Page:The Tyranny of Numbers - How e-Health Record Transparency Affects Patients’ Health Perceptions and Conversations with Physicians.pdf/3

The Tyranny of Numbers Policymakers and other prominent opinion formers commonly portray health record transparency (that is, patients' direct access to their own health records) as an effective means of challenging the paternalistic power of doctors, by empowering patients to engage with doctors as a partner, thereby ensuring a more democratic relationship (Olesch 2016; Topol 2015). Medical information about the individual that is contained in their health records has heretofore been a 'secret', conferring power on the medical professional and allowing that power to be exercised over others. Digital health record transparency promises to put an end to this secrecy. Thus, a commitment to transparency [gennemsigtighed in Danish] is being used to advocate for a shift in healthcare services in which patients' access to their own records can challenge what Foucault identified as the nexus of knowledge and power (Foucault 1980).

Today, all Danish citizens aged 15 years and above can log on to Sundhed.dk using their digital signature and social security number. There they have access to their personal health data, including paraclinical test results, X-ray reports, notes from hospital visits, vaccination records, and details of their individual prescriptions. People in Denmark, as in many places around the world, have been asked to test regularly for SARS-CoV-2, the virus that causes COVID-19, and mobility, work, education, and other elements of life are being regulated based on infection data. Danes can access individual results and aggregated COVID-19 numbers on Sundhed.dk and, as a result, the use of the digital platform has doubled since the beginning of the COVID-19 pandemic (Ritzau 2021).

Drawing on ethnographic fieldwork carried out among both patients and general practitioners (GP) in Denmark between August 2015 and August 2019, our work explores the gap between the discourse of patient empowerment and the practices relating to patients' access to e-health data. During fieldwork, we often experienced how patients, like Hanne above, consulted their GPs to discuss their worries about one or several abnormal numerical records, which they had become aware of through accessing their blood test or X-ray results on the patient portal. Often this led to patients looking up the meaning of the abnormal result online, only to find a variety of possible diseases and conditions likely to be the cause. It is indeed tempting to interpret cases like that of Hanne as testifying how health record transparency empowers patients to take co-responsibility for their health. However, by following patients like Hanne, we learned that health record transparency also serves to confuse patients' intuition about their health status by directing their attention toward the numerical standards as a more valid measure of this than how they actually feel.

Deprived of context, objective numerical measurements are nothing but numbers. Yet, to patients, numbers have an effect on how they experience the world through 3