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Registry Plus™ Web Plus Survivorship Module

In response to a 2005 Institute of Medicine report, a number of expert organizations have recommended that patients, along with their primary care providers, receive a summary of treatment provided as part of a comprehensive survivorship care plan. However, implementation of these plans has been slow, largely because they can be very time-consuming to produce.

To help reduce barriers to delivering survivorship care plans to cancer survivors, the Colorado Central Cancer Registry (CCCR), with funding from CDC’s National Program of Cancer Registries (NPCR), developed a secure, Web-based application that allows providers to use previously collected cancer surveillance data from the central cancer registry to pre-populate and semi-automate survivorship care plans. Data also may be loaded directly from the hospital cancer registry. Through this application, the provider has access to the information available in the cancer registry and can edit or add to the patient’s diagnosis and treatment information, as well as provide customized guidance for the patient, such as recommended follow-up and health behavior changes. When the provider is satisfied with the information and guidance he or she has selected, he or she can deliver the plan to the patient.

CDC is working with the CCCR to integrate the application into Web Plus and plans to make the application available soon to central cancer registries funded by NPCR that are interested in supporting it. The Web Plus Survivorship Module initially will include templates for female breast and colorectal cancers, a generic template for all other cancers, and A Wellness Guide for Cancer Survivors that covers general cancer information, physical activity, nutrition, stress management, sexual health, and smoking cessation.

Frequently Asked Questions

When will a production version of the Web Plus Survivorship Module be released?

CDC is continuing to work with the Colorado Central Cancer Registry to integrate the application into Web Plus, and plans to make the application available to central cancer registries (CCRs) funded through the NPCR that are interested in supporting it as soon as beta testing is complete.

A dissemination plan, training materials, and other informational products are under development and will be shared with NPCR CCRs as they become available.

How much will the Web Plus Survivorship Module cost?

The Web Plus Survivorship Module is free to NPCR registries and their collaborating providers. Others may also download the module; however, support is typically limited to NPCR registries and available staff.

How will the cancer registry pre-populate data into the tool?

Data are populated from the standard cancer registry file format defined by the North American Association of Central Cancer Registries (NAACCR), so any cancer registry software program at either a hospital or central registry will be able create a subset of patients that can be loaded into the program. Each NPCR CCR supporting this module will decide how to select the patients to pull into the program. CCRs may opt to have providers request certain patients asneeded, or may choose to import all cases in the cancer registry database continually, allowing providers to search for their patients in the Web Plus Survivorship Module. In some cases, large hospitals with their own cancer registries may choose to load their own cases. It will be up to the NPCR CCR in the state to choose and execute the approach.

How does the Web Plus Survivorship Module work?

Data are loaded into the application using a standard NAACCR file as described above. The application reads the file and transforms it into the data entry screens shown on the demonstration video. The providers can then modify, edit, or add information into the tool. When the provider is satisfied with the information entered, he or she can print a custom survivorship care plan for the patient in portable document format (PDF).

Can information at the provider level that is in an electronic health record be integrated into the module?

No. At this time, data are populated only from the cancer registry. However, we have attempted to increase efficiency not only by pre-populating the data from the registry, but also by allowing providers to store information in the module that is specific to their facility like contact information and preferred follow-up schedules. This will save providers time by reducing the need to type in names, phone numbers, and follow-up information each time they complete a survivorship care plan. Additional information can be added manually, if needed.

Can patients have access to the Web Plus Survivorship Module?

At this time, patients do not have direct access to the module. Patients would receive their plan from a provider in printed format and/or electronically via the PDF file. If the PDF is accessible through a patient portal hosted by the patient’s physician, the patient could access the information that way as well.

Will the central cancer registry have the data in time to prepare the survivorship care plan?

The lag time in the reporting of cancer cases to the central cancer registry is typically about six months after diagnosis. It is important to remember that the survivorship care plan should be given at the end of treatment, which often lasts longer than six months. Furthermore, many patients feel that they are not ready to receive the information on the last day of treatment. Rather, many practices deliver the plans one to three months after the end of treatment. This gives the central cancer registry time to collect and consolidate the data before they are needed to complete the survivorship care plan. In a small pilot conducted in Colorado, the central cancer registry had more than 95% of the cases that hospitals requested for survivorship care plans.

How is data security managed?

Web Plus is hosted on a secure Web server that has a digital certificate installed, and the communication between the client and the server is encrypted with Secure Sockets Layer (SSL) technology.

Data rights are given at the hospital or facility level. If a patient’s cancer data indicate that he or she was diagnosed or treated at a specific facility, then that patient’s data will be available to providers who are assigned to the same facility. For example, the data about a patient treated at Hospital X will be available to providers who are registered users of the Web Plus Survivorship Module and assigned to Hospital X.

Many hospitals assign a small number of staff to develop all of the survivorship care plans for their facility. Just like the providers in the example above, facility-level security allows these staff to access all of the data they need from patients treated at Hospital X.

When a production version of the Web Plus Survivorship Module is available, whom should I contact to begin using it?

Central cancer registries (CCRs) are the primary intended users of all Registry Plus software, including the Web Plus Survivorship Module. When the module becomes available, CDC will help CCRs set up the software and perform basic customization. Periodic software updates and problem solving will be provided as resources allow, exclusively by telephone and e-mail to CCRs. CDC is not staffed to provide on-site services, nor can we support hospitals, clinics, laboratories, or other private users.

A CCR or other institution redistributing the Web Plus Survivorship Module will provide support to end users and develop expertise in using the software among its own staff. Other users of the Web Plus Survivorship Module should contract, hire, or develop capability independently to understand and maintain the software applications. Contact your central cancer registry.

Whom should I contact if I have additional questions about the Web Plus Survivorship Module?

If you do not work in a CCR (you are a patient, provider, or work in a hospital), please contact your CCR about its plans for making this tool available to providers in your state.

If you work for a CCR, please check this Web page periodically for updates.