Patients battling chronic diseases such as asthma, diabetes, hypertension, and HIV have complex and often overlapping medical needs that our health system has struggled to meet. There has been progress in recent years, thanks to new tools and strategies developed for this challenging population by pioneering quality experts. General and family practice groups increasingly tap into these resources to help their patients with chronic conditions stay healthier, avoid hospitalizations, and remain engaged in their family lives, work and communities.
Yet this trend is still in its infancy. In particular, one fundamental gap remains in our work with chronically ill patients. Clinicians are trained to diagnose, instruct, and take charge of the treatment process. But evidence increasingly shows that patients with chronic disease do best when they themselves take a leading role, making informed decisions about health goals and pursuing them confidently, with caregivers as partners, offering support, education and practical help in overcoming barriers.
Engaging Patients as Partners
“New Health Partnerships: Improving Care by Engaging Patients,” formerly known as "Quality Allies", an ambitious national program funded by The Robert Wood Johnson Foundation (RWJF), with additional support from the California HealthCare Foundation (CHCF), is addressing this challenge. The three-year, $3.75 million dollar initiative will follow nearly 25 ambulatory care teams nationwide as they design, test, refine and ultimately spread best practices in self-management support.
“We know we need to get more patients more involved in their own care, we just don’t know how to do it well,” said John Lumpkin, MD, MPH, senior vice president and director of the Health Care Group at RWJF. “By learning how to provide more support for self-management, New Health Partnerships can help us achieve care for chronic conditions that is more patient-centered.”
Doriane Miller, MD, of Rush Medical College and Stroger Hospital of Cook County in Chicago, Illinois, is the National Program Director of New Health Partnerships. With expertise in patient self-management through extensive work with the Health Research and Educational Trust, the research arm of the American Hospital Association (AHA), Miller spearheaded an initial phase in the project, an 18-month RWJF planning project. That pilot, completed in May 2004, confirmed the potential rewards of promoting patient self-management support.
IHI is administering New Health Partnerships as the national program office and will orchestrate the multi-level components directed by experts from leading organizations in chronic care and patient-centered care research: the MacColl Institute for Healthcare Innovation, Center for Health Studies in Group Health Cooperative of Puget Sound, Washington, and also the Institute for Family-Centered Care in Bethesda, Maryland.
Building on the Chronic Care Model
For some years the guiding principle behind improved care for patients with chronic conditions has been the Chronic Care Model, a care delivery system developed by Ed Wagner, MD, MPH, and colleagues at the MacColl Institute. The model presents a framework for managing chronic disease based on a set of six components that are addressed in parallel by a coordinated treatment team. Among other factors, the model calls for using technology such as disease registries, ensuring a practice is equipped to make treatment decisions based on proven science, building a well-designed care team, and strengthening patients’ support networks by tapping into community resources such as local agencies, state programs, and schools.
Above: The Chronic Care Model, a proven care delivery system, is composed of six elements that the treatment team helps the patient address in parallel. New Health Partnerships is targeting gaps in one key area: self-management support.
Self-management support is one element of the Chronic Care Model, and, according to Doriane Miller, it is both the most promising and least understood by health providers today. Miller explains: “Evidence suggests that successful implementation of the Chronic Care Model rests on self-management support. But this is the piece we don’t get right. We’re not good at understanding patients’ values, finding out what’s important in their lives and what they can contribute to their health care.” Because of this, says Miller, self-management support will be a central focus of the New Health Partnerships initiative.
The Core of Self-Management Support
Miller defines self-management support in simple terms: “It starts with collaborative goal setting, also called shared decision making. This means, the physician sitting down with the patient to have a conversation and make a plan together. So, for example, instead of the physician saying: “You have diabetes. I want you to lose weight,” she says: “OK, you have diabetes. We knew this was a possibility because it runs in your family. Let’s figure out what we can do to help you manage this, to stay as healthy as you can. Here is a list of things that will help: get more exercise, change your eating habits, and stop smoking. Are any of these things you would like to work on?”
So the patient plays an active role, targeting behaviors that he or she will actively work on changing based on the context of his or her own situation and personal priorities. Miller stresses how important this can be: “Research shows us that outcomes improve for patients with chronic disease when we help them set goals: specific, achievable, and measurable goals that they feel confident they can reach. Confidence is strongly correlated with the ability to execute change.”
Once the goals are set, says Miller, the physician’s job is to help the patient achieve them by following up, staying connected, and helping to identify and overcome barriers. The process relies on communication and problem-solving work, with the provider offering moral support and practical resources — materials, information, tools and reminders from the office practice, as well as links to services in the community relevant to the patient’s condition such as YMCA programs, Heart Association activities, senior center classes, and so on.
