Building a Patient-Centered Program to Overcome Clinical Trials Accessibility Barriers

November 2018 Vol 9, NO 11
Scott Kerwin, MN, RN, CCRC, CCRN-NMDP
Be The Match
Jackie Foster, MPH, RN, OCN
National Marrow Donor Program
Be The Match
Debbie Jacobson, OPN-CG
National Marrow Donor Program
Be The Match
Katy Engelby, BA
National Marrow Donor Program
Be The Match
Elizabeth Murphy, EdD, RN
National Marrow Donor Program
Be The Match

Background: Overall survival for some cancer diagnoses is significantly higher for patients participating in clinical trials versus those who do not.

  1. Fewer than 10% of patients with cancer join clinical trials, and only 20% of patients say their healthcare team discussed clinical trials with them.
  2. Major barriers to participation include: (1) Lack of awareness by the healthcare team regarding available options; (2) Limited clinical trial accessibility across cancer centers; and (3) Patient misconceptions about clinical trials.
  3. As patient advocates and educators, navigators are essential to help patients overcome barriers to participation in clinical trials.

Objectives: A needs assessment, which included a literature review, environmental scan, survey of patients and caregivers, and a focus group with oncology nurses, was conducted. Results indicated: (1) A need for patient-friendly clinical trials support and resources; (2) Existing programs and resources are limited in scope; and (3) Nurses and navigators play a critical role in clinical trial enrollment. This assessment shaped the components of a new program to address this unmet need. A diverse team of oncology and technical experts was assembled to begin development with the goal of launching a live support program within 6 months.

Methods: A national patient advocacy organization launched a program in July 2017 to help patients with hematologic malignancies and disorders access clinical trials. This free program includes: (1) One-on-one telephone and e-mail support from a masters-prepared nurse; (2) Easy-to-use, web-based search tool with over 1100 plain language trial descriptions adapted from; and (3) Clinical trial patient education resources. There is also a travel grant that can provide financial assistance related to travel expenses incurred during trial participation. Serving as patient advocates and educators, the development team applied clinical judgment, best practices in health literacy, and knowledge of the patient experience ensuring the program components were clinically accurate, easy to use, and relevant for patients.

Results: Ongoing engagement between patients and navigators enhances program effectiveness. A survey is administered to patients participating in the program measuring overall satisfaction with the program, clarity of information provided, and preparedness to discuss trials with their healthcare team. A follow-up survey is sent 3 months later to track the patients’ success in enrolling in a clinical trial. Oncology care team members from cancer centers throughout the United States serve in a program advisory role providing feedback and guidance to improve the program’s patient-centeredness. To date, nearly 100 patients and navigators have accessed the one-on-one support, and thousands of clinical trial searches have been performed on the program’s website.

Conclusion: Leadership from nurses and navigators in patient advocacy and education helps overcome barriers to clinical trial participation. This program provides tools and personalized support to make clinical trial participation a reality for patients with hematologic malignancies and disorders, demonstrating how oncology professionals’ applied expertise can make a measurable impact on patient health outcomes.

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Last modified: August 10, 2023

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