At thirty-one weeks pregnant, Angela was texting her blood pressure readings to her obstetrician each night before bed and going to work the next morning. She had negotiated her own early discharge from the hospital, reassured her parents there was nothing to worry about, and was mentally composing her maternity leave transition plan. She did not know she was seriously ill. “I didn’t think it was very serious,” she said, “but you know I mentioned I had these fixed spots in my vision and basically as soon as I told them that they said we are inducing you right now.”

This essay argues that Angela’s case is not primarily a story about a patient who was poorly informed. It is a story about a structural failure in collective interpretive resources—what Miranda Fricker calls hermeneutical injustice—that left Angela unable to recognize her own physiological crisis as a crisis, even as she was living inside it. That failure was not incidental. It was produced and sustained by the very practices and assumptions that organize clinical communication.

Hermeneutical injustice, in Fricker’s account, arises not from bad faith but from gaps in shared meaning-making tools. When Angela heard that her twins’ diagnostics looked fine, she concluded there was nothing to worry about. This was not irrationality; it was the application of the only interpretive frame she had available. Preeclampsia had no legible presence in her conceptual world except a single episode of a television drama. The clinical team had not been negligent—her OB, Dr. Draper, was attentive and research-literate—but the system surrounding him had communicated in a register that presupposed Angela already understood what severe preeclampsia meant for her own body, not only for her babies. She did not. “I didn’t understand the health risk it imposed to me,” she said flatly. The interpretive gap here is specific: Angela had no framework for understanding maternal risk as separable from fetal risk, and nothing in the clinical encounter had built one.

The consequences of this gap become visible in a second moment. Nurses taking her blood pressure while she lay supine told her they were not sure why she was still admitted. “We’re not sure why you’re here, you’re going to be going home.” These assessments were themselves empirically incorrect—Dr. Draper would later demonstrate that the research on preeclampsia measured blood pressure with patients sitting upright, and Angela’s readings in that posture were substantially higher. But for Angela, the nurses’ casual reassurances were not contradicted by anything she had the resources to evaluate. She heard clinical skepticism and reasonably updated toward the optimistic interpretation. What looks like denial or cognitive dissonance on Angela’s part was partly a rational response to contradictory testimony she had no tools to adjudicate.

This is where a well-designed informatics system could intervene with specificity, not just volume of information. The 21st Century Cures Act mandates that clinical notes be made available to patients through patient portals, and FHIR-based APIs now make it technically feasible to surface blood pressure trend data longitudinally alongside reference thresholds specific to gestational hypertension and postural measurement protocols. What Angela needed was not more content but a structured representation of her own trajectory—something that could have made visible the pattern Dr. Draper saw in the research literature before she reported scotomas and a delivery became urgent. A portal that rendered her serial blood pressure readings as a trend against clinically meaningful thresholds, with automated flags tied to her specific diagnosis, would have given Angela an interpretive framework rather than isolated data points. That is not a modest interface improvement. It is the difference between a system that transmits information and one that supports the formation of understanding.

The Interviews

Diagnosis of preeclampsia

Coping strategies and information seeking

Labor, delivery, and the NICU

Infants at home and reflections

Key Medical Concepts

Informatics and Epistemic Themes

Health Literacy

Health literacy is typically defined as the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Angela’s case offers a nuanced illustration: she is a vice president in finance and strategy, demonstrably capable of complex analytical reasoning, yet she describes herself as “very naive” about the physiological stakes of preeclampsia—knowing the condition only from a television drama. This gap is not a failure of general intelligence or even of information access; it is domain-specific unfamiliarity colliding with the speed of an acute clinical event. What is particularly revealing is the moment the clinical team abandoned technical framing altogether and told her directly, “there’s a chance you won’t be here for them if you don’t take this more seriously”—a translation from clinical risk language into the one register that finally reached her. This underscores a limit of health literacy as a patient-centered construct: it locates the problem in the individual’s comprehension rather than in the communicative design of clinical systems. The technical artifact most directly implicated here is patient-facing clinical documentation—After Visit Summaries and portal-delivered notes, now subject to mandatory release under the 21st Century Cures Act—which are typically written at reading levels and in terminology that presuppose domain familiarity Angela did not have; legibility and comprehension are not the same thing, and a readable document about proteinuria or corpus callosum abnormality does not automatically become an actionable one. The deeper tension is that health literacy interventions often focus on static educational materials, whereas Angela’s situation required dynamic, iterative sense-making under psychological shock—a context in which even high-literacy individuals may need calibrated, relationship-based communication rather than better-formatted handouts.

