Digital Narrative Medicine » Emanuela Valente

‘Pushed into humanity’: can learning about storytelling make better doctors?

Emanuela Valente — Thu, 15 Jun 2023 07:59:06 +0000

Narrative medicine encourages doctors to engage more deeply with patients by listening to their stories
The Melbourne general practitioner Mariam Tokhi knows exactly what her friend and colleague the senior paediatric emergency physician Fiona Reilly means when she speaks of her “back pocket full of ghosts”.
Reilly is talking about those haunting memories all medical doctors harbour about their interactions with patients who are sometimes labelled “difficult” or for whom things didn’t go as they should or could have. Some survived, perhaps even flourished. Others died.
Doctors tend to evade their ghosts due to their onerous memorial weight, the expectation of stoicism freighted upon them amid the inhumane demands of the medical profession. But Reilly and Tokhi have a different strategy.
They write about these patients, and their shared experiences with them, as practitioners and now teachers in the University of Melbourne course on narrative medicine. Narrative medicine is a practice new to Australia whereby doctors are encouraged, through writing, to ethically engage far more deeply with their patients’ stories.
At its core, narrative medicine aims to build greater doctor-patient empathy. By listening to and observing patients more acutely, physicians get to understand how story – experience – impacts patients diagnostically and therapeutically. Not least, narrative medicine also nurtures doctors’ creative lives, all too often suppressed by their profession’s punishing demands and overwhelming traditional emphasis on biomedicine and checklists.

Narrative Medicine Writing Saved My Sanity

Emanuela Valente — Wed, 10 May 2023 07:00:11 +0000

Storytelling saved my sanity during the coronavirus pandemic. The lockdown afforded me time to write and share stories about my life and career. I wasn’t writing my memoir as much as I was engaged in the practice of narrative medicine writing — stories about the meaning of illness and opportunities to reflect on the vastness and depth of human experience in the healthcare setting. After I began telling my stories, I discovered the field of narrative medicine has been around since the turn of the century.

Rita Charon, MD, PhD, is widely credited for originating the field of narrative medicine. She inaugurated and teaches in the Master of Science in Narrative Medicine graduate program at Columbia University, where she received her PhD degree in English following her medical degree from Harvard. Charon is also co-author of Principles and Practice of Narrative Medicine and other scholarly works. In her seminal article on narrative medicine, published in the Journal of the American Medical Associationopens in a new tab or window in 2001, Charon wrote: “The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others.”

Tell Your Patient Story: Michael Vitez video interview

Emanuela Valente — Thu, 02 Mar 2023 03:35:38 +0000

Being a patient makes you the lead character in your health journey. If you have a rare or serious condition, your story might have started decades ago or maybe you’re coping with a brand-new diagnosis. Either way, you have something to say about your lived experience. That’s why we asked Pulitzer-Prize winning journalist Michael Vitez to record this short video that walks you through a seven-minute writing exercise. It’s a no-pressure way to see what happens when you put pen to paper or your fingers to the keyboard.

As a journalist, Vitez spent a lot of time at the bedside, writing about people who were seriously ill. He then went on to create the Narrative Medicine program at the Lewis Katz School of Medicine at Temple University in Philadelphia. Today, he helps doctors in training appreciate the human side of medicine and celebrate stories as an essential element in the doctor-patient relationship.

Watch the video

The mission of Erika Nelson

Emanuela Valente — Wed, 15 Feb 2023 17:42:04 +0000

Narrative medicine, which encourages patients and families to share stories about their experience with illness or death, may seem like an unlikely path for someone whose career has focused mostly on German language and literature. Erika Nelson, associate professor of German Studies, came to the field from her own life experience: the loss of her late husband, Neil, in 2019, after a nine-year battle with cancer.

“Talking about death and dying teaches us what life is,” said Nelson, who also directs the Gender, Sexuality and Women’s Studies program. “Even with my husband’s passing, there were so many beautiful things. I had the great fortune to care for someone else and really fight for their life. And I learned so much about grief … as the world went into mourning for COVID, I was there too.”

She has incorporated narrative medicine and her own experiences into her courses at Union, both first-year inquiries and Minerva courses. “I find that the response from students is really moving,” she said. “Students often thank me and they’ll share more openly about people in their own lives. So many of our students have been touched by death in one way or another.”

She studied narrative medicine at Columbia University with Rita Charon, who pioneered the field that encourages health care professionals to ask questions about the patient’s situation, not just those on the medical chart.

“It’s a different approach to use the skills of active listening, close observation, and crafting meaning from one’s experience to better treat and work with them for the best care possible,” Nelson said. “These are transferrable skills. No matter what field you’re in, this approach is really helpful.

“It’s my own mission to help improve the health care experience in whatever way I can.”

