Telling patient stories while maintaining trust

Ashlan Willett put a piece of writing in their drawer that was never meant to be published. During research years at Brigham and Women’s Hospital, before they enrolled as a medical student at the Perelman School of Medicine at Penn, they worked alongside clinicians with patients who had illnesses with no cures. They hoped to make sense of one encounter in particular by writing about it at home. It wasn't for a journal or a grade, just a free writing exercise.

When they started medical school, Willett’s essay stayed in a drawer, untouched and unread, until eventually they shared it with a clinician-writer at Penn who encouraged them to publish it. Something felt off about putting it out, though, without getting the patient's explicit consent—which they couldn’t. Some speak of rocks and hard places; Willett describes it as “a place of confusion.”

Instead of abandoning the question and the very idea, they asked a deeper question, convening a panel over Zoom to try to answer it, which became the seed of a much-needed conversation in medicine that is now ongoing. Willett helped launch a collaboration among clinicians, scholars, and students at Penn and beyond, and became a co-author of a paper published in the Journal of General Internal Medicine (JGIM) earlier this year, that invites others across the field to continue collaborating on a framework for sharing stories about patients with care for ethical complexities.

From physician-writer William Osler, one of the founders of modern medicine, to neurologist and author Oliver Sacks, the patient encounter has always been a subject of witness and education, as physicians reflect and share stories that shape the practice and meaning found in the healing arts. Today, that tradition has expanded into a sprawling ecosystem—essays in prestigious journals, personal Substack publications, anecdotes on podcasts and in memoirs—driven in part by a generation of physicians processing the weight of a pandemic, and as a response to the demands of a system that allows for less and less time to feel engaged with the human part of medicine.

In many ways, this ecosystem of communication platforms is essential; they are places where clinicians can process what they witness and advocate for their patients through the power of story. But Willett and his co-authors of the JGIM paper say that parts of the media landscape that made this writing more accessible have not supplied the ethical scaffolding to match. Willett partnered with Aaron Levy, PhD, director of Health Humanities at Penn Medicine who leads the Penn Medicine Listening Lab; and with founder of the field of narrative medicine, Columbia physician-scholar Rita Charon, MD, PhD, who had recently visited the Perelman School of Medicine to deliver the annual Thorne Sparkman, Jr., MD lecture in humanism and professionalism in medicine. The trio reviewed physician-written personal narratives across 17 top clinical journals. They found a patchwork of divergent standards, vague expectations, and a persistent reliance on clinical trial consent models that were never designed for creative nonfiction.

Of the 37 total essays examined (published in 2024–2025), only nine document how the author handled consent or patient privacy. Just one journal (the JGIM itself) had a dedicated personal essays ethics checklist.

“Given the lack of clear guidelines and norms, a physician writer today is largely on their own in navigating these ethical considerations,” Levy said. He hopes the paper can help change that. It includes a synthesis of existing scholarly work about consent and ethics in clinician writing, and it opens a door for clinicians, journals, and institutions to more robustly take up the conversation.

The paper doesn't claim any easy answers and instead names where consent gets the most complicated. Examples include the patient who agrees to publication and later regrets it; the patient who dies before the final version is edited; the child who may one day object to what was written about them in childhood.

Even a fully de-identified patient might recognize themselves and still feel harmed. However, the paper also pushes back on silence being the alternative. As psychiatrist-writer Christine Montross is quoted: “Not writing the stories of my encounters with patients eliminates the most powerful opportunity I have to advocate on their behalf.”

For Charon, answers to these challenging questions can build from something foundational: the quality of attention clinicians bring to the encounter itself. “Close listening is like close reading,” she said, “where every word counts.” Not just the symptoms and therefore the potential treatment, but the tone. Why does the sentence stop in the middle? Why did that shift in how they were speaking just happen? “Close listening that gives a humility,” she continued. “It shows that, ‘I have no idea what she’s going through. Even though I know all her ICD-10 codes, I have no idea what she's going through.’”

