Need for inclusivity in patient information systems: review

Patient record options available to medical practices and hospitals frequently merge sex and gender as a single, binary concept, highlights a new review published in the Journal of Medical Radiation Sciences (JMRS).

Outdated and inflexible medical information systems and such non-inclusive practices like these are harmful to transgender and gender diverse (TGD) people, threatening to disengage them from the healthcare system.

A recent Australian study found 41.3% of TGD people have avoided seeking emergency care when they needed it, largely due to fear of transphobic harassment.¹

Most studies analysed in the literature review propose recommendations to make medical information systems more inclusive. However, researchers made these recommendations without consulting TGD people. There was no evidence to suggest whether the recommendations improved TGD patient satisfaction and health outcomes.

Carolyn Heyes, President of the Australian Society of Medical Imaging and Radiation Therapy (ASMIRT) said more meaningful engagement with the TGD community is needed to ensure TGD people feel safe when seeking health care.

“First and foremost, transgender and gender diverse people must be consulted on information system improvements that affect them.”

“Care should be about the patient. Making patient information systems inclusive for transgender and gender diverse people is part of treating patients with dignity and respect,” Heyes said.

The review gave specific attention to patient information systems in radiology, and recommended the following improvements to patient data collection:

• Systems need to be able to accurately record each patient’s used name (which might be different to their legal name) and pronouns.
• Systems should record both current gender and assigned sex at birth for each patient to discriminate between the concepts of gender and sex.
• Systems should use current and appropriate terminology to avoid discrimination and support inclusivity.
   

The review was led by Professor Zhonghua Sun of Curtin University, Perth and is available free online at Journal of Medical Radiation Sciences.

^{1 Kerr, L., Fisher, C.M., Jones, T. 2019. TRANScending Discrimination in Health & Cancer Care: A Study of Trans & Gender Diverse Australians, (ARCSHS Monograph Series No. 117), Bundoora: Australian Research Centre in Sex, Health & Society, La Trobe University, https://www.latrobe.edu.au/__data/assets/pdf_file/0005/1065866/TRANScending-Discrimination-in-Health-and-Cancer-Care.pdf}

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