Testimonial Injustice

Miranda Fricker defines testimonial injustice as occurring when a speaker receives a deflated credibility assessment from a hearer due to identity prejudice—the hearer’s perception of the speaker’s social identity causes them to discount what the speaker says, to that speaker’s detriment. The clearest candidate moment in Angela’s transcript is not a single dramatic dismissal but a distributed pattern: multiple nurses rounding on her said, effectively, “we’re not sure why you’re here, you’re going to be going home,” treating her presentation as insufficiently urgent. The question is whether this constitutes testimonial injustice in Fricker’s precise sense—that is, whether those credibility deflations were driven by identity-based prejudice. Angela does not describe being disbelieved because of race, gender, or another socially marked identity; the nurses appear to have been responding to the misleading data artifact of blood pressures taken in the supine position, a measurement error rather than a social judgment. It would be analytically careless to label this testimonial injustice without that identity-prejudice component, and the transcript does not supply it clearly enough to make the attribution. What the case does show is something adjacent: the epistemic authority of clinical instrumentation overriding the clinician’s interpretive judgment, a phenomenon worth naming on its own terms—Dr. Draper’s intervention was precisely to correct the instrument’s context (posture during measurement) and thereby restore the signal. If Angela had been a patient from a population known to have their pain or symptom reports systematically discounted—Black women in obstetric settings, for instance—this same structural pattern would carry a testimonial injustice charge; the transcript does not give us grounds to apply it here, but it does make the structure of that injustice visible by contrast.

Hermeneutical Injustice

Fricker defines hermeneutical injustice as a structural gap in the collective interpretive resources available in a society, such that a person is unable to make intelligible—to themselves or others—a significant stretch of their own experience, where that gap results from that person’s marginalization from the practices through which shared concepts are developed. Angela’s difficulty understanding preeclampsia as a threat to her own body, rather than only to her babies, is a compelling near-miss for this concept. She had no framework for preeclampsia as a maternal danger: “I did not understand the health risk it imposed to me—the main focus, the twins during that time were fine.” This is not merely a health literacy deficit; it reflects something about how pregnancy risk is culturally and clinically narrated—as fetal-centered—such that a pregnant person may have no ready interpretive schema for their own body as the primary site of crisis. The concept of hermeneutical injustice applies most cleanly, however, when the gap disadvantages a marginalized group whose experiences have been systematically excluded from concept formation; Angela’s case is suggestive but not paradigmatic, because the fetal-centric framing of obstetric risk is a broad cultural pattern affecting most pregnant people, not specifically those marginalized from epistemic practices. What the case does illuminate is a hermeneutical gap at the intersection of obstetric culture and patient education: the available popular scripts for pregnancy risk (including what Angela absorbed from Downton Abbey) center fetal outcomes, and this shapes what pregnant people are prepared to recognize as danger. A FHIR-based clinical decision support tool triggering on maternal blood pressure thresholds—say, a CDS Hooks card surfacing at the point of care—addresses the detection problem but not the interpretive one; Angela needed a conceptual framework in which her own body’s crisis was legible as such, and that requires narrative resources no alert architecture supplies.

Patient-Clinician Communication

Patient-clinician communication, in the informatics literature, encompasses the full range of information exchange between patients and providers—verbal, written, asynchronous, and portal-mediated—with particular attention to how that exchange supports shared understanding, informed consent, and clinical decision-making. Angela’s transcript is rich with communication events that illuminate both failure and recovery: the 9 PM phone call disclosing a fetal brain abnormality, the text-message blood pressure monitoring arrangement with Dr. Draper, and the eventual plain-language reframe—”there’s a chance you won’t be here for them”—that finally shifted her behavior. The text-message arrangement is worth examining closely: it is an improvised, relationship-specific communication channel that sits entirely outside formal health IT infrastructure, yet it was the mechanism that enabled near-real-time clinical surveillance and the decision to readmit her. This improvisation reflects a genuine gap in the design of patient communication tools—asynchronous secure messaging through patient portals exists, but its workflow latency and clinical integration are often insufficient for the kind of iterative, time-sensitive monitoring Dr. Draper needed. The 21st Century Cures Act’s information blocking provisions ensure Angela can access her records, but access to records is not the same as access to a clinician’s interpretive attention; what worked here was a doctor willing to receive a text at night, which is a relational and institutional commitment no regulation or portal feature can substitute for. The tension the case surfaces is between the scalability demands of health IT design and the irreducibly particular communication needs of patients in acute, fast-moving situations—standardized communication tools are built for the average case, and Angela’s case was not average.

