Being hospitalized or having a serious illness can be overwhelming for patients — not only because they are anxious about their health but because they don’t know how to navigate the health care system. They might not know the right questions to ask when they need information from doctors and nurses. Health care professionals, in turn, might not realize that patients have important concerns. This can lead to poor communication, mistrust and worse.

A mother’s worst nightmare

“What is my main problem? What do I need to do? Why is it important for me to do this?”

Ilene Corina remembers this feeling well. “I didn’t know who to trust and was not sure if I would ever feel safe using the health care system,” she says. Ilene had recently lost her young son after he had a routine tonsillectomy. He began throwing up blood a few days after surgery. “Repeated trips to the emergency room were met with, ‘Don’t worry, he’s fine,’” Ilene recalls. But a week after her son’s surgery, he died. “Who would learn from this tragic mistake of a little boy bleeding to death from getting his tonsils removed?”

Ilene did.

A crash course in advocacy

When she became pregnant with her third child, she was forced to learn everything she could about advocating for herself as a patient. “I was on bed rest and advocating for my unborn child. I was told this pregnancy could not be saved, but I asked the doctors to try. Giving up wasn’t an option.”

The baby was born premature and spent four months in neonatal ICU. During that time, Ilene says, “I learned from his nurses about being part of the team. We worked together to care for him.”

Since then, Ilene has been on a mission to share her knowledge with other patients and medical professionals. She attended a conference for the National Patient Safety Foundation in 1999. “This was when the first Institute of Medicine report was being released that 98,000 people die in hospitals from preventable medical errors,” she says.

 Patients, families and health care professional all want the same thing: what’s best for the patient. “We just didn’t have the same vocabulary,” she explains.

Giving patients a voice

Ilene looked for ways to bridge that gap. She started the Pulse Center for Patient Safety Education & Advocacy, where she found that relatively simple actions — like developing door signs and chart signs for patients with special needs and disabilities — could make a difference.

Ilene has also focused on teaching patients how to take charge of communication with their doctors. “The NPSF’s ‘Ask Me 3’ is a great way to encourage patients to start the conversation. What is my main problem? What do I need to do? Why is it important for me to do this?” Necessary conversations between patients and doctors are more likely, she says, “when a patient has tools to begin the dialogue.”

Ilene and the NPSF are not alone in this effort. Indeed, the Agency for Healthcare Research and Quality reports that patients who are involved in their care get better outcomes. Ilene notes, “It has to do with making the patient and their family more responsible for being part of the team.”