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Leaders Perspective: Creating Better Health Outcomes and Health Experiences

Friday, June 21, 2019
Scott Wallace, Elizabeth Teisberg and Chris Ulack Imagine health experiences that deliver vastly better health outcomes for patients while treating them with courtesy, dignity and respect. Those experiences don’t begin—or end—at the doorstep of a clinic. Over ten years, we have worked with many groups of patients experiencing a wide range of health circumstances and care experiences within and beyond the embrace of medical care. The Value Institute for Health and Care uses a form of qualitative research that we call the Experience Group methodology to understand patients’ experiences with their health, as well as their health care. Many of the insights from this qualitative reseach are surprising in light of the conventional wisdom about health care.

We see consistently that the outcomes that matter most are not a vast or complicated array on the meta level. When we talk with patients about their experience with their health, they identify three kinds of outcomes as most important to them and their families. One is capability. Patients emphasize being able to do the things that will allow them to regain or improve their normal lives – the abilities that allow that person to be themself. These often align with what clinicians know as functional outcomes. The second is comfort. People seek care to reduce suffering, experienced as physical and emotional pain. The third is calm. Patients speak of reducing or eliminating the disruption and turmoil they and their family experience as a result of how care is organized and delivered. Together, capability, comfort and calm are the outcomes of an excellent experience of health and care.

Patient experience leaders are experts in enabling calm in health care. They are making important strides in helping the care community recognize the importance of achieving calm, together with the significance of capability and comfort. Expanding caregivers’ perspectives beyond the walls of the clinic is an important factor in enabling those improvements.

Traditionally, feedback on patient satisfaction, experience and outcomes is collected after care. Over the last decade, we’ve learned that patients want health care providers to understand more about their health outcomes during care, which include a wide range of experiences with their health. We’ve also learned that when we bring together people to talk about health and health care, participants in any group talk about what they have in common. When we initially convened people with a diverse array of health circumstances and needs, they talked about non-health issues such as parking, wait times, billing issues and food. But when we’ve gathered a group of people who share a medical condition or set of medical circumstances—parents of children with asthma, young adults with cancer, or women with early stage breast cancer, for example—they talk about deeply personal aspects of their health and care. These groups of people, who have not previously met, will talk about the fear of losing a child to a sudden asthma attack, the implications of losing fertility at a young age, or the challenge of not knowing how to tell a loved one about their diagnosis. Insight about these shared concerns enables change in care delivery that can improve the outcomes of a patient’s experience.

In convening these conversations among patients, we’ve noticed that we learn the most when we as facilitators speak the least. Instead of posing questions, we seek to start conversations among the patients or family members and then listen and observe. From their interactions, we learn about the shared needs of patients that are often unarticulated, the gaps in their care and obstacles to their health, and we learn about the health outcomes that matter most to them.

This method differs from more conventional focus group research in many ways, but perhaps most importantly in that we don’t seek to test a hypothesis. We go into these conversations aware that we don’t know a lot about living with a particular condition and are respectful of the fact that patients living with that condition have extraordinary expertise.

During an Experience Group session, we guide the discussion to topics such as what participants know about their condition, what they fear most about their condition or what they’ve learned that is most helpful in managing their health. We try not to ask direct questions as that shifts the discussion from a conversation among the participants to a Q&A with the facilitators. We listen as the participants discuss the topics, and we watch how they react to each other’s comments. For example, when a participant in a session discussing life with a colostomy discussed the fears that led him to sleep in a recliner for a year, another participant reached over and took his hand. In that silent gesture and the eyes of the other participants, we saw empathy and a recognition that his story was not unique and his fears were widely held.

Listening to people talk about living with their conditions, and analyzing our observations using the framework of capability, comfort and calm, we develop insight about what really matters to people about their health and what they most need from their health care providers and others to improve their health. We also see pattens in what these individuals most valued or most struggled with in their interactions with their caregivers. Guided by those insights, we can work with an array of clinicians and administrators to redesign care that more effectively delivers the experience patients want most: the experience of better health.

Scott Wallace is managing director, Elizabeth Teisberg is executive director and Chris Ulack is Experience Group manager of the Value Institute for Health and Care at the University of Texas at Austin. Correspondence should be directed to Scott Wallace at Scott.Wallace@Austin.UTexas.Edu. The Value Institute website is at: https://dellmed.utexas.edu/units/value-institute-for-health-and-care

Tags: communication, patient engagement, empathy

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Leaders Perspective: Creating Better Health Outcomes and Health Experiences

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