How to be a wise consumer of pulmonary fibrosis research information?

There are currently only 2 approved drugs for the treatment of pulmonary fibrosis. New treatments take time to be investigated and approved for use within standard care. Often research results are distorted with headlines that are sensationalised and provide false hope. Here we help you to understand fact from fiction.

Why do we need to be careful about what we are reading?

Pulmonary fibrosis is a devastating disease. The lack of curative treatment options and the prognosis of disease often leave people seeking out information that inspires hope for a better and brighter future. Research is something that we know can change the current situation and one day we strive towards stopping pulmonary fibrosis, which can only happen with well designed and rigorous scientific investigations. However, we are aware that caution is needed when reading about research online, particularly when it comes to sensationalised and misleading articles that are do not contain not reputable sources of information.

It is difficult to wander through the wealth of research information that is available to us. This is a guide to help you think critically about the information that you are reading, to understand more about the research and what it means for our community.

Things to consider:

Does the article headline have ground-breaking claims?

Headlines are the first part of an article that people see. They are used to grab attention and draw people into reading the main article, by using well-crafted words. More frequently we see inaccurate or misleading headlines that spread misinformation.

Bad headlines about pulmonary fibrosis research can be harmful for vulnerable people who are seeking out new treatments that offer promise of a cure. This can potentially lead to harm when it comes to decision making that affects personal health and safety about taking treatments that are not supported by rigorous science.

Caution should be taken if the headline contains the following words:

  • Breakthrough
  • Life-changing
  • Cure
  • Miracle
  • Revolutionary

Is the research within cells, animals such as mice, or humans?

We often see promising headlines about new research that could offer hope to our community. After a bit of digging, it turns out that the research has not been carried out in humans.

Before research of new treatments is tried within humans, it is often done within mice lung cells, human lung cells or animals. There are vast differences between those situations and human beings and results could be different.

Pro tips:

  • “Pre-clinical” is another way of scientists saying, “no human participants”.
  • “Murine” means that the research involves mice.

What kind of research is the study?

There are many different types of research. The gold standard, aka the bee’s knees, of research is a randomised control trial, also called RCT. This looks at different groups of people who are randomly selected to either be given the new treatment or a placebo (which looks just like the treatment, but does not contain the active drug or intervention) or is compared to standard care. This type of study design allows researchers to see the full effect of the new treatment.

An RCT is only one type of research design though. There are many more including, observational studies, cohort studies, case-control studies, meta-analyses, systematic reviews and many more, each with their own benefits and drawbacks.

Understanding the type of study design will help you to know a bit more about the significance of the study results. The same can be said for the phase of clinical trials.

How many people took part in the research study?

When it comes to research, size does matter! The larger the number of people who took part, the more reliable the results are within the studied population. Small studies are still valuable and provide information that helps to know if a potential treatment is safe and effective.

Sometimes we see headlines about research that has only taken place with a few participants, or even single patient case studies. This can lead to excitement and attention within our community that offers a misplaced sense of hope that the research could become available to the pulmonary fibrosis community very soon.  

Is the article source from a trusted source?

Always consider the source of the information for two aspects.

  1. Where are you reading about the research? Is it an NHS resource, charity such as APF, news website, lifestyle blog, social media or a website that you have never heard of? Think carefully, is the information well written, coherent, supported by references and well known for providing accurate and up to date information?
  2. Where were the research study results published? Scientific journals have their own rankings and hierarchy, also known as impact factor. Was the journal a well-respected journal and was it peer-reviewed?

Information can be published by anyone and made available at the tip of our fingertips without any regulation. It is important that we read information about research with care.

Is the research peer-reviewed?

Peer review means that the research has been scrutinised by scientists within the specialist field. This happens in different ways before it is published to the wider scientific community:

  1. The journal article is submitted and then examined by other scientists before an editor passes judgement on it.
  2. The journal article is submitted and then reviewed by a panel of experts who have a strict criterion that they use to determine if the research findings are credible.

Have other scientists repeated the results?

To be considered accurate and reliable, the results of proven research must be able to be repeated by other scientists. The results from one study may be due to chance or there could be a factor that influences the results that isn’t applicable to other people. Repeating the research helps to prove that something is effective.

Is it fake science?

Stories about pulmonary fibrosis “science” or “research” can come up on the internet and then go viral, causing inaccurate information to be shared that is not supported by scientific evidence. This can lead to a lot of fear and anxiety. This is often when there are reports of “X causing Y”, when actually what it could be is correlation – there is a relationship between the two factors, but one does not cause the other.

Take home message

Often our initial feelings aren’t wrong, we empower you to trust your gut, think critically about what you are reading and ensure that you are reading trusted information that is informed and reputable. If you have any questions about the care and treatment that you are receiving, please do speak to your healthcare team. If you are interested in taking part in research, it is important to let your healthcare team know this, and they will be able to guide you through any potential study options that you may be eligible for.

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