Outpatient Cardiac Rehabilitation Registry Frequently Asked Questions

FAQs:

Why Participate?
Subscription
Data Collection
Reporting
Patient Privacy and HIPAA
Registry Development
Questions

Why Participate?
Q: Why should our program participate in the registry?
A: Through the AACVPR Outpatient Cardiac Rehabilitation Registry, cardiac rehabilitation programs will be able to:

  • Create and manage patient profiles
  • Enter and view outcomes data on enrolled patients in real time
  • Track and quantify progress of the cardiac rehabilitation program in meeting performance goals
  • Produce individual and grouped outcomes reports

By assisting in the collection, management, and interpretation of outcomes data, the registry will help cardiac rehabilitation programs:

  • Compare outcomes and processes to evidence-based goals and national benchmarks
  • Implement quality improvement projects based on real data
  • Enhance documentation and communication with the program’s key audiences, such as hospital administrators and referring physicians
  • Promote the role of cardiac rehabilitation in the management of chronic heart and vascular disease
  • Increase support from physicians
  • Improve 3rd-party payer coverage and reimbursement rates

Q: Can small cardiac rehabilitation programs benefit and make a difference?
A: Every program’s data is valuable and makes a difference. In the Wisconsin Cardiac Rehabilitation Outcomes Registry (WiCORE), 60 percent of the participating programs are small programs (fewer than 100 new Phase 2 patients per year). Of the more than 45,000 patients entered in WiCORE, 27,000 are from small programs.

For benchmarking, the registry offers reports that show how your patient outcomes compare not only to general averages across the country but also to programs in your state and to similar-size programs. The information you get from the registry will help you manage your patients’ outcomes data and build a better program.
AACVPR Outpatient Cardiac Rehabilitation Registry: Frequently Asked Questions Page 2 of 7

In fact, small programs may have the most to gain. You get an easy-to-use tool to:

  • Organize the collection, analysis, and reporting of outcomes
  • Demonstrate program performance to your administrators, physicians, and medical director

Plus, you’ll get the support of AACVPR and experts working on the registry – all for a very fair price.

Q: What is the expected number of hours required to participate in the registry?
A: The time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data that you are entering, and the amount of data you enter. Once you are familiar with navigating the interface, and understand the field definitions, it is estimated that it would take approximately five to 10 minutes to enter a complete patient record.

Subscription
Q: How do I subscribe to the registry?
A: To subscribe your program to the AACVPR Outpatient Cardiac Rehabilitation Registry and start entering data, you must:

  • Establish a principal user for the registry
  • Provide program information
  • Provide your program roster, including at least one secondary user
  • Submit a signed Participation Agreement
  • Submit the subscription payment
  • Complete the two-step training process

For detailed, step-by-step instructions – and to get started – please click here. You may start the subscription process at any time.


Q: What is the cost to participate in the registry?
A: Participation in the registry is based on an annual program subscription (valid July 1 through June 30). The fee is dependent on program size, based on the number of new Phase 2 patients who enroll in your program annually. AACVPR is working to keep prices low and is also exploring discounts for AACVPR-certified programs. The current fee structure is as follows:

Payment Received between April 1 – December 31: 12-month subscription fee valid through June 30 of following year.

  • Annual enrollment of fewer than 100 patients - $100/year
  • Annual enrollment of 101-200 patients - $125/year
  • Annual enrollment of more than 200 patients - $150/year

Payment Received between January 1 – March 31: 18-months subscription fee valid through June 30 of following year.

  • Annual enrollment of fewer than 100 patients - $150/year
  • Annual enrollment of 101-200 patients - $187.50/year
  • Annual enrollment of more than 200 patients - $225/year

Q: When will our program be able to start using the registry?
A: The registry officially launched on June 25, 2012. Subscribing programs can enter patient data as soon as they have (a) established a principal user for the registry; (b) provided their program information; (c) provided their program roster, including at least one secondary user; (d) submitted a signed Participation Agreement; (e) submitted the subscription payment; (f) completed the two-step training process; and (g) updated program procedures as necessary to conform to the registry data definitions.

Each user must complete the mandatory training to obtain a login to the registry. Registry access is provided via individual, not program-wide, login.

Q: What does the mandatory training entail?
A: All registry users must complete a two-part training process – (1) view a one-hour training Webcast and (2) complete a 15- to 20-minute online training exercise – to gain access to the registry. The Webcast provides a tour of the registry platform and gives details about data entry and reports. The online training exercise helps familiarize users with the registry by guiding them through a sample patient record; during the training, users must enter sample data and successfully navigate through the registry interface. 

