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Partnering with patients to transform health care is not happening fast enough.
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3 Ways to Amplify Patient Voices Right Now

By Gail Nielsen | Monday, November 6, 2017

At the IHI Forum in 2002, then IHI President and CEO Don Berwick asked, “Are patients and their families . . . someone to whom we provide care? Or are they active partners in managing and redesigning their care?”  This year, Berwick listed eight recommendations for where patient safety proponents should focus. “Patient Voice” topped his list.

For 15 years, my work in health care improvement has focused on listening to patients’ voices to increase patient safety and transform care delivery. I’ve successfully implemented health literacy techniques, developed patient and family advisory councils, and engaged patients in understanding and improving processes like discharge planning. The positive impact for patients, families, and care providers has been better care and more joy in work.

While it’s exciting to see the progress many organizations have made in recent years, it’s still taking far too long. It’s true that effective and lasting transformation starts with leadership engagement. We can also accelerate change by spreading simple and yet effective ideas for working with patients to enhance the delivery of care and reduce harm.

The following are simple, low-cost ways people around the world amplify patients’ voices in the delivery of care:

Introduce yourself to patients

Dr. Kate Granger, a 31-year-old physician, started this international campaign on Twitter called #hellomynameis while she was being treated for cancer. “Many staff looking after me did not introduce themselves before delivering my care,” she noted. “It felt incredibly wrong that such a basic step in communication was missing.” Within a year, the initiative she started on social media had the support of more than 400,000 doctors, nurses, therapists, receptionists, and other staff members across over 90 organizations, including NHS Trusts across England, Scotland, and Wales. People from all over the globe now participate.

Want to shape smarter, safer care for patients? Attend the IHI/NPSF Patient Safety Congress, May 23-25 2018, in Boston, MA. Learn more and register.

To introduce the #hellomynameis idea in your organization, ask clinicians and staff to treat all patients, service users, and families with compassion and start by introducing themselves during every first encounter. Start small — one person, one unit, on one day. Ask patients, service users, and families how important introductions are to them. Share what you learn, discover what gets in the way, tell the stories you hear, and encourage others to do the same. Join the global campaign.

Ask patients, “What Matters to You?”

The concept of asking patients “What matters to you?” rather than only “What’s the matter?” started with Susan Edgman-Levitan and Dr. Michael Barry. In 2012, Maureen Bisognano, then IHI President and CEO, presented the concept at the IHI Summit, and it has since spread to hundreds of organizations around the world. The simple act of asking “What matters to you?” helps increase clinicians’ understanding of important issues in their patients’ lives, aids in shared decision making, and can add joy in work.

Some US hospitals use a standard process called “Take 5.” Nurses sit down with a patient at the start of their shift and introduce themselves. They share the plan of care, ask what the patient would like to happen during the upcoming shift, and ask about their goals and expectations. The nurse finishes by asking, “Is there anything we can do to make your hospital stay easier?”

To give you an idea of how this might work, imagine a scenario in which a nurse hears about an angry patient during shift handover. Early in her shift, she takes five minutes to sit down and talk with him. She discovers during their conversation that the patient was upset over the restrictions on his fluid intake. She brings in a pitcher and cups to show him how much fluid he can drink. His relief is instant when he realizes it’s more than he assumed.

Another nurse discovers during a “Take 5” that a patient is distraught. She’s worried her cat will starve with no one home to care for it. The nurse arranges for someone to feed the cat, and the patient is more relaxed and ready to learn her plan of care and discharge instructions.

Use teach-back to improve communication

Clinicians around the world use teach-back to identify what patients and families understand about their care, including the critical things they need to know or do to stay safe and well at home. When we hear a patient say in his or her own words what we have asked them to do, we can clarify what we miscommunicated.

To use teach-back, explain needed information — without using medical jargon — to the patient. Then ask them to say what they heard in their own words. Be sure to use a tone that is respectful and not shaming. For example, you could say, “I want to be sure I did a good job of teaching you about how to stay safe after you go home. Could you please tell me in your own words which symptoms mean you should call your doctor?” You should also use teach-back with caregivers who will be assisting at home.

It’s also important not to assume that everything you’ve explained is clear just because a patient doesn’t ask questions. (Patients often do not want to “bother” us or appear confused.) Again, be respectful, but give patients ample opportunities to get more information or clarification. Ask questions like, “Is there anything in these instructions that could be difficult for you to do?” “Who will you call if you have questions after you leave?” “What might get in the way of carrying out these instructions?”

These are just a few of the techniques that have proven useful in busy clinical settings. When putting them into practice, consider not only what you learn at the level of the individual or site of care, but also what findings you can share across providers or settings to transform care for all patients. In this way, listening to the patient voice becomes integral to patient-centered co-design.

What helps you to hear the voice of the patient? Please share your ideas in the User Comments section below or on Twitter.

Gail A. Nielsen (@nielsega) is IHI faculty and was an IHI George W. Merck Fellow (2004-2005).

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