Joint Registry Information for Patients

For Patients

What is a Registry?

CJRR Patient InformationA registry is a central database that contains information about patients who have a specific medical condition. The same information is collected about each patient and can be used to compare treatments and the results (or “outcomes”) of those treatments. There are many different types of registries in existence today both in the United States and throughout the world that focus on a variety of conditions and/or procedures. Some examples include heart surgery, hip and knee surgery, cancer and diabetes.

What is the California Joint Replacement Registry (CJRR)?

The California Joint Replacement Registry (CJRR) is a central database that contains information about patients who are having their hip and/or knee(s) replaced with an artificial, implantable hip or knee device. It was developed by the California HealthCare Foundation (CHCF) in collaboration with the California Orthopaedic Association (COA) and the Pacific Business Group on Health (PBGH). CHCF is an independent philanthropy based in Oakland committed to improving the way health care is delivered and financed in California. COA is a membership association representing the interests of approximately 2,100 California orthopedic surgeons.

PBGH is a not-for-profit coalition of 50 large employers in California that provide health care coverage to more than 3 million employees, retirees, and their dependents. PBGH manages the day-to-day operations of the CJRR.

The CJRR is designed to identify important information like how well certain surgical techniques, medications, and devices work. Such information is important to improving care for current and future hip and knee replacement patients. The registry also will allow your health care provider to find out as soon as possible whether there are any problems with the hip or knee implants used in your surgery and to contact you right away.

What information does the California Joint Replacement Registry (CJRR) collect?

The CJRR collects detailed information about your hip and/or knee replacement including:

  • where your surgery took place (which hospital);
  • who your surgeon was;
  • the specific type of implant you received;
  • which side of your body you were operated on;
  • the medications given to you before and after your survey;
  • other selected information about you that is important to know since it can impact the results of the surgery-- like your age and whether you have other conditions like diabetes or heart disease;
  • information from you about how you felt before and after your surgery (called “patient- reported outcomes”). This information is collected through surveys that you would fill out on a secure website before your surgery and at a few times after your surgery (e.g. six months, and one year); and
  • your scrambled Social Security Number which identifies you as you (see question below for more details).

Why does the California Joint Replacement Registry (CJRR) collect my Social Security Number (SSN)?

In order to accurately and effectively track information about hip and knee surgeries, the CJRR needs to create a patient identification number. This number allows the CJRR staff to identify you as you over time and no matter where you go for care. For example, you could go to one surgeon for your surgery, and then move and have your follow-up care with another surgeon. Or you could have one knee replaced at one hospital and then, years later, have the other knee replaced at the same hospital or even a different one.

The identification number the CJRR uses is based on your Social Security Number (SSN). Before sending any information to the CJRR registry, the surgeon or hospital where a patient receives care uses special software to scramble each patient’s SSN and creates a new number to track each patient. The identification number the CJRR uses is based on a patient’s Social Security Number (SSN) since this number is one of the most accurate ways to identify a person. Please see the next question (below) for how your hospital and surgeon and the CJRR protect your information.

How does the California Joint Replacement Registry (CJRR) protect my private information?

Your surgeon, hospital and the CJRR staff knows your Social Security Number (SSN) and the other information provided to the CJRR about you are very important to you. To protect your SSN, before sending any information to the CJRR registry, special software is used to scramble each patient’s SSN and create a new number to track each patient. This scrambled number (not your SSN) is then saved in the registry database. Only the hospital where you received care can match your SSN to the scrambled code; the CJRR cannot do this matching.

  • Storing it on dedicated server that have physical and electronic protections; and
  • Verifying that all communications with the registry are from valid sources ("authenticated").

Many other registries have successfully protected similar data using similar techniques.

What will the California Joint Replacement Registry (CJRR) do with the information it collects about me?

The information about you will be securely sent to the CJRR by your surgeon and hospital, where it will be stored with information from many other patients like you who are having their hips and/or knees replaced at hospitals throughout California. This information will be used by your hospital and surgeon to improve the care they provide. It will also be used by researchers to help figure out things like which implants and surgical techniques work the best, and which ones may be problematic.

Why should I participate in the California Joint Replacement Registry (CJRR)?

Other countries have shown that the information from joint replacement registries improves the care that patients receive-- resulting in fewer patients who need to have their surgery repeated, fewer infections, and better identification of the type of operation and implant that works best for a particular kind of patient. By participating in the CJRR, you would help ensure that you receive the best possible care and you would help to improve the care that other patients in California, and potentially across the country, receive related to hip and knee replacements.

What do I have to do to participate in the California Joint Replacement Registry (CJRR)?

To participate in the CJRR you would need to:

  • Give your permission to your surgeon and hospital so that it can share information about you, your surgery, and how you felt before and after it with the database; and
  • Complete a survey about you before your surgery and at several points in time after your surgery (6 months, one year).

The survey collects information about you that only you know, like whether you can walk better after your surgery and whether you are free from pain. The survey takes about 20 minutes to complete. The questions do not require that you provide long answers. If you participate in the CJRR, you would fill out the surveys through a secure on-line application that you would get to from an email link sent to you by your hospital or surgeon, or on a tablet or computer in your surgeon’s office. The survey data is important for the CJRR to collect since a critical way to judge whether the surgery was a success is to know from you whether you are better after it.

What if I say “No” to participating in the California Joint Replacement Registry (CJRR)?

Whether you participate in the CJRR is completely up to you. If you choose not to participate, your information will not be shared with the CJRR, you will not be sent any surveys, and your health care will not be impacted in any way. Whether you participate in the CJRR will not impact your health insurance status.

Four Questions for Your Doctor

When seeking medical treatment patients have an opportunity to learn about their doctors’ efforts to ensure high quality clinical outcomes and patient-centered care.

Here are four questions to ask your surgeon when considering a hip or knee replacement.

  1. How many hip/knee replacements do you perform each year?
    • Your surgeon should be able to tell you.
    • Studies show that surgeons who do more procedures each year have better outcomes.
      See links for studies on hip and knee replacements.
  2. What kind of improvements do your patients have in their functional status (ability to do my regular activities of daily living)? How will you measure my improvement?
    • Your surgeon should be able to give you a range of numbers about improvement they have seen in their patients who are similar to you.
    • Many surgeons have patients complete surveys about their ability to do things (e.g., walk up stairs, get dressed) before and after surgery.
  3. What kind of improvements do your patients have in their pain? How will you measure my improvement?
    • Your surgeon should be able to give you a range of numbers about improvement they have seen in their patients who are similar to you.
    • Many surgeons have patients complete surveys about their ability to do things (e.g., walk up stairs, get dressed) before and after surgery.
  4. What are the risks and potential complications of hip/knee replacement?
    • Your surgeon should be able to explain the complications that are seen in their patients who are similar to you.
    • You should let your surgeon know what’s most important to you in terms of risks and benefits.

John Koos, a University of California, San Francisco Medical Center bilateral knee replacement patient, shares his motivation for joining the CJRR and the benefits of his participation.

Why participate in the CJRR?

  • Your survey responses help hospitals and physicians provide the best possible care.
  • You have the opportunity to provide feedback on the success of your surgery from your point of view.
  • Your information helps the CJRR track your device implant and monitor its safety and effectiveness over time.

Click here to see if your hospital or surgeon is currently participating in the CJRR