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"If we dismiss the wishes of patients about how their care should be delivered, we cannot say we provide high-quality care."
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Trying to Define Quality? Listen to Your Patients

By Joe Mando | Wednesday, January 2, 2019

Trying to Define Quality_Listen to Your Patients

For Clement Asare, the most painful part of his experience as a patient wasn’t the medication errors or physical injuries he sustained in the hospital. It was the unpleasant way he was treated during his hospitalization.

Six years ago, he endured a serious car accident and underwent several hospital admissions that left him with pressure ulcers for three years. But the harm that impacted him most was the repeated disrespect he received from the clinicians who were entrusted to care for him.  

IHI invited Mr. Asare to meet with health care leaders and government officials who had gathered to design IHI’s Africa Hospital Patient Safety Initiative (AHPSI). In the following interview, Joe Mando, IHI’s Director of Operations for Africa, shares his reaction to Mr. Asare’s story and how it has shaped the development of AHPSI’s patient safety program.

Why did IHI invite Mr. Asare to share his story of patient harm?

Providers have historically practiced medicine in a culture that doesn’t solicit patient perspectives. When patients ask questions, physicians often view this as a challenge to their expert authority. As a result, patients who advocate for themselves are often dismissed as “difficult.” The gap in expertise can intimidate patients into letting their concerns go unexpressed.

We invited Mr. Asare to share his story because we wanted the voice of the patient to inform the design our safety program. In every other industry, the customer holds the power to define quality. Unfortunately, the same isn’t yet true in health care. Providers generally determine what quality care is without input from their patients. High-quality care isn’t only what clinicians determine is effective – it must also address what matters to patients. If we dismiss the wishes of patients about how their care should be delivered, we cannot say we provide high-quality care.

How did Mr. Asare’s story impact the development of AHPSI?

His story exposed flaws in the health care system that leaders already know, but it made those challenges more vivid for them to acknowledge openly. His experiences of harm occurred in the same facilities in which these medical professionals work. His presence in the room gave people an opportunity to listen and reflect on the impact of harm on patients. It was a reminder that patients and their experiences must always be our priority.

However, listening to his story is only the first step in the process of designing patient-centered quality care. It would be a mistake for us to regard the contribution of one patient among all those seen by more than 25 health providers as sufficient patient engagement. In my view, we must develop new models of patient engagement that gather input from a broad base of patients on a consistent basis. Current methods are often insufficient to solicit feedback that accurately represents all patients and substantially influences their health systems continuously. For example, many hospitals use patient satisfaction surveys, but their results aren’t generalizable. Most patients who complete these surveys hold strong feelings about their experience of care and tend to be the ones who are more confident about advocating for themselves. As a result, providers don’t always gain a full picture of how patients perceive their care.      

For the AHPSI program, we are considering the value of a Patient and Family Advisory Committee, which has proved beneficial in the United States. In concept, the committee represents patients from various backgrounds and with different medical needs. However, a potential pitfall this idea presents is that members of the committee may gradually become part of the health system and offer only a limited range of perspectives. As a result, we may only hear the voices of the privileged few. In the AHPSI, we may need to provide such an advisory committee with the tools and steps to solicit input from their constituents on a regular basis.

Is it possible to increase patient engagement to reduce medical harm in settings where providers have excessive workloads?

Addressing excessive workloads and burnout among staff is a good place to start to increasing patient safety. Burnout can compound communication errors between clinicians and patients. In developing countries, patient-provider ratios are exceptionally high. However, leaders must also create an environment in which staff feel a sense of autonomy and agency. When providers feel that their leaders are listening to concerns about their working conditions, they will have more capacity to treat patients with respect and dignity even if their conditions do not improve dramatically.

Any final thoughts to share with providers working to reduce medical harm?

Medical harm is not only the clinical error of providers but also its impact on patients. Harm is what the patient experiences, and the best way to understand it or to measure it is to simply ask patients about their experience. We must hold ourselves accountable to our patients’ perception of their safety and harm. Patients in developing countries often feel psychologically unsafe to voice their perspectives. Clinicians must provide a safe environment where patients can honestly discuss practices they view as harmful. Patients are the true measure of whether we are making a positive impact on the quality of care.

Editor’s note: This interview has been edited for length and clarity.

You may also be interested in:

Listen to Patients: The Discomfort Is Worth It

Universal Health Coverage Without Quality Care Is Empty Rhetoric

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