When a clinician-storyteller acknowledges their own humility, they recognize more of the complexities involved in sharing patient stories. They can then more adequately address issues of patient confidentiality and help patients to consent or choose not to consent to publication about themselves.

One exemplar of a storytelling platform that engages thoughtfully with the ethics of patient consent is a homegrown Penn Medicine initiative—which the paper cites as a model—called the Listening Lab. Founded by Levy and housed within the University of Pennsylvania Health System, the Listening Lab produces audio and digital stories centering patients, caregivers, and clinical staff at the intersection of health and lived experience. What distinguishes the Listening Lab’s practice isn't just that consent is obtained at the start, but that consent doesn't end there.

“Even though our work is well-intentioned, it can potentially bring about harm,” Levy explained. “This possibility is something we take seriously. We have worked extensively with our colleagues in legal, privacy, and ethics, guided by a principle of non-maleficence, in thinking about how these stories are gathered, produced, and shared. Our responsibility to the storyteller goes beyond just obtaining their written consent.”

In practice, this means ongoing sensitivity reviews, stakeholder check-ins, and a willingness to hold stories, sometimes even for months, when the stakes require it. One example is Micaela Alpert, a Penn medical student and lifelong pediatric cancer patient at Children’s Hospital of Philadelphia (CHOP) who shared her story, “The World Around.”

Alpert was in the midst of her medical school application process while recording her story, so there was a real possibility that being publicly identified as a cancer patient could influence how she was perceived. When it was ready for publication, the Listening Lab still held it for over six months, and before releasing the story, re-confirmed consent to ensure the timing was right for her.

“We approach consent as an opportunity to advance communication and respect their agency. This includes being attentive to their wishes and concerns, and the potential impact and ripple effects of being vulnerable in public,” Levy explained.

Another example: The Listening Lab worked with a patient named Luci Kidd on a story about palliative care. Because she was near the end of her life, her husband was involved in the consent and recording process as a witness and collaborator. The protocol acknowledged Kidd might not be present to approve the final version, though once released, the story would become part of her legacy.

“We understood that Kidd was leaving behind a testimony at a vulnerable time in her life,” Levy explained, “and that her story could have a lasting impact on her family. We were equally committed to honoring her desire to express gratitude to her care team and benefit others positively.”

Where the next generation leads

A November 2023 virtual panel that Willett organized under the auspices of the Perelman School of Medicine’s Medical Humanities Council brought together 86 attendees, including Penn bioethicists, CHOP pediatricians, journalists, philosophers, and Charon, to grapple with exactly the kind of question that doesn't resolve itself cleanly: When a clinician wants to write about a patient, and the consent path is murky, what do they do?

The Medical Humanities Council is itself student-led—founded to integrate the humanities into the medical school experience, offering coursework in writing, theatrical technique, and journalistic critique across all years of medical training. Willett served as Executive Co-Chair for the 2023-24 academic year when the founders moved into clinical rotations.

The role of this student-led group as a driver of important conversations in medicine and ethics is a story Aaron Levy wants people to understand about Penn Medicine specifically.

“A new generation is showing us the way forward,” he said. “It’s important that we support them as they work to meaningfully impact our institution and the broader field.”

Levy also points to the collaborative nature of these discussions, across generational and other dimensions, as an important aspect of thoughtful handling of consent questions.

The JGIM paper argues that navigating the ethics of writing about patients shouldn't be a solitary exercise—that it benefits from collaboration across disciplines, institutions, and generations. Levy sees the co-authorship of the paper itself, between a senior medical student, a Penn literary scholar, and a Columbia physician leader, as proof of that very concept. It’s a model of collaboration of people from varied backgrounds of experience, together holding a shared responsibility for honoring the dignity of others.

Clinicians with questions about publishing personal essays or clinical narratives can reach out to Penn Medicine Communications or the Penn Medical Communications Research Institute for guidance. Stories for the Listening Lab can be submitted through the Listening Lab's online portal.