Empowering Patients to Be Their Own Advocates in Healthcare Safety

Despite a focus on patient-centered care and patient engagement, patients are, for the most part, not involved in discussions of patient safety and healthcare quality. Yet patients are the ones who are most affected by medical errors. A new study in the Journal of Patient Safety found preventable patient deaths may be as high as 440,000 a year — about 4.5 times the 1999 Institute of Medicine estimate. However, patients should not be portrayed as only victims or passive individuals — they need to be recognized and treated as active participants in their healthcare.

Ilene CorinaIlene Corina, president of patient safety education and advocacy organization PULSE of New York on Long Island, promotes partnerships between healthcare facilities and patients. To strengthen these relationships, her organization educates patients and family members about the risks of hospital stays and prevention efforts so they can be their own advocates in hospitals and other facilities. "We can't adequately partner for the best outcomes if we, the patients, have no idea what to expect or what we can do," she says.

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In addition to sharing facts, such as the number of patient falls and medication errors that occur, PULSE also teaches patients and family members how to best protect themselves and communicate with caregivers. For example, a patient's family member should notify the provider if he or she is at risk for falling. Ms. Corina also suggests designating a family member or friend as a medication manager to help keep track of the patient's medication in the hospital, at discharge and at home.

Communication: Teaching assertiveness and humility
An important lesson for patients is having the courage to speak up to providers to remedy a possible patient safety slip-up. For example, many hospitals are encouraging patients to ask physicians if they've washed their hands. While this can be an uncomfortable situation for both parties, a little bit of discomfort could prevent a very harmful infection.

"If you can give [your physician] a stool sample, you can ask him to wash his hands. It shouldn't be a big deal."

-Ilene Corina, president of PULSE of New York

The fact that this is a discomfiting conversation demonstrates how much work there is to be done in patient-provider interactions. "We expect our [physicians] to know if we have a venereal disease, but we can't ask them to wash their hands? That doesn't sound like a good relationship." Ms. Corina says. "If you can give him a stool sample, you can ask him to wash his hands. It shouldn't be a big deal."

Role playing these difficult situations can help patients become accustomed to open, honest dialogue about infection prevention practices. Ms. Corina suggests patients say something like, "I would feel more comfortable if you washed your hands." For physicians and other clinicians on the receiving end of this request, she says it's important to recognize how patients are feeling when they ask that question. Even if caregivers already washed their hands and are rushed, taking the time to wash their hands at a patient's request can build trust and ease patients' anxiety. "It's about the feelings beneath that [request] — 'I'm scared. I'm nervous. I want to feel secure and I need to know that you respect that,'" Ms. Corina says. Normalizing patient-provider conversations about safety protocols can thus not only lead to better outcomes, but can also build a healthier relationship between patients and their provider.

Supportive providers
It's helpful to have the support of healthcare providers when teaching assertiveness to patients, according to Ms. Corina. "We need people who work in hospitals at our side to say, 'It's true, we might forget to ask about you medication or allergies.'" Admitting that mistakes are possible does not weaken the provider's image, but instead empowers patients to stand up for their health and safety.

A recent commentary in the New England Journal of Medicine described the importance of encouraging patients to be forthcoming with their concerns — behavior that providers may at first think is annoying. However, the author learned from personal experience that being "annoying" or "difficult" can save one's own or a family member's life.

Telling stories
Besides teaching patients how to ask providers about their safety precautions, PULSE also teaches patients how to tell providers about their experiences with medical errors. Describing a personal encounter with a medical error can be a powerful tool in reminding providers why they need to be vigilant in preventing adverse events and why it's important to engage patients in their care.

PULSE talks with vulnerable groups of patients, such as Alzheimer's patients, transgender patients, teen moms and people with disabilities, about their concerns in healthcare facilities, and helps them communicate these concerns to hospitals and other providers. For example, the Long Island Center for Independent Living and PULSE's Patient Safety Advisory Council began working with St. Joseph's Hospital in Bethpage, N.Y., in 2012 to improve care for patients with disabilities. Through discussion, it was evident that one of the greatest concerns among people with disabilities in the hospital was losing their wheelchairs, walkers or other equipment. To address this concern, the hospital developed a protocol that included labeling equipment to ensure it always stayed with each patient.  They also have prepared their staff for treating patients with disabilities in other ways.

By including patients in discussions about safety — both learning from and teaching them — hospitals and other providers can improve quality and live up to the ideal of patient-centered care.

More Articles on Patient Engagement:

Limited Research Need Not Deter From Involving Patients in Hand Hygiene
Patient Safety Tool: Leadership Guide for Patient, Family Engagement
Patient Safety Tool: Working With Family Caregivers Toolkit

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