Measuring value and real impact in child health
As a sentimentalist, I believe that my present will be continuously shaped by my past. That would then explain why, after so many years of research, I tend to define success by the number of academic publications. And it is indeed true that it is important to be able to write on a piece of paper words or numbers that might add another brick in the wall. But the question is then “which wall are we talking about?” The wall that divides patients and doctors, or the wall that brings them together under the same roof?
For many years now, we have designed and conducted studies on conditions that affect people, our patients. Then we publish these results in academic journals. We tend to believe that we have conducted a successful study when this academic journal has a high ranking and our published evidence receives a high 'impact factor'. So we use this impact factor to help us get more funding in order to design more studies that will bring more data with an even higher academic impact factor.
Indeed, some of these high impact factor reports might mean the world to our patients. But have we really tried to calculate exactly how many of these studies do not offer a single benefit in our patients’ everyday lives?
When I started working with Connecting Care for Children on a project about preschool recurrent wheeze, I honestly believed that the most important thing I could offer to these families was to somehow help their child pharmacologically to stop wheezing. And to my greatest surprise I realised how wrong I was… none of the parents I talked to really cared about having their toddler wheeze less. They actually felt their toddlers would catch viruses all the time – if it wasn’t a wheezy episode then it could be an episode of otitis, tonsillitis, or the common cold. However, they felt that it was extremely important for them to know more about the condition their child has, to be able to know how severe it can be and to be trained to judge its severity in order to avoid 'packing and unpacking' their belongings and travelling to their closest hospital. They also wished their nannies or their nursery teachers knew more about their wheezy children so that they wouldn’t panic at every whistling noise they heard and get them off work without reason. Because by solving all the above, they can have more quality time with their families and less time off work.
Personally, I am not sure whether I will be able to publish this work in a journal with a high impact factor. I am adamant though that after six years of research work in the field this is the first time I can definitely understand what it really means to live with a wheezy child. Also, I am now in a better position to design a future study that aims to answer really meaningful questions for these parents. And maybe to codesign this study together with them…
Again, I would not bet that this study will be cited from the highest impact factor journals, but it will definitely have a big impact on the lives of these people and this could then be translated in a better quality of life. What could be better than that? This should never undermine the importance of innovative approaches in science and the necessity for these to be reported, highlighted and cited. We should never forget that science has helped shape the world we live in today. However, the efforts towards improving patients’ and their families’ quality of life need to be equally celebrated. That should then make us take a step back and think: what is the real impact factor of what we are doing to improve the everyday lives of our patients? Does this really need to be a number? This is one question for Connecting Care for Children to answer in the future. Stay tuned.
