Involving patients from the very beginning for COVID rehabilitation

We all know that in the spring of 2020 COVID placed a huge strain on health care services due to the high number of people accessing A&E services, the need for ventilation and critical care, and an increase in hospital admissions. But there was a second strain arising from the needs of those who were discharged from hospital, but who were still extremely unwell.

First, we needed to ascertain what the rehabilitation needs were for people who experienced COVID, and those with Long COVID. Through a Zoom meeting and an online questionnaire, we asked patients about their rehabilitation needs – a blog post covers more of this work. Their guidance, in addition to suggestions by intensive care specialists, were signed off by NHS England and NHS Improvement London as COVID guidance for the commissioning of clinics for recovery and rehabilitation.

Following that, an interdisciplinary team led by Professor Elizabeth Murray, Professor of eHealth and Primary Care and Clinical Director of the Institute of Healthcare Engineering at University College London, came together to use their skills to develop rehabilitation services for people who have experienced COVID. They were frontline clinicians, industry partners in digital health, academics and, critically, patients who were living with COVID and its aftermath, including long COVID.

They wanted to create a digital tool to support recovering patients. A key insight from patient and public involvement (PPI) work at this stage was realising what the key problem of long COVID was, from the patient perspective. Despite the disease being largely respiratory, what was really impacting people’s quality of life was the fatigue and brain fog. It was abundantly clear after speaking with patients that any digital support would need to focus on its impact on day-to-day life – and helping patients to manage symptoms they may not be able to outright cure. The team decided to make an app.

A patient representative, Julia Bindman, became one of the co-applicants on the Living With COVID Recovery project, which was awarded more than £780,000 to create a tool to support patients who had been discharged but were continuing to recover and rehabilitate at home. You can read more about what happened with this project at Living with Covid Recovery. It was developed by a team that includes UCL, Barts Health NHS Trust, and National Institute of Health Research (NIHR) Applied Research Collaboration (ARC) North Thames from the UCLPartners region in collaboration with NIHR ARC Wessex, University of Southampton, University of Exeter and health-tech start-up Living With.

The development of the app was driven by more PPI recruitment and consultation. Elizabeth partnered with the Biomedical Research Centres of UCLPartners to identify patients to be involved in the work, as well as accessing the expertise of the UCLPartners PPIE team, and sharing with groups set up for those with long COVID such as LongCOVIDSOS. More wide-ranging resources such as NIHR INVOLVE (now the NIHR Centre for Engagement and Dissemination) and Patients in Research were also useful to draw on.

Most of the people working on this project are very senior medical professionals. But over and over again in meetings, the question would come back to the patient representatives present: ‘What is important to you here?’

Julia Bindman

In total, 200 people gave insights into the key issues for their quality of life with this condition. Throughout the project, patients sat on the steering group, on each of the four working groups, and in a separate PPIE advisory group. Patients went through a recruitment and interview process, to confirm their eligibility to join the various groups, to match their skills. They were treated the same as other partners on the project – and led on work such as the writing of the patient-facing text within the Living With Long COVID app and the second wave of PPI recruitment.

Elizabeth and Julia explain how they approached their PPI with the idea that patients must be full members of the team:

As a PPI co-investigator, I’m an ordinary part of the team. There are specialists of so many kinds in the team and I’m just another one, along with the clinicians, the academics and the technical people

Julia Bindman

The cross-partnership working led to the development of the Living With Long COVID app. The rehabilitation tool targets primary symptoms such as fatigue, anxiety and breathing problems. It combines evidence-based methods from physiotherapists, psychologists, dieticians and respiratory physicians to create bespoke treatment plans for each patient.

Just as I respect my computer science colleagues, I respect my PPI colleagues. When there are disagreements, I ask how can we bring these viewpoints together and synthesise them – partners give and take.

Elizabeth Murray

Care City, a centre for healthy ageing innovation, research, and education that works closely with UCLPartners, supported the adoption of the app at the Barts NHS trust, and in 2021 was awarded funding to help it spread across the regions. Healthcare professionals say that using the service lets them see more patients and to give each patient better care. As of August 2021 Living With Covid Recovery is now helping over 1,200 patients with their recovery across 23 clinics in 16 NHS trusts. You can read more at the Living With Covid Recovery webpages.

A focus on the needs of patients, and of clinicians, meant that this project stayed on target, despite being co-created from scratch at a time of enormous unmet need, stress and uncertainty. The UCLPartners PPIE team supports PPI in UCLPartners research – please get in touch on ppie@uclpartners.com  if you would appreciate any help.