Inclusion of the Patient Voice: From Planning to Evaluation in Lymphoma Education
Track: Lightning Round
A patient directed education program was launched live and online on august 4, 2016 entitled “Patient Education on B-Cell Non-Hodgkin Lymphomas from Diagnosis to Treatment,” and archived online for 12 months. The program was put forth through a partnership between the Leukemia and Lymphoma Society (LLS), University of Nebraska Medical Center and PlatformQ Health Education, under educational grants from Pharmayclics LLC, an Abbvie Company and Janssen Biotech, Inc. and Genentech. A website cancercoachlive.com was developed to host the education, with content informed through consultation with program faculty, an expert in patient literacy from the University of Nebraska, and patients living with LLS. A planning goal was to optimize the ease of use of the site by patient and caregiver learners. Program faculty included a physician moderator, a nurse practitioner, and a patient advocate from the LLS. The program featured video vignettes of 2 patient survivors of NHL sharing their individual experiences regarding life with cancer. Content was divided into 4 discrete chapters, each of which panelist presentations and discussions, patient video vignettes, LLS tools and resources, audience polling, and audience question/answer breaks: 1) Understanding the diagnosis/B-cell NHL; 2) What tests to expect for B-cell NHL; 3) Treating the disease; and, 4) Self-care and resources. A mixed methods research study was undertaken to assess the impact of the educational initiative on patient-related domains. Twelve semi-structured in-depth interviews were conducted with patient participants regarding knowledge, health-related self-efficacy and behavioral gains that have occurred since educational exposure. Patient learners were also administered online surveys targeting similar domains immediately prior to and following educational participation, as well as 8 weeks post education. Research findings and experiences regarding the qualitative and quantitative evaluation of the initiative, including hurdles related to patient education, will be shared.