Provider FAQ

Q: What is the Long-Term Data Cooperative?
A. The Long-Term Care (LTC) Data Cooperative is a provider-led effort that assembles electronic health record (EHR) data across geographically and structurally diverse long term care (LTC), post-acute care (PAC), and residents. Our mission is to improve the quality of care within LTC and PAC by translating comprehensive data on post-acute and long-term care residents nationwide into accessible and actionable information for clinicians, managers, and policy-makers.

Q: Which Electronic Medical Records (EMR) companies are participating?
A. We currently have agreements with MatrixCare and PointClickCare (PCC). Please note that you do not have to use one of these EMR vendors to enroll, and we are always looking for additional EMR vendors to join.

Q. Can assisted living communities participate?
A. Yes, assisted living communities are encouraged to enroll and participate in the Long-Term Care Data Cooperative. We currently have agreements with MatrixCare, and Point Click Care (PCC). Please note that you do not have to use one of these EMR vendors to enroll, and we are always looking for additional EMR vendors to join.

Q: What are the goals of the Long-Term Care Data Cooperative?
A. These data serve four key purposes:
(1) healthcare operations/population health analytics
(2) public health surveillance
(3) observational, comparative effectiveness research
(4) clinical research studies

For approved research studies, electronic health record (EHR) data can be linked with Medicare claims and other data from the Centers for Medicare & Medicaid Services (CMS) via the NIA Data LINKAGE Program.

Q. Who is overseeing and running the LTC Data Cooperative?
A. The LTC Data Cooperative is a provider-led effort governed by the American Health Care Association and the National Center for Assisted Living (AHCA/NCAL), with funding from the National Institute of Aging (NIA) through the IMPACT Collaboratory. An Advisory Committee comprised of providers (AHCA/NCAL Board members, AHCA/NCAL committee participants, and LTC Data Cooperative participants) EMR vendors, and academic researchers provides advice and input on major decisions. Researcher access to the data is granted by the LTC Data Cooperative Research Review Committee with input from providers. Input from enrolled organizations is also sought prior to major decisions or changes.

Q: Whom do I contact if I have questions?
A. Please contact ltcdatacooperative@ahca.org with general questions. A representative will respond within 24-48 hours.

Q: What do I get from joining?
A. Enrolled provider organizations will receive free, customized facility- and organization-level feedback reports to help with clinical care or operations. These reports will be developed with input from enrolled providers and may include quality measures (existing and new), measures of adverse events (such as hospitalization, falls, adverse events from medications), antibiotic stewardship, and benchmarks of peers and care practice profiles such as use of antivirals for COVID-19 positive residents. Provider feedback reports are intended to complement existing reports available from other sources and are developed with input from enrolled organizations.

Q. How does this help the long-term and post-acute care community?
A. A major barrier to developing appropriate clinical and operational responses during the COVID-19 pandemic was the lack of evidence on what works. We need more current data to rapidly answer these types of questions. In addition, many of the clinical decisions, treatments and practices in long term and post-acute care facilities are based on evidence from younger individuals or healthier elderly people living in the community. We need to understand what works and does not work for people who use long-term care services. The LTC Data Cooperative will provide a comprehensive data set for academic researchers to help answer these questions.

Q. Are LTC/PAC facilities or staff required to do anything after enrolling?
A. No, there are no expectations for enrolled providers or staff to do anything. The parent organization does need to identify a primary contact that LTC Data Cooperative staff can communicate with and share facility-level provider reports. There is no requirement that the provider reports be used. Please keep us informed of any new facilities you acquire or sell. There are opportunities to participate in various committees and groups, review and provide feedback on researcher applications, but participation is voluntary and not required.

Q. Do we have to participate in research?
A. All research opportunities that involve participation by the facility (e.g., a trial that involves evaluating outcomes of a new treatment or implementation of guidelines-based care ) are voluntary and participation is never required. Providers do not need to take any additional steps to have their data included in studies that only involve analyzing the EMR data included in the LTC Data Cooperative.

Q. What data is collected from my EMR?
A. Your EMR vendor shares data on your behalf. The goal is to collect all the clinical information in the EMR. No billing or

Q. How frequently is our data transferred?
A. The LTC Data Cooperative transfers data on a monthly basis.

Q: Will any of our data be stored outside the United States?
A. No, data will only be stored in the United States.

Q: Will data be returned to the organization if the organization withdraws from participation?
A. The data will not be returned. Any data already transferred will remain within the LTC Data Cooperative enclave for research purposes. Once an organization withdraws, no additional data are transmitted.

Q. Do I need to sign a business associate agreement (BAA) to participate?
A. Yes, a BAA is required to enroll.

Q: What forms do I need to enroll?
A. Your organization will need to complete and submit the required legal agreements, which include a Consortium Participation Agreement, which includes a Business Associate Agreement, and a Data Release Form to your EMR vendor to share data with us. You can receive copies of these documents by emailing ltcdatacooperative@ahca.org. You will receive a confirmation email within 72 hours of receipt. Once all parties have signed the legal agreements the data release form will be sent to your EMR Vendor to begin the data transferring process.

