9:20 - 10:05 amSaturday, September 6
LK 130
Expanding on Engel: A physician turned artist's perspective
LK 130
Expanding on Engel: A physician turned artist's perspective
Physician and PhD Student, Royal College of Art
Assistant Professor, Johns Hopkins School of Medicine; Associate Faculty, Johns Hopkins Berman Institute of Bioethics
ePatient Scholar
Artist in Residence - Metalsmith/Medical Illustrator
General Partner, Health Wellness Practice, IDEO
ePatient Scholar; CEO/Chairman & Founder, FMD Chat
Merleau-Ponty’s (1945) notion of the ‘lived-body’ held that we are a ‘multiphasic, experiential being and the nucleus of our consciousness / intentionality’. Therefore, it makes sense to concede... Read more

Description

Merleau-Ponty’s (1945) notion of the ‘lived-body’ held that we are a ‘multiphasic, experiential being and the nucleus of our consciousness / intentionality’. Therefore, it makes sense to concede ownership of illness to the patient and acknowledge their perspective, without which there can be no authentic clinical conversation.

Engel’s biopsychosocial model offers a suitably empathic approach to the practice of medicine that guards this perspective, attending to man as a person rather than as machine. However, the way we practise medicine is changing hard and fast, in particular through the fragmentation (and stratification) of care provision and the digitisation of medical records. This change, I assert, is pushing medicine back towards a narrow, reductionist biomedical model.

For this panel discussion I will describe a broader, more patient-centred model that re-orientates itself towards medicine’s roots in the humanities and in so doing can deal with that which we find most difficult today: that which we cannot easily quantify, that which is unknown, and that which we do not yet understand. It is a model in which statistics can remain pivotal but not in total control, and which defends itself against dogma.

Central to this expanded model is finding a way of representing the patient perspective in a way that manages to be both objective and subjective, rather than scientific subjective, and can assert this agency in everyday clinical conversation. Art and design have such a rich history of describing difficult medical concepts and perspectives, and have often formed the central focus for conversation. This is why I feel this it is in the realm of digital design that this new model can be supported:

‘We have medical records, but they are like the shadows on the wall of a cave, punctuated by codes and jargon.’   [Elwyn, 2014]

Dave Pao was born in London and has worked there as a medical doctor since 1995, specialising in venereology and HIV medicine. He has a post-doctoral degree in the biological and behavioural determinants of HIV transmission from University College of London (UCL). He has also just won a scholarship to undertake a PhD at the Royal College of Art in London to study design.

Pao asserts that it is the clinical conversation that is the most important part of his work because it reveals patient beliefs, and those beliefs govern behavior. He is interested in how digital design can facilitate the clinical conversation and how this might lead to better clinical outcomes.

Zackary D. Berger, MD, PhD, is an internist and epidemiologist and an Assistant Professor in the Department of General Internal Medicine at Johns Hopkins School of Medicine, with joint appointments in the Department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health and in the Berman Institute for Bioethics at Johns Hopkins. His research interests include the patient-relevant effects of public reporting, patient-doctor communication, overuse, and the exercise of patient autonomy in the context of limited clinical information; among his clinical interests are the treatment of depression, anxiety, and low-risk prostate cancer. He is currently conducting a pioneering qualitative study of doctor-patient communication in the hospital, focusing on patients’ dialogues with their physicians. In addition, he has published on the importance of doctor-patient communication to patient satisfaction and on physician professionalism as it interacts with patient choice, and conducted research on how doctors and patients collaboratively set an agenda during the primary care visit. Dr. Berger is also Core Faculty in the Johns Hopkins Evidence-Based Practice Center (EPC) and the Johns Hopkins Center for Health Sciences and Outcomes Research. He has focused on patient-reported outcomes as a co-investigator on numerous systematic reviews, including those of continuous glucose monitoring and of treatments for Crohn’s disease. In addition, he was lead author of the chapter on patient and family engagement in a recent EPC critical analysis of patient safety practices. Dr. Berger maintains an internal medicine practice in the Johns Hopkins Outpatient Center and is a preceptor in the Adult Medicine housestaff clinic there. He is actively involved in applying methods of quality improvement to the outpatient setting.

