The critical role of patients and the public in guiding long-term studies of COVID

In a recent correspondence published in the journal natural medicineUnited Kingdom (UK) researchers emphasized the importance of public and patient involvement (PPI) in scientific research on coronavirus disease (COVID) over time.

Response: Patient and public involvement in long-term COVID epidemiological studies in the UK. Image credit: p.ill.i / Shutterstock


In 2021, researchers from nine UK-funded epidemiological studies have come together to create the National Long COVID Research Working Group to share their findings and methodological advances.

Aside from devising ways to collaborate across studies, the larger goal of founding this group was to understand the epidemiology of COVID over time. For example, patients experience persistent symptoms after recovering from acute severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection.

Since then, support groups working among coronavirus disease 2019 (COVID-19) patients and the general public have contributed substantially to seven of these studies. They created a participant participation group dedicated to research work.

This engagement demonstrated the willingness of people to contribute to scientific research, but more importantly, it presented unique opportunities and challenges for patient and public engagement (PPI).

PPI success story

Treatment of long-term COVID (TLC) in non-hospitalized individuals is a study highlighting the success of PPIs. The patient partner of this study identified the need to develop her 90+ licensed long-term COVID (SBQ-LC) symptom burden questionnaires in 50 countries. Notably, her long-term COVID patient actively participated in the content generation of the SBQ-LC.

More importantly, the patient’s partner co-authored another study to assess the practicality and acceptability of providing community-level non-pharmacological interventions (NPIs). It can be self-managed or remotely managed.

Support groups shared their experiences and supported public participation by recruiting study participants, publishing studies, distributing questionnaires, and distributing results. In a nutshell, they provided invaluable support to people with long COVID. However, the above studies had significant limitations. They lacked participation from a diverse population. In many cases, all participants were similar in age, ethnicity, education and occupation.

As an exception, CONVALESCENCE’s long-running COVID study recruited most participants from different communities and included questions on diversity and equality in the PPI recruitment materials. The PPI team also provided extensive training to all participants to ensure they felt qualified to contribute to scientific research, even in advanced areas such as quantitative data interpretation.

Studies such as ‘Long Stays for Children and Youth’ During the COVID-19 Pandemic COVID (CLoCk) demonstrated how digital communication technology can help overcome the logistical challenges of working with public participants amid strict social distancing measures.

CLoCk’s research also found that online recruitment methods and virtual meetings help achieve greater geographic reach and diversity, including representation of people of all ethnicities and socioeconomic status from across the UK. has been proven.

Lessons learned from PPI research

The most important lesson is the need to establish a Patient Advisory Group (PAG) to provide a clear pathway for newcomers and ensure their sustainable contribution. Sourcing talent from multiple of her PPI networks instead of one helps ensure diverse participation.

It is equally important to engage all PPI members. As such, you should receive regular updates about the research projects you are participating in and be informed of their objectives. In this case, her trained PPI leader can help a lot.

Additionally, this personnel can enhance and sustain long-term COVID research projects. Nevertheless, the researcher also needs to ensure that all her PPI members are comfortable contributing to her COVID research over the long term, as she has a chronic illness in which fatigue is a major symptom.

In addition, all PPI members should be asked to contribute research based on their skill sets and interests. In addition, PPI meetings should be flexible. For example, set the duration to take into account individual needs and disabilities, if any. Research studies may have different PPI requirements. For example, some studies are more cognitively challenging.

Therefore, all PPI members should be provided with study materials and given breaks in advance as they may be tiring due to illness, sensory, visual or cognitive problems, or concerns about facing the camera. I have. Most importantly, the researcher should be aware or know how her PPI can improve the study.


Studies have shown that COVID has afflicted millions of people around the world in the last two years. However, there is a lack of understanding about its causes and effective treatments. Based on the experience of the National Long COVID Research Working Group, PPIs can offer several advantages for long-term COVID research.

Studies using PPI have yielded more robust results, increasing reliability and applicability. Therefore, future research in this area should be patient-centred.

written by

Neha Mathur

Neha is a digital marketing professional based in Gurugram, India. She completed her master’s degree in Biotechnology in 2008 from the University of Rajasthan. She has her preclinical research experience as part of her research project at the prestigious Central Pharmaceutical Research Institute (CDRI) Department of Toxicology. India. She also holds a C++ programming certification.


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