Q: Who should I contact for assistance with enrolling?
A. Please contact us at ltcdatacooperative@ahca.org. A representative will respond as soon as possible but no later than 24-48 business hours.

Q: How do I know if my organization is eligible to participate in this data cooperative?
A. All organizations with LTC and PAC provider facilities are eligible to participate at no cost!

Q: If my EMR vendor does not participate, can I still join this cooperative?
A. Yes! You may participate in the data cooperative even if your EMR vendor does not choose to participate since EMR data is your data. Please complete all the steps to register. A team member from the LTC Data Cooperative will notify your EMR provider of your participation.

Q: What are the next steps after completing the registration?
A. You will receive a confirmation email once all requirements have been successfully submitted. The email will be sent to your appointed primary point of contact. The application will be reviewed by a LTC Data Cooperative team member to ensure all appropriate documents have been received and accurately completed. Your EMR provider will then be notified of your participation.

Q: Do I need to reach out to my EMR vendor first?
A. No! An LTC Data Cooperative team member will notify your EMR vendor of your participation. We currently have data transfer arrangements set up with MatrixCare and PCC.

Q. Can I disenroll?
A. Yes, you can disenroll at any time by emailing us at ltcdatacooperative@ahca.org. However, data that has already been transferred will continue to be used since removal would impact ongoing research and data reports.

Q. How much does it cost to join?
A. There is no cost for providers to join!

Q: Who has access to the data?
A. Data is stored securely by Acumen. The LTC Data Cooperative team can access these data to generate reports for participating organizations. Academic researchers who have received all the appropriate Institutional Review Board (IRB) approvals, and approval from the LTC Data Cooperative Research Review Committee on their research objectives, will be granted access. The data will not be downloadable or transferred to users but will be accessed through secure cloud-based research environment. Finally, public health professionals that have been approved by the Public Health Surveillance Committee may use anonymized data for public health surveillance purposes.

Q: What access to our data do the other enrolled providers have?
A. Other enrolled providers will not have access to any of your data. Enrolled providers only have access to aggregate reports specific to their facilities.

Q. Will federal regulators or state licensing agencies have access to the data?
A. No; neither Survey and Certification at Centers for Medicare & Medicaid Services (CMS) nor state licensing agencies of providers will have access to the data.

Q. Can other individuals get access to the data such as hospital systems, insurance companies, etc.?
A. No; only providers and approved academic researchers will have access to the data. Decisions on data use and sharing are made by the Advisory Committee, comprising leaders from AHCA/NCAL (board members, committee chairs/members), providers, and participating EMR companies.

Q. Will my data be shared with (Health Information Exchanges) (HIEs) or other provider systems (e.g., such as hospital or physician EMR?
A. No; this data will not be shared with HIEs or other provider settings’ EMRs.

Q. Will my data be sold to others?
A. No, the LTC Data Cooperative will NEVER sell your data. The data will be used for your benefit or for research that is federally-funded or otherwise non-commercial.

Q: What steps will my organization need to complete to start the data-sharing process?
A. There are no additional steps. The authorization you have provided in the Consortium Participation Agreements will be sent to your EMR provider.

Q: Is there a tutorial on how to access the provider feedback reports?
A. Not at this time, but there will be a secure portal that will allow access to the reports.

Q. How secure is the LTC Data Cooperative?
A. We take data security extremely seriously. The data is stored in a secure environment only accessible by LTC Data Cooperative staff. The data is converted into a usable database for use by academic researchers who access it only through a secure virtual environment, and cannot download it for any reason. For additional data and security questions, please contact the LTC Data Cooperative team at ltcdatacooperative@ahca.org.

Q. How will resident confidentiality be protected?
A. No names, medical record numbers, or other personal identifiers are available from the data. All data is stored in a secure environment. All academic researchers that are approved to access the data sign a Data Use Agreement that prohibits any attempt to re-identify any individuals. Please contact ltcdatacooperative@ahca.org for more information.

Q: Do I need to get consent from my residents?
A. Resident consent is not required since each enrolled organization will be signing a BAA with the LTC Data Cooperative. For research uses, the need for consent will be decided by the Institutional Review Board (IRB) and will be the researcher's responsibility. For research projects that are solely analyzing data, a waiver of consent is commonly granted. If research involves a new “intervention” (e.g., testing the effectiveness of a treatment), then consent is often required and will be the responsibility of the researcher to obtain. The Research Review Committee examines each application to make sure the appropriate IRB approvals and waivers are in place.

Q. Will my organization’s name be publicly shared or mentioned in research?
A. The name of your organization will only be shared if you explicitly grant a researcher permission. All public reports, publications, or presentations will report data in aggregate and a form that should not allow identification of the participating organizations.