Information Blocking and the 21st Century Cures Act

The information blocking rule under 42 U.S.C. §300jj-52, enacted through the 21st Century Cures Act and implemented via ONC’s regulations effective 2021, prohibits healthcare actors from practices that are likely to interfere with the access, exchange, or use of electronic health information, subject to defined exceptions. The rule operationalizes this through the requirement that certified health IT support the FHIR-based patient access API, enabling patients to retrieve their data through third-party applications without clinician intermediation. Angela’s case does not present an obvious information blocking scenario—there is no moment in which her records were withheld or access obstructed—but it surfaces a subtler problem the rule was not designed to solve: the clinical information that was most consequential to her safety (the blood pressure readings, the proteinuria results, the evolving severity score) existed in real time inside clinical workflows that she had no structured access to as events unfolded. The rule ensures retrospective access to completed records, but Angela’s situation required prospective, interpretively supported access to data that was still being generated and assessed. A FHIR Observation resource representing her serial blood pressure readings could, in principle, be surfaced to her through a patient-facing app under the access API—but without the contextual knowledge that supine versus seated measurement changes the clinical meaning of those numbers, raw data access would not have changed her understanding or her decisions. The deeper limit the case exposes is that information blocking regulation addresses the supply of data but not the conditions under which data becomes meaningful to the person it concerns; those conditions are communicative, relational, and interpretive in ways that fall outside the rule’s scope.

Data Access and Patient Empowerment

Data access and patient empowerment, as a paired concept in health informatics, holds that giving patients access to their own clinical data—through portals, FHIR APIs, or direct record release—enhances their capacity to participate in their care, monitor their health, and make informed decisions. Angela’s experience offers a qualified and instructive test of this claim. She did engage in active information-seeking: she began monitoring her own blood pressure at home, she called in about her urine, and she pushed for discharge by negotiating a monitoring arrangement with her physician. In this sense, she was already functioning as an empowered patient—using self-generated data as a basis for clinical communication. But the moment that actually changed her behavior was not data access; it was a plain-language statement from her clinician that reframed the stakes in terms she could act on. The FHIR Patient and Observation resource types, and the portal access they support, could have given Angela a structured view of her trending blood pressure values and lab results—and there is a plausible argument that seeing her own data visualized over time might have accelerated her recognition of deterioration. The important caveat is that Angela was already receiving that data through the informal text-message channel and still not fully acting on it; the limiting factor was interpretive, not informational. This case suggests that data access is a necessary but insufficient condition for empowerment—what converts data into agency is an interpretive scaffold, which requires either health literacy resources calibrated to the patient’s current understanding or a clinical relationship in which someone is willing to do that translation work in real time.

Discussion Questions

  1. Angela describes learning about preeclampsia primarily through a Downton Abbey episode and her own blood pressure monitoring, while clinicians communicated urgency through procedural actions (signing waivers, wheeling her to L&D) rather than explicit explanation. Using Fricker’s distinction between testimonial and hermeneutical injustice, identify which form — or which combination — best characterizes Angela’s epistemic situation at the moment of diagnosis, and explain what work that distinction does or fails to do when the gap is not about credibility or missing concepts but about a patient who has the cognitive resources yet was never given the interpretive framework to apply them.

  2. Angela was discharged home with a protocol of texting her blood pressure nightly to Dr. Draper — an informal, clinician-dependent workaround for remote monitoring. Map this arrangement against what a FHIR-based remote patient monitoring implementation or a patient-facing CDS intervention could have provided at that moment, then identify the specific clinical and epistemic functions the informal texting relationship served that a standards-compliant technical substitute would have difficulty replicating.

  3. Angela continued working full-time, negotiated her own early discharge, and framed the twins’ stable readings as evidence that she herself was not in danger. Clinicians had objective data indicating severe preeclampsia throughout this period. Construct an argument for why this gap is not reducible to a health literacy problem, and then specify what obligation — if any — that argument places on clinical decision support design when the patient is highly educated, professionally authoritative, and actively resistant to the sick role.

  4. The 21st Century Cures Act’s information blocking provisions were designed to ensure patients like Angela have timely access to their own clinical data, including lab results and imaging findings. Given that Angela received a 9 PM phone call about her corpus callosum finding and describes the overall experience as a whirlwind she still has not fully processed, identify the precise conditions under which immediate, unmediated access to structured clinical data in a patient portal would constitute a benefit versus a harm, and explain what that tension reveals about the assumptions embedded in the information blocking framework itself.

