Large-scale collection of patient data into disease-specific databases, or registries, is vital to research. These registries house standardized information on patients’ diagnoses, care, and outcomes, supporting large-scale comparison and analysis which can lead to better population health management and interventions. But can disease registries also help to move us closer to patient-centered care?

We’re learning from examples overseas that, with the help of new interactive technologies, they can.

Sweden created a disease registry for rheumatology that is much more than a data storage house. The Swedish Rheumatology Quality Registry (SRQ) is an interactive tool that helps patients and doctors prepare for and make better use of their office visits. It helps them to work like a team—to “co-produce” care together.

I believe a unique opportunity for a philanthropic organization is to explore the big ideas. We have a freedom that few others have to really experiment and innovate. Even to take big risks in our grant making sometimes. Often, the rewards are insights – they offer a glimpse of how our nation can address some of the most pressing challenges facing our society.  Aligning Forces for Quality is an example of this philosophy in action.”  —Risa Lavizzo-Mourey, MD, MBA, president and CEO of the Robert Wood Johnson Foundation 

In 2006, the Robert Wood Johnson Foundation (RWJF) launched a bold, ten year experiment that became one of its largest philanthropic investments—the Aligning Forces for Quality (AF4Q) initiative which sought to lift the overall quality, equality, and value of health care in 16 communities across the country.

In each AF4Q community, a regional alliance of doctors, patients, consumers, insurers, and employers worked collaboratively to transform their local health care system. Lessons from these transformations were then used to develop national models for reform. Alliances were tasked with addressing five “forces” to enhance quality while reducing costs:

• performance measurement and reporting
• quality improvement
• engaging consumers in their health and health care
• reducing health care disparities
  
• reforming payment

Collaboration—among people who don’t traditionally work together on a daily basis and who bring unique perspectives—carries the best potential to solve today's complex health and social issues effectively and equitably.

Peer review and academic journals contribute to creation of sound scientific research. Alternatively, the Open Access movement seeks to breed innovation and maximize impact. We’re listening to both sides of this debate and researching the best way forward.