How often is it updated?
NASS and AOA: Each registry is continuously updated as new data is entered.
AJRR (Haisman, paraphrased): Some submit monthly, some quarterly. AJRR processes incoming files daily, validating and cleansing. Records which pass a quality verification are imported into the registry database. Users at participating institutions receive data quality reports and are given the opportunity to correct errors and resubmit. Typically, uploaded files are available in the registry within 24 hours of being uploaded to AJRR or sooner.
A potential delay is the time a hospital needs to extract a complete case record with all coding. In some instances, procedure codes may come from the billing system, the implant data may come from another system, and both must be linked with the patient record from the EMR to create a complete case record.
How many hospitals are participating at this point?
NASS: The registry just launched at the end of June 2018. Contracts with multiple sites will be completed over the next few months.
AJRR (Dr. Bozic, mostly paraphrased): More than 1,200 hospitals have signed agreements to send data to AJRR. About 800-900 have submitted data at one time or another. AJRR is adding vital data fields, which increase the burden on the hospital. So the number of hospitals submitting regularly is currently about 450-500. “But we certainly hope to get that number back up over a thousand, based on the business associate agreements that we have in place.”
Laurie Boukas, AJRR: So far, participating hospitals have entered over 1.3 million records, making it the biggest joint registry in the world. (There’s a counter of the current total on the AJRR home page.)
AOA (website): About 130 participating sites in 44, states, with 11,000+ post-fracture records.
Are group practices and individual physicians participating?
NASS: The registry is applicable to any size or type of practice, including group practices and individual physicians.
AJRR: Hospitals and ambulatory surgery centers only.
AOA: Anyone can join.
Do you have any “success stories,” such as from similar registries in Europe?
NASS: Just launched, so no success stories yet, but added: “While European countries have substantial experience with spinal registries, most are focused on procedure, as opposed to diagnosis…Follow-up has been a major concern in those registries, so we hope this easy-to-use format will help capture relevant data.”
AJRR (staff, paraphrased): Simply submitting data to a registry doesn’t, by itself, lead to better outcomes or quality improvement. Scandinavian registries pair their data collection with patient feedback mechanisms. For the past few years, the AJRR has been focused more on data collection and recruitment—to get to the scale to be meaningfully representative. Proof of benefits will become significantly more tangible and robust when we incorporate feedback reporting and quality improvement initiatives.
Who pays, and how much?
NASS: The care-giving corporate entity pays $3,250 per year for the first participant per practice. Each additional participant (regardless of specialty) is $300/year.
AJRR (Haisman): $3,500/year for a site license, plus a variable few hundred dollars per additional site from which data is uploaded. “We try to be flexible on that.”
AOA (website): a subscription to Own the Bone is $2,000 per year plus a setup fee.
AJRR Experience Hints of Early-Stage Challenges in Winning Participants
Why did the number of AJRR participants drop sharply from an additional 850-900 to 450-500? At least in part, that happened when AJRR revised its data collection template to include more fields of information. Other hospitals and ASCs [ambulatory surgery centers] may be holding back because, with the big benefits years away, they don’t want to be early contributors.
“AJRR is consistently looking at better ways of reducing the burden of extracting data and is exploring several different methods to allow more flexibility and options for those institutions that are capable of leveraging more sophisticated technical integrations. For example, FHIR* and similar secure web services’ API integrations are being considered by AJRR,” Haisman said.
* FHIR, Fast Healthcare Interoperability Resources is a standard describing data formats and elements and an application programming interface for exchanging electronic health records, created by the Health Level Seven International health-care standards organization.
