The power of names
Kawaldip Sehmi, IAPO's Chief Executive Officer, explores the importance of naming diseases and conditions in a patient-centred way.
What has been missed in patient-centric approaches to health systems and policy is at the very start of a patient's journey: how you name the disease or condition. What's in a name? Would a rose by any other name smell sweeter ?
Yes - if the name has a devastating impact upon the social, cultural, economic and other rights of patients. The danger is that an inaptly named disease or an ill-advised communication on a new disease can be counter productive as patients will be stigmatized (they will hide!) and/or lose their employment, education and other social welfare rights as society discriminates against them.
New naming guidelines
The new guidelines, put out recently by WHO, want to avoid this and address a specific problem in a patient and culturally sensitive manner. The WHO's press release, from 8 May, 'called on scientists, national authorities and the media to follow best practices in naming new human infectious diseases to minimize unnecessary negative effects on nations, economies and people.' Dr Keiji Fukuda, Assistant Director-General for Health Security, WHO, said:
“In recent years, several new human infectious diseases have emerged. The use of names such as ‘swine flu’ and ‘Middle East Respiratory Syndrome’ has had unintended negative impacts by stigmatizing certain communities or economic sectors.”
“This may seem like a trivial issue to some, but disease names really do matter to the people who are directly affected. We’ve seen certain disease names provoke a backlash against members of particular religious or ethnic communities, create unjustified barriers to travel, commerce and trade, and trigger needless slaughtering of food animals. This can have serious consequences for peoples’ lives and livelihoods.”
The benefits will be long term in that not only will a patient-centric naming system avoid psychosocial harm to a patient group, it will also improve research and policy makers. The release also stated the following:
'The final name of any new human disease is assigned by the International Classification of Diseases (ICD), which is managed by WHO. ICD is used by doctors, nurses, researchers, health information managers and coders, policymakers, insurers and patient organizations around the world to classify diseases and other health problems and record them in a standardized way on health records and death certificates.
This enables the storage and retrieval of diagnostic information for clinical, epidemiological and quality purposes. These records are also used by WHO Member States to compile national mortality and morbidity statistics. Finally, ICD is used for reimbursement and resource allocation decision-making by countries.'
The quotes above are taken from the WHO press release on naming new diseases, released on 8 May 2015.