Medical Records and Epistemic Injustice: A Women’s Health Issue Worthy of Greater Attention

Issues of ethical interest related to ‘women’s health’ abound: from the battle for reproductive rights and the promises and pitfalls of the emerging fem-tech industry to the underfunding of research into menstrual and gynecological health conditions. It is perhaps unsurprising, therefore, that the humble medical record—and its potential role in perpetuating gendered barriers to quality healthcare—has received relatively little attention.

A brief note on language: transgender men and non-binary people also access healthcare for conditions under the umbrella of ‘women’s health.’ While I use gendered language here to reflect specific socio-cultural perceptions of women and how this impacts their healthcare experience, it is vital to acknowledge that trans and non-binary patients may experience specific epistemic harms related to their social identity.

Medical Records and Epistemic Injustice

Epistemic injustice refers to the wrong done to a person in their “capacity as a knower.” In her seminal work on this concept, Fricker identifies two forms of epistemic wrong that fall under the umbrella of epistemic injustice—testimonial and hermeneutical; this blog focuses on the former.

Testimonial injustice occurs when “prejudice causes a hearer to assign a deflated level of credibility to a speaker’s testimony” (Carel and Kidd). Writing about the importance of language across clinical interactions, Cox and Fritz note that “[i]n medical documentation, doctors sometimes use language that questions the authenticity of a patient’s symptoms.” This tendency not only has the potential to tangibly undermine the quality of healthcare that the patient receives and to undermine their trust in the healthcare system (Blease, Carel, and Geraghty), but it also makes epistemic injustice more likely, as it casts doubt on the credibility of the patient’s testimony.

Consider the following example:

A woman has been experiencing severe menstrual pain for several years. Eventually, she is referred for further investigation in the form of a digital vaginal examination, blood tests, and an ultrasound. Based on these results, the doctor concludes that the pain is caused by a number of ovarian cysts, which are relatively small in size. He tells the patient that they could investigate the issue further but that this would involve exploratory surgery, and they would strongly advise against such action at this stage. The patient agrees with the doctor’s recommendation, and no surgical referral is made. The doctor records the patient as having ‘declined’ further investigation in the notes.

Recording an inaccurate account of the healthcare encounter (using the language of ‘refusal’ rather than of ‘agreement’ in the example above, for example) does not in itself amount to an instance of epistemic injustice (though one might argue it undermines other professional and ethical obligations held by a doctor). Instead, such written accounts become a vehicle for increasing doubt about the credibility of that patient’s future testimony, exacerbating the likelihood of epistemic injustice occurring during future healthcare encounters. The language used in the medical record serves to frame the patient in a particular way. This then creates the starting point for the next healthcare professional she speaks to about these symptoms, laying the foundations of mistrust in the credibility of her testimony: would the patient really have refused further investigations if her symptoms were as bad as she is saying?

How is This a Women’s Health Issue?

Of course, the potential for medical records to foster enabling conditions for epistemic injustice is not unique to those areas of healthcare connected to women’s health. It is perfectly possible, even likely, that some healthcare encounters between men and their doctors will result in medical records that do not accurately frame the patient’s decision, or that do not accord with the man’s understanding of that particular healthcare interaction. However, multiple (interconnected) factors make the issue particularly salient in the women’s health context.

Secondly, there is a growing awareness that those experiencing symptoms associated with gynecological or menstrual conditions can often face a “battle” for diagnosis and treatment. While the lack of research into women’s health and menstrual health is a significant contributory factor, so is the failure to afford sufficient weight and legitimacy to women’s accounts of their pain and other symptoms. Indeed, the two issues are interconnected; the lack of research and corresponding lack of education on and knowledge about the specific conditions/symptoms that women experience may contribute to the failure to perceive women’s accounts as credible. Therefore, women and others experiencing menstrual or gynecological disorders already face additional hurdles when attempting to get their pain (and other symptoms) taken seriously.

This issue is then compounded by the fact that when patients face such challenges to have their symptoms taken seriously, they are more likely to seek opinions from multiple doctors in an attempt to access the care they need. For example, research in the UK has suggested that it takes “appointments with around three doctors” to get a diagnosis of Polycystic Ovarian Syndrome. Similarly, many patients eventually diagnosed with endometriosis see several healthcare professionals, in various settings, before receiving their diagnosis. As well as being an exhausting and emotionally challenging situation in its own right, this also serves to bolster further the potential for inaccurate healthcare records to facilitate epistemic injustice, as it increases the likelihood that the healthcare professional’s judgment of the patient and their credibility will be informed by the notes contained within the medical record, rather than an existing relationship with that patient. In such circumstances, there is a greater opportunity within this space for medical records to play a substantial role in shaping preconceptions about a patient’s credibility.

The Path Ahead: Digital Innovations and Just Medical Records

The barriers to (quality) healthcare for women and others experiencing pain and other symptoms associated with menstrual and gynecological conditions are now receiving welcome attention. New opportunities exist in increasingly digitalized healthcare systems to develop more equitable and collaborative medical record-keeping strategies that better center patients’ voices and knowledge. Though this is perhaps not the most exciting aspect of modern healthcare innovation, it has the potential to lay the necessary groundwork for a healthcare system that is more epistemically just, within which patients can be central—and trusted—narrators of their own health and healthcare encounters and consequently are better supported in accessing the treatment they require.

The Current Events Series of Public Philosophy of the APA Blog aims to share philosophical insights about current topics of today. If you would like to contribute to this series, email rbgibson@utmb.edu or matthew.clemons@stonybrook.edu.

Anna Nelson

Anna Nelson obtained a PhD in Bioethics and Medical Jurisprudence from the University of Manchester. Her research focuses on the legal and ethical issues associated with choice in childbirth, obstetric violence, reproductive technology, and gendered experiences in healthcare.