The Growth of Clinical Data Registries The nuts and bolts for ASCs BY ERIK MICHALESKO

Data has been gaining traction as one of the most integral

aspects of the

modern world. Businesses use it to make tough

financial decisions, web sites analyze it to present relevant content and polit- ical parties utilize it to target specific demographics. Currently, one of the best ways to collect health care data is with a clinical data registry. Quality initiatives and government provisions have spurred their growth, proliferat- ing the number of registries in the US. The information contained in them can benefit the health care field hugely, and the points below are what ASCs should know about registries.

1. When and Where Did Clinical Data Registries Start? Some of the first clinical data registries began in Sweden in the 70s: the Swed- ish Knee Arthroplasty Registry began in 1975 and the Swedish Hip Arthroplasty Register began in 1979. Since then, Sweden has created dozens of registries that help improve patient outcomes. The United Kingdom and Australia fol- lowed suit, founding joint replacement registries in 2002 and 1999, respec- tively. American clinical data registries are not mandated by the government like their international counterparts, but they are becoming increasingly popular. America has learned a lot from clinical data registries around the world.

2. What is a Clinical Data Registry? Clinical data registries record informa- tion about the health status of patients and the heath care they receive over varying

periods of time. They are

designed to capture clinical data of importance to health care practitioners, providers and patients. Generally, reg-

5. How do Registries Collect Data? There are two main methods of data collection that registries utilize: from


electronic or manual transfer by a surgery center or from data submitted directly from patients, or through devices that hold surveys that patients can fill out. Registries are careful with protected health information (PHI) and follow several steps to safeguard patient privacy. The surveys answer questions that describe the patient experience before and

after surgery and are

istries focus on clinical data for spe- cific populations based on a disease/ condition, procedure or medical device/ drug. For example, the American Joint Replacement Registry (AJRR) focuses on hip and knee replacements in the US.

3. Who Manages Registries? Many different organizations and soci- eties have created registries. These organizations include: medical spe- cialty societies, health plans, patient advocacy organizations, federal and state governments, for-profit compa- nies and nonprofit organizations.

4. Who is Interested in Registries, and Who Can They Benefit? There are various groups of people that can benefit from the data housed within registries. The way they use it might dif- fer, but their ultimate goal of improving patient care remains the same. These groups include: ASCs, hospitals, health systems, private practice groups, phy- sicians, health plans and other payers, patients, researchers, device manage- ment companies, patient and consumer organizations, and federal, state and local government.

referred to as patient-reported outcomes (PROs). Not every registry offers both options and there are different nuances depending on the specialty.

6. Why are Registries Important? ■

Quality Improvement: Registries can be used for quality improvement initia- tives. By comparing figures at partici- pating institutions over a period of time, trends can be noticed and areas that should be focused on can be isolated.

Benchmarking: Clinical registries also support benchmarking by com- paring performance across different levels of attribution and geographic area. That data is sometimes used by medical specialty and health care professional societies to cre- ate and monitor performance for quality improvement programs. The benchmarked information contained in registries can help ASCs visual- ize how they stack up against other de-identified participants in a regis- try and gives them the opportunity to compare their performance to national demographics.

Value-Based Payment Initiatives: Clinical data registries also can be used to meet value-based payment initiatives. The Centers for Medicare & Medicaid Services (CMS) requires several initiatives, and registries pro- vide the resources to help meet many of the secure incentive payments and

The advice and opinions expressed in this column are those of the author’s and do not represent official Ambulatory Surgery Center Association policy or opinion.

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