When the answers are not what you want to hear

When the answers from health research are not what you want to hear – How do you make sense of them?

Negative reactions, disagreement with the findings or disengaging with the research team will not make the results of a clinical trial change or disappear.  But I have experienced all those responses when sharing results. Which has prompted me to reflect on how research results are received by others.  

Long held beliefs are hard to shake off.  Even more so when time or money (or both) have been invested in them.  Research findings may not always match those beliefs.  Health research must be meaningful, and that must mean the outcomes are important to people.  So, there is a lot riding on the results.

Is the headline a true reflection?
We all may hear what we want to hear.  Avoid reacting to the headline without digging into the detail.  Therein lies unwarranted consequences.

Was the right question asked in the right way?
If the result does not chime with your expectation, was the research framed in the right way?  And if not, what could have been done to make that better?

Have all the results been shared?
Different aspects of the research might give a bread-crumb trail to the full picture and an indication that the answer is balanced. All bits of the puzzle can help individuals to make better informed treatment decisions.

It’s also worth remembering – a clinical study that finds something doesn’t work can be just as important as one that shows that it does work. “Negative” results can help people to avoid wasting time and money on ineffective treatments.  Even inconclusive results add to the evidence base and give researchers greater understanding. And of course, each question answered usually prompts new questions.

Group or individual
Importantly, clinical study results reflect how a group is impacted by something, not an individual. Even when something is found to make a difference as a whole to those with a condition, it doesn’t mean that everyone in the trial improved – nor that whatever is found will work for all. Trial results help patients and healthcare professionals make decisions on what would be a good thing to try.

An example of this might be breast feeding evidence for reducing the chance of atopy (asthma, eczema, allergy or hay fever) in the child.   When I mention this, I usually get someone tell me it did not help their child.  Same in my case (I breastfed both children and they still had atopy). But we don’t know how much worse it might have been otherwise.

There are so many factors which might affect eczema.

Written by Amanda Roberts, Patient Representative and Co-Lead Rapid Eczema Trials Project.

Originally published at blogs.nottingham.ac.uk

Online resources to help understand research results:

How do you know if research evidence is trustworthy – Versus Arthritis article looking at research and how you can make sense of it.

Plain English glossary of terms used in statistical methodology research – NIHR Leicester Biomedical Research Centre

Critical appraisal of Clinical Trials (free online course) – From the University of Nottingham