Redesigning Health Care with Patient Architects
By Gregory Makoul, PhD, MS
I've often said that the best way to ensure the failure of pretty much anything meant to help patients is to have extremely smart, well intentioned professionals – administrators, consultants, educators, entrepreneurs, marketers, payers, providers and/or researchers – build it without talking, and listening, to patients at every step along the way.
Of course, it’s no secret that patients and providers offer the strongest insights for practice innovation and process improvement. Yet their voices are too often missing from the equation. If patient engagement is indeed the blockbuster drug of the century, why aren’t more practices, hospitals, and health systems using it? And if we want team-based care to be more than a catchy term, why aren’t all members of the team involved in designing change?
Maybe because people in charge of organizational portfolios, programs and projects are not sure how to truly engage patients and colleagues in a systematic and sustainable way.
CIPCI recognizes the importance of real-world engagement. Given our focus on transformation that works, CIPCI faculty and staff consider it absolutely essential to hear from the people providing care and the people seeking care. We also want to talk with the people who could be providing or seeking care but are not. We ask a lot of questions that help identify the problems that need to be solved as well as the range and viability of potential solutions. Perhaps more importantly, we encourage patients and providers to observe everyday clinical practice with fresh eyes, to ask questions of their own, and to be open to ideas from multiple sources.
In April 2013, CIPCI developed a Patient Architect program intended to engage patients in working directly with primary care practices to redesign care. We were very deliberate about our choice of the term ‘architect’. Over the past two years, the theme of real-world problem solving through design has provided a strong line of continuity throughout our work.
Our first cohort of Patient Architects included 13 people: about a third from a family medicine clinic, a third from an internal medicine clinic, and a third who lived in the local community but were not associated with either clinic. We began a full day session by getting to know one another. The patients shared stories and asked questions while the CIPCI team made every effort to ensure that everyone had a chance to be – and feel – heard.
We also provided:
(1) an orientation to problem definition and problem solving, including innovation and common sense, quality improvement, systems thinking and process maps, and Health IT;
(2) a primer on the patient-centered medical home and what it means to be a teaching practice.
The Patient Architects then split into two groups, each of which visited a family medicine clinic and an internal medicine clinic. During these visits, Patient Architects observed how the clinics approached several aspects of care (i.e., check-in, triage, waiting room, back office, phones, resident training). We brought both groups of Patient Architects together to debrief after their visits.
The debriefing sessions were incredibly powerful. Patient Architects had keen observations and insights into each clinic’s layout, flow, staff behavior and communication, which were subsequently shared with clinic leadership and staff.
One example: Each reception bay at the internal medicine clinic had thick glass with a small, rather awkwardly placed opening between the patient and staff member. The family medicine clinic was contemplating installing similar glass in their reception bays. After hearing Patient Architect reactions (i.e., likening it to bulletproof glass or what might be seen in a prison), the family medicine clinic looked for an alternative. They opted for thin panels of sliding glass to convey openness to patients who were checking in while affording privacy to those who were speaking with reception staff via phone. And the internal medicine clinic began looking at options for changing the glass or removing it altogether.
The Patient Architects also helped redesign the clinic mission statements. When we showed patients the statements then in use, their eyes glazed over. While these statements might have captured elements important to providers, the words meant little to patients seeking care. So we asked a simple question: Why do you think these primary care clinics exist? Their answers were thoughtful, simple, and straightforward.
So we worked with Patient Architects and clinic leadership to re-define the core purpose of our primary care clinics, a statement that has since been embraced by all of the UConn Internal Medicine residency clinics.
The Gengras Internal Medicine Clinic is a
patient-centered medical home and a
learner-centered training site.
We know our patients as individuals, provide the best care for them, and empower them to improve their own health.
In a subsequent session with the same core group of Patient Architects, we refined information on “Why Care about Primary Care” that AccessHealthCT, the Connecticut state insurance exchange, asked CIPCI to develop for people new to health insurance.
The trust engendered through this process is palpable. And trust is the key to sustainability. Moreover, patients express heartfelt thanks and pride for being engaged in this way. CIPCI might have coined the term Patient Architect, but we feel no ownership over the process. The original group has been working with CIPCI for two years, and a new group has just taken shape at UConn. We will be happy if the model spreads to practices across the state and beyond. Because the power of Patient Architects is in truly listening to patients.