As promised, today’s post addresses the risk of epistemic injustices occurring as a result of the My Health Record (MHR) system. Advocates of the MHR system have argued the system will improve accuracy in treatment and record keeping; patients will have greater agency in their health care; and better patient outcomes will result. Contrarily, I argue adoption of this system has the potential to reduce patient agency and unjustly override patient testimony with respect to their wellbeing. Patients have the need, and right, to be heard and to retain control of their wellbeing.
Feminist philosopher, Miranda Fricker, coined the term epistemic injustice in her book, Epistemic Injustice: Power and the Ethics of Knowing, and she divided such injustices into two categories—testimonial injustice and hermeneutical injustice. Herein I am concerned primarily with testimonial injustice, which Fricker defines as: “a distinctively epistemic injustice, as a kind of injustice in which someone is wronged specifically in her capacity as a knower” (20). “The speaker sustains such a testimonial injustice if and only if she receives a credibility deficit owing to identity prejudice in the hearer; so the central case of testimonial injustice is [social] identity-prejudicial credibility deficit.” (28)** It is worth noting, however, hermeneutical injustice already exists in the healthcare system and is likely to be exacerbated by the MHR system, rather I am omitting it from my discussion for the sake of brevity.
MHR may increase testimonial injustice as practitioners rely less on patients’ testimony regarding their wellbeing during practitioner/patient interactions, and, instead, favour the information contained in the patient’s MHR files. Research already suggests significant epistemic injustice occurs in clinical situations, because of perceived ‘cognitive unreliability’ and ‘emotional instability’ in patients. This is likely to be compounded by reliance on information recorded in patients’ MHR, which is open to interpretation by the individual practitioner who may not understand the context and, in some cases, may lack relevant specialist knowledge. As a result practitioners may make incorrect judgments regarding the patient and their testimony’s credibility. This injustice is already present with respect to mental health care, where a phenomenon known as diagnostic overshadowing already occurs. Diagnostic overshadowing occurs when practitioners make diagnostic judgments based on their perception of a patient, in light of the patients pre-existing mental health history. Given the MHR will be accessible by a range of healthcare providers, with varying knowledge of mental illness, there is a very real potential for information recorded in a patient’s MHR to create unconscious bias in practitioner approach toward, and diagnosis of, patients. There is also a foreseeable risk of a similar bias resulting from other recorded information, particularly for marginalized groups, and patients already judged by practitioners to be less capable of giving an accurate account of their wellbeing. Where doctors have a source of information they consider to be more credible than patient testimony, it is conceivable they will default to the MHR account rather than the patient testimony; this is particularly likely where patient testimony conflicts with information recorded in the MHR data. Some may argue, individuals have control of their MHR by accessing it online, and therefore retain agency and control over the information made available to healthcare practitioners. However, as explained in my previous post, this is based on the presumption that everyone has equal access, skills, and intellectual ability to access, monitor, and control the information stored in their MHR. Marginalised and vulnerable groups such as the elderly, disabled, mentally ill, homeless, educationally-disadvantaged, and, socially and economically underprivileged, may not have these capabilities, and this will increase the likelihood of epistemic injustices being committed against them. This is a concern not only because patients have a right to be heard and (in most cases) believed regarding their wellbeing, but also because evidence suggests electronic health records are in some instances incomplete, inaccurate, and less reliable than traditional methods of accessing patient health information. One particular patient account detailed how, even in spite of a GP referral letter querying appendicitis, a patient was not believed regarding his own medical history because a previous entry in his electronic health record incorrectly stated that his appendix was removed during a prior surgery. Despite the patient assuring the ER doctors that he still had his appendix, the doctors refused to take this into account during their treatment of him as a patient—he almost died as a result.
Patients’ narrative and agency are vital to their wellbeing. Patient narratives provide context and insight into the patients’ perceptions and experience of their illness. Often patient narrative, together with their verbal account of their medical history, is likely to be more up to date, and potentially more accurate, than MHR data. However, evidence suggests practitioners with access to electronic health records (in countries where these systems already exist) have less face-time with patients, and, use of electronic health records can create additional practitioner/patient communication barriers. Any decrease in practitioner/patient communication, coupled with an increase in potential epistemic injustice, is likely to reduce the patients’ agency. There are also times when patients just need feel heard, and to have their perception of their wellbeing given due consideration. No-one doubts practitioners want the best outcomes for their patients, but when practitioners are overworked and time poor, they doubt patients’ credibility, or, patients’ testimonies are disjointed and drawn-out, practitioners may be tempted to default to the patients’ MHR rather than trusting their patient’s testimony.
There are times when a practitioner may well have good reason to assess a patient as having a credibility deficit, and, no doubt, there are times when patients are unable to convey accurate information regarding their wellbeing. In these instances, practitioners are currently forced to find other means of establishing this information, either via contacting the patient’s regular GP or speaking with family members. It is also likely, in some instances, this will delay treatment, and this is clearly not the desired outcome. I have seen numerous op-ed pieces where, having lost loved-ones due to delayed access to health information, people advocate strongly for MHR in the belief their loved-one may still be with them if the doctors could have accessed a MHR for the patient. Conversely, I have seen reports where practitioners say they wouldn’t act on, or have time to access, MHR in an emergency situation. Furthermore, research into electronic health records overseas suggests there is no improvement in patient in-hospital mortality rates. It is also very important to note, by default, it is not only emergency doctors and your GP who can access your health information, it is also accessible by allied health professionals. Of course there are instances, like the one mentioned above, where there is a critical need for time sensitive information, and every person should have the right to choose to make that available. That said, people should have the right to make an informed choice, they have the right to know the potential negative consequences, and to evaluate these carefully before choosing to opt-in if they’d prefer. They also shouldn’t be co-opted to have their information widely shared by default.
Thanks for reading thus far. I promise I will only make one more MHR post. My next post, will consider the possible long-term consequences of MHR, for the individual and the public at large. Until then…
**Fricker further divides testimonial injustice into systematic and incidental, where systematic injustice tracks the individuals it targets across many facets of their lives – economic, educational, professional, sexual, etc.