Many patients still feel uncomfortable voicing concerns or preferences to clinicians, even as experts push for greater engagement with patients around safety, according to a new study.
Researchers led by a team at Beth Israel Deaconess Medical Center surveyed more than 100 family members in intensive care units and more than 1,000 people online to gather a more complete picture of why patients may hesitate to speak up about their worries.
Of the family members surveyed, the majority—between 50% and 70%—said they may not feel comfortable speaking up to clinicians in certain safety situations, according to the study published in BMJ Quality & Safety.
Sigall K. Bell, M.D., director of patient safety at OpenNotes at Beth Israel and one of the study's authors, told FierceHealthcare that the findings have significant implications for how effectively clinical teams are developing "true partnerships" with patients and their families. Clinicians, she said, are typically open to these conversations, even if patients perceive that members of the care team aren't.
"Clinicians, I think, really recognize that patients and families play a key role, as they know the patient best," Bell said.
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Patient and family feedback can be especially important when treating terminally ill patients, since family members would have a greater understanding of the patient's wishes at the end of life.
The family members surveyed said they would feel more comfortable speaking up in certain situations. For example, 69% of family members said they would be confident discussing medications with their loved one's clinicians, while just 31% said they would feel comfortable expressing concerns about hand hygiene.
About half (52%) said they would speak up about conflicting information, and 46% said they would feel comfortable speaking up about a potential error.
The most common reason cited for staying quiet was concern about being labeled a "troublemaker," with 34% of family members citing this as a reason. In addition, 32% said they were worried that the care team was too busy to respond to their concerns or didn't know who to contact with their worries.
Bell said that the worry of being deemed a "troublemaker" hearkens back to the traditional "doctors know best" hierarchical approach to healthcare, which is changing as safety culture really comes to the forefront of the industry.
"I think we're undergoing a fascinating change in medicine over the last decade as the patient safety movement has gained momentum," she said. "What we're working towards is a level playing field where everyone is a capable and informed contributor."
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Providers that are looking to make it easier for patients to voice their concerns to clinicians need to first and foremost make it clear that their feedback is vital, Bell said. A number of providers are paving the way on this, with programs like MedStar Health's "We Want to Know" initiative informing patients and families early on that they can, and should, weigh in on their care. These conversations can be embedded in patient onboarding or orientation, and patients and their families could even be supplied with a simple checklist they could use to voice concerns.
One major challenge, Bell said, is providing patient feedback to clinicians in a way that's actionable. That's the next frontier for this type of engagement research, she said.
That effort will mean making sure patients are provided with the language or means to most effectively convey their concerns, and that it's integrated into clinicians' workflows without adding to the immense burden they are already under, she said.
"The key will be figuring out the mechanisms to ensure that feedback reaches clinicians in meaningful ways," Bell said.