Key Takeaways

  • Review this list of frequently asked questions about data management and analysis for Chronic Disease Self-Management Education and self-management support programs.

  • This guidance is specific to organizations with Prevention and Public Health grants administered by the Administration for Community Living.

  • Find information on data collection requirements, privacy and security recommendations, optional data fields, and more.

Data Collection

  1. Does this grant require data collection?: Yes, this cooperative agreement requires the use of data collection tools that have been approved by the federal Office of Management and Budget (OMB). 
  2. Where can I find general information on the National CDSME Database?: The National CDSME Database page is a one-stop shop for data management resources. These files can also be accessed from your home page on the Lightning version of the CHA Community 2.0.
  3. Where can I find the data collection forms?Data Collection Tools
    1. Leaders, instructors, and coaches must complete a Program Information Cover Sheet and an Attendance Log. This information documents the location of the program, type of program, and the number of participants who completed the program.
    2. Participants will complete a Participant Information Survey, available in English and multiple other languages. The Participant Information Survey documents demographic and health characteristics, including age, gender, race/ethnicity, types of chronic condition(s), disability status, caregiving status, self-rated health, provider referral, and education level as well as several pre- and post-workshop questions related to self-efficacy, self-rated health, and social isolation.
  4. Are the data collection forms available in Spanish and other languages?: Yes, download here.
  5. What is the best method for collecting post-test questions on the Participant Information Survey?:
    1. ACL recommends that implementation sites securely store participant and workshop data forms until the final session or encounter and then re-distribute the surveys to participants to complete post-test questions. The completed Participant Information Survey may then be sent, along with the other workshop forms, in one packet for data entry.
    2. Alternatively, implementation sites may choose to distribute a separate form with only post-test questions on the last session, as long as the appropriate identification on the form can be linked to the participant in the Attendance Log and the Participant Information Survey distributed at the start of the program. The Participant ID # at the top of each form can be used to link baseline and post-test forms. The database provides a space to enter this unique Participant ID #.
  6. Can we edit the Program Information Cover Sheet to make it more useful for our partners?: You can tailor question #5 (program type) and #6 (program language) to match your local programming. For any other changes, submit a proposed draft to your ACL/AoA Project Officer for review and approval.
  7. Which forms need to be stored and what should be destroyed?: See recommendations for Privacy and Security processes.
  8. Can we keep the paper version of the workshop forms until we have an opportunity to perform our quality assurance process, even after they are entered into the National CDSME Database?:  You may keep the paper forms as long as they are in a secure, locked place or are scanned and securely stored to protect confidentiality. We recommend destroying them as soon as the quality assurance process is complete, or entered into the database, which should be as soon as possible. 
  9. How can we track participant reach if a participant doesn’t want to complete the Participant Information Survey or share their demographic data?: Participant attendance is tracked separately from the information on the Participant Information Survey. If a participant does not agree to share their demographic information, you can still enter information from the Attendance Log into the database. 
    1. Once you complete the workshop profile page, click on ‘Add New Participant’, leave all demographic questions blank, and scroll to the bottom of the Participant Profile page. Check off the sessions attended (for Standard 6-session workshops) or enter the # of Encounters (for Alternate/Support programs). You can create a custom Participant ID#, to more easily flag participants with missing data fields. Once you click submit, you will notice that the database has auto-generated an ID# for the anonymous participant.
  10. How can we track participant reach if a participant doesn’t want to complete the Participant Information Survey or share their demographic data?: How can we track participant reach if a participant doesn’t want to complete the Participant Information Survey or share their demographic data?: As a requirement of the grant, you are required to make every attempt at gathering complete Participation Information Surveys from participants even if their participation is voluntary. Download the Group Leader Script to facilitate the collection of surveys and check out the tip sheet, Maximizing Complete and Accurate Data
  11. Can we collect additional data?: Yes, you may collect additional data. You can add questions to the standard form packet that captures the required data. Any desired additions to the forms must be submitted for review and approval to your ACL Project Officer and NCOA Technical Assistance Liaison. For tips for modifying OMB-approved data collection tools, review the Do’s and Don’ts for Modifying Data Collection Tools. It’s important to consider the potential burden on respondents and propose additional items that truly provide value, have IRB approval, or are required by other funders.
    1. Separate from the fields required in approved OMB forms, the National CDSME Database offers optional data fields. At the participant level, optional fields include referral source, satisfaction with program, Alzheimer’s cognitive health, health insurance, and household monthly income. At the workshop level, information such as “Funding Source” has been updated and expanded. You can also document whether the format of the workshop as in-person, online, or hybrid; indicate whether it was part of a Wisdom Warriors program; and identify sources of referral, such as through social media or specific partners.
    2. If you wish to add additional data elements to the database, contact your NCOA Technical Assistance Liaison. If the data elements cannot be accommodated, you will have to use your own database to track these items.
  12. Are pre-/post-surveys required for this grant project? What if we would like to utilize them to capture data we can use on the state/regional/tribe level? May we do that using our own database, as long as we enter the required information into the National CDSME Database (CHA Community 2.0)?: The Participant Information Survey should be completed at the beginning of the program and post-test questions should be collected at the end of the last session. If you would like to capture pre-/post-survey data within your state/region/tribe, that is fine, and many others do. You can add those pre-/post-survey forms to the “standard” form packet that captures the required CDSME data (workshop data, participant demographics, and attendance), and enter the data for the pre-/post-surveys into your own data management system.
  13. Some workshops are being supported through non-grant funding. Will these other sponsors (such as Medicaid, private pay, managed care plans, and other insurers) have access to this data?: ACL recommends that you modify the Group Leader Script to include the name of any other sponsors who you intend to share data with. Only individuals who you designate will have direct access to the raw data in the National CDSME Database.  We encourage no more than 5 users per grantee to improve quality assurance.

