Lindsey R Enewold, Ph.D.

Background:

The SEER database collects data about people with cancer. SEER stands for Surveillance, Epidemiology, and End Results. Medicaid is a kind of health insurance. It is for people who have low income or serious medical needs. Many studies have shown that Medicaid recipients with cancer are more likely to be diagnosed later in the disease than people with other insurance. They are also less likely to get treatment. Researchers want to compare Medicaid data and SEER data. They want to make this available to other scientists.

Objectives:

To link people in the SEER database to Medicaid data for the years around their cancer diagnosis. To create a file that contains SEER case numbers linked to Medicaid numbers.

Eligibility:

No people are enrolled in this study.

Design:

The SEER finder file will be securely uploaded to the CMS Data Center.

The finder file will be matched against the Medicaid Personal Summary file at the CMS Data Center.

If participants appear in both the SEER file and Medicaid file, their data will be extracted.

The dates of Medicaid data will be compared with the SEER date of diagnosis. Researchers will see if the Medicaid dates fall in certain periods. These are 12 months before, the month of, and 11 months after diagnosis.

If participants are eligible for Medicaid for these periods, a flag will be created in the file. It will note the participants is eligible and why.

The SEER finder file will be destroyed.

The only data saved will be:

Each participant's unique random SEER case number linked to their Medicaid number

Monthly flags about Medicaid eligibility

Numerous studies have demonstrated that Medicaid recipients with cancer are more likely to be diagnosed at an advance stage and less likely to receive recommended treatment than are patients with other types of health insurance. The objective of this project is to link persons included in the Surveillance, Epidemiology and End Results (SEER) data to Medicaid enrollment information during the year before and after their cancer diagnosis. NCI is also seeking permission to create and maintain a file that crosswalks each patient's SEER case number to their Medicaid enrollment number. Information about Medicaid enrollment would be available by special request to all researchers who want to use SEER data to assess the impact of Medicaid enrollment on stage and treatment.

Linkage of Medicaid Enrollment Information to Surveillance, Epidemiology and End Results Data

Linkage of Medicaid Enrollment Lnformation to Surveillance, Epidemiology and End Results Data

National Cancer Institute (NCI)

The I Can PIC website will be provided to participants randomized to the experimental/intervention group.

Participants randomized to the attention control group will be provided a link to a website developed by the American Cancer Society Cancer Action Network.

Participants will be shown (on a computer or via email link) a website called I Can PIC. I Can PIC provides health insurance education, suggests ways to learn about the costs of cancer care and follow-up, shows resources to help offset the high costs of care, and helps individuals estimate (based on national data) how much they might spend on health insurance in the upcoming year.

I Can PIC

Mary C Politi, PhD

The goal of this research study is to find out if a decision aid (DA) created by investigators, I Can PIC, is effective in helping cancer patients make decisions about their health insurance. The investigators will evaluate I Can PIC compared to an attention control condition (existing website created by the American Cancer Society Cancer Action Network). The study hypothesis is that those randomly assigned to I Can PIC will have higher knowledge about health insurance terms and details, more certainty about the best health insurance plan for them, and more confidence in their health insurance decisions compared to those randomly assigned to the control condition.

In a prior study, the investigators created a consumer-friendly online tool, Show Me Health Plans (SMHP), for those enrolling in health insurance in the ACA marketplace. I Can PIC was developed based on SMHP, with input from an advisory board, and incorporating feedback from semi-structured qualitative interviews with cancer survivors. The investigators created I Can PIC to focus on unique needs of cancer patients and survivors considering health insurance. In this study, the investigators will examine the effectiveness of I Can PIC by conducting a randomized experiment with 275 participants. The trial will compare the I Can PIC to an attention control website developed by the American Cancer Society Cancer Action Network. Primary outcomes include knowledge, decision self-efficacy, certainty about plan choice, and the match between plan choice and preferences. The investigators will also explore whether financial toxicity, cancer type, and time since diagnosis relate to outcomes.

Improving Cancer Patients' Insurance Choices

Supporting Cancer Survivors' Health Insurance Marketplace Decisions

The percent correct out of eight questions that were created by the research team based on information that is considered vital to making health insurance decisions.

The validated decision self-efficacy scale will be used. This 11-item scale measures an individual's self-confidence or belief in their ability to make a decision. Individuals will be asked to rate how confident they feel taking actions involved in making an informed choice (e.g., gathering information, asking questions, and expressing opinions).

The validated, 4-item SURE Test for clinical practice will be used. This scale measures whether individuals feel they have enough information to make a choice, are clear about their values for risks and benefits of their choice, and feel they have enough support to make a choice.

Two items from the validated Health Insurance Literacy Measure will be used. This scale measures consumers' confidence in their ability to estimate their annual health care costs and their understanding of health insurance terms.

Two items from the validated Health Insurance Literacy Measure will be used. This scale measures consumers' confidence in their ability to estimate their annual health care costs and their understanding of health insurance terms.

This measure will be assessed at follow-up to see if differences observed between groups immediately post-intervention, remain at follow-up.

Participants will be asked what health insurance plan they would choose. Plan selections will be categorized by the type of plan, e.g., high deductible plan, PPO, silver-tier Marketplace plan, gold-tier Marketplace plan, and will be compared to our algorithmic prediction about good fit plans for users based on estimates of their health care expenses.

Participants will be asked what health insurance plan they choose. Plan selections will be categorized by the type of plan, e.g., high deductible plan, PPO, silver-tier Marketplace plan, gold-tier Marketplace plan, and will be compared to our algorithmic prediction about good fit plans for users based on estimates of their health care expenses.

This measure will be assessed at follow-up to see if differences observed between groups immediately post-intervention, remain at follow-up.

Participants will be asked questions about how often they use healthcare services to see if their plan choice relates to their utilization

The percent correct out of eight questions that were created by the research team based on information that is considered vital to making health insurance decisions.

This measure will be assessed at follow-up to see if differences observed between groups immediately post-intervention, remain at follow-up.

The validated, 4-item SURE Test for clinical practice will be used. This scale measures whether individuals feel they have enough information to make a choice, are clear about their values for risks and benefits of their choice, and feel they have enough support to make a choice.

This measure will be assessed at follow-up to see if differences observed between groups immediately post-intervention, remain at follow-up.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Linkage of Medicaid Enrollment Information to Surveillance, Epidemiology and End Results Data	NCT02875327	Neoplasm Health Services... Outcome Assessm... Healthcare Disp...		1 Year - 120 Years	National Institutes of Health Clinical Center (CC)
Improving Cancer Patients' Insurance Choices	NCT03592433	Cancer Health Literacy Health Insuranc... Health Services... Informed Decisi...	I Can PIC	18 Years - 64 Years	Washington University School of Medicine
Improving Cancer Patients' Insurance Choices	NCT03592433	Cancer Health Literacy Health Insuranc... Health Services... Informed Decisi...	I Can PIC	18 Years - 64 Years	Washington University School of Medicine

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