Narrative medicine, narrative practice, and the creation of meaning

Emanuela Valente — Thu, 09 Feb 2023 07:56:25 +0000

Medical interest in the study of narratives, whether those of patients or doctors, goes back a long way. However, the field of narrative medicine emerged in the late 20th century and is associated in many people’s minds with two seminal texts. One was Narrative Based Medicine: Dialogue and Discourse in Clinical Practice, a collection of essays edited by two British academic general practitioners, Trisha Greenhalgh and Brian Hurwitz. The other was Narrative Medicine: Honoring the Stories of Illness by the US physician and literary scholar Rita Charon. In the years since then, the field has diversified considerably, but there is a consensus among its teachers and practitioners that narrative is central to medicine, requiring attunement to narratives told by patients and clinicians and competence in engaging with them.

Keep reading

Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study

Emanuela Valente — Fri, 18 Feb 2022 08:26:02 +0000

Guidelines for the implementation of narrative medicine in clinical practice exist; however, in Italy, no standard methodology is currently available for the management of oncological patients. Since 2017, at the “Regina Elena” National Cancer Institute, studies using “digital narrative diaries” (DNMLAB platform) have been carried out; this article focuses on a pilot, uncontrolled, real-life study aiming to evaluate the utility of DNM integrated with the care pathway of patients with bone and limb soft tissue sarcomas.

Adult patients completed the diary during treatment or follow-up by writing their narrative guided by a set of narrative prompts. The endpoints were: (a) patients’ opinions about therapeutic alliance, awareness, and coping ability; (b) healthcare professionals’ (HCPs’) opinions about communication, therapeutic alliance, and information collection. Open- and closed-ended questions (Likert score: 1-5) were used to assess the items. The preliminary results supported the need to integrate patients’ narratives with clinical data and encourage further research.

Narrative medicine: feasibility of a digital narrative diary application in oncology

Emanuela Valente — Sun, 13 Feb 2022 08:24:41 +0000

A preliminary, open, uncontrolled, real-life study in the oncology and radiotherapy departments of Istituto di Ricovero e Cura a Carattere Scientifico National Cancer Institute Regina Elena, Rome, (Italy), recruiting adult Italian-speaking patients who then completed the DNM diary from the start of treatment, showed that the use of the DNM in oncology patients assisted clinicians with understanding their patients experience. The results published on Journal of International Medical Research

Understanding the causes of a patient’s doubts and fears may help clinicians to provide more detailed explanations, psychological advice, or to be more attentive to scheduling to improve patients’ awareness, empowerment, and treatment adherence. However, for this, appropriate interaction with each patient is needed. If adequately oriented, narrative medicine may help to improve personal relationships, therapeutic alliance, and promote adherence to treatment while fostering the professional growth of clinicians. This approach may provide clinicians with a deeper knowledge of the patient and help them to obtain information that is difficult for patients to communicate during chemo- or radiotherapy sessions and follow-up visits.

Approximately 30 years ago, narrative medicine was first described as a new approach to improving the patient–clinician relationship. Kleinman introduced the use of narratives as a tool to collect and interpret information on the patient’s experience of illness, not only to enrich knowledge about their physical and psychological condition but also to formulate a correct diagnosis. Narratives may have therapeutic potential and may be applied in a way that provides health care professionals with information that can be used for diagnosis or the personalization of treatment. Although the Italian Istituto Superiore di Sanità published recommendations in 2014 for the implementation of narrative medicine in the management of rare and chronic degenerative diseases, no standard method is currently available in Italy for the management of oncology patients.

A specific digital platform has been developed to obtain guided narratives from patients during chemotherapy or radiotherapy for solid tumors. The tool was designed to obtain information about barriers to treatment adherence and to facilitate the relationship between health care professionals and patients. Herein, we report a preliminary study aimed to evaluate the feasibility, practicability, and self-assessed utility of the digital narrative medicine approach from the perspective of both patients and health care professionals.

How Digital Health is Opening Up Communication Between Doctors & Patients

Emanuela Valente — Wed, 30 Mar 2016 09:57:09 +0000

Nothing is more important between a doctor and a patient than communication. The more you communicate, the healthier people get and the more knowledgeable doctors become. Without open lines of communication, important details can be missed, patients might put off appointments for too long and trust can’t be built.

Articolo condiviso da HIT Consultant

Cloud-based patient relationship management (PRM) systems are one of the latest ways for offices and clinics to keep the lines of communication open. This new digital health technology is providing avenues for two-way communication that makes discussions between doctors and patients easier to initiate, monitor and document.

Easier for Patients to Share Feedback

Today, online reviews help people make informed decisions about everything from what products to buy to which doctor to visit. A recent survey from BrightLight shows that 88 percent of people now trust online reviews as much as personal recommendations. Giving patients a way to share their experience with the doctor is an important part of the communication process. Honest patient feedback is certainly valuable information for a doctor or clinic whether or not it’s posted online.

A patient relationship management system can give a patient the flexibility to leave feedback for the doctor or write a review that can be shared. For example, the Solutionreach patient reviews feature helps clinics collect reviews from patients and publish them on the Web. There is also functionality that generates custom surveys to give clinics an idea of how well they are meeting patient needs.