All registry users will also have access to a registry user’s guide, data definitions and comments, and other assessment tools and resources to facilitate the entry of consistent data from each program. The principal user is responsible for updating your program procedures so that the outcomes data you collect for the registry is accurate and compliant with registry definitions. This is to ensure that we have the highest quality data available for the registry. Once your program’s procedures are updated, you can start entering data into the registry. Exhibit A in the Participation Agreement provides a description of the role of the principal user.

Please note: Each program staff member who will be using the registry must complete both portions of the training – the Webcast and the online training exercise – and will receive his or her own link for the training exercise and for the live registry. Please do not share this link with your colleagues.

Data Collection
Q: Who is able to access our program’s data?
A: Registry subscribers have access only to their program’s patient information and to aggregated data from the registry as a whole. Subscribers are not able to access or view other programs’ data. AACVPR-approved nonsubscribers, such as researchers, have access only to aggregated and/or de-identified registry data. The data will be de-identified with respect to patient and program identifiers unless specifically permitted by the participating programs and required by the researcher. Hospital systems with multiple participating programs may request files of de-identified patient data from all programs within their system.

In addition, registry subscribers and AACVPR sign a Participation Agreement for limited data use giving AACVPR access to patient-specific information. AACVPR may use this information to provide reports of national outcomes and trends and to track morbidity and mortality rates. (Read more about the Participation Agreement.)

Q: Will we still be able to use our current patient management system?
A: AACVPR is working with its corporate partners—Life Systems International (LSI) Inc., Cardiac Science Corporation, and ScottCare Cardiovascular Solutions—to develop methods for transferring data from their applications to the registry. Your company’s technical support or sales representative should contact you regarding implementation.

If your program uses a paper-based patient management system, the registry provides an easy-to-use graphical user interface (GUI) that utilizes table-driven lookups and checkboxes to minimize typing and has multiple levels of validation to ensure data is entered correctly before it is submitted. You may decide to modify your current paper-based practices to complement the registry. 

For more information about the application programming interface (API) documentation or file uploads from existing data applications, contact AACVPR Headquarters at 312/321-5146, option 1.

Q: Will we need to change any of our program’s policies or procedures?
A: In order to standardize definitions so that all programs are measuring the same outcomes, you may have to modify your procedures so the data you collect conforms to the registry standards. Registry resources include a list of data definitions and comments, as well as references to various supported assessment tools and measurement protocols. If your program is using an assessment tool that is not supported by the registry, you may continue to use that tool; you simply won’t be able to enter the score/data into the registry. You will need to keep that data in a separate database or spreadsheet.

Q: What data is being collected in the registry?
A: The data set includes:

  • Patient demographics
  • Medical history, including:
    • Admitting diagnosis
    • Risk factors
    • Comorbid conditions
  • Referral and enrollment dates
  • Healthcare utilization, including adverse and unexpected events
  • Pre- and post-clinical data and assessment tools, including:
    • Lipids
    • Glucose
    • Blood pressure
    • Dietary outcomes
    • Medications
    • Tobacco use
    • Anthropometric data
    • Functional capacity and status
    • Psychosocial status

Not all of the data fields included in the registry are required fields; only a medical record ID and enrollment date need to be completed in order to save a record. Programs should collect and enter as much information as their resources allow, however. The more data entered, the better the feedback will be with respect to overall program performance.

Click here for a more detailed list of data elements in the registry.

Q: Our program doesn’t use the same measurement tools and tests as the registry. Can we still participate?
A: Yes, you can. Many of the variables in the registry are not required; you don’t have to enter the data if you don’t have it or don’t use the tool. Also, it is okay to use tools that are not in the registry; you just won’t be able to enter the scores into the registry and will not be able to get feedback on your patients’ scores compared to other programs. What’s more important is that you are using validated tools and are using the scores to educate your patients and provide appropriate and individualized services based on the results. However, you may want to review some of the tools that are supported in the registry and see whether your current tools could be updated to these. Click here to see the data elements collected in the registry and the supported assessment tools.

Reporting
Q: What reports will we be able to view?
A: Pre-configured reports will include:

  • Individual Patient Report showing the patient’s pre- and post-program values, percent change, and comparison to secondary prevention goals
  • Grouped Outcomes (Program) Report showing aggregated pre- and post-outcomes and change in scores
  • Performance Measures Report, designed to assess the program’s success at getting its patients to national guideline goals in secondary prevention areas

Reports will reflect user-specified time frames and may be sorted by diagnosis, age, sex, and/or clinical status. Reports can be pulled at any time, and programs can also create customized data queries. All reports can be downloaded in Excel format. In addition, internal reports will allow ongoing calculation of national benchmark data by AACVPR, while a special interface will allow aggregated data mining by approved outside agencies.

Please note: Until there is a critical amount of data in the registry, program-level reports and aggregated data may not be very meaningful. Comparative data may change significantly as more records are added.

