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DATA COLLECTION CONSIDERATIONS Using Self-Reported Data

When designing economic evaluations, a common question is what data sources should be used for specific cost measures. One option is to capture health care utilization via self-reported data (i.e., health care utilization is added to the data collection forms). The recall period for cost measures should ideally be the past 7 days; however, in practice this may encompass up to a month. In some instances, health care experiences which are more memorable, such as overnight hospital stays, could potentially be reported using an even longer recall (i.e., up to a year), depending on the frequency of the service used, availability of records to verify the service used, and cognitive abilities of the individual reporting the data.

Using Health Care Statements or Claims Data

One alternative to obtaining health care costs via self-report is to collect participants’ health plan statements. It is standard process for both private and public (i.e., Medicare, Medicaid) health plans to mail (or e-mail) a statement of benefits following the use of inpatient and outpatient health care services. The statement of benefits typically states the dates of service, provider name, billing codes, allowable amount (the contracted amount that the provider will be paid), the amount paid by the plan, and the amount that must be paid by the individual who is insured (commonly referred to as “out-of-pocket costs”). The information provided on the statements can in turn be collected alongside the study; hence, it can have the potential to be a reliable source of information regarding health care costs. However, it should be noted that individuals might be prone to forget to retain these statements for study purposes, and thus, should be reminded (perhaps even provided a clearly labeled folder). In addition, such statements exclude health care services that are not reimbursed (e.g., massage therapy, acupuncture, caregiver support, over-the-counter medications, and nutritional supplements).

A third potential approach to costing health care services is to use administrative claims. Table 18.6 shows variables that are typically included in administrative inpatient (hospital), outpatient (provider visits), and pharmacy (prescription)

TABLE 18.6 Data Elements in Administrative Health Care Claims Databases

Data Element

Inpatient Hospital Claims

Outpatient Medical Claims

Pharmacy

Claims

Participant name

Not usually

Not usually

Not usually

Participant identification number

X

X

X

Gender

X

X

X

Date of birth

X

X

X

Diagnoses (ICD-9 or ICD-10a codes for primary and other conditions)

X

X

Date of service

X

X

X

Diagnosis-related group (DRG) reimbursement code

X

Current procedural terminology (CPT) reimbursement code

Xb

X

Drug(s) dispensed

Xc

X

Days' supply of medication

X

Quantity of medication dispensed

X

Plan name

Sometimes

Sometimes

Sometimes

Amount charged for the service ($)

X

X

Amount ($) reimbursed for the service

Sometimes

Sometimes

X

“international Classification of Diseases, 9th and 10th revisions.

bHospital claims include CPT codes if procedures such as diagnostic tests or surgeries are performed during the inpatient stay.

Prescription medications are included only in outpatient claims databases when the drug is administered in the physician’s office.

claims databases. Claims are considered a reasonable measure of the amount reimbursed by health plans for health care services, but it may be difficult to obtain these data if obtaining the data is expensive and/or if the data are “siloed” (e.g., inpatient claims may be in one data set, and outpatient and pharmacy in other data sets, each of which may have its own nuances and take considerable time and planning to properly analyze). The main limitation of using claims to complement clinical trial data is that the number of different payers represented by trial participants may pose significant practical challenges to obtaining data use agreements, with the potential that some payers may not agree to provide data.

 
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