Very few people with chronic conditions would know Judith Schaefer’s name, but for more than two decades she has been a major force for tuning health care systems into the patient perspective.
When she was invited to work with a small team at Group Health’s Center for Health Studies (now Kaiser Permanente WA Health Research Institute) in 1995, Judith Schaefer was thrilled to land a good job. A single mother raising two children, she was living with myasthenia gravis, a relatively rare neurological condition characterized by weakness and fatigue with substantial physical limitations.
As Judith prepares for retirement in 2018, it’s with a sense of joy, optimism, and dramatically improved health. Now a physically energetic 70-year old, she radiates a sense of well-being and vibrancy. She walks and goes to the gym, and looks forward to continuing an active lifestyle.
When she joined our group here at MacColl as a newly minted researcher needing income, she could not have foreseen the changes that would happen over the next two decades within herself nor in health care systems around the world. And no one could have guessed the extraordinary impact she would have in the real world.
Chronic disease and its limitations
Thirty-odd years ago, Judith began working in patient-oriented service organizations. She knew a little bit about what life might be like, having a chronic illness – then she was diagnosed with one. Myasthenia gravis is a neurological condition that’s also an autoimmune disorder. About that time of her life, Judith recalls that her “symptoms of weakness and fatigue were at times severe, and I worked to manage them, but I wished there could be an engineer to help me live with my symptoms. I wanted a coach to help me make medical decisions.”
Medical care for myasthenia gradually improved, and Judith’s health improved enough for her to begin supporting herself and her family. Her little family of three had few financial resources, but with help from the State Division of Vocational Rehabilitation, she earned a master’s degree in public health from the University of Washington. She knew that she wanted to link her education with the experiences she had as a patient. Fortunately, while at UW Judith made a connection that would change the course of her life.
A momentous meeting
Judith’s academic advisor recommended she talk with Ed Wagner, MD, MPH, a Group Health researcher, UW professor of public health, and our founding director. “When I met Ed, he was forming a team that would directly address the improvement of health care for people with chronic conditions,” Judith recalls. “I was grateful for the job and I felt very interested in the work, but I didn’t have any idea what an opportunity it was.”
Through the Robert Wood Johnson Foundation-supported Improving Chronic Illness Care program (ICIC), Ed and our team developed the elements of a model for health care system transformation supported by existing scientific evidence.
“Judith expressed frustration with the patronizing way in which she was treated by professional caregivers and the submissive role expected of her. Rather than become bitter, she decided to devote her career to changing the way patients are treated."
- Ed Wagner, MacColl Center Director Emeritus
Smiling over the memory of “patient-centeredness”, a new and awkward term at that time, Judith says, “Ed was interested in patient-centeredness before it was cool. Along with Connie Davis (a geriatric nurse practitioner and former MacColl Center colleague), I really felt engaged in planning and developing a new model that could transform the health care system. Connie and I worked together on the patient-centered parts. I felt like I was really contributing, which is a wonderful thing. It was exciting.”
Admiration and respect characterize the comments made by her colleagues on the value that Judith brought to our team.
“One of the best things about Judith is that she helped our team become aware of words and ideas that needed to be addressed."
- Connie Davis, RN, MN, ARNP
Ed echoes Connie’s sentiments, “With Judith at the table, we were relentlessly reminded to think about the impact of our ideas on patients’ confidence and skills in managing their illness.”
After the publication of the Chronic Care Model in 1999, health care systems large and small asked our team to assist with implementing it into their settings. Ed, Judith, Connie, and our staff frequently spoke at venues across the country and facilitated learning collaboratives based on the Institute for Healthcare Improvement’s Breakthrough Series methodology.
“Twenty-five years ago, most patients didn’t have the belief that they could do anything to improve their well-being. Health care didn’t prepare them to take care of themselves. This was an overwhelmingly exciting moment in my life,” Judith relates. “Many times, I felt out of my depth because my experience prior to this was one of living with an illness, not with the inner workings of the health care system. I had to learn what it meant to deliver health care.”
Judith became an advocate for self-management support. This area of the CCM was often the most difficult for practices to implement because it required culture change, along with skills and tools that didn’t yet exist.
“Judith was at the forefront of a movement that shifted our perspective. I needed her in my life to show me what it looked like to think about health services in a patient-centered way.”
-Paula Lozano, MD, KPWHRI Senior Investigator and WA Permanente Medical Group physician
Finding her authentic voice
As the MacColl team responded to the rapid uptake of their work, Judith began giving talks to increasingly large audiences. She vividly remembers a training on self-management support for 900 participants. “I was always on the edge of learning something new and pushing a little bit harder. It was amazing. But I wasn’t trained in public speaking, and the learning curve was astronomical.”
Judith accepted speaker invitations from around the world, resulting in increased physical stress. There were times when her chronic disease symptoms intruded, but she persevered. “Myasthenia caused my facial muscles to grow tired, and sometimes I’d lose my ability to articulate clearly. But the message was the critical issue. I’d prop my thumb under my chin and continue.”
With more experience with clinicians and health care teams, Judith’s own frustration with the medical system began to heal. “I had a real epiphany at one point that doctors were struggling so hard,” she explains. They were put in a very difficult place, being expected to cure what is incurable or find ways to deal with things that were far beyond their training. I began to feel so much compassion.”
“We both live with chronic conditions, something I generally share with my patients. Judith and I both believe that perhaps our greatest tool has been to say ‘we’ to patients, rather than ‘you’."
- Alan Glaseroff, MD, Adjunct Professor of Medicine at Stanford University , Co-Founder of Stanford Coordinated Care
Shifting from patient to expert researcher
Around 2007, the patient-centered medical home emerged as the new standard of care. Stakeholders began to examine the last two decades leading up to this change, as well as emphasize the need to measure better care. Judith moved further and further from being identified primarily as a person living with a chronic illness, and shifted into the role of content expert working with groups of primary care practice clinical teams. She began serving as faculty, and eventually worked alongside other researchers to conceptualize further study about chronic illness.
Judith’s work became even more focused, with her leading trainings, writing more, and developing learning communities. A certified master trainer of the Chronic Disease Self-Management Program, Judith authored a self-management support training manual for clinicians that’s become a standard reference for providers. She assisted in the development of an Agency for Healthcare Research and Quality resource center for self-management support and created a network of learning communities with Abt Associates.
“We found joy in work through partnership, building high-functioning teams, and striving for technical excellence. It has been an extremely satisfying working relationship and, ultimately, friendship.”
- Lisa LeRoy, PhD, Principal Associate, Abt Associates
Now ready to take on the world
Today Judith is still an empowered patient who self-manages a chronic condition. She says that she’s working on how to feel vital and alive and healthy: emotionally and mentally, as well as physically.
“Judith is so brave. She doesn’t shy from hard things, but walks right into them and is willing to accompany and abide and be active in creating beauty. There is always another perspective to take, another way to look at a problem. When you’re talking with Judith, your world expands."
- Katie Coleman, MSPH, MacColl colleague
As for what’s next, Judith’s eyes light up when she says, “I didn’t have the courage to travel in my teens or twenties. So, I’m going to spend my early retirement years seeing as much of the world as I can. I’m planning to start in Italy.”
Grazie di tutto, Ms. Schaefer! Buon viaggio!