IHI Report from Whatcom County

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# Pursuing Perfection: Report from Whatcom County, Washington on Patient-Centered Care

**​The Challenge:** Providers in Whatcom County, Washington, wanted to more fully embrace the concept of patient-centered care. Although they were already working with patients in ways that focused on their needs and preferences, health care providers discovered that there is only one way to truly understand what patients want: Ask them.

**The Background:** Whatcom County is located in the northwest corner of Washington State, overlooking Bellingham Bay and the San Juan Islands, and bordering British Columbia, Canada. With an area of more than 2,100 square miles and a population of about 177,300, Whatcom County is home to a **unique alliance** of public and private health care providers, payers, and purchasers that has been working together for nearly ten years — in some cases across competitive lines — to improve care.

Called the **Community Health Improvement Consortium (CHIC)** of Whatcom County, this group works to increase safety and efficiency, reduce costs, and eliminate barriers — especially for patients with chronic conditions — across the entire system of care.

The Pursuing Perfection grant, the only one given to a **coalition of organizations**, is accelerating this improvement work for the provider organizations from CHIC, including St. Joseph Hospital (part of the PeaceHealth Health Care System), Group Health Cooperative, Community Health Plan of Washington, several primary care clinics, a cardiology practice, and the St. Joseph Center for Senior Health.

**The Situation:** Whatcom County wanted to increase its focus on patient-centered care. “Pursuing Perfection is aligned with the six aims of the Institute of Medicine,” says **Mary Minniti**, Special Projects Manager for Pursuing Perfection. “The first one we looked at was patient centered.” Minniti says something interesting happened at the first team meeting. “We were committed to transforming care, and to making it more patient centered. But there were no **patients at the table**,” she says. “How were we going to be patient centered without asking patients what that means?”

So some patients were invited to join the team. “It seems simple in retrospect, but it was revolutionary,” says Minniti. “We told them our ideas about improving patient-centeredness, and they said, gee, those are great ideas, but they won’t exactly help me be a **full partner** in my care.”

**Rebecca Bryson** is one of those patients. Bryson suffers from diabetes, cardiomyopathy, congestive heart failure, and a number of other significant complications; during the worst of her health crises, Bryson saw 14 doctors and took 42 medications. In addition to the challenges of understanding her conditions and the treatments they required, she was burdened by the job of **coordinating communication** among all her providers, passing information to each one after every admission, appointment, and medication change.

“Rebecca said if she were to dream up a tool that would be truly helpful, it would be something that would help her keep her care team all **on the same page**,” says Dawn Gauthier, a Pursuing Perfection team member and the project’s technical manager. Bryson described typical medical records as being “location- or process-centered, not patient-centered.” She also told her fellow team members about how difficult it can be for patients to **navigate a large system**. “Patients are in the worst kind of **maze, one filled with hazards, barriers, and burdens**,” she said.

**The Solution:** The collaboration between health care professionals and patients in Whatcom County produced dozens of ideas to improve patient-centeredness, including the creation of a patient-designed website called PatientPowerNow.org, which includes information about initiatives to improve patient centeredness, as well as useful information and tools for **self-management** of chronic conditions. Two of the most powerful new initiatives the group launched were designed to address Rebecca Bryson’s desire for better communication and coordination among providers and different parts of the healthcare system.

**Shared Care Plans:** A Shared Care Plan (SCP) is a document — either web-based or on paper — that allows patients to gather all their health-related information in one place. The document includes the patient's personal profile, health care team members, chronic and long-term diagnoses, self-management and lifestyle goals and action steps, treatment goals, names of prescriptions, medications and allergies, and advance directives. An SCP is designed to be much more user-friendly than a dense medical record, which typically keeps track of things chronologically and fragments information by individual provider and location.

Patients with Internet access can store their SCP on a secure website linked to PatientPowered.org, and can give permission to others — family members, providers — to view it as well. The SCP can be printed from the website, or can simply be kept on paper, and carried to appointments for background and review. If there is a change in medication, for example, patients update the SCP, sometimes with providers’ help. The electronic version has a feature that keeps track of updates and who has viewed the document.

Patient Shared Care Plan Team works with technical staff to improve the functionality of this personal health record tool.

Patient input has been key to the development of the SCP, says Kelly Hawkins, the project’s web coordinator, primarily through a subgroup of the Pursuing Perfection Patient Advisory Council devoted specifically to working on the Shared Care Plan. “Our original idea was that it should be a tool to help with **chronic disease management**,” says Hawkins, “but patients have pushed it more in the direction of a **personal health record** with some tools for chronic disease management.”

Hawkins says other ideas about the SCP were also modified as it was developed. “We thought the patient and primary care physician would work together to create the patient’s SCP,” she says. But the comprehensive nature of the document means it takes between 30 and 60 minutes to fill it out, time providers don’t have. The team realized that patients would need **encouragement and training** to start their own SCPs. So they worked with primary care providers to send letters to patients recommending they create an SCP, and encouraging them to attend a **workshop** to learn how to get started.

Having an SCP helps patients communicate effectively with providers, including and especially those in the emergency department (ED) at St. Joseph’s Hospital. “We have this nifty feature for patients whose medical records are in the hospital system,” says Dawn Gauthier, a technical manager on the Pursuing Perfection project, and one of the chief designers of the SCP. “When a patient is admitted to the ED, and a physician calls up his or her medical record, a pop-up note lets the physician know that the patient has a Shared Care Plan, and they can get a printout of it.” This instant access to a list of previous diagnoses, as well as current medications and allergies, can be invaluable in an emergency.

The electronic SCP can also serve as an educational tool for patients. “There are links in the Plan that take users to **educational information** about conditions, medications, or other things mentioned in the Plan,” says Gauthier. In addition, medical jargon and arcane shorthand commonly used on prescriptions (such as BID or PO, for “twice a day” and “by mouth,” respectively) are **translated**.

**Clinical Care Specialists:** The second powerful idea that patients promoted is the new role of the Clinical Care Specialist (CCS), a nurse or social worker who serves as a patient’s **coach, advocate, guide, and lifeguard**. “The Clinical Care Specialist’s job is to help get patients **activated** and engaged in the care partnership,” explains special projects manager Mary Minniti. “This takes care management to a whole new level. For patients with complex chronic conditions, the Clinical Care Specialist really serves as a **lifeguard**, because there are so many gaps in the system. The Clinical Care Specialist is **aligned with the patient**, not with the insurer or the clinic.” As a result, as long as they stay in Whatcom County, patients who switch insurers, clinics, or providers can stay with the same Clinical Care Specialist.

Some patients look to Clinical Care Specialists for help getting acclimated to the system and to become empowered as partners in their own care; other patients need Clinical Care Specialists long-term, and request their company and input during doctor’s appointments. In general, Clinical Care Specialists work over time with patients with the most complex health care needs.

“Clinical Care Specialists help improve continuity of care, responsiveness, and trust, and help prevent medical errors and omissions,” says Mary Minniti. “They provide **education and support** for patients and help them integrate their care plan into the routines of their daily lives.”

The Results: The use of SCPs has increased steadily since their introduction, with more than 600 online versions in use, and an unknown number of paper versions. A majority of patients with a Clinical Care Specialist experience improved or stabilized health status while reducing overall costs by $3,000 per patient. They report their experience of care as substantially improved.

“My CCS has helped me in too many ways to comment. She has improved both the safety of my care and my ability to care for myself. She has been an educational resource for both me and for my family. I don't even want to think about coping with heart failure without her.” - A patient