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Mining Patients’ Wisdom for Safer Care

Engaging patients in decisions

Consider, for a moment, that you are a new physician. A patient, who is a lifelong smoker, comes to your clinic complaining of shortness of breath, and after conducting several tests you diagnose him with chronic obstructive pulmonary disease (COPD). Relying on your training, you prescribe medications, arrange for follow-up visits and describe activities that can help him better manage his breathing problem. You understand that even light activities — taking a shower, making breakfast, taking the dogs outside — can be challenging, making it difficult for him to breathe. These episodes can lead to great anxiety and possibly an ambulance ride to the hospital, with all its risks, stress and costs.

Despite all your efforts, the patient ends up in the emergency department two weeks later. Could you have prevented it?

Perhaps he had been overwhelmed by his new diagnosis and had trouble following medication instructions. He may have had difficulty taking his inhaler medicine properly, and the drugs never made it to his lungs. Maybe he did not have transportation to his follow-up visit and so did not receive the necessary medical care. Maybe he's struggling to stop smoking and has not found a program to support him in doing so.

Such scenarios, presented by patients with a recent COPD diagnosis, are real examples of what you learn when you engage patients in their care. At the Armstrong Institute, one of our research teams is partnering with COPD patients and their loved ones to design better ways to treat those who have the disease, help them manage their symptoms at home and avoid rehospitalizations.

The team has been guided every step of the way by a patient and family partners group, a group of a dozen people who are either COPD patients or their caregivers. Using focus groups and surveys, the team is learning which aspects of the disease are most important to people who have COPD and gaining insights about the barriers to managing COPD. For instance, many patients were eligible for special transportation arrangements to their follow-up visits, and yet few were capable of getting the necessary paperwork completed to take advantage of it.

Patient and family engagement has become such a hot topic these days in health care. It's an important — and long overdue — acknowledgment of the importance of including patients and their loved ones as important members of the care team who bring unique perspectives and insights that doctors and other health care professionals may not have.

This is a change from the entrenched hierarchies of medicine and our understanding of who possesses wisdom. In hospitals and clinics, the greater your years of training, the more wisdom you are assumed to have: Senior doctors know more than junior doctors, who know more than nurses, who know more than patients and family members.

Yet such formal training confers just one type of wisdom. Another important domain — the wisdom that comes from experience with a disease and with a given patient — can give us practical knowledge of what might work and what doesn't. And in this pillar of wisdom, the pecking order is basically flipped, with patients and their loved ones at the top, followed by the health care professionals who spend the most time with the patient and ultimately by the doctors.

Health care professionals are increasingly tapping this other wisdom by engaging patients and their loved ones. Strong evidence shows that when this happens, patients have better outcomes, cost of care is lower and work is more enjoyable for health care professionals.

Engagement can take many forms. In the hospital, for example, nurses might conduct their shift-change reports in the patient room, rather than at the nurses station, to give patients and family members the chance to ask questions and get up to speed. More hospital staff nowadays use communication boards mounted in the hospital room that list important information, such as new or existing medications, discharge goals and provider contact information. Some physicians try to better understand patients' goals before pursuing aggressive treatment regimens that may produce suffering. Hospitals are removing barriers, like visiting hours, that separate patients from their loved ones.

And we are seeing that this can be taken one step further. Aside from participating in their own care, patients and their loved ones increasingly are helping us to actually design safer, more patient-centered systems. It's not a novel concept, yet it's been gaining traction in recent years, with funding support for projects nationwide from such organizations as the Patient-Centered Outcomes Research Institute. We're making sure that research addresses questions that are important to patients and that the research produces answers that can be acted upon.

The COPD study, led by my colleague Hanan Aboumatar, is one of them. Another one, here at Hopkins, involves developing a video to guide patients on advance care planning before major surgery. Patients know that any surgery involves an element of risk and that they might have complications or even die. But as another colleague, anesthesiologist Rebecca Aslakson, has learned, many do not consider the possibility of a prolonged stay and slow decline in the intensive care unit, where they are kept alive by machines, as one of those outcomes. So Aslakson's team has partnered with patients and family members on an educational video that aims to educate patients considering major surgery. It will help convey the importance of weighing issues like whether they wish to be on a ventilator and determining who can make decisions on their behalf if they are unable to do so on their own.

At the onset, the research team believed the video's goal should be to reduce stress and depression for patients before surgery. But late last summer, they rented a booth at the Maryland State Fair for 10 days and asked passersby to rate the importance of 12 potential goals for the video. More than 350 self-described surgery patients took a break from the rides and carnival games to complete it.

And the research team learned that their assumptions were off the mark. Way off. Reducing anxiety and depression was the least important to patients, who explained that no matter what they were going to be anxious before surgery. There was no point trying to change that with a video. What mattered most to them, they said, was that the video would help them to have meaningful discussions with clinicians about their goals and wishes for care. That finding fundamentally changed the direction of their study, says Aslakson.

What if we had never asked patients for their thoughts? Sadly, that's how many research and improvement efforts have been conducted in health care, implementing interventions that are off the mark and neither help patients nor improve their health. But in sometimes subtle ways, patients and family members today are helping steer our efforts more often, contributing their wisdom and giving us a better chance of developing solutions that work in the real world.

Health care will be safer — and patients' goals will more often be met — if we partner with patients and their loved ones, offer them the opportunity to share their ideas for improving care and listen and respect their wisdom.

This post first appeared on the U.S. News and World Report Patient Advice blog.


Peter Pronovost

One of the world’s leading authorities on patient safety, Peter Pronovost served a the director of the Armstrong Institute, as well as senior vice president for patient safety and quality, at Johns Hopkins Medicine from 2011 until January 2018.

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