Q: How will the registry ensure accuracy of data?
A: Each participating program must designate a principal user who is responsible for monitoring data integrity. Every registry user will be required to complete the registry training before gaining access, and must familiarize themselves with the data definitions established for the registry. In addition, the registry will apply rigorous data validation techniques.


Patient Privacy and HIPAA

Q: Do patients need to provide consent to have their data included in the registry?
A: The purpose of the registry is to monitor patient outcomes and promote quality improvement efforts. HIPAA provides that, in this case, the program can disclose the patient’s PHI to the registry without the need for separate patient consent.

Q: Do I need to get Institutional Review Board (IRB) approval before using the registry?
A: The AACVPR Outpatient Cardiac Rehabilitation Registry is a quality assurance database and does not involve human subjects research as defined by the Office for Human Research Protections. As such, it has been determined that the registry does not require IRB oversight. Individual institutions, however, may require quality assurance activities to have IRB review. Programs should verify with their administration that participation in the registry complies with institutional requirements. In addition, a request to use data from the registry for a research project may require IRB review from the investigator’s own IRB. The registry protocol document is available for use as a starting point if needed; click here to download the protocol.

Q: What is the Participation Agreement?
A: Because of the inclusion of PHI, each participating program will need to have a signed Participation Agreement on file with AACVPR before it can enter or submit data to the registry. This agreement includes both a business associate agreement and a data use agreement. It is a standard legal document that identifies:

  • The parties that are sharing PHI – in this case, AACVPR and your program – and their responsibilities in maintaining the confidentiality and security of PHI
  • Who owns the data
  • What data each party can expect to get back
  • Who is liable if security is breached

Click here to download the AACVPR Registry Participation Agreement. Please present this document to your administrators, as it is very specific about how AACVPR can use data and closely follows basic HIPAA requirements.

In order to make the submission process as efficient as possible for you and for us, please do the following:

  • Insert the full and legal name of the entity that will be entering into the agreement on page 12 where indicated;
  • In section 9.12, add the address where you would like notices sent, including the name of the person to whom the notice should be addressed;
  • If you have any suggested revisions, please make those revisions directly on the document in a way that clearly shows the changes (e.g., “track” changes in the Word document); and
  • Please do not make revisions and send us a PDF document. We cannot accept PDFs. Please send back a Word document with your tracked changes. 

Signed participation agreements should be returned to AACVPR Headquarters, Attn: Registry, 330 N. Wabash Ave., Suite 2000, Chicago, IL 60611-4267; faxed to 312/312-673-6924; or scanned and e-mailed to alynn@aacvpr.org with “Registry Participation Agreement” in the subject line.

Q: Can we use our hospital’s business associate agreement instead?
A: The AACVPR Registry Participation Agreement includes a fully compliant HIPAA Business Associate Agreement (BAA).  AACVPR cannot agree to use any form other than the BAA that is included within the Registry Participation Agreement, as this BAA is specifically tailored to the Registry and specifies how AACVPR can and cannot use and disclose PHI related to this specific Registry. The Registry Participation Agreement also includes a HIPAA Data Use Agreement, which is required to participate in the Registry. The Registry Participation Agreement has other provisions related to the BAA and Data Use Agreement as well; therefore, the use of any other agreement would require further revisions.  For these reasons, AACVPR must insist on the BAA and Data Use Agreements that are included within the Registry Participation Agreement.  If you feel it is appropriate, you can make revisions to the BAA section of the Registry Participation Agreement and AACVPR legal counsel will review such revisions and decide whether to accept such revisions. If you would like to propose revisions, please send a Word document with your tracked changes to the Registry Participation Agreement to alynn@aacvpr.org.


Registry Sponsors & Development

AACVPR would like to thank the following sponsors of the Outpatient Cardiac Rehabilitation Registry for their support:

Founding Sponsor:

Additional support provided by: 


The Registry is being developed by Cissec Corporation of Kingston, Ontario, in cooperation with SmithBucklin and AACVPR.

Q: Who is Cissec Corporation?
A: Cissec Corporation, a Canadian-based software development firm specializing in healthcare technology, is responsible for the IT development of the AACVPR Outpatient Cardiac Rehabilitation Registry. Cissec is an experienced vendor that has created previous registries, including the Canadian Cardiac Rehab Registry of the Canadian Association of Cardiac Rehabilitation. AACVPR and the cardiac rehabilitation experts who make up its Registry Committee have developed the registry content and will oversee its operations.

Questions

Please direct any questions regarding the registry to AACVPR Headquarters at 312/321-5146 (select option 1) or aacvpr@aacvpr.org.

Click here to download a PDF of these FAQs.

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