Patient engagement has been called the "the blockbuster drug of the century," and there is ample evidence that people who are actively engaged in their healthcare are more likely to stay healthy, manage their conditions better and incur lower healthcare costs. But what's often not fully appreciated is how engaged patients can also help providers improve how they deliver care.
Patient engagement is at the heart of Aligning Forces Humboldt's efforts to improve healthcare in Humboldt County, Calif. Our journey began in 2008 when we implemented the Stanford Patient Education Research Center's Chronic Disease Self-Management Program, which we call "Our Pathways to Health." This program supports patients with chronic illnesses to better self-manage their care, and it has continued through our work with the Robert Wood Johnson Foundation's Aligning Forces for Quality initiative. Using lessons learned from the early adoption of "Pathways," we built strategies for engaging patients in a spectrum of activities, depending on their knowledge and interests and the time and skills needed. We distilled these activities into four pillars and integrated them into a patient engagement framework. The four pillars of our approach are:
• Engaging patients with chronic illnesses to better manage their own health;
• Engaging patients to use health information online and become peer leaders to support others in managing their health;
• Engaging patients by involving them in efforts to improve quality, patient experience and participate in system redesign; and
• Engaging patients as equal committee members working at the policy level.
The framework serves as a guide to support both organizations and patients as they engage in new activities together. It recommends skills needed of activity participants and support necessary to ensure project success. When these skills and responsibilities are spelled out, we've found that it helps alleviate frustration and contributes to a more meaningful experience. Let's explore each of the four pillars more in depth.
1. Engaging patients with chronic illnesses to better manage their own health
The initial pillar of our framework was driven by our efforts to engage patients with chronic illnesses in the Our Pathways to Health program. This is a free,15-hour, six-week, peer-led workshop that provides patients with skills to manage their chronic conditions. Since 2008, we have fielded 94 workshops with more than 1,000 participants, with 720 graduating from the program by attending at least four workshops. Alumni of Our Pathways to Health are hospitalized less and seek fewer physician appointments.
2. Engaging patients to help other patients better manage their health and use health information to make informed decisions
Our next goal was to encourage patients to use health information and support others in managing their health. These patients are well-positioned to become peer leaders for the Our Pathways to Health workshops. They are also receptive to using the alliance's public report to learn about local healthcare quality or talk to their physicians about getting the right care for their conditions.
3. Engaging patients by involving them in efforts to improve quality, patient experience and participate in system redesign
The third pillar is reflected in our work with the Humboldt-Del Norte Independent Practice Association to integrate patients in quality improvement, patient experience and system re-design efforts via a community collaborative program.
We involved patients in primary care performance improvement teams that are focused on improving the quality of care in their practice. We call these patient stakeholders "Patient Partners." The Patient Partners' role is to bring their personal perspective as patients or caregivers to inspire ways to improve patient care. Using this expert patient voice, Patient Partners serve as members of the performance improvement teams and help guide the development of intervention and improvement work in a patient-centered way.
Practices that were early adopters of the Patient Partner model tended to be those that already had implemented a quality improvement structure and were meeting on a regular basis. They did an excellent job of integrating patients into their efforts. For example, at one pediatric practice, Patient Partners designed laminated cards to help parents remember to schedule well-child visits and helped develop a survey to understand parents' objections to childhood immunizations.
Not every effort went so well. Some practices struggled with embracing structured quality improvement activities and the Patient Partner model. Even though they valued their Patient Partners' perspectives, the practices had a hard time engaging them in improvement conversations and activities, and often would miss the opportunity to engage the patient perspective on a certain area.
Overall, the reception to Patient Partners has been very positive. At each collaborative meeting, Patient Partners present their perspectives on a given topic, and their presentations are often rated as one of the most highly valued components of the meeting.
4. Engaging patients as equal committee members working at the policy level
Most recently, we've been working on the fourth pillar, where patients serve on committees enacting change in care at the community or policy level. We recruited patients to participate in our Surgical Rate Project, which examines variation in rates of preference-sensitive care in the area.
The patients in this workgroup were non-clinical community leaders, and included the chief of staff at the local university and an economic analyst for the county. They worked alongside specialists and primary care providers to understand preference-sensitive surgical rate variation in Humboldt County.
We focused on four different preference-sensitive conditions, including cholecystectomies, carotid endarterectomies, hysterectomies and coronary artery bypass grafts. We brought in clinical experts in each of those surgical areas to talk about indicators for those surgeries. The community group met with the experts in a "protected space" where they could feel comfortable asking questions to get the education necessary to have a meaningful conversation.
The three groups came together in a final meeting, and the community group made several recommendations for addressing care variation. One of their recommendations was that we, as a community, adopt shared decision-making so that treatment decisions reflect patients’ values and preferences.
We continue to treat the framework as a working document, and we constantly refine it based on lessons learned. For instance, in the last six months, we added an organizational readiness program for providers because we realized patient engagement isn't only about patients' ability to engage in their own health or quality improvement projects. It's also about how ready an organization is to work with patients.
We've noticed a transformation in our approach to patient engagement over the past several years. The success and growth of our patient engagement activities have helped us establish a norm in our community to ensure that the patient voice is present when developing new projects.
Jessica Osborne-Stafsnes is the project co-director and patient engagement specialist at Aligning Forces Humboldt, a project of the California Center for Rural Policy at Humboldt State University. She works on consumer engagement efforts by collaborating with patients and community partners to ensure that patient needs and perspectives are addressed across the continuum of care. She is the co-creator and coordinator of the “Patient Partner Project” which incorporates patients into ambulatory performance improvement teams.