New Roles in Primary Care
The benefits of such a strategy may seem fairly obvious, but leaders of New Health Partnerships agree that self-management support does not come naturally to physicians. According to IHI’s Laurel Simmons, Deputy Director of New Health Partnerships: “Self-management support is really a new process. It’s not about giving patients instructions and lists; telling them what to do for their asthma or congestive heart failure. It’s about engaging them as active partners in the treatment.” And providers’ unease with the process is somewhat understandable, adds Simmons: “Physicians aren’t trained to work collaboratively with patients, to communicate and build the right kind of relationship. So they may need new skills and tools. They also need time, which the health care system doesn’t give them right now. And patients have to learn to think differently also.”
The next step after setting goals is often writing up a Shared Care Plan, says Miller. This is a simple document summarizing the agreed-upon actions related to the patient’s condition — a reminder tool for the patient to take home. It might say: “For the next two weeks I’m going to cut out junk food and sweets between meals and go for a half-hour walk four days at lunch time. Then I’m coming back for my next appointment on ‘x’ date and the nurse will check my cholesterol level.”
IHI’s Simmons says that the collaborative process behind the Shared Care Plan is “a pillar of self-management.” It is based on proven behavior modification and motivational interviewing techniques. The plan acknowledges the myriad of components that affect a patient’s health, breaking these down into objectives and specific tasks to achieve improvements.
Background and Components of Quality Allies
New Health Partnerships is the third major RWJF program that IHI will be managing, with Pursuing Perfection and Transforming Care at the Bedside already underway. In some ways, says Simmons, this newest project will be more structurally complex: “We’ll have a large and geographically removed set of participants; leaders and faculty throughout the country focused on different components, each with particular expertise and representing distinct organizations.” Simmons adds that, because of these challenges, IHI’s experience in leading spread of successful quality improvement and its expertise in distance learning will be especially valuable.
IHI also works with the California Health Care Foundation in other initiatives, including development of the California Improvement Network – Better Ideas for Chronic Care.
New Health Partnerships leaders are now assembling teams from a group of more than 60 hospitals invited to apply to participate. Fifteen ambulatory care teams will be chosen nationally, along with an additional five from California. A faculty team is developing materials and tools, gearing up for the first Learning Session in the fall of 2005. There is also a National Advisory Committee providing guidance for the project composed of experts in the field as well as patients and family members.
A key component of New Health Partnerships will be a Learning Community (LC), using innovation strategies designed by IHI to further develop improvement concepts in areas where best practices do not already exist or are not fully mature. For example, in other initiatives, IHI uses innovation methods to explore how to improve flow through acute care settings, reduce hospital mortality rates, and improve reliability in key clinical areas. Judith Schaefer of the MacColl Institute will direct the New Health Partnerships self-management support Learning Community.
Another major element of New Health Partnerships will be web-based virtual learning communities. Two distinct communities will be developed and housed on IHI.org. One will serve providers implementing self-management support, offering interactive training in the practice of self-management support. This site will feature educational tools, program materials, access to evidence-based research on collaborative self-management support, and links to resources in the field. It will also provide the means for virtual meetings and forums for discussion, interaction and questions. The provider website will also be managed by the team from the MacColl Institute.
The other virtual learning community will be designed solely for patients and their families. Beverly Johnson of the Institute for Family-Centered Care will direct this website. IHI’s Laurel Simmons says: “This will be IHI’s first foray into building consumer-oriented content on our website. More important, it’s new territory for health professionals: interacting with patients, supporting them, and empowering them to manage their health using the web.”
The final elements of the program will be an external evaluation arm, which will be directed by Seth Emont, PhD, of White Mountain Research Associates in Danbury, New Hampshire, as well as a communications effort to “spread the word,” says Laurel Simmons.
A New Paradigm
Simmons and her colleagues are uniformly optimistic about New Health Partnerships: “This is truly what we mean by ‘patient- and family-centered care,’ and though pieces of this work have been studied successfully, no one has designed a comprehensive, reliable solution. It’s been an insurmountable problem: how to build a viable practice where patients stay healthy and patients, their families, and providers are satisfied. We really think we can make headway on this.”
For her part, Doriane Miller sees the potential to help transform an obsolete model of primary care: “What excites me most is bringing patients to the table as partners, the opportunity to change the ‘power structure.’ This is long overdue; the old paradigms are not working. Physician behavior hasn’t changed even though we’re not seeing improved outcomes in chronically ill patients. Old patterns are hard to change, but I think New Health Partnerships could ease the transition to new and more effective ones.”
