5. Creating a Model for Humanized Health Care

There is a CIM-led revolution brewing across the Johns Hopkins Medicine enterprise — one that is forward-looking while also steeped in history, namely William Osler’s guiding ethos: “The good physician treats the disease; the great physician treats the patient who has the disease.”

The importance of getting to know patients as people has been a pillar of CIM’s mission since its founding 20 years ago, perhaps most notably through the establishment of the Aliki Initiative in 2007, which created a new model for the way young doctors should be trained.

Today — with patients increasingly feeling dehumanized in the face of rapid technological advances and with doctors experiencing burnout at unparalleled rates — it is more crucial than ever to focus on the Oslerian tradition. Enter, CIM’s Initiative for Humanizing Medicine (IHM), an ambitious, institution-wide effort launched in fall 2022 that aims to make Johns Hopkins nothing less than the national model for humanized health care.

To do that, IHM’s leaders are starting close to home. “In our first two years, we have been working hard to identify clinicians across our schools of medicine, public health, nursing and other divisions who are committed to the values and the vision of the Initiative for Humanizing Medicine — that is, to ensure that every patient is treated with dignity and respect and gets compassionate care,” says IHM Co-Director Mary Catherine Beach, a professor of medicine and Mary Gallo CIM Scholar.

IHM Co-Director Scott Wright likes to use a gardening metaphor to describe the far-reaching effort underway. “We’ve been planting seeds and establishing fertile soil so that humanized medicine can take further root and sprout up across all of Johns Hopkins Medicine,” says Wright, Mary Gallo CIM Scholar, director of CIM’s Miller Coulson Academy of Clinical Excellenceand holder of the Anne Gaines and G. Thomas Miller Professorship.

Beginning with a kickoff half-day retreat at Folly Farm, the home of Stephanie and Erwin Greenberg, which drew more than 50 clinician leaders from across Johns Hopkins in September 2022 (and again in 2023) to brainstorm about potential collaborations, IHM leaders have convened quarterly dinners on different campuses where like-minded participants can catch up, bond, and discuss opportunities and initiatives.

“By convening regularly, we aim to gather ideas and guide and help participants so they can be agents of change within their own clinical areas,” says Wright.

Already, through a series of “microgrants,” IHM leaders have funded 14 projects initiated by teams across Johns Hopkins — many led by nurses — that are dedicated to making changes aimed at improving the patient experience. Martha Abshire Saylor, the Mary Ousley CIM Scholar and the first CIM nurse scholar, who is co-leading the microgrants program with Beach and Wright, notes that they received close to 100 creative proposals from across Johns Hopkins.

In one, radiation oncologist Annie LaVigne is working with journalist Elizabeth Tracey, who is also a chaplain at The Johns Hopkins Hospital, who in 2020 launched “This Is My Story,” a two-minute audio clip that includes lots of personal details about a patient based on interviews with patients and family. The recorded files are attached to the electronic medical records of patients to give doctors and nurses a picture of the patient’s individual story.

“We have been working to not only expand TIMS, over to my domain in the cancer center,” says LaVigne, “but to truly push forward the notion of having a ‘Personomics’ tab in the electronic medical record, which would ideally incorporate the ‘personal snapshot’ that I had envisioned.” That snapshot aims to “amplify the patient voice,” she says, by integrating patient-centered audio, visual and written components within the electronic medical record.

IHM leaders have also funded five larger research grants — chosen from among 46 proposals — through which faculty/student/staff teams are working creatively to lay the groundwork for substantive improvement in humanized care. In one project, a team is exploring the role that storytelling takes when patients are awake for surgical procedures. In another, which is ultimately aimed at alleviating burnout and increasing empathy in early-career ICU providers, a research team is recording and analyzing video interviews with ICU patients and their caregivers.

“In addition to providing funding of up to $25,000 for each project, we are actively mentoring these research teams,” says Beach. “We want to help participants build a career within this discipline of humanized medicine and take the field even further.”

An Impact Impossible to Estimate

The groundwork for the Initiative for Humanizing Medicine was laid in the early years of CIM through the Aliki Initiative, named for funder Aliki Perroti.