Convenient Lines of Communication

People are busy these days. As a result, they are constantly connecting via smartphones, but that doesn’t mean it’s easy to communicate with doctors. The more lines of communication there are, the easier it is for patients to use their preferred method to keep in touch. PRMs are bridging the gap by allowing for contact by phone, email, text and even social media from a single system. Another convenience factor is that these systems allow communication to be documented for later review. The ability to put emails and appointment reminders on autopilot is also a convenience for both the health provider and the patient.

Better Organization of Communication and Information

Decades ago, thousands of paper files were necessary to keep patient information organized. Needless to say, searching for a file was much more time-consuming and the potential for errors was much higher. New technology has revolutionized file management and, in turn, improved the way that doctors and patients communicate. With the right systems in place, clinics can quickly find a patient file, review their records, answer questions, supply health providers with important information and even see when a patient was communicated with last. Specialized patient relationship management solutions can also integrate withelectronic healthcare record systems. Anytime a patient’s records are updated, the information changes in the PRM as well. The practice can even choose how frequently their data syncs. Automatic syncing cuts down on admin tasks so staff can spend more time with patients rather than files. continua a leggere

Online communities can help the NHS, so why does it ignore them?

Emanuela Valente — Wed, 20 Jan 2016 14:46:25 +0000

People with conditions such as diabetes increasingly seek support on forums and social media, but the NHS overlooks them

Articolo di Arjun Panesar su The Guardian

Social media has changed most aspects of life – including how people gather information about their health. While online forums for those with particular conditions, such as diabetes, are rapidly growing in popularity, the NHS is continuing to ignore them, even though they have the potential to save large sums of money. It is a frustrating blind spot.

My own experience of co-founding and running Diabetes.co.uk – the largest online community for people living with the condition – suggests these kind of forums have almost no contact with the NHS, despite our estimation that we could be saving it more than £7m a year by educating people about their condition and helping them manage it so they can avoid costly ambulance call-outs and hospital admissions.

Diabetes now affects more than 4 million people in the UK, a 65% rise in the past decade. The condition is a major user of NHS resources, with treatment costs for type 2 now taking £10bn a year, nearly 10% of the total budget. Complications, including heart disease and amputations, are by far the most expensive part of treating the condition. Inpatient care of complications costs between £1,800 and £2,500 for each patient.

If the health service made more use of self-supporting communities to educate people with diabetes, it would reduce the need for costly inpatient care.

There is clearly a rising demand for what online forums offer, perhaps reflecting the steady migration of the search for information from offline to online. Diabetes.co.uk, which launched in 2010, gets more than 2 million visitors each month and now has 415,000 members in the UK.

The democratisation of knowledge should be seen as an addition to healthcare not – as it is hard to escape concluding – a challenge to it. We think the health service should learn from consumer technology giants such as Apple, which uses forums to augment their customer service.

By not engaging with forums like ours, the health service is not just losing opportunities to reduce care costs but also to gather information on patient experience and attitudes. One survey we conducted generated 20,000 responses in six weeks, for example. continua a leggere

Doctors Unionize to Resist the Medical Machine

Emanuela Valente — Tue, 12 Jan 2016 08:50:32 +0000

An Oregon medical center’s plan to increase efficiency by outsourcing doctors drove a group of its hospitalists to fight back by banding together.

Articolo di Noam Scheiber sul New York Times

Early in the morning on Aug. 12, 2015, a 68-year-old man named Barry turned up at PeaceHealth Sacred Heart Medical Center in Springfield, Ore., confused and feverish.

The case was not a candidate for even a minor subplot on “House.” The admitting doctor stopped one of the patient’s medications and inserted an IV to deliver fluids, and by late the next morning, he had largely recovered.

Still, Dr. Rajeev Alexander, the hospitalist who took over his care, was determined to make an accurate diagnosis.

For nearly half an hour, Dr. Alexander, a perpetually rumpled man, chatted with Barry and Linda, his sister, about the events that had landed him in the hospital, the food processing plant where he once worked, the stroke that had impaired his mind. “It was a very scary night last night,” Linda, his caretaker, said. “He was just sitting on the floor, like you would sit a 6-month-old when they haven’t got their balance.”

Dr. Alexander considers it proper technique to review each mundane detail with a patient. He is full of scorn for the eureka style of medical diagnosis depicted on television, and by his own admission, he reads a CT scan with the sophistication of a barber.

Eventually, Dr. Alexander would discard the more exotic theories that had crossed his mind — meningitis, or possibly a condition known as serotonin syndrome — and settle on a far simpler malady: dehydration, which aggravated a chronic kidney problem.

He was nonetheless unapologetic about the time he had invested.

“Real life is all about the narrative,” he said. “It’s sitting down and talking about bowel movements with a 79-year-old woman for 45 minutes. It’s not that interesting, but that’s where it happens.”

Dr. Alexander’s method is at the center of an emotional debate in medicine, in which the imperative to increase efficiency in a high-cost health care system is often at odds with the deference traditionally accorded to doctors. continua a leggere