In the early 1970s, the Cystic Fibrosis Foundation began tracking the health of patients with cystic fibrosis.  What began as a modest data collection effort is today a comprehensive clinical registry of 26,000 patients.  Caregivers and researchers use the registry to identify new trends in outcomes; recognize the most effective treatments; and design clinical trials for potential therapies.  The Foundation’s registry has been widely credited with the prolonged survival of patients with cystic fibrosis.

Registries have so far been limited in their use, but powerful in their impact.  To date, patient groups and medical specialty societies — such as the Society for Thoracic Surgeons, the American College of Cardiology, and the American Society of Anesthesiologists — have pursued registries as a clinical improvement strategy. They have done so not because anyone asked them to or required them to, but because they recognized it was the right thing to do for patients.  With an increasing national focus on quality and cost, the opportunity to leverage clinical registries to improve outcomes and appropriate utilization has never been greater.  Two laws — the HITECH Act and the Affordable Care Act—create a landscape in which the use of registries may multiply.  How can we best take advantage of this special moment?

On April 28, 2011, we co-chaired a national leadership meeting held at the Department of Health and Human Services of diverse stakeholders — health plans, purchasers, hospitals, physician specialty societies, pharmaceutical companies, patients, licensing and certification boards — to discuss how the public and private sectors could work together to advance the use of clinical registries in practice.  What became immediately clear is that there is an undeniable interest across the health care industry in using registries to offer benefit to clinicians, patients, and purchasers of health care services. Example after example highlighted the fact that clinicians, when offered an opportunity to share and learn from clinical data, seize it to improve the care of patients.  Patients and payers, when given access to information about clinical performance, use it to make better decisions.

As David Lansky, the CEO of the Pacific Business Group on Health, made clear to the group, the challenge is in creating an ecosystem in which clinicians are rewarded for participation in registries; participation is easy and inexpensive; registries provide consistent clinical value to participating clinicians; and registries provide consistent value to policy-makers, purchasers, and payers.

Several suggestions and ideas emerged from the dialogue:

CMS and Private Health Plans: Creating payment models enabled by both the HITECH Act (i.e. the Meaningful Use incentive program) and the Affordable Care Act (i.e. bundled payments, ACOs, etc) that may require and/or reward participation in registries; supporting a common data infrastructure that simplifies reporting and sharing of clinical data.

Hospitals: Facilitating participation in registries by incorporating them into the clinical workflow for physicians and nurses; purchasing electronic health records that facilitate and incorporate registry functionality.

Physicians and Medical Specialty Societies: Creating consensus concerning the critical data elements around which data should be reported to registries; promoting clinician participation in registries as an activity that supports professionalism and clinical quality improvement.

Medical Specialty and Licensure Boards: Incorporating participation in registries into maintenance of board certification and medical licensure.

Patients and Purchasers: Increasingly using data that is made available through registries to make health care purchasing decisions.

Each of the stakeholder organizations represented committed to working to further define how they might use their unique position in the health care delivery system to support the broader use of registries.  We are committed to continuing to convene these groups to further define and advance a national registries agenda.


The late social scientist Mancur Olson elaborated the term “collective action problem” to describe situations in which many would stand to benefit from a certain action, which, however, has an associated cost that makes it implausible that any one individually would undertake it.  If the proceedings from our meeting are any indication, clinical registries are emerging from the realm of collective action problems and entering a realm in which a collaborative multi-stakeholder effort will decisively expand their use to advance the three-part aim of better health, better care, and lower costs.