I thought I would talk a little bit about what research is, and what it means. I think for many it is a slightly fuzzy area (it’s difficult to read, and many are unsure where to look and what to look for) and it’s easy to get caught up in the weeds. How do you know what is what? Who does the research and how is it made? Is all research created equal? All this is important because it helps you make better decisions about your health, based on trusted scientific information.
OK, let’s go. First things first. Let’s start with a definition.
Scientific Research is based on systematic methods, controlled experiments, or well-designed observational studies that aim to answer specific questions. It’s designed to minimise bias and error.
It usually involves:
- Hypothesis testing (what you think will happen).
- Data collection (using controlled and precise methods).
- Analysis (looking for patterns or statistical significance).
- Peer review (other experts evaluate the methods and conclusions).
- Publication
It takes a lot of time
From start to finish, this can take several years, depending on the length of the study. For instance, if you are trying to find out the long term outcomes of people with Covid related smell loss, let’s say three years on, you would not expect to see this in press until 2026 or later. Why? You’d have to follow a group of people (called a cohort) over three years, then evaluate them, do the analysis, put the work forward for peer review, and then wait for publication.
Here’s another point: recent federal funding cuts in the US will mean that many studies are now on hold.
Not every doctor or clinician does research
Research is usually only done in large institutions that have funding, and they are almost always universities. What about the many Covid clinics that are out there? Is the work that they do automatically turned into research? It makes sense, because after all they look at people every day, so the understanding they derive from this must be research, right?
Not quite. Research has a very narrow definition, even if people use the word all the time . So, while it is possible that the doctor you see does research, the likelihood is pretty slim — most people who see patients in an office setting don’t have time for this, though there are exceptions. Zara Patel at Stanford and Claire Hopkins are two that come to mind.
Is all published research ‘good’?
Sadly, no. Sometimes other researchers find fault in the way the work has been done (called methodology). They think that the results are invalid because an important step was omitted, for instance there is no control group. When I communicate new research to you, I take care to ensure that what I put out is as good as I can evaluate.
Where do opinions fit in?
Opinion is subjective and based on experiences. While opinions can be informed by facts, they are not verified by systematic methods, and often lack objective testing or data to support them. Opinions can be valuable, but they don’t carry the same weight clinical research. Your ENT will have seen many patients during their career, of which Covid related smell loss patients are a smaller subset. They are meeting with patients like you, but they are not making note of everything you say, and comparing that the next time you come around, and then combining all the information they have received from all the patients with smell loss, to analyse exactly what is going on (or how long they take to recover for instance). So in this respect, while they have plenty of expertise, they need to be absolutely up to date on recent publications to give you information about what the scientific research says about long term outcomes.
It’s all too easy to hear one story and assume this means that a certain intervention, or treatment, is the right thing for you. This would be drawing a conclusion from a sample size of 1, and that is universally understood to be not adequate. To get any kind of reliable evidence, I’ve been told by my researchers that you need something over 250 people in your sample to really trust the results.
If something worked for one person, why shouldn’t it work for another?
While someone’s personal experience might be valuable for understanding how something affects them, it doesn’t account for variability in others. People have different genetics, environments, lifestyles, ages and other factors that influence outcomes.
Good science needs large, representative samples to determine whether what happened to one person can be applied to a group. With only one data point (N=1), there’s no way to know if the result is due to a real effect or just a coincidence.
Does that mean individual experiences are not important? No! And I’ll give you a beautiful example. In 2019, I met food scientist Jane Parker, and told her about the things people with parosmia said in our Facebook group. I told her the foods that almost everyone complained about. A lightbulb went off in her head and she thought she knew what was happening. She then gathered about 60 people (a pilot study) and put them through a series of tests to see how they reacted to the individual odour compounds in those foods. She had a clear result, which was done using rigorous scientific method, and was published in a very high status scientific journal. In this example, we went from a lot of people’s individual experiences to a published piece of research. It was also unusual, because the original idea came from the patients themselves in the original AbScent Facebook group. That almost never happens.
This is a great YouTube short. It’s more aimed at people who have been offered to participate in a clinical trial, but also explains some of the basics. It’s about 5 minutes.
