ven with the best of intentions and experience, efforts to design patient-centered processes often don’t include the perspective of the key stakeholder: the patient.

Enter the University of Utah Health Patient Design Studio, a group of patients who meet with improvers from across the health care system. The designers are both patients and caregivers. Some are healthy, some are chronically ill; some feel comfortable with technology and others are technology novices. All are passionate about improving the delivery of health care.

For the last 4 years, the Patient Design Studio has met monthly, providing feedback on a wide range of improvements, from pre-endoscopy instructions to physician communication. After 75 improvements, 3 themes are most prevalent and applicable to anyone looking to make their care more patient-centered.

Information: “I want clear and direct communication”

Patients want us to be as clear and succinct as possible when telling them what is expected. Many improvement projects include new patient instructions, or informational items, such as a signs, apps, or even video. Improvers’ first impulse is to over or under explain why something is necessary, or even sugarcoat information out of kindness. But too much or too little information feels confusing and sometimes disingenuous—the exact opposite of our intent.

For example, we began placing hand sanitizer pumps next to palm scanning equipment in the outpatient clinics. The improvement team wanted to know the best way to tell the patient to use the hand sanitizer—put a sign on the sanitizer to explain the benefits? Train all front desk personnel to explain the benefits? The designers had a much simpler solution: ask each patient to put out their hand and squirt in sanitizer. “We don’t need you to explain the importance of clean hands, we just need you to make it easier for us to do it.” On simple steps like using hand sanitizer, communicating exactly what you need from the patient helps the patient feel safe.

"Communicating exactly what you need from the patient helps the patient feel safe."

Sometimes we don’t provide enough information that addresses patients’ worries. When you’re an expert, it's challenging to remain connected to what worries patients. When the physical therapy team came to the Patient Design Studio, they asked how University of Utah could direct patients with low back pain to the treatment proven to be more effective: see a physical therapist first, before seeing a physician who specializes in physical medicine and rehabilitation. The designers explained that just telling the patient the benefits of seeing a physical therapist wasn’t enough. They recommended addressing the patient’s worry head on—we’ll address your pain now, you’ll still be able to see a physician, and the physical therapist and physician work together as a team.

Consider me from the start: “Focus on my why, not your why”

We often design improvements based on our definition of quality. But there’s a disconnect between our definition of quality and what patients define as quality. Patients assume that they are safe and that their clinicians know the right evidence and diagnosis.

Our designers have taught us that patients perceive every step, even the non-clinical steps, as part of the quality of care. For patients, our ability to explain demonstrates quality. When something isn’t clear, it doesn’t feel like quality. Clear information means explaining around why it matters for the patient, not why it matters for us.

"Clear information means explaining around why it matters for the patient, not why it matters for us."

The endoscopy team came to the Patient Design Studio after they had to turn away more patients who had incorrectly performed the preparation necessary for an endoscopy. The preparation is arduous, and patients were frustrated. The team started with a six-page education document provided to patients. The designers’ feedback: while it might be evidence-based, it’s clear as mud. Provide quick access with easy to understand pictures about the things most needed.

When and how patients receive lab and biopsy results is a source of anxiety for many patients and an important conversation for clinicians. Dr. Maia Hightower asked the designers about releasing results through MyChart, a patient’s personal online portal. Specifically, she wanted to know if we should delay releasing results to allow the clinician more time to follow up with a patient. The designers agreed that results should be released 24 hours after the clinician has access to them (not immediately). The designers’ feedback: results belong to the patient, not the health care system or the clinician. Timely communication with patients is crucial regardless of when the lab results are received.

Trust: “Just because I disrobe in an exam room doesn’t mean I trust you with my data”

Trust is key in health care. We want patients to trust us and to trust diagnoses and treatment plans. The designers have taught us that patients are in a vulnerable position. But vulnerability does not equal trust. Just because patients disrobe in an exam room doesn’t mean that patients trust all aspects of the health care system.

Numerous teams from across the health system have come to the designers to ask about collecting more information from patients. From simple questions such as “what is most important to you, today?” to complex survey instruments, patients have strong concerns about how we collect information from them and what we do with it.

The patient-reported outcomes team came to ask the designers how they could explain the value of answering a lengthy survey about mental health and physical function. The designers wondered about the benefit to the individual patient—would the physician or provider talk to the patient about their responses? If not, how would the information be used? They were very skeptical about information gathering for population-level analyses because of ongoing news headlines about information security. Their feedback: be clear about what you’re doing with my information, and ask for my permission.

We’re listening

Listening to patient feedback and using the information to get better is a cornerstone of the University of Utah Health. If you have an improvement or problem you’d like to bring to the Patient Design Studio, contact epe@hsc.utah.edu.