ICRR for sites

Information for Sites Interested in Joining

Please review the information below and/or view this 30-minute video overview of the registry https://www.youtube.com/watch?v=nbvrbqBJ0JE, and

if you are interested in joining, complete the program survey here

The goal of the ICRR is to evaluate cardiac rehabilitation (CR) delivery (e.g., describe care patterns, variations in treatment and outcomes) and enable quality improvement in low-resource settings, with the aim of ultimately improving patient outcomes. We hope to use the information to advocate for more CR delivery. The data will also be used for research purposes.

Thank you for considering joining the ICRR. You, like us, are dedicated to improving CR delivery. We hope we can work together.

ELIGIBILITY:

CR programs in low-resource settings (i.e., low or middle-income country according to World Bank, or in region within a higher-income country where there is under-development of CR due to limited financial resources, lack of healthcare system resources, lack of patient and provider awareness, and/or patient disadvantage [e.g., limited social resources, geographic barriers] are eligible to join the registry. A CR program is defined as one that offers initial assessment, structured exercise (can be supervised or unsupervised) and at least one other strategy to control risk factors. The registry pertains to phase II CR. Programs that cannot enter data in English unfortunately cannot be accommodated at this time.

WHAT IS INVOLVED:

As per the data dictionary on the website, there are 12 program-reported variables collected pre and post-program, and 17 patient-reported variables if you opt in to patient report (or you can provide the information directly if you want to collect it directly from patients). Data are entered pre and post-program, and annually thereafter online into the secure registry, in anonymized manner.

Once you are familiar with the ICRR interface and understand the variable definitions, the time required to enter patient data will vary depending on your access to the data that you are entering (e.g., whether you do it as you are interviewing a patient) and the assessment point you are entering, but we estimate it should take approximately 5-10 minutes to enter a complete patient record.

You may want to ask for dedicated work time each week to get started with the registry, contribute data regularly thereafter, and to engage in quality improvement activities. ICRR is here to support you in making requests to your institution for some devoted time; just ask.

At this time, there is no cost to join the registry. There will be no payments to your program for contributing data to the registry.

BENEFITS OF JOINING THE REGISTRY:

The ICRR is committed to optimizing utility of the registry to you. There are real-time dashboards to display program quality indicators and patient outcomes; your site will be compared anonymously to other sites, as well as against yourself for change over time. There is a learning community to enable quality improvement if your program is interested.

Where patients provide post-program data, a lay summary is generated to support them in maintaining their cardiovascular risk reduction long-term. The research and user sub-committees shall provide overall updates on the registry to participating programs annually.

You have access to your program data and are the owner at all times. You can download it to excel from the registry at any time. We have a research sub-committee who may support you if you would like to analyze your site data in a different manner than is available on the dashboards, for reporting to your institution or beyond. We hope the registry data can be used for you to demonstrate the efficacy of your program and advocate for resources. Note there is a separate process to request access to data from beyond your site through the research committee; Please be in touch for further information.

As a contributing program, you are eligible to volunteer to serve on the ICRR user sub-committee. Terms of reference are available on the governance webpage of the CR registry dropdown menu. To express your interest, email us (iccpr.icrr@gmail.com).

You also have the opportunity to get involved in research. You may be invited to participate in research by the research sub-committee; this is voluntary. Primary data stewards who have an academic appointment, as specified in program survey on initiation of registry participation, will be recognized as “ICRR collaborators” on publications stemming from the registry (please see the Data Access & Dissemination policy on the governance webpage for more details).

Finally, ICCPR has developed a Program Certification mechanism through ICRR for a nominal fee. As a registry-contributing program, you will have already completed many of the steps to apply. See the Program Certification page on our website.

ELIGIBLE/INTERESTED SITES SHOULD AGREE TO THE FOLLOWING:

• That 1-2 data stewards will be responsible for data entry for reasons of data consistency / quality. It is preferable that the data enterer is involved in patient care, but not necessary.

• It is preferable a medical director, or chief nurse or physiotherapist is supportive of the site participating in the ICRR, and will be recognized as such. This person can help with any clinical questions around data entry, and bolster quality improvement efforts.

