Editor’s note: With this post Health Affairs Blog launches a new series: “Narrative Matters, The Next Chapter.” Narrative Matters essays often capture part of a larger, ongoing story; in this periodic series of HA Blog posts, Narrative Matters authors will update readers on the “next chapter,” discussing personal, professional, and policy developments that have occurred since – and sometimes as a result of – their “policy narratives” published in Health Affairs. First up: Jonathan Welch, a physician who told the story of his hospitalized mother’s death of an untreated infection in “As She Lay Dying.”

In an earlier Health Affairs Blog post, S. Allan Adelman and Lewis Morris set forth the questions that hospital leaders should ask themselves to prevent the sort of substandard care that Welch’s mother received.

When we fail to form partnerships with patients and families within the health care system, we squander opportunities to improve.  I’m a physician, but I learned this devastating lesson from an outside perspective, when my mother died of an untreated systemic infection while admitted to my hometown hospital.  I wrote about the experience in the Narrative Matters essay “As She Lay Dying” in the December 2012 issue of Health Affairs.  While I was shocked to witness multiple errors in the course of my mother’s care, afterward I was equally surprised at how difficult it was to partner with the hospital where she died to make it a safer place.  Since writing “As She Lay Dying,” I’ve continued to work toward bringing patients, families, and the healthcare community together on a path toward improvement.

The Partnership for Patients: A Patient-Centered Initiative

Over the past several months, I’ve continued to share our family’s story with hospital and health system leaders throughout the country. One way I’ve done this is through the Partnership for Patients, a CMS-convened public-private partnership whose goal is to achieve a 40 percent reduction in preventable hospital-acquired conditions and a 20 percent reduction in 30-day readmissions.  Recognizing the importance of patient and family engagement, the partnership is involving patients in their efforts, identifying organizations that reflect patient and family engagement best practices, and spreading these practices nationally.

Additionally, through twenty-six Hospital Engagement Networks which interface with over 3,700 hospitals, the Partnership for Patients is also tracking progress on patient and family engagement practices.  Five key patient and family engagement metrics are measured:

  1. Prior to admission, hospital staff provide and discuss a planning checklist with every patient that has a scheduled admission—allowing for questions or comments from the patient or family.  The planning checklist would be similar to CMS’s “Discharge Planning Checklist.”
  2. Hospitals conduct shift change “huddles” and bedside reporting with patients and family members.
  3. The hospital has a dedicated person or functional area (a division or department, e.g.) that is responsible for patient and family engagement and systematically evaluates and promotes patient and family engagement activities.
  4. The hospital has an active Patient and Family Advisory Committee, or at least one former patient that serves on a patient safety or quality improvement committee or team.
  5. The hospital has one or more patients who serve on a Governing and/or Leadership Board and who serve as patient representatives.

In June 2013, nearly three quarters of the approximately 3,700 hospitals interfacing with the Hospital Engagement Networks had met at least one of these patient and family engagement metrics.

The Way Forward

After “As She Lay Dying,” I began wondering how other service industries learned from their customers when designing products, and what the lessons for healthcare might be.  Salesforce.com, a popular software platform that helps companies manage consumer relationships, provided an illustrative example.  In their book Groundswell, authors Charlene Li and Josh Bernoff detail how Salesforce.com struggled to improve its software. The company had to choose from an overwhelming array of potential new features to add to its product, and wasn’t sure how to discern good options from the bad.

So Salesforce built IdeaExchange, an online portal that collected user suggestions for potential software improvements, and then asked customers to vote for the best ideas.  IdeaExchange was an unequivocal success. The result: a threefold increase in the number of new features offered with each software release, with half of all software improvements attributed to the idea-gathering initiative.  By partnering with its users, Safesforce revolutionized how it improved its product.

Healthcare requires similar efforts to listen actively and directly to the voices of its “users” – the patients and families whom we serve.  New models for doing so are already beginning to blossom.  For example, Dr. Anthony DiGioia, an orthopedist at the University of Pittsburg Medical Center, has developed a new methodology for involving patient and family feedback that transforms the way that healthcare is designed and delivered.  DiGioia’s work is detailed in the Institute for Healthcare Improvement’s book Pursuing the Triple Aim: Seven Innovators Show the Way to Better Care, Better Health, and Lower Costs.

One interesting component of DiGioia’s methodology, known as the Patient and Family Centered Care Methodology and Practice, calls for healthcare staff to shadow patients through the entire care cycle – from the initial pre-operative visit, to the surgical procedure and acute hospitalization, inpatient rehabilitation, and post-operative clinic follow-up visits.

When DiGioia and his colleagues shadowed patients, they found surprising opportunities for improvement.  For instance, after seeing care through patient and family eyes, DiGioia’s team designed interventions that better prepared patients for a joint replacement procedure, subsequent pain control, and the rehabilitative and discharge planning process. For example, patients had an office visit before the procedure with a social worker to review the anticipated discharge plan.

When Dr. DiGioia’s clinic implemented these practices, they were able to achieve superior results.  With pain adequately treated – an important quality metric – patients were able to initiate physical therapy earlier in their acute hospitalization.  In fact, 99 percent of patients reported that pain was no longer a significant limitation to participating in physical therapy, even the day of the patient’s surgery.  When pain control was paired with effective discharge planning, fewer of DiGioia’s patients required placement in an expensive inpatient rehabilitation facility.  Fewer than 10 percent of patients were transferred from his hospital to inpatient rehabilitation, compared to over 70 percent of patients nationally.  Thus, finding new ways to learn from patients had significant cost savings as well.

Reactions To My Story

When “As She Lay Dying” was published, I received many letters from readers sharing similar stories.  Their accounts emphasized that my experience wasn’t a one-off oddity and taught me that much of healthcare has yet to find ways to partner and learn from patients and families effectively.

When I speak about our family’s experience, I’ve learned from audiences as well.  When I ask audience members whether something has ever gone wrong, big or small, in their healthcare or the care of a loved one, the vast majority of people raise their hand.  But when I ask if their hospital or clinic learned from the experience and improved, the sea of hands is reduced to two or three individuals.  This gap is the missed improvement opportunity that we in healthcare need to bridge.

The work of the Partnership for Patients and clinical innovators such as DiGioia gives me hope that healthcare is on a new path.  Directly partnering with patients and families in designing and improving care is proving a surprisingly simple tool for improving health care quality, lowering costs, and humanizing the patient experience.  These beacons give me hope that my family’s tragedy, and those of others, will not be in vain.