Throughout history, social movements have galvanized wide-scale improvements in population health and quality of life. HIV/AIDS activists banded together to strengthen social services for patients, educate the public about the disease, and compel research and treatment investments that have relegated the condition to a chronic, manageable disease. The Susan G. Komen Breast Cancer Foundation (now called simply Susan G. Komen) brought the issue of breast cancer out of the shadows, raising billions of dollars and saving lives by making whole families aware of the importance of prevention and early detection. Thanks to Mothers Against Drunk Driving (MADD) and the Buckle Up Campaign, we’re all safer when we hit the road or go for a walk.
But what ignites social health movements? What inspires the masses to reject the status quo, change behavior, and fight for something better? At the Jewish Healthcare Foundation (JHF), we’re convinced that activated health care consumers are the key ingredient in sparking a movement—and they’re also the antidote to our population health woes. Activated consumers claim ownership of their well-being. They seek information on ways to prevent diseases, on diagnoses, and on treatments. They track progress toward their health goals and make wise choices each day related to diet, exercise, and sleep. They crave a relationship with providers, rather than a list of orders. And, as Health Affairs chronicled earlier this year, activated consumers achieve better health outcomes at lower costs than their more passive counterparts.
An activated health care consumer can’t trigger marked changes in behavior, policy, and culture all alone, however. Solving complex, population-level health issues requires a large-scale, diverse coalition that is motivated to solve those issues. In Pittsburgh we have taken steps to assemble just such an army of activated health care consumers—and soon, your community could, too.
The JHF recently invited a broad tapestry of leaders from the Pittsburgh region to study the components of previous high-impact social health movements. Then, the seventy-plus consumer advocates, medical providers, philanthropists, technology experts, and economists who participated in the summit hosted by the JHF’s Center for Health Information Activation (CHIA) designed their own campaigns to ignite a social health movement. Participants worked in one of six smaller groups, exploring a population-level issue on which they have deep content knowledge.
- Becoming head of your health care team
- Building community housing options for frail seniors
- Coping with postpartum depression
- Increasing uptake of the cancer-preventing human papilloma virus (HPV) vaccine
- Managing the risk of developing breast or ovarian cancer
- Promoting healthy eating habits, particularly among those at risk for heart disease or diabetes
As the JHF marks its twenty-fifth anniversary, tackling these issues is at the top of our to-do list. We launched our CHIA in 2014 to provide communication tools and skill-building for providers, consumers, and families, and consultation on finding credible health information and support groups. The multidisciplinary graduate students who will participate in our 2015 Jonas Salk Fellowship will examine all six of the issues listed above through the problem-solving lenses of crisis management, predictive modeling, disruptive innovation, and advocacy.
Our HPV Vaccination Initiative has united parents, providers, educators, and grandmothers, among others, to protect youth from preventable cancers. We recently announced a grant to engage local organizations and youth in developing health-promoting communications messages on exercise, diet, tobacco and alcohol use, safe sex, and mental health, and another grant to launch a multimedia campaign to explore advances in breast and ovarian cancer detection and treatment.
While the JHF has a longstanding commitment to many of these population health issues, the army of activated health care consumers that we assembled at the summit produced new perspectives. They stressed that the message surrounding these issues must convey urgency, without devolving into sensationalism. Messages must come from authentic leaders who use personal experience and close interaction with stakeholders to make the issue, such as ovarian cancer, resonate on a human level, rather than remain an abstract statistic. And a problem must be framed as solvable through community action, not as a Sisyphean task.
We were honored to have Health Affairs Editor-in-Chief Alan Weil give a presentation during the event that drove home the urgency of the consumer health activation movement itself. He noted that the US health care system is undergoing unprecedented transformation—transformation that is delivering sledgehammer blows to the wall that has long separated consumers from clinicians. Technology has democratized health information, new payment models champion health outcomes rather than the quantity of services provided, and medical education increasingly recognizes that high-quality health outcomes are achieved through an open line of communication between patients and providers. This is a prime opportunity to inject principles of consumer engagement into the very DNA of health care.
But Alan Weil also emphasized that health care consumers will only realize the full benefits of this tectonic shift from fee-for-service to value-based payment if they have a say in what constitutes high-quality care, and if they work with clinical organizations to co-design a system that accounts for patients’ various characteristics, experiences, and values. Otherwise, this moment in time may pass us by.
The JHF is eager to help others across the country seize the moment, by tapping into communities’ collective strengths to attack longtime barriers to better health. With an inclusive, motivated coalition, no problem is truly intractable. To borrow Alan Weil’s directive to our growing army of activated consumers in Pittsburgh: Time is of the essence. Get to work!