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Alzheimer's Resource Room Home | AGE Home | |
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Protocols & Instructions • Data Collection ProtocolData Collection Protocol The data collection protocol has been designed to maximize the utility of the data for informing policy and practice and minimize the data collection burden on participating grantees. Each grantee will have a choice of format for collecting and reporting data to the national evaluation team. However, all required data elements must be collected and documented in a manner that produces data that are consistent across all the grantee programs. Consistent reporting will maximize the utility of the data for identifying the successes of each individual grantee as well as the entire demonstration. Consistent reporting is also necessary for comparisons to be made between data from the current and previous ADDGS programs and other national programs and studies. Type of Data to be Collected Three types of data will be collected for the evaluation of Alzheimer’s Demonstration Grants to States Program (ADDGS). Data will be collected pertaining to
Three types of data forms have been designed to facilitate data collection:
Data Submission Process Each grantee may choose to submit data in one of four ways:
 Protocol for the Client Intake Form The client intake form is intended to provide complete information about the characteristics of the clients served through the ADDGS demonstration. In combination with the Service Use Form, this information can provide important tracking information for clients and an accurate description of the client population. This information is critical for documenting the extent to which the demonstration program reaches the target populations and for making comparisons between clients of the ADDGS programs and other national studies. A. Person for whom this Record is to be Completed The client intake record is to be completed for all persons enrolled in an ADDGS program or using a service funded fully or partially by the demonstration. Client data will be collected for:
The Client Intake Form should be completed once for each client. The Client Intake Form is to be completed by the time the client enrolls in their initial demonstration service regardless of the number of services provided. C. Person Designated to Record Data The agency staff member responsible for enrolling the client should complete this form. D. Frequency of Data Transfer Data pertaining to all new clients should be forwarded to the evaluation team four times per year (every three months) using one of the four designated data reporting procedures (See "Data Submission Process" above). If data are to be reported using scanable forms, the original Client Intake Forms should be forwarded to the evaluators and copies should be kept in the agency files. Protocol for the Service Use Form The Client Service Record is intended to document all of the services used by a client family. The use of all demonstration funded services delivered to a client-family should be entered on this record. A. Persons for whom this form is to be Completed A separate Service Use Form should be maintained for each demonstration client-family by every agency providing services. All services provided to a client-family by a single agency should be recorded on the same Service Use Form. Service Use information should be maintained for all persons using services from programs fully or partially funded through the demonstration. B. Types of Service use to be Recorded All services provided to any member of a client-family, including caregivers and elder clients, should be recorded. Services to be entered include:
Each agency should record the dates and amount of service used by each client on a monthly basis. More frequent recording is encouraged. D. Person Designated to Record Data Any persons designated by the agency can record this information. In the case of voucher or reimbursement programs, the Service Use information should be tracked and reported by the agency administering the program. E. Frequency of Data Transfer All data pertaining to client service use records should be forwarded to the evaluators every three months (four times per year) using one of the four designated data reporting procedures (See "Data Submission Process" above). If data are to be reported using scanable forms, the original Service Use Forms should be forwarded to the evaluators and the copies should be kept in the agency files. Protocol for the Agency Service Profile Form The Agency Service Profile Form is designed to provide a description of the key characteristics of the service programs fully or partially funded by the ADDGS. This form will provide a user-friendly mechanism for reporting service characteristics in a standardized format that will enable comparisons to be made among the diverse programs. Agency Profile data will also be used to assess the link between service delivery characteristics and patterns of client service use. A. Programs for which this Record is to be Completed Information about program characteristics should be reported for all agency-based programs that are fully or partially funded by the ADDGS project and that provide in-home support services or day care services in a group setting. A form should be filled out for each separate service (in-home or group) that an agency may provide. In the case of group setting services, each different location/setting would constitute a separate service. For example, an agency may operate two Adult Day Cares - one located in county A and another in county B. The agency would need to fill out one Agency Service Profile Form for each of these ADCs as each ADC may offer a different variety of individual service options (personal care, assisted transportation, etc.). A form should be filled out for each ADC even if they provide exactly the same service options, as staffing, client participation, hours available, etc. may also be different. In the case of in-home services, an agency can distinguish separate services (for which the form would need to be filled out) by location and enrollment options. If an agency runs an in-home respite service that operates separately in multiple counties or neighborhoods - that means that they have separate staff and possibly different service options in each area - they would need to fill out a separate form for each service location. However, if the agency runs one in-home program that serves five counties and uses the same staff, administration, etc. for all areas, the agency would fill out one form. Separate service programs can also be distinguished by client enrollment procedures. When a client enrolls in an agency’s in-home program do they automatically become eligible to use all the service options (chore, personal care, home health, etc.) if they chose? Or does the client have to enroll (or qualify) for various service options separately? If the client is automatically able to access all service options by enrolling once, the agency (for the purposes of the ADDGS evaluation) has one in-home service and fills out one Agency Service Profile. However, if the client must enroll or qualify multiple times to access various service options, then the agency has multiple in-home programs and will need to fill out a corresponding number of Agency Service Profile forms. B. Frequency and Time for Collecting Program Data The Agency Service Profile Form should be completed at the time that services are first offered to demonstration clients and at one-year intervals thereafter. It is not necessary for clients to use services before this information is reported. It is only necessary that the services be available to clients. C. Person Designated to Record Data An informed employee, as designated by the participating agencies, should complete the Agency Service Profile Form. It is recommended that the employee be a director or manager of the service program to ensure the accuracy of the information reported. D. Frequency of Data Transfer Information pertaining to program characteristics should be forwarded to the evaluation team once each year. If data are to be reported using scanable forms, the original Agency Service Profile Form should be forwarded to the evaluators and a copy should be kept in the agency’s files. Protocol for ADDGS Project ID Numbers For the ADDGS project, three ID numbers will be assigned.
Each state will use the following two digit ID numbers:
(Note: The initial grantees of the ADDGS project used the ID numbers 1-15. In order to keep the data separate for later comparisons, we are using ID numbers 16-31 for the current grantees.) Agency ID numbers Each contracting agency that provides services partially or fully funded through the ADDGS should be given a four digit ID number by the state coordinator. The first two numbers of every agency ID number will be the state ID number. For example, agency number 2201 would refer to the first agency in Minnesota. Twenty-two (22) is state number (Minnesota) and 01 is the agency identifier number. We recommend that the state coordinator generate an ongoing list of all participating agencies and assign them a number as they enter the ADDGS project. Each agency number will include the state ID followed by a unique two digit number assigned by the state coordinator. The state coordinator will maintain a list of participating agencies (the ID numbers, key contact, agency name, address, phone, fax, email) and forward lists to the evaluation team annually. Client Family ID numbers The Client Family ID numbers are an eight digit number that includes the state ID, the intake agency ID, and a four digit counter to identify the client family. For example, Client Family ID number 19020001 would refer to the first client enrolled by the second agency in the state of California. 19 is the state number (California), 02 is the agency number, and 0001 is a counter number that identifies the client family. The full eight-digit Client Family ID number should always be used. Each agency will begin with the client identifier number of 0001 and number each client family consecutively as they complete intake forms. Client ID numbers are assigned at the time of Intake into the ADDGS project. If families disenroll, DO NOT reassign their identifying number. Once a number has been assigned to a client family it cannot be used for any one else, even if they disenroll prior to using services. If two people (for example a husband and wife with an adult child caregiver) in the same family are using ADDGS services, they would both use the same Client Family ID number. The Client Family ID number is assigned to the family not the individual(s) with dementia.
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