George Bo-Linn, M.D., will spearhead a new 10-year, $500 million initiative aimed at improving patient engagement and eliminating preventable harm. The Patient Care Program is starting with an $8.9 million project at Johns Hopkins Medicine and Bo-Linn hopes successful outcomes will quickly spread across the field.

Interviewed by Matthew Weinstock

What led to the creation of the Patient Care Program?

The Gordon and Betty Moore Foundation started in 2000 and it began with two interests — environmental conservation and, predominantly because of [Intel Corp. founder] Gordon, scientific research. About seven years ago, Betty suffered a medical error that led them to expand the focus to looking at ways to improve health care. From that began the Betty Irene Moore Nursing Initiative and soon after, the Betty Irene Moore School of Nursing at the University of California–Davis. Both of those were focused on increasing the number of nurses in Northern California, increasing their effectiveness and education and to provide leadership opportunities.

The foundation's initiatives are time-bound, so as the nursing initiative came to its end, conversations began as to what we should do next. Should we be in health care? There was a year of considerable conversations throughout the country, seeking input on where the foundation could have the greatest impact for its investments. Our deliberations came to the conclusion that meaningful outcomes and outcomes that are important to patients, such as quality, safety and costs, would be more effective if we could focus on engaging patients and families in their own health care.

We had further conversations looking at preventable harm. Addressing all avoidable harms — taking a systems approach, and engaging patients and families across the line — is the approach that we think will be additive to what many others have done in patient safety and quality.

You have a broad definition of preventable harm — one that includes inappropriate care and loss of dignity.

In conversations with many leaders in health care, but also with patients and families, it became clear to us that … inappropriate or excessive care also creates harm. And, in conversations with patients and family and bioethicists, it became clear that being alienated from the care process — losing one's dignity and respect — is also a harm and is preventable.

Are those areas quantifiable, though? Can you measure them as you can an infection or other medical error?

When we started to look into loss of dignity and respect, we came across a significant amount of literature on patient satisfaction. We believe that it is much more than if someone is satisfied in customer service. We believe that dignity and respect are measurable because in our conversations with patients and families, they actually gave specific instances where they felt that they weren't respected or treated as a person. When we did further research, a majority of patients in some studies indicated that they wanted to be involved, but were not; they wanted to be informed, but were not; they wanted to participate in their own care, but felt that they weren't given that opportunity, and that was a loss of their dignity and respect.

In conversations with health care professionals, as they encountered the system as patients or took care of a loved one, they also saw many instances where the health care delivery system did not provide that level of compassionate care. Part of the work of the foundation is to identify the meaning of dignity and respect. How do we identify it by talking to families and patients, and once we have that measurement, how can we improve such things?

It used to be that patient satisfaction was not a measurement; in fact it was not generally believed to be an important part of providing care. Now, of course, patient satisfaction is not only expected, but it is measured and performance levels are actually scored. We believe that same kind of process can be applied to heretofore undefinable elements such as dignity and respect.

So do you envision a scorecard similar to HCAHPs for dignity and respect and patient engagement?

We are in conversations with some of the researchers who helped develop HCAHPs and who are looking at how it can be more robust and help create situations that increase patient and family satisfaction.

We've been talking about shared or informed decision-making for a while. Why hasn't it taken hold?

There are a couple of issues that have made progress slower than what we would like. The first is that it is a bilateral process. Health care professionals need to want the participation of patients and families in decision-making, which begins with inviting that participation and includes providing information in a fashion that the patient and family understand enough to participate meaningfully. And the patient and family need to want to learn more and understand that decisions are not always clear in terms of black and white; that there are nuances.

How can those hurdles be jumped?

One of the things we hope to do is partner with those who are currently in the field of patient and family engagement, patient-centered care and patient activation and develop a conceptual framework of what we mean. Our belief is that patient and family engagement includes informed medical decision-making.

What roles do dignity and respect and patient engagement play in reducing harm?

That is a research area we hope to work on with others — does engaging patients and families result in improved outcomes and reduced costs and improved safety? I would preface that by saying that ensuring the dignity and respect of patients and families and ensuring their engagement is inherently the right thing to do. Is there a business case for engaging the patient and the family? The preliminary evidence is extremely encouraging. There have been several studies that indicate that when given the opportunity and being well-informed, patients and families will often choose care that is less invasive and less costly.

What makes the Patient Care Program different from other initiatives currently under way to improve care? What's the key message to hospital leaders?

Improving safety and quality has previously focused on individual activities and items to include. What we are doing is taking a look at the end state that we desire. In this first phase, it will be the elimination of preventable harm. We believe there will be scale and dissemi-nation through a systemic approach that allows for replication.

The Bo-Linn File

Career spans more than 25 years, with experience in private practice, hospitals, health plans and medical research. Earned a B.A. from Rice University and an M.D. from Baylor College of Medicine.

John S. Fordtran, M.D., chief of gastroenterology, University of Texas Southwestern Medical School. "He taught me the professional values that still guide me every day: integrity, accountability, adaptability, respect and continuous learning."

What are you reading?
Thinking, Fast and Slow by Daniel Kahneman. "I'm reading it again, because it has innumerable insights for making better decisions."

What is your favorite quote?
"Knowing is not enough; we must apply. Willing is not enough; we must do." Johann Wolfgang von Goeth