Patient and public involvement within epidemiological studies of long COVID in the UK, 2023, Routen et al

Several major epidemiological studies have been funded in the UK with the goal of better understanding the epidemiology of persistent symptoms following SARS-CoV-2 infection. Investigators from nine of these studies formed the National Long COVID Research Working Group in 2021 to share key findings and methodological developments and explore ways of working across projects1.

Seven of these studies have worked substantively with diverse public and patient members and support groups, and have gone on to create participant involvement groups or panels specific to their research (Table 1). The large volume of people living with long COVID2 and the willingness of individuals and support groups to engage with these studies, as well as the barriers to operating during periods of pandemic control measures, have provided unique opportunities and challenges for patient and public involvement (PPI).

Open access, https://www.nature.com/articles/s41591-023-02251-5

 

Why is this even a paper? They're merely describing some of what they did, none of which is impressive or useful. This is not worth writing a paper, it doesn't add new knowledge and there is far better content on this topic out there, written by patients. It's very generic and simply uninteresting.

Did you know that you can easily recruit people using online questionnaires? Yes, yes you did. But somehow they think it's worth mentioning as something important they just learned.

But they have a citation in Nature, and that's all that counts, I guess. And the kicker: not a single word from patients involved. Because it's not a paper about patient engagement without that slight oversight.

Meanwhile many patients have provided a roadmap very early on. A much better roadmap than this mostly-wasted sad effort. A roadmap focusing on scientific research, that relied on decades of experience that the professionals didn't touch with a ten-foot pole.

How much did they waste on this just so they could get a good publication record? For this?

They accomplished nothing, largely because they didn't listen to a damn thing that patients said, and they still want awards for it. Now that is the biopsychosocial way: speed, quality, cost, choose none.