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Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
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- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
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- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
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During National Minority Health Month each April, we highlight PCORI’s large portfolio of research addressing disparities in health and healthcare. PCORI has awarded $192 million to fund 70 research projects on addressing disparities. One of these projects takes on colorectal cancer, for which early detection clearly saves lives: 90 percent of people whose colorectal cancer is early stage at diagnosis live for at least five years, but only 14 percent of people whose cancer has spread to other parts of the body survive that long. Screening rates differ between groups of people, with Hispanics/Latinos falling behind whites.
The US Preventive Services Task Force recommends routine screening for colorectal cancer starting at age 50. The two most common tests are a colonoscopy, repeated every 10 years if findings are normal, and a stool blood test, required once a year. People need to do one or the other, not both.
A coalition of cancer organizations has set a goal of an 80 percent screening rate by 2018. Currently, the national screening average is 66 percent, and the average among Hispanics/Latinos is only 47 percent.
We spoke with two members of a research team that is testing a method to increase screening among Hispanic Americans. Ronald E. Myers, PhD, of Thomas Jefferson University is the principal investigator of the study, and Myra Piña, MD, of the Fé Foundation of the Hispanic Chamber of Commerce of the Lehigh Valley is a member of the study’s patient and stakeholder advisory committee.
The navigators are able to reach out to the patients and make them feel that they weren’t under pressure.Myra Piña
Why do Hispanics have low rates of screening?
Myra Piña: Many people in the community don’t know about colorectal cancer screening. Language can be a barrier. Even though some people in the Hispanic community speak English, many of them speak what I call functional English. They can function in their field of work. But when they go to the doctor’s office, the language barrier comes in.
There’s also a fear of being screened—a fear of getting a positive or abnormal test result and not really knowing what that means. And some people lack insurance and wonder, how am I going to pay for this?
Ronald Myers: Myra and her colleagues on the patient and stakeholder advisory committee also pointed out that people are working; they’re very busy. Trying to make time to do a screening test is a challenge.
How does the program you’re testing aim to increase screening rates?
Ronald Myers: We use an intervention that we describe as “decision support and navigation.” We mailed Hispanic primary care patients who have never been screened, or are not up to date, with screening information—in both English and Spanish—about the different types of colon cancer screening tests that are recommended. Then, a trained patient navigator, who speaks both Spanish and English, called each person and talked them through the options.
We also provided information about, and access to, both of the tests. Importantly, we also asked people which test they preferred and how likely they were to do their preferred test. That allowed us to help them develop a screening plan that they would be most likely to follow.
Myra Piña: The navigators are able to reach out to the patients and make them feel that they weren’t under pressure. They explained in such a caring way that the person came to their own decision about following the screening plan. The navigator worked hard to create a helping relationship with the patient on the phone.
We're very happy about the results.Ronald Myers
How have patients and other stakeholders influenced the study?
Ronald Myers: They made the content of the print materials and navigation call process much more friendly and easy to understand. For example, our committee members corrected and simplified the terminology of the Spanish translation of our brochure describing the screening tests. The committee members also helped to develop a script for the navigator to use on the phone with patients.
Myra Piña: I found it exciting that, at the committee meetings, the more we met, the more the patient members began to participate. And they also took away knowledge. One of the members of our group brought the information we developed back to his family, and the family said, “Hey, Dad! It’s time!” And the father then went and got a colonoscopy done.
What were your study results?
Ronald Myers: We’re very happy about the results. When we started the project, Hispanic patients in the Lehigh Valley Health Network practices had a screening rate of about 30 percent. The 400 people in our study came from the 70 percent that hadn’t been screened. It was a randomized trial, where half of the people just got the mailed materials, and the other half got that mailing plus the decision support and patient navigation. In the first group, the screening rate six months later was 39 percent. In the decision support and navigation intervention group, the rate was 71 percent. That’s a huge difference. When we looked at 12 months after the intervention, the group with just the mailing had a screening rate of 44 percent, and it was 78 percent in the intervention group.
We’re now turning our attention to how we move that intervention into routine care, so that it can make a difference for a lot more people, not just the people in the study.
The views expressed here are those of the authors and not necessarily those of PCORI.