Patient and Citizen Engagement for Health: Lessons from Jönköping County, Sweden

Aug 20, 2015, 12:00 PM, Posted by Galina Gheihman, Laura Leviton

What can a small Swedish county teach us about building a Culture of Health in the United States? We visited Sweden and brought back some valuable lessons on patient and citizen engagement.

Copyright Guillaume Baviere

Imagine a society where everyone has the means and opportunity to make choices that lead to the healthiest lives possible––a society where health is valued by all, and no one is excluded because of chronic illness or other limitations. This is what we call a Culture of Health, and it’s what, in collaboration with others, the Robert Wood Johnson Foundation is working to build in the United States.

We know that to achieve this ambitious vision, we must look to––and learn from––promising approaches across industries, disciplines and geographic borders. This is why we recently visited Jönköping, a small county in south-central Sweden, where patient and citizen engagement has brought about remarkable results: kidney failure patients operate dialysis machines on their own schedule, complex patients—such as people with schizophrenia—actively participate in designing their own care and children’s preferences and experiences are listened to, so services can improve from the children’s point of view.

Jönköping is the world's laboratory for quality improvement and population health.
-Helen Bevan, Director, NHS Improving Quality, National Health Service of England

Source: Google Maps

Jönköping was first recognized worldwide as a center of excellence in health care quality improvement when it participated in the Robert Wood Johnson Foundation/Institute for Health Care Improvement “Pursuing Perfection” initiative. But its excellence predates that recognition: for 25 years and counting, Jönköping County’s health care performance has consistently ranked among the best in Sweden.

What’s relevant for us is Jönköping’s innovation in two key principles central to our Culture of Health Action Framework: integrating health and social services and achieving genuine co-production of health and well-being by patients and citizens, who are the experts of their own situation.

One of the keys to Jönköping’s success is that professionals throughout the region—nurses, physicians, social workers and others—begin each day by asking, “How could we do better?” To answer this, they rely not only on professional meetings (e.g., formal and informal collaboratives and teams, leadership-sanctioned strategic discussions) but also meaningful engagement of patients and citizens. In this way, workers in health and social care produce a Culture of Health not for but with the people they serve. They make improvement part of the routine, and ‘customer-orientation’ part of the improvement.

The integration of health and social care services is not easy—colleagues overseas and throughout the developed world all report major challenges. Even in Sweden, where both health and social services are funded primarily through taxes, jurisdiction issues can threaten handoffs and transitions. Counties run health care, but each municipality (and there are several in each county) provides its own social care services, with private clinics competing alongside these public systems.

This is what makes Jönköping’s approach to addressing these challenges particularly clever. They have turned integration of services into a quality improvement challenge, and engaged patients and citizens to not only help identify what is going wrong or can be improved, but to become an active part of the solution. A unique improvement resource, Qulturum, supports these efforts, along with Futurum, its research arm, and FoUrum, a collaboration of the municipalities focused on improvements in social care.

On our trip to Jönköping, we were able to see first-hand how they are working to build a Culture of Health, and found the following three examples of patient and citizen engagement particularly compelling.

The “Health Dialogue” for Population Health

As children grow and people age, new risks—and opportunities for wellness—take shape. “Health Dialogue” puts those life transitions on the agenda. School nurses do motivational interviewing of children at ages 10, 14 and 17. Primary care providers do the same with adults to address lifestyle choices and other concerns at ages 40, 50, 60, and now 70. These dialogues acknowledge the changes that come with development, adulthood and aging, focusing on prevention and self-management of disease. Nurses and primary care providers help people explore what is most meaningful in their lives going forward. Then they work together with people’s own capacity for self-care, as well as social and health care services, to ensure their goals are met.

“What Is Best for Esther?” Integrated Care for Complex Conditions

 The Esther Network has captured international attention. Esther is any patient with complex chronic conditions, and some acute needs, too. Esther is not any one real person, but a persona that represents the challenges any patient could face in a complex system. Esther can be an elder with several comorbidities, a complex patient needing multiple health and social services, or perhaps an individual with schizophrenia or dementia. Regardless of Esther’s condition, he or she fully participates in all aspects of care planning, and his or her story is the basis for coordination––patients are true co-producers of their care. The drivers for success are management support across the network and trained “Esther Coaches”––who work together with the patient and their team of health and social care professionals to ensure that individualized care plans are established that reflect each patient’s unique situation and stated wishes and needs. Each team member is reminded always to ask, “What is best for Esther?”

The “Children as Relatives” Project

The world over, children are the “forgotten relatives” of sick or dying parents and caregivers. Given the trauma of parental death, illness, or incarceration, and our knowledge about how such Adverse Childhood Experiences can influence both mental and physical health throughout children’s lives, this is a big public health issue. Swedish law says medical practitioners must explain what is going on to children in terms they can understand, but the quality of these conversations is variable. In a complex system, whose responsibility is it to speak to the child?

Jönköping’s answer is to use the approach they know best: they asked the children what they wanted to know. Each professional that touches the patient or child gets a checklist indicating what is necessary to do, ask and say. By collaborating across disciplines and sectors, professionals ensure someone is designated to speak to the child, or several providers share the task so a child’s needs do not fall through the cracks. Loving relatives, faith-based organizations, and teachers or school nurses often take part. This is quality improvement, citizen participation, plus an intelligent use of community and family assets all rolled into one!

Europe has better health outcomes than the US, possibly because it invests in social services and integrates them with health care. And yet, in Europe they bemoan the problems of coordinating—just as we do in the US! Sweden’s overall health and social care are some of the best in the world and still they find integration to be a challenge. Yet Jönköping shows that building a Culture of Health can be done—and that a collaborative culture of continuous improvement may be the best way to do it.

Galina Gheihman is a student in the New Pathway Program at Harvard Medical School. Read her full bio on LinkedIn.

Laura Leviton is senior adviser for evaluation at the Robert Wood Johnson Foundation. Read her full bio.