  5. Angela occupied simultaneous subject positions — high-risk obstetric patient, VP-level professional, first-time parent, and active self-monitor — that do not map cleanly onto the personas embedded in most clinical communication systems or patient education workflows. Identify a specific point in the diagnostic or discharge process where this multiplicity created a failure that neither better data infrastructure nor better provider communication alone could have resolved, and propose what a genuinely adequate response would have required at the intersection of both.

Further Reading

1. Clinical

Magee, L.A., Pels, A., Helewa, M., Rey, E., & von Dadelszen, P. 2014. “Diagnosis, Evaluation, and Management of the Hypertensive Disorders of Pregnancy.” Pregnancy Hypertension, 4(2), 105–145. doi:10.1016/j.preghy.2014.01.003

Blencowe, H., Cousens, S., Oestergaard, M.Z., Chou, D., Moller, A.B., Narwal, R., Adler, A., Vera Garcia, C., Rohde, S., Say, L., & Lawn, J.E. 2012. “National, Regional, and Worldwide Estimates of Preterm Birth Rates in the Year 2010 with Time Trends since 1990 for Selected Countries.” The Lancet, 379(9832), 2162–2172. doi:10.1016/S0140-6736(12)60820-4

Younge, N., Goldstein, R.F., Bann, C.M., Hintz, S.R., Patel, R.M., Smith, P.B., Bell, E.F., Rysavy, M.A., Duncan, A.F., Vohr, B.R., Das, A., Goldberg, R.N., Higgins, R.D., & Carlo, W.A. 2017. “Survival and Neurodevelopmental Outcomes among Periviable Infants.” New England Journal of Medicine, 376(7), 617–628. doi:10.1056/NEJMoa1605566

Hynan, M.T., Steinberg, Z., Baker, L., Cicco, R., Geller, P.A., Lassen, S., Milford, C., Mounts, K.O., Patterson, C., Saxton, S., Segre, L., & Stuebe, A. 2015. “Recommendations for Mental Health Professionals in the NICU.” Journal of Perinatology, 35(S1), S14–S18. doi:10.1038/jp.2015.144

2. Informatics

Mandel, J.C., Kreda, D.A., Mandl, K.D., Kohane, I.S., & Ramoni, R.B. 2016. “SMART on FHIR: A Standards-Based, Interoperable Apps Platform for Electronic Health Records.” Journal of the American Medical Informatics Association, 23(5), 899–908. doi:10.1093/jamia/ocv189

Dullabh, P., Sondheimer, N., Katsh, E., & Moiduddin, A. 2014. “How Patients Can Benefit from New Federal Health Information Blocking Rules.” Health Affairs Blog, Health Affairs. https://www.healthaffairs.org/do/10.1377/hblog20140128.036675/full/ (URL unverified)

Lyles, C.R., Frueh, L., Ackerman, S., Altschuler, A., Adler-Milstein, J., Schillinger, D., & Sarkar, U. 2020. “Qualitative Study of Patient Portal Use and Satisfaction among Diverse Patients in a Safety-Net Health System.” Journal of General Internal Medicine, 35(9), 2573–2580. doi:10.1007/s11606-020-05972-0

Office of the National Coordinator for Health Information Technology. 2020. 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program: Final Rule. U.S. Department of Health and Human Services, 85 Fed. Reg. 25642. https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification

3. Philosophical

Fricker, M. 2007. Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press. doi:10.1093/acprof:oso/9780198237907.001.0001

Dotson, K. 2011. “Tracking Epistemic Violence, Tracking Practices of Silencing.” Hypatia, 26(2), 236–257. doi:10.1111/j.1527-2001.2011.01177.x

Medina, J. 2013. The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and Resistant Imaginations. Oxford University Press. doi:10.1093/acprof:oso/9780199929023.001.0001

Kidd, I.J., Medina, J., & Pohlhaus, G. (Eds.). 2017. The Routledge Handbook of Epistemic Injustice. Routledge. doi:10.4324/9781315212043

4. Anthropological / Social Science

Rapp, R. 1999. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. Routledge. doi:10.4324/9780203955215

Bridges, K.M. 2011. Reproducing Race: An Ethnography of Pregnancy as a Site of Racialization. University of California Press. https://www.ucpress.edu/book/9780520268951/reproducing-race

Anspach, R.R. 1993. Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery. University of California Press. (DOI unverified)

Davis-Floyd, R. 2003. Birth as an American Rite of Passage. 2nd ed. University of California Press. https://www.ucpress.edu/book/9780520235014/birth-as-an-american-rite-of-passage