• The primary data steward understands the on-boarding process involves:
• • Completing the program survey (link above)
  • Applying for ethical and institutional approvals to join the registry at their institution, with the support of the ICRR (we have the agreements, protocols, information letter, and consent forms to share with you, etc). Note you will determine how long you will contribute data later, so try to keep the duration of involvement open-ended when submitting to your research ethics board.
  • Having 2 training sessions with the user sub-committee
• Renewing ethics approvals annually, as per your local board direction, until follow-up of all patients is complete. Any issues with the ethics board should be shared with ICRR.

• To make every effort to enter data in accordance with the data dictionary.

• That efforts will be made to enter consecutive indicated patients (see protocol for full inclusion and exclusion criteria) for your active period of contribution to the registry who do not opt-out.

• It is desirable that if there is cardiac acute care at your institution, that gender and year of birth for all indicated patients is entered to the registry to enable enrolment tracking.

• That entry of patient data will be concurrent with patient visits to the greatest extent possible (i.e., not entering data retrospectively).

• While only year of birth and gender are mandatory variables, you will make every effort to provide data for every variable for each patient.

• You will make every effort to enter post-program data regardless of patient program completion by collecting information via phone or other means, 
• • as well as call every patient annually regardless of their program completion to verify vital status, until either they have opted out of receiving further annual surveys or you confirm their expiry or inability to complete the survey.
• To be available to discuss strategies to ensure the most complete provision of follow-up data possible.

• To partake in initiatives to optimize entered data quality, including rectifying errors identified, and on-going or refreshing of training on the data dictionary.

• Agree to inform ICRR if the data steward is leaving the position.

• Agree to only enter data on patients as per the protocol approved by your institution, and to delete or stop entering data on patients who request so in conjunction with ICRR and Dendrite.

• While it is up to the site how long they will enter new patients, sites should agree to contribute data to the registry for a minimum of 6 months on new patients, with the optimal period of time to contribute data to the registry being until some quality improvement initiatives have been implemented and their impact measured (data are shown in the dashboard before and after 6 months to facilitate seeing any change).

• Be interested in engaging in a learning community around CR quality improvement (note: this is voluntary and information about individual site performance will only be available to you).

• Provide feedback to ICRR on ways we can improve the ease of use and usefulness of the registry to you as a program and your patients.

If you are interested, the ICRR is here to support you through the following steps to becoming a participating site.

Note you will have contact with the ICRR secretary (iccpr.icrr@gmail.com), User sub-committee chair (responsible for on-boarding), and user sub-committee co-chair (responsible to support quality improvement initiatives and optimize registry feedback).

1. Interested and eligible CR sites are directed to ICCPR’s ICRR website to complete the program survey above.

2. The secretary will share the registry protocol, information letter etc with the site, and support the site to apply for ethics approval. The approval should be forwarded to the secretary.

3. The site will be given a registry agreement and asked to secure institutional approval. The signed document should also be forwarded to the secretary.

4. Once these 2 approvals are in place, the ICRR secretary shall secure a login for the site data steward(s) from Dendrite. Dendrite remains available for any technical training on the registry website for users.

5. The ICRR secretary and user sub-committee chair shall hold a first training session over videoconference with the site. They will also discuss ways in which variables from the data dictionary which are not currently assessed could be.

a.  During this call, site processes to provide information to patients on the registry (opt-out letter and / or consent as per approved protocol) should be described to the ICRR, so the program can be supported in any way.

b. The site data steward shall arrange to enter pre-program data for the first patient privately (no screen sharing) while on a call with the user committee secretary (iccpr.icrr@gmail.com) to troubleshoot any challenges.

c. Any challenges with patient report (if opting in) will also be addressed.

6.  When entry of post-program data to the registry will begin (based on the duration of your program as per your program survey responses), the site data steward shall have a 2nd video call with the user sub-committee co-chair and ICRR secretary. During the session, we will also review challenges, data quality issues, and the functionality of the dashboards and patient lay summary (if the latter is used at the site).