What is often the problem with academic research? It is led solely by researchers.
People living with the long-term effects of COVID-19 (so-called ‘long haulers’) started researching their own condition long before researchers even knew it existed. In essence, the people living with Long COVID became the experts. Long haulers have watched researchers ‘reinvent the wheel’, rediscovering basic things about Long COVID that they themselves already knew. Long haulers now feel excluded from their own narrative.
Researchers need to listen to the experts – those riding the Long COVID ‘rollercoaster’ every day – to provide truly meaningful and useful support.
In the early days of the pandemic, in the absence of professional support, long haulers started their own online support groups. They created virtual groups to reassure and support each other through sharing knowledge and validating experiences. This peer support model dates back to early civilization. It is a natural phenomenon that occurs in most communities when groups of people are going through the same difficult situation. It is a means of understanding and accepting a situation, in relation to the experience of others.
“The Hope Programme for Long COVID is a great learning resource for patients. Early intervention is the key to helping people cope”
~ Garry Loftus ~
Our research team at Coventry University has over 30 years’ experience of co-designing peer-supported self-management programmes. We work alongside people with lived experience of different health conditions. Through interviews and focus groups they tell us how best to support their specific needs, and we convert these suggestions into evidence-based self-management tools. Participants are free to choose when, how and what to engage with in the Hope Programme, effectively creating their own individual support package.
“I know the course is delivered to the many, but it feels so individual”
~ Garry Loftus ~
We have also trained thousands of peer facilitators to support the needs of people living with multiple sclerosis, cancer, cardiovascular disease and chronic pain, and for those supporting others, such as carers, healthcare professionals, and the parents of autistic children.
“Hearing about your previous courses and how you involve patients in the design process, it really made me trust the team. It’s so important.”
~ Garry Loftus ~
Hope For Long COVID
Building on our embedded co-design culture, we have taken a transformative, patient-centered approach to Long COVID research. We have a close partnership with a social enterprise company, Hope For The Community CIC, which was co-founded by four patients and Professor Andy Turner. This partnership allows us immediate access to a digital platform, enabling us to rapidly co-design and user-test prototype courses with our lived experience experts.
We have repurposed one of our courses for people with long-term conditions (The Hope Programme), co-designing the evidence-based content and activities with patients to meet the specific needs of people living with Long COVID. This creative ‘upcycling’ allowed us to launch our bespoke course in a matter of weeks without having to ‘reinvent the wheel’.
Trial and improvement
Our first group of participants have given overwhelmingly positive feedback about the benefits and usefulness of the Hope Programme for Long COVID. The course supports participants to self-manage common symptoms, such as fatigue and brain fog, and to accept new ways of living with Long COVID.
“Pacing has become my best friend. Periods of enforced rest are actually the perfect exercise, allowing my body to heal and recover. I had to learn to be kind to myself.”
~ Garry Loftus ~
Preliminary data shows encouraging psychological improvements from baseline to post-course. On average, participants reported a 16% improvement in mental wellbeing, and a 23% increase in self-efficacy – or ‘confidence to self-manage’. As we collect more data, we can begin to assess whether these are ‘clinically meaningful’ effects on participants’ health and wellbeing.
Our current trial will allow us to compare post-course changes in wellbeing in an intervention group to those from a waitlist control group. This will help us to understand if improvements in wellbeing are due to the Hope Programme for Long COVID (intervention), or if these changes would occur naturally over time (waitlist control). Maintaining open, two-way communication channels with our participants, we will continue to share ideas and make ‘tweaks’ to improve the course.
With our experience of rapid deployment of co-designed digital interventions, we are ready to respond to the constantly evolving COVID-19 symptomatology and the changing nature of patient needs.
This work has been funded by a grant from NHS Charities Together, working in conjunction with University Hospital Coventry & Warwickshire Charity.