Janet Record was a chief medical resident at Hopkins Bayview Medical Center when the Aliki Initiative was launched in 2007. Record’s experience helping to design and implement this patient-centered care curriculum was so formative that she has focused her career on advancing its central tenets among today’s trainees through her curriculum building, clinical teaching and published research. “I was so lucky to be at the right place at the right time, to have this chance to help build and sustain the Aliki program,” says Record, today co-president of the national Society of Bedside Medicine, launched in 2016 by Brian Garibaldi, the Douglas Carroll, MD CIM Scholar.

While the Aliki curriculum has evolved over the years, its foundational pillars remain intact. It begins at patient admission, with residents being trained to ask a series of questions “that make a big difference in providing humanistic, patient-centered care,” Record says. Questions go beyond simply asking about what medication a patient takes, to exploring what concerns a patient may have about their medications, such as cost, regimen complexity, side effects or other barriers to taking prescribed medications. In a series of prompts now built into the electronic medical record, trainees on the Aliki service also ask about life outside the hospital, such as, “What is a typical day like for you? Who lives with you? What is most important to you?” Record explains.

Other important Aliki elements include spending a greater balance of time at the patient bedside rather than the conference room during medical rounds, where patients can hear and participate in more of the discussions, and clinical skills can be fostered at the bedside; communicating with a patient’s outpatient clinicians; and following up with patients after they are discharged.

Surveys of trainee participants conducted by Record and her Hopkins colleagues have found that residents who participate in the Aliki program are indelibly impacted. “The Aliki experience will go with me in all walks of my professional life. It has a direct influence on me as the chair of our hospitalist group … [and] I also find myself drawing from my Aliki experience in most patient encounters,” noted one participant in a 2020 study led by Colleen Christmas and Record published in the Journal of Graduate Medical Education. “During busy days with numerous encounters, my training helps me to keep the patient at the center. It reminds me that I am dealing with an individual (a father, a husband, or brother), and not just an ‘n’ in a randomized controlled trial,” observed another.

Each year, about 60 medical residents cycle through the Aliki rotation. They then carry what they learn to all other experiences, including the other general medical services and intensive care units, notes Vice Dean for Education Roy Ziegelstein, the Sarah Miller Coulson and Frank L. Coulson, Jr. Professor of Medicine.

“Because the graduates who leave our residency programs take with them what they’ve learned to other institutions and practice settings, the true number of patients impacted over these past 16 years is almost impossible to estimate,” he says.

“It is estimated that since the inception of the Aliki Service, residents trained on Aliki have — during and after their training — touched the lives of nearly 1 million patients,” notes CIM Director David Hellmann.

In his book Let Me Heal: The Opportunity to Preserve Excellence in American Medical Education, noted medical historian Kenneth Ludmerer, M.D. ’73, highlighted the Aliki Initiative as a model for fixing graduate medical training. As Ludmerer has written: “The Aliki Initiative is the most important innovation in graduate medical education in a generation.”

A Demand for Change

While the patient-centered focus of the Aliki Initiative has primarily been on early-career physician trainees, the Initiative for Humanizing Medicine is casting a wider, institution-wide net, “creating a connective tissue across Johns Hopkins that will allow us to rebuild the health care system and make Johns Hopkins a model for the world,” says Cynthia Rand, senior associate dean for faculty and Mary Gallo CIM Scholar, who co-led the Aliki Initiative.

While the Initiative for Humanizing Medicine is still in its early years, its work has already earned significant financial support through more than $11 million over the next five years in grants (primarily from the NIH and CIM supporter Mary Gallo) supporting multidisciplinary projects spanning the schools of medicine, nursing, public health and business. Most of those projects are led by Beach, who is renowned for her research on improving doctor/patient communication and ensuring respect for all patients.

Over the course of just the past year, Beach has published 17 manuscripts in peer-reviewed journals, submitted three new grants for funding, and has worked extensively in mentoring postdoctoral fellows, medical students and junior faculty on projects related to humanizing medicine. Most recently, she and an interdisciplinary Hopkins team received a prestigious 2024 Discovery Grant from the university for their research project “The Dynamics of Trust: An Interdisciplinary Approach to Improving Health Care.”

Says Beach, “If we can create a place where people come together and think about what needs to change, they will demand more from our health system. This could be a revolution.”