Patient Engagement

Getting Granular About Speaking Up

If you see something, say something. From the U.S. Department of Homeland Security, to local school districts, to The Joint Commission, organizations are encouraging everyone to speak up when something doesn’t seem right. How we each respond to that directive is highly individual and often unexamined.

Most of the time, deciding whether and how to deliver feedback, complaints or warnings to those around us is subconscious and routine. In healthcare, however, it has never been routine for patients or family members to speak up about what they see, even or especially when the threat to their safety is urgent.

The patient safety movement recognized early on that the observations of patients and families provide information not available elsewhere. Patients and families, however, remain an underused resource in safety improvement. Most hospitals and providers don’t make it easy to speak up and don’t welcome input and feedback that comes in real time. Opportunities for patients and families to engage directly as members of the healthcare team have increased slowly over time, but incorporating their feedback into clinical care and making sure the process is inclusive and user friendly still represent a mountain of work to be done.

New research

Two articles published recently by BMJ Quality and Safety address the need to better understand how to help patients and families speak up effectively, especially when they perceive a problem in care. In one article (paywall), researchers describe a study of hospital patients’ self-reported feelings about speaking up when they perceive a breakdown in care. The study includes responses from more than 10,000 patients in eight hospitals in Maryland and Washington, DC. The results include many observations about complex factors that influence the level of comfort each individual has for speaking up.

The researchers acknowledge that what individuals consider to be a “problem in care” varies. They observe, “…whether a patient experiences a problem, depends at least in part, on what they define as a problem,” which also demonstrates the limitations of performing this kind of study. For example, patients with graduate degrees were apparently more than twice as likely to experience a problem in care than patients with less than an 8th grade education.  The article reports a wealth of data on a topic that should be a priority for further patient safety research.

In a related editorial (open access), Drs. Sigall Bell and William Martinez unpack some of the complexity surrounding decisions patients and families make about whether, when, and how to say something. Bell and Martinez say we need to employ “greater granularity” to understand how and why people speak up. In all circumstances, personal history and attributes strongly influence whether we choose to speak up and the style of our communication. In healthcare, navigating the choices and communicating effectively are especially difficult for many people, who must work within their own skills and limitations. Often, getting some help from healthcare providers and organizations would make the process of speaking up more effective and satisfying.

Speaking Up to Stop the Line

Bell and Martinez focus on patients’ ability to “stop the line” with their feedback in real time. This most urgent situation is also the most challenging. It’s one thing to ask a polite, general question; quite another to stop a clinician in his or her tracks while providing care.

Here, too, more research is needed to understand how this all works and then devise effective improvement strategies. Bell and Martinez call for long-term work to make changes and address barriers that relate to patients, clinicians and organizations. We know this takes time. In the meantime, the editorial helps create initial awareness – a good and necessary start. It opened my eyes to choices I make about speaking up, and will make a difference as I navigate healthcare as an engaged patient and family member.


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

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