Issues Important to Patient Research Advocates
Read about the issues important to patient resource advocates including health data basics, the associated financial burden of cancer treatment, and the toxicities of medical treatment.
Patients, families, and caregivers partnering with researchers from
The University of Kansas Cancer Center
to re‐define cancer research.
Health Equity: PLAN4Health
This toolkit provides resources to help users better understand health equity, health inequalities, and the social determinants of health.
Financial Burden/Toxicities of Medical Treatment
- Financial Toxicity Is a Clinically Relevant Patient-Centered Outcome
- Not Just Nausea and Vomiting: Cancer Docs Now Worry About ‘Financial Toxicity'
- It's Not an Even Playing Field: How Financial Instability Takes A Toll On Cancer Patients
- The National Health Council Value Framework Get-Ready Checklist for Patient Organizations
- 50 Health Issues That Count as a Pre-Existing Condition
Health Data Basics
Video discusses what happens to your health information
- HealthIT.gov - Patients & Families
Website teaches users about the benefits of health information technology and how to take advantage of it to improve their lives
Online portal, designed by Harvard University, for those curious about where their data goes and how the data are connected in a complicated system
- Your Cells. Their Research. Your Permission?
Article by Rebecca Skloot
To Screen or Not to Screen?
- Cancer Screening, Part 1: Principles of Screening
This 11-minute video, produced by Oncology for Medical Students in April 2017, aims to explain what a screening test is, the major issues surrounding screening tests, and the list of criteria that define a good or acceptable screening test, as described by Wilson and Junger in 1968.
- Cancer Screening, Part 2: Validity - Sensitivity and Specificity
This 9-minute video, produced by Oncology for Medical Students in May 2017, describes measures of screening test validity (how good it is), sensitivity (how well it correctly identifies people with the disease), and specificity (how well it correctly identifies people without the disease).
- Cancer Screening, Part 3: Sensitivity/Specificity Tradeoff
This 7.5-minute video, produced by Oncology for Medical Students in May 2017, describes the issue of the sensitivity/specificity tradeoff.
- The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee
- The Immortal Life of Henrietta Lacks, Rebecca Skloot
- The Developing Genome: An Introduction to Behavioral Epigenetics, David S. Moore
- Blind Spot: The Hidden Biases of Good People, Mahzarin R. Banaji & Anthony G. Greenwald
- How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS, David France