MND Australia

What does buying a new car have to do with learning about MND?

We all make decisions every day. Some decisions require very little thought, while others need to be well-informed and we need to seek information or advice to help us make the best decision for us. We all like to think that we make important decisions based upon the best information and advice available, but is this really the case? Sometimes wading through the pros and cons around a decision is not so simple, particularly when the critical information is perhaps not as clear-cut as it might have first appeared.

Let’s consider an example. Buying a new car is one of the biggest purchases you might make. Cars are a significant financial investment and we tend to keep our car for several years so choosing the right one is important. There are a lot of different variables to consider before taking the step and making a purchase. Which make and model to buy? Will the car suit my needs, and for how long? Is the car likely to be reliable or might it cost a lot to maintain?

Where can you find reliable, unbiased information to help you make a decision? Friends and colleagues might offer advice but this might be influenced by their own experiences rather than facts (so called anecdotal evidence). You could ask the car dealer your burning questions, but can you trust their views when they have a vested interest in selling you a car. Perhaps you could go online for customer reviews, but how do you know which reviews are reliable? Have the writers been paid by car manufacturers? Does the reviewer really know what they are talking about?

At the end of the day, finding a reliable and trustworthy source of information is not easy – but not just about cars.

So how does this relate to MND? 

The spreading of false or inaccurate information, and a lack of understanding about how to find credible information, can have significant consequences for people living with MND and their loved ones. Misleading information can lead to poor decisions about medical care, risk of harm from unproven treatments, wasting valuable time and money on procedures that don't work, and creating a false sense of hope.

In this piece, we look at what critical thinking means and how to apply it so you can recognise when you are dealing with misinformation, how critical thinking can support people living with MND and their loved ones to build skills for finding the information they need. We also discuss where to get more support when looking for information about clinical trials and new treatments for MND.

Why is this important?

There is an unprecedented number (over 80) of new treatments for MND currently being tested in clinical trials around the world. This means the MND community is presented with a barrage of information around the results of these trials and it can be very difficult to ascertain what is important and relevant to those living with MND.

Sensationalist news media stories and press releases, or even journal articles about results of clinical trials or new treatments might emphasize the benefits while glossing over other important, less positive details within the study. This creates a mismatch between perceived and real benefits to the general public.1

Online platforms and social media have become an increasingly popular source of health information, but can also be a source of misunderstanding and misinformation.2,3 News and stories are shared amongst the community via social media very quickly and public commentary can contribute to a “bandwagon” effect4 which is not always driven by facts. By now we are all aware of the impact of this, having seen the media reporting of the COVID-19 pandemic and how rapidly media news can propagate whether accurate or not. This often led to conflicting information, creating confusion and at times, also mistrust and fear.5 

So how do we make sense of it all?

Critical thinking and health literacy

With the plethora of information from so many sources coming at us all the time it is imperative that we apply some critical appraisal to what we read; this includes information about new clinical trials, research results or approved medications. There is often information overload and that includes people sharing their own opinions, experiences, perspectives and beliefs.6 It is important to be aware of which sources are trustworthy and reliable and how to put the information to the test – just like you would if you were buying a new car!

Critical reasoning or evaluation is an important part of online health literacy.7 Health literacy is the ability to access, read and comprehend information about your health. For people with MND this means sifting through all the information that is presented to us online, on the news and from other people and working out what it means for us. Health literacy helps us make sense of health information and to be confident in our decision-making around health and treatments.8

There are several factors to consider when evaluating health information online but perhaps the most important is trustworthiness. Consider the source of the information – is it a reliable source? Ask yourself, “can I trust this information?”

Some of the questions you may ask include:

Is the source reliable? 
At MND in Australia, we have our own rigorous processes when assessing information. We only share information that has been carefully checked and reviewed. MND Australia, your state association or a member of your healthcare team are motivated to improve the lives of people living with MND and are reliable and trustworthy sources. Other sources of information may have different motivations or a vested interest in the product they are promoting. This might influence the information they provide or the way they present that information.

Has this information been published in a peer-reviewed journal?
Peer review means that others within the scientific community, with no conflict of interest, have reviewed and appraised the research. This often means papers are sent back to researchers and scientists to clarify aspects of the research, such as the methods used to obtain the results. This process involves considerable time and scrutiny before results are finally published. Peer-reviewed information could be considered more trustworthy and reliable than a company press release, for example. Company press releases are circulated by the company who might present their results in a favourable light, while downplaying any concerns or issues with the product.

Assuming the source of information is trustworthy and reliable, how do you then interpret the information? You might want to know things like:

What is the stage of the clinical trial?
Most clinical trials are conducted in phases, where a new product is tested on a small number of participants to determine the effectiveness and safety of the product and monitor for adverse effects. If all goes well, the product will move through later phases of testing to collect more information on larger numbers of participants. Typically, a product will require phase I, II and III clinical trials before being approved. Phase IV clinical trials may also continue after a product has been marketed.9

What are the statistically significant results?
Statistically significant results are results observed in clinical trials that the scientists are confident are not due to chance, and that there is a strong likelihood that the product has resulted in the positive effect.10

How were outcomes measured and what might that mean for me?
The safety and effectiveness of clinical trials are measured by outcomes. These are sometimes referred to as endpoints and are usually related to the benefit to or effect on the patient.11 These endpoints may include measures such as survival or health-related quality of life, or laboratory measures like biomarkers. Biomarkers are things that can be seen on a blood tests or scan. 

Learn more about biomarkers and MND

Finally, you need to decipher whether the information is relevant and has value for you. Some therapies for example, need to be commenced at a specific stage of disease. Others might only be suitable for a certain group of patients or those with a specific type, or classification, of motor neurone disease. Some products may only be approved or available in specific locations.

To determine relevance and value, you might ask:

  • Is it available in Australia?
  • Is it suitable only for a specific groups of patients e.g. gene therapies?
  • Will it interfere with other treatments I am taking or trials I am participating in? 

Where can I get more help with decision making about clinical trials?

Developing your health literacy and critical thinking around clinical trials and scientific research is important, but before taking the next step it is advisable to get professional input. Speaking to your neurologist or GP is a great first step as they know you and your personal circumstances, as well as how those things align with the clinical trials available. Your MND clinic health professionals or State Association support person can discuss the information and your options, or point you in the direction of someone who can.

Negotiating and making sense of the vast array of information on scientific research and clinical trials is not easy, but it is important and achievable by increasing your health literacy and applying a critical lens.

Considering the source of information, specific details of the product and stage of development, trustworthiness, reliability, relevance and value are a good start in determining how the results apply to you. Your neurologist and other members of your healthcare team can help you further.

More information