Almost 50 years ago, EHR pioneer and Harvard Medical School professor Warner Slack, MD, said patients’ insight is the “largest and least utilized resource in healthcare.” Today, health systems are working to bring patients into clinical decisions — and increasingly, into strategic ones.
“If we’re not partnering with our patients, then we’re not doing the right work,” Stephanie Calcasola, MSN, RN, vice president and chief quality officer at Hartford (Conn.) Health, told Becker’s. “Patient-centeredness can be complex, but it’s worth it.”
Approaches to integrating patient perspectives vary, but leaders say several initiatives have had significant results.
City of Hope Cancer Center Chicago
Clinicians at City of Hope Cancer Center Chicago live by the words of Samuel Golter, an early system leader: “There is no profit in curing the body if in the process we destroy the soul.”
Communication begins when patients arrive at the hospital, where they speak with a nurse navigator whose purpose is to understand their needs, including religious and cultural preferences, Walter Stadler, MD, chief clinical officer at the hospital, told Becker’s. This includes bloodless medicine for Jehovah’s Witnesses and specialized breast cancer programs for Ashkenazi Jews. Patient feedback also shaped the design of inpatient rooms and the creation of support groups.
“Patient feedback is a vital part of every personalized care plan,” Dr. Stadler said. “Input from nurse navigators, social workers and palliative care specialists helps guide value-based conversations at key moments, such as diagnosis, treatment transitions and end-of-life care.”
Physicians are guided by what quality of life means to each patient and rely on real-time, patient-reported outcomes to adjust plans. The hospital is also exploring a digital tool that would allow patients to input their symptoms and concerns directly into the EHR.
Shared decision-making has led to high metrics in patient satisfaction, better health outcomes and adherence to treatment, improved overall trust in care and “consistently superb” quality, Dr. Stadler said.
Cone Health
Greensboro, N.C.-based Cone Health approaches shared decision-making in a few ways, Chief Nursing Officer Vianne Antrum, DNP, RN, told Becker’s.
One step the system took was embedding a patient into its Culture of Safety Committee.
“She asks all the right questions,” Dr. Antrum said. “Whether we’re reviewing policies or looking at data, she provides meaningful feedback on everything from wayfinding and parking to patient education and outreach methods. It’s been incredibly valuable.”
Cone Health also implemented AI that interfaces directly with patients who have chronic illnesses such as hypertension and diabetes. The AI helps patients engage in their own care by prompting them to schedule appointments, check blood sugar or blood pressure and report the results. This technology has reached thousands of patients who have not seen a provider in at least three years, and the number of patients who schedule and attend a primary care appointment has increased 60%.
In May, the system launched a hospital-at-home program, and Dr. Antrum said patient outcomes have been “amazing.”
“That’s the power of including patients in medical decision-making,” she said. “When they help dictate their care, when they feel ownership over the process, you see outcomes that truly matter — not just clinically, but personally.”
Hartford HealthCare
Hartford (Conn.) HealthCare, is incorporating patient voices into as many facets of its organization as it can, including by engaging patient and family advisers. Although it’s not a new concept, “the real work is in how you engage them,” Ms. Calcasola said.
The system also utilizes patients on its Quality and Safety Committee who help shape the system’s strategic priorities, including finance and quality.
“We have dedicated councils for maternal health, cancer care, and inpatient quality,” Ms. Calcasola said. “Patients who have lived through these experiences help us understand what truly matters in care delivery and how we can better communicate and support them.”
Community Advisory Councils are other entities to which patients have been added at each hospital; these panels help the system better understand access issues and community-specific health priorities.
On the clinician side, the system runs simulation sessions with real and simulated patients to help staff practice better communication and decision-making conversations.
Family members are also included in bedside rounding and shift handoffs. As part of that effort, the system launched a family assistance program in which designated caregivers can partner with our nurses to help support mobility and daily tasks.
In addition, patient voices are influencing the launch of new programs and services. For example, the systemwide doula program came after one mother’s feedback.
Overall, Hartford HealthCare has focused on creating what it calls a Just Culture, in which staff and family members are encouraged to report concerns. When harm occurs, staff are transparent with patients about what happened and how it will be fixed, Ajay Kumar, MD, chief clinical officer at the system, told Becker’s.
The effects of these programs are far reaching.
“Over the past decade, we’ve seen significant improvements across our system — close to an 80% reduction in hospital-acquired infections and serious safety events,” Dr. Kumar said. “Since 2013, we’ve achieved a nearly threefold decrease in preventable harm. We measure incidents per 1,000 patient days and beyond, but more importantly, we focus on each individual. We don’t say ‘168 infections’ — we talk about 168 patients. That mindset shapes our improvement strategies, our clinical councils and our operating model.”
Henry Ford Health
Detroit-based Henry Ford Health has worked to elevate the patient voice in care decisions for more than a decade.
The system launched the Patient Engaged Research Center about 12 years ago to involve patients in research. That effort has evolved into the Center for Patient-Reported Outcomes, which focuses on integrating patient feedback into daily care — especially in oncology and orthopedics.
In oncology, clinicians collect patient-reported outcome measures before appointments, including standardized assessments of fatigue, physical function, depression and pain interference.
“As we collected more data and incorporated it into routine care, we found we could use it to make much more tailored decisions,” Steven Chang, MD, chair of Henry Ford’s department of otolaryngology-head and neck surgery and medical director of the research center, told Becker’s. “If a patient’s quality of life is low, it may not be the right time for aggressive treatments like surgery or chemotherapy. Instead, we can pivot and focus on symptom management, which can improve the patient’s experience and, in some cases, extend life by several months.”
In orthopedics, the center has helped patients considering hip and knee replacements determine their baseline function and measure improvement after surgery. These metrics can help assure patients that the surgery helped and support lower levels of care, such as providing physical therapy rather than surgery for patients who have a higher function score, Dr. Chang, who is also the interim chair of the department of otolaryngology at the college of human medicine at East Lansing-based Michigan State University, said.
Beyond the research center, Henry Ford has built automated patient-reported outcome workflows into the EHR.
“Patients can share how they are feeling in real time,” Michael Ryan, PsyD, regional director of Henry Ford Health’s cancer service line for Detroit and administrative director of the Center For Patient Reported Outcomes at Henry Ford Cancer Institute, told Becker’s. “These tools give clinical teams a much clearer picture of what patients are experiencing. Studies have shown that patient-reported outcome measures can help patients articulate symptoms they may not share verbally with their care teams, thus improving communication. This information is then used to guide health-related conversations between patients and providers and supports shared decision-making in the plan of care.”
This integrated technology has enhanced patient-provider communication, helped personalize care plans, and allow clinical teams to be alerted to changes or concerns and respond with treatment adjustment within minutes to hours — rather than days to weeks.
University of Wisconsin
Madison-based University of Wisconsin Health is also leveraging home-based care to elevate patient input. In-home interviews help clinicians understand what is — and is not — working.
“Patients and caregivers felt they had more time with the team to engage in the decision-making process,” Nicole Bonk, MD, chief medical officer of the Orion Initiative at University of Wisconsin School of Medicine and Public Health, told Becker’s.
She said one patient told the team: “They were listening to me and addressing any issues that I had. The care just seemed like it was of a higher standard.”
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