Complementing existing literature on measuring health outcomes that is largely conceptual, this book focuses on simple, practical advice for measuring outcomes in a variety of settings. Written in an engaging conversational tone, readers will learn why measuring health outcomes is necessary in clinical practice and how these measures may vary between people and across care structures. Covering how to identify measurements as well as collect and analyze the data, the chapters lead readers through a series of logical steps to scaling up a measurement program. The workbook style allows readers to record their own notes and thoughts throughout the book, while the list of action steps at the end of chapters are tangible starting points for developing a measurement program of their own. Explores how to measure and think about outcomes in a way that sees the whole person, not just the medical or behavioral condition they have.

This how-to guide is intended for a broad audience of people working in health care, from direct care providers (e.g., doctors, nurses, therapists) to health care administrators such as hospital executives and health insurance company employees. It is written from my perspective as someone who has helped individuals and teams in inpatient, outpatient, and health plan settings measure health outcomes. This guide focuses on practical advice for measuring outcomes in a variety of health care settings. There are other instructional resources about outcome measure development, conducting outcomes, and/ or health services research. Over the years, I have watched people who want to measure outcomes get stuck because they didn’t have basic information about how to get started – how to turn their aspiration of measuring outcomes into real information that they could use to improve their practice. My hope is that this guide becomes a regular reference for you as you embark on the process of measuring outcomes. This is a process and not a “one-and-done” undertaking.

I have written this guide as though I were giving advice to an individual. The tone, therefore, is conversational. The guide draws from different conversations I’ve had over the past 20 years about the nuts and bolts of measuring outcomes. I will share with you what I’ve learned from my measurement experience throughout my career – from measuring outcomes of relatively rare conditions to measuring outcomes of more prevalent ones – including the techniques that I applied in each setting, as well as strategies to scale programs within organizations. While different medical conditions and/or care processes may require specific data points, the general steps to measuring outcomes are the same. In Chapter 6, I will describe ways that health care provider organizations can enable outcome measurement for individual clinical providers.

In discussing outcome measurement, it is important to acknowledge that we are not just talking about biomedical data. Rather, this guide will teach you how to measure data in a way that tells a broader story about a person’s health that includes their own perception and experience of what health means. While this guide does not focus on broad measures of public health, when thinking about measuring health outcomes it is important to keep in mind that health is largely impacted by factors outside of the health care milieu, such as where we live and what we eat.

You’ll notice throughout the guide that I generally refer to patients as people. While the word “patient” reminds us of whom we serve, there are also connotations from which we should move away. One of the original meanings of patient was “one who suffers,” or “enduring without complaint,” based on the word’s Latin root, patiens, which implies a sense of passiveness.1 Additionally, the word patient can imply a hierarchical and patriarchal social system that immediately puts the care provider a step above the patient as “more knowing.” In fact, both bring knowledge that is needed to improve the patient’s health. While the care provider knows more about certain areas, such as the disease process and biology, patients know much more about how the condition affects their daily lives, what it keeps them from doing, and so on.

In the same way, using the word “member” to describe someone who is part of an insurance plan obscures a person’s individual agency and contributes to a one-size-fits-all mentality. It can imply someone who incurs costs that the insurer or employer has to pay or not pay for. The word distances us from the person who needs the services to better their health and live the life that they want to live.

So, in this guide, I will refer to patients and members simply as “people” because, in fact, that is what they are: people like you and me. People whom we have the honor of caring for each and every day. People who need our help.

We are also going to consider the voices of family members and caregivers because measuring their outcomes is also critical. Poor caregiver outcomes can directly impact both patient outcomes and caregiving in and of itself by putting people at risk for higher levels of stress, depression, and anxiety.2,3

And one final note, I am writing this from my experience working in the US health care system. My hope is that the nature of this how-to guide will lend itself to being adapted and applied within the health care system where you live and work, and I send you my very best wishes.