March 5, 2015

Patients as designers: Planning care from the inside out

VITAL team members (front row) Andrea Hartzler, PhD; James Ralston, MD, MPH; Ed Wagner, MD, MPH; (back row) Andrew Berry; Tad Hirsh, PhD; Linda Kiel, MA; and Evette Ludman, PhD. (Not pictured: Luesa Jordan).

A GHRI/UW research team gets patients, families, and providers involved in user-centered design.

If you want to effectively and compassionately care for a patient living with chronic conditions, you have to consult an expert first, says Group Health Research Institute (GHRI) Associate Investigator James Ralston, MD, MPH. That expert is the patient.

To understand the importance of patient priorities, chronic care researchers say, imagine an older man with arthritis who loves music. He has a doctor who focuses on medications and a son who worries about the man’s risk of falling. But maybe the patient’s primary concern is being able to play his violin. “Too often,” Dr. Ralston says, “when we work with patients to manage symptoms and conditions, we fail to ask and understand the things that are important to them.” The starting point when planning care, says Dr. Ralston, is what matters to the patient.

Dr. Ralston and his team are learning how to include personal values and preferences when creating a plan of care for people with combinations of arthritis, diabetes, heart disease, and depression. They are studying people with several chronic conditions because their priorities—like playing the violin—can conflict with symptoms such as shoulder pain, or with disease management recommendations. Dr. Ralston and coworkers just launched a three-year study called VITAL (Valuing Important Things in Active Lives), with nearly $1.5 million from the Agency for Healthcare Research and Quality (AHRQ).

The VITAL team envisions using shared electronic health records to help patients and providers ensure that patient values and preferences are the foundation of a common understanding about care. The project aims to find communication methods that will enable more consistent and patient-centered treatment from the different providers a patient might see. The researchers are tackling this issue with user-centered design, which requires a multidisciplinary research team. In addition to Dr. Ralston, other VITAL team members include GHRI Assistant Investigator Andrea Civan Hartzler, PhD; Senior Research Associate Evette Ludman, PhD; Senior Investigator Ed Wagner, MD, MPH; Program Manager Linda Kiel, MA; and Programmer/Analyst Luesa Jordan; University of Washington (UW) Assistant Professor Tad Hirsch, PhD, and graduate student Catherine Lim of the Interaction Design Program in the School of Art; and graduate student Andrew Berry of  UW’s Department of Human Centered Design & Engineering.

What do patients want, and how should care-planning function?

The team is recruiting older Group Health members with multiple chronic conditions for the first stage of the VITAL study. The first participants are using innovative—and fun—methods to show researchers what matters to them in their daily lives. “We’re giving people cameras,” says Dr. Hartzler, “so they can photojournal about what’s important to them: people in their lives, daily routines, and activities.”

The photos are just part of the information the researchers will gather. They will also interview study participants and their caregivers and family members at home, observe participants interacting with their primary care teams, and conduct focus groups to learn provider perspectives on incorporating patient priorities into care. The findings from this first stage of the study, Dr. Hartzler says, will guide the next stage: developing prototypes to support care planning for patients with multiple chronic conditions.

To create useful care plans that incorporate patient priorities, the VITAL team will begin with basic specifications based on patient and provider insights from the initial part of the study. User input will continue, with physicians, patients, and caregivers collaborating on designing prototypes for interactive care planning. Since participatory design is a new method for health services research, the scientists will also evaluate its value in improving the design of tools that support care.

What might the prototype care plan look like? Though Dr. Ralston has expertise in health IT (information technology) and Dr. Hartzler has worked on Web-based interactive health tools, both emphasize that the components of care-planning won’t necessarily be electronic. “We’ll find out when paper documents, telephone conversations, or in-person contacts are the best way to ensure mutual understanding and communication between patients and providers,” Dr. Ralston says. “The reason we’re engaging with people with multiple chronic conditions is to find out what matters to them and how they think about health and care. Before we can develop useful new technology, we first must understand what is most important to people.”


by Chris Tachibana