Only research that connects with real people can make a difference


29 Dec 201655 Shares

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Medical research is essential to the furthering of humankind. Different methods can yield vastly different experiences. Dr Muiris Houston discusses the idea that interdisciplinary research and an individualistic approach might go hand in hand.

Without a doubt, my concept of what is normal has evolved with age and experience. As a callow medical student, the normal distribution curve of statistical analysis, governed by p-values, seemed a fairly rigid concept. The bottom line was that your research was either statistically significant – cue relevance and a greater chance of publication – or it was not.

But with real-world medical experience came a realisation that the range of normality was much wider than I had first believed. The border between eccentricity and mental illness is a case in point. As for physical illness, the “typical” case outlined in textbooks remains elusive.

As noted in an editorial published last year in the Canadian Medical Association Journal, “the definition of normality is never a disinterested statistical construct, but rather a reflection of those in whose image it is made”.

For me, this has sparked a particular interest in researching people’s unique experience of illness. It has led to a career in medical journalism and further academic study in the field of narrative medicine and medical humanities. And it has reinforced my belief in the vital role played by medical research in allowing people to live their lives to the maximum of their ability.

‘We need to see more interdisciplinary research, across science and the humanities, if we are to connect with patients at a deeper level’

The individual’s experience

The phrase “from bench to bedside” is a byword for modern-day medical researchers. No matter how complex the molecular biology or the genomic analysis, if the fruits of basic research are to make a difference, they must connect with individual patients.

Rather than making this easier, I wonder if – with super specialisation and the development of scientific silos – we are discouraging the cross-fertilisation of ideas and the carefree grazing across academic disciplines enjoyed by polymaths of yesteryear?

We need to see more interdisciplinary research, across science and the humanities, if we are to connect with patients at a deeper level. The medical humanities are bringing historians and literary scholars together with scientists and psychologists in collaborative teamwork. Yet the outputs of interdisciplinary research remain undervalued when it comes to publication. According to a recent report, most interdisciplinary research has a lower citation impact than single discipline publications. And funding agencies can be wary of interdisciplinary research because of a lack of capacity to evaluate projects.

For health research to make a difference, its benefits must be felt by individual patients.

In cancer research, for example, newly diagnosed patients can quickly ascertain if a clinical trial relevant to them is recruiting volunteers, and apply to join a particular study. But sometimes it takes too long for breakthroughs to filter through to the front line of day-to-day practice.

By adding up to more than the sum of its parts, interdisciplinary research can help speed up this process. More quickly moving the ‘general’ of population-based research to the ‘particular’ of the individual patient is key. An effective way of doing so is through the medium of patient stories.

Personal accounts of caring for others and of living with an illness are a powerful tool in connecting patients, their doctors and society. The discipline of narrative medicine functions as both a lens and a conduit between the science and the art of medicine.

‘Including patient narratives in scientific research immediately humanises the process. It offers a bridge from basic science to the individual patient whose illness experience we all wish to improve’

A patient-focused approach

One of the pioneers of narrative medicine, Dr Rita Charon, wrote that “a scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honour their meanings, and be moved to act on the patient’s behalf.”

I would go further and say that narrative medicine could be the lubricant that smooths the path of interdisciplinary research for healthy living. Including patient narratives in scientific research immediately humanises the process. It offers a bridge from basic science to the individual patient whose illness experience we all wish to improve.

“Illness is what a person has on the way to the doctor; disease is what they have on the way home.”

This aphorism must be challenged by researchers so that, rather than mystification, patients will experience a clearer understanding of their illness when they interact with the health system.

I believe interdisciplinary research between science and humanities has a key role to play in promoting ‘Research for a Healthy Life’.

By Muiris Houston

Dr Muiris Houston is an award-winning medical journalist and health analyst with The Irish Times, and an adjunct professor of medical humanities at the School of Medicine, Trinity College Dublin.

A version of this article originally appeared on the Irish Research Council blog.

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