Rachel Crooks is a fourth year biological science student at the University of Calgary. She has always had a strong interest in medicine, however upon entering university, she decided that medicine was not the path for her until she ran head on into her own medical malady.

Rachel's diagnosis of Myasthenia Gravis and subsequent journey through the healthcare system has renewed her interest in becoming a physician.

She blogs about the patient experience and improving communication between patients and their healthcare providers.

For Rachel B. Stork Stoltz, metalsmithing has changed from a hobby to a significant part of her life. As a trained medical illustrator, her work involves the intersection of art and anatomy. Starting as merely anatomical forms representing her love for anatomy, her metalwork has evolved into inspirational pieces for patients with chronic disease as well as awareness designs. These people and patients are where she gathers inspiration. Using items such as surgical staples from a lung transplant, she creates custom pieces with deep personal meaning and narrative. They may commemorate a life-changing event, a journey or honor those lost. Through her work she gives a visual voice to invisible illnesses. She continues to learn traditional and new metalsmithing techniques to incorporate into and strengthen her work. While her illustrations and professional work before this had value, this new adventure adds a deeper level of meaning and fulfillment to her life.

Dennis Boyle is one of the founding members of the design and innovation firm IDEO and has worked as a project leader for many of the firm’s start-up and established clients including Apple, Palm, Tivo, Handspring, HP, Dell, Proctor and Gamble, and others. Dennis is now one of the leaders of the Health and Wellness practice at IDEO. Mr. Boyle is also a Consulting Assistant Professor at Stanford and teaches classes in the Design Division of the ME department.

Sarah Kucharski, or AfternoonNapper, blogs as a health advocate fostering the patient voice in medicine. Special interests include the patient experience in healthcare settings, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, health literacy, advance planning and end-of-life issues. She is CEO/Chairman and Founder of FMD Chat, a nonprofit organization supporting those around the world affected by a rare vascular disease. As FMD Chat’s leader, she oversees the organization's consistent achievement of its mission and financial objectives; fundraising; publicity and media relations; domestic and international partnerships; volunteer recruitment and development. She also serves on the ePatient Advisory Board (2012, 2013) for Stanford University's Medicine X conference.

Speaking engagements have focused on the role ePatients are playing in healthcare at the Doctors 2.0 & You healthcare and social media conference in Paris, France; and to med school students at both Stanford and UC Irvine regarding the ePatient experience. Additional conference participation includes HealthCamp DC; Partnership With Patients; HealthCamp Kansas City; ScienceOnline 2013, and Rare Disease Day at the National Institutes of Health. Her work has been recognized with Health Advocate Award nominations from Wego Health, state newspaper and international blog write ups, a Rare Disease Legislative Advocates scholarship to participate in Congressional lobbying on behalf of the rare disease community, and a scholarship to Medicine 2.0 at Stanford University.

Individually she is a member of the Society for Participatory Medicine, National Organization for Rare Disorders, Rare Disease UK, Cleveland Clinic Patient Advisory Panel, and Regina Holliday's Walking Gallery of Healthcare. FMD Chat is a partner organization of the N.C. Center for Nonprofits, Global Genes, EURORDIS, and Rare Disease UK.

AfternoonNapper's day-job is as an award-winning writer and editor of a nationally-published, regional lifestyle magazine covering Western North Carolina, East Tennessee, North Georgia, and Southwest Virginia. She is responsible for the magazine's overall editorial concept and content in addition to business operations including freelancer relations, marketing, sponsorships, and social media.

As her moniker would imply, AfternoonNapper enjoys ruminating from a prone position and napping—mostly in the afternoon, but any time will do.

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