problem as a positive challenge to overcome. Besides, the list will never end and there will always be work to do.
7. What do service users say?
Here is my favourite recent testimonial from NHS Lanarkshire, the second Scottish Health Board to adopt the platform who shared this with us after just one month of using it:
“Lanarkshire has been so impressed with the capacity and capability the digital C19-YRS system brings to our Long COVID Rehabilitation Pathway. Since adoption, people with long COVID have their initial screening three weeks faster, on average, meaning they are triaged and added to the waiting list three weeks sooner.
Administration report a 90% reduction in time spent supporting screening. Clinicians have easy access to questionnaires and summary reports with a 50% reduction in the time taken to triage each person.
“Most importantly, our people with long COVID on the pathway are spending less time and precious energy to complete the questionnaires. They have access to their own data and can track their own progress – this supports shared decision making regarding care planning, thus really helping the pathway optimise person-centred care. People with long COVID also have easy access to evidence-based, self-management resources and information.”
Read more ELAROS testimonials on the long covid platform. Connect on LinkedIn.