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Sharing the Patient’s Voice with Health Professionals

One of the most significant changes to our health system over the past two decades is the increasing role of consumers and the community.  Consumers are now involved at some level in most areas of health care, from the design of research trials to the execution of health promotion campaigns.  Once controversial, few would now argue against the valuable contribution consumers and consumer organisations make in improving the quality, safety and efficiency of health care.  

Medical journals, however, have not typically embraced consumer and community input to the same degree and have been insulated by their academic and scientific status from the pressures exerted in other areas to increase consumer involvement. 

This is  about to change, with a major medical journal deciding that it will pro-actively seek direct contributions from consumers, along with the input it already receives from medical professionals and researchers.   

In the following piece Chris Elliot, Patrina Caldwell and David Isaacs describe the Journal of Paediatrics and Child Health decision and the reasons why encouraging consumer input will benefit the journal and its readers. They write:

 The Journal of Paediatrics and Child Health is the official child health journal of the Royal Australasian College of Physicians. For the first time in its 50-year history it is inviting submissions directly from children and parents.  The initiative aims to bring the voices of patients directly to health professionals.From a medical perspective the goal of all paediatric care is to manoeuvre children as safely as possible through the health challenges of birth and childhood to allow them to live full, meaningful lives.  Health systems measure how well they live up to this goal in different ways, almost all of them concrete; mortality, waiting times, immunization coverage, child development and patient satisfaction to name just a few.  Medical journals like the Journal of Paediatrics and Child Health allow health professionals to share research and opinion amongst themselves in a robust and essential endeavour to improve the health (or sometimes simply to reduce the illness) of patients.   

What we often miss, in the rigors of a randomised control trial or the aggregated data of patient surveys, is the voice of the individual; the experiences of illness or health which happen to a person, rather than a ‘patient’.  The ethical standards of most research insist that patients be anonymous, unidentified and unidentifiable to protect their privacy.  This is entirely appropriate for science, but leaves the human perspective difficult to communicate to a broad audience of health professionals. 

Doctors and other health professionals want to hear the voices of their patients, but there are many barriers.  In busy clinics or emergency situations it can be difficult to engage with people beyond their immediate health concerns.  Doctors themselves may find it difficult to ask the right questions.  Patients may need time to reflect on their experiences before they can share them with health professionals, and then lack an avenue to do so.

 This difficulty is even more pronounced for children. 

 Children’s voices are currently heard in medical journals through research.  Children can show a sophisticated understanding of the issues associated with their health; one study showed that children as young as 6 years old understand the importance of and are willing to help teach medical students, and wanted to be asked for their consent.  Research, however, is driven by researchers to answer their own questions.  Children and parents may have other ideas about what they would like to share with health professionals.  Remarkable teenager Adam Bojelian has published insightful poetry online about health, disability, leadership and many other topics based on his own extensive experience of health problems and the health system.

Despite decades of concern with the health and wellbeing of children, the Journal of Paediatrics and Child Health has never had an open invitation to children and their parents to submit material directly.  There are few medical journals which do.

The Journal of Paediatrics and Child Health recognises the importance of health professionals hearing the voice of children and parents. We are launching a new initiative called ‘The Patient’s Voice’, and we invite parents or children to share their thoughts or experience of any aspect of child health or illness. The best pieces will probably be something about what is good, bad or important in children’s health or healthcare, and contain a take-home message for the health professionals reading it. Submissions can be an article up to 1000 words long, a poem, or even a drawing.

If you have an idea to discuss or something you would like to submit, please email us: editor@jpchonline.com, use our publisher’s online submission portal: https://mc.manuscriptcentral.com/jpch or send it by post to our Editor-in-Chief: Prof David Isaacs, Dept of Infectious Diseases & Microbiology, Children’s Hospital at Westmead, Locked Bag 4001, Westmead NSW 2145.  We look forward to hearing from you.

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