Data Management Training

  1. There are staff on my team that have not been trained on how to use the web-based the National CDSME Database (CHA Community 2.0). How can they get trained?: Review these resources to get started with the CDSME Database, including how to request an account and view recorded trainings.  Staff involved in any aspect of the data collection process are required to participate in or watch database related webinars. Webinars are updated annually,
  2. What options do we have for providing privacy and security training to our personnel?: See recommendations for Privacy and Security processes for more detailed guidance on providing training to your staff and an overview of best practices for handling and sharing your program data. You do not need to provide any additional training for personnel who have already undergone privacy and security training through their agency. We recommend that when you orient your personnel to the data collection forms that you also incorporate the slides from the PowerPoint included here. It is each grantee's responsibility to monitor that their personnel have completed some type of training and have signed a Non-Disclosure Agreement

Data Entry, Management, and Analysis

  1. How do I request help regarding data collection, data entry, or technical issues related to the database?: Contact your ACL/AoA Project Officer or NCOA technical assistance liaison with broad questions about data collection and reporting requirements. For technical questions related to the National CDSME Database, submit a request for help through the database. 
  2. How do we get set up and access the National CDSME Database?:
    1. For organizations with existing or closed accounts in the national database, provide your name, email, and desired access level (Admin vs Data Entry Only) to reset your previous account. Review and update your account configuration with NCOA to determine if ownership has changed, and whether existing users should be removed or edited.
    2. For new accounts, Submit the Grantee and Users Intake Form to your NCOA Technical Assistance Liaison to establish an account. Once the account is created, the new user will receive an email inviting them to log in and set their password. The URL to log in is:
  3. What is the CHA Community?: The CHA Community is one part of the National CDSME Database and the main way that you will contact NCOA about questions regarding data collection, entry, management, and analysis. You access the community by logging into Salesforce. The community includes several tabs across the top of the page. View the most current database training webinar for a description of these features.
  4. When should data be entered into the database?: Local data entry staff should enter workshop and participant data into the National CDSME Database or a third-party database within 30 days after the end of each program. Grantees using vendors typically make arrangements to have data imported on a quarterly basis. For details, see # 5 below.
  5. Can we manage grant data in a third-party database? How do we migrate data managed by a third-party vendor to the National CDSME Database?: Yes, grantees may contract with a third-party database to enter or manage program data. Please review the Guide to Importing Data into the National CDSME Database very carefully. The grant lead or data manager should contact database manager at the National CDSME Resource Center to coordinate quarterly data migration from the third-party database to the National CDSME Database. The data files must be compatible and formatted following NCOA’s guidelines to minimize errors when uploading the data. Use this template to export the data from the third party database. Ultimately, ensuring timely and accurate data uploads is the responsibility of the grantee.
  6. How many staff members can have access to the National CDSME Database?: We encourage centralized data entry for your project as a quality assurance precaution. Ideally, there should be three to five users per grant with access to the National CDSME Database. In rare cases, NCOA may grant access to more than five users if the grant Project Director assigns appropriate access levels, as defined below.
    1. A “user” is defined as an individual who has access to the system. As this is a web-based system, users can log-in from any computer with internet access. There are two types of users with different levels of access to database functions, including “Administrator” or “Data Entry” users. A “Data Entry” user can only enter workshop data and view the records that they created. An “Administrator” user can enter workshop data, as well as add and modify host/implementation site information. Both types of users have access to the CHA Community.
  7. How do we add new host organizations and/or implementation sites to the database?: Follow these instructions and submit a help request if you have any questions.
  8. We have organizations that are entering data on behalf of multiple implementation sites in their region. Is it the responsibility of the data entry site to have the Non-Disclosure Agreements in place before the data is entered?: We recommend that any data collection and entry personnel sign a Non-Disclosure Agreement prior to their handling of data. Ultimately, obtaining and storing these agreements is the responsibility of the grantee.
  9. Should the Non-Disclosure Agreements be stored at the grantee or partner level?: This is a grantee responsibility, but it may be delegated to a sub-grantee. While it is permissible to maintain the forms locally, remember that this is ultimately a grantee responsibility should the forms need to be retrieved. See Privacy and Security recommendations.
  10. I have information regarding the total number of participants who enrolled in a CDSME workshop, but not the specific sessions that were attended by each participant. Should I still enter this information into the online reporting system?: Because the CDSME grant requires grantees to set and meet goals for program completers, it is important to have comprehensive attendance information entered into the system to track this outcome. Therefore, you should only enter workshop data that includes attendance information for each participant.
  11. If a participant leaves a question blank, can I leave that question blank in the online system?: Yes.
  12. How do I delete a record that I entered accidentally?: Depending on the type of record and your access level in the database, you may be able to delete the item yourself.  Otherwise, submit a help request and NCOA staff will assist you in deleting the record. 
  13. How do I create the Appendix A table for the Semi-Annual Report?: Detailed instructions for completing Appendix A can be found in this brief video tutorial.
  14. Can the National CDSME Resource Center provide any analyses or special reports for grantees?: Yes, time permitting, we evaluate these requests on a case by case basis and can perform basic analyses and exploration of your program data that may not be possible within Salesforce or other software tools currently provided to grantees.  Submit a help request for customized reports.
  15. How is data used for broader research purposes?: NCOA regularly mines the database to answer important and timely questions from the Administration for Community Living and others to inform program planning and policy activities. In addition, NCOA partners with research institutions to conduct rigorous research studies to learn more about the reach, impact, and cost-effectiveness of evidence-based programs.  Data collected on CDSME program activity have been the source of extensive research and evaluation activity, with findings shared in presentations at professional conferences and peer-reviewed publications. Research partners interested in exploring the data are invite to complete a Data Use Agreement.