Background: Blood and marrow transplant (BMT) patients encounter many barriers while accessing curative treatment. Psychosocial support is essential for the well-being of people with cancer and other blood diseases treated with BMT. Because of this need, a government mandate (US Congress S. 2946) was put into place in 1990 establishing an Office of Patient Advocacy to assist patients going through BMT. Since implementation, these services have been provided via a telehealth system. Providing psychosocial support to individuals and groups via the telephone may reduce access barriers, including long geographic distances, restricted mobility, and limited resources.1 In 2016, a benchmarking exercise was conducted to ensure that the structure and scope of services provided via a telehealth system are in line with the best practices of similar patient advocacy organizations.
Objectives: (1) Identify opportunities for quality improvements to the support services provided to BMT patients and families; (2) Analyze how other organizations achieve results; and (3) Use the results to improve and/or increase the services offered.
Methods: Structured phone interviews were conducted with program leaders of well-established US telehealth-based patient advocacy organizations (N = 5). Questions focused on resources and services provided, method(s) of service delivery, and staffing models. Interview notes were compiled and analyzed for common themes. In addition, a literature review was conducted to define the patient navigator role.
Results: Program gaps identified include the provision of emotional and mental health services for BMT patients, caregivers, and family members, as well as the implementation of an instant chat feature for patient navigation. Benchmarking interviews highlighted the need to raise visibility of the program within the BMT patient and health professional community by defining the navigator role and implementing national certification. As a result of these findings, the organization has adopted the GW Cancer Center’s definition of patient navigator2,3 (a patient navigator is a healthcare expert who helps patients, their families, and caregivers to overcome any barriers they may face in the healthcare system and to facilitate access to all types of medical care, emotional support, and other needs as well. Navigators work with patients from diagnosis through survivorship), and all staff will be trained on core competencies for patient navigation.4
Conclusion: Patient advocacy organizations that provide telehealth services are an important provider of emotional and psychosocial needs to patients undergoing major medical procedures, like BMT. Review of relevant literature as well as comprehensive benchmarking led to significant and effective changes to the provision and promotion of navigation services provided. It included the adoption of a certified patient navigator role definition to raise visibility within the BMT community and better describe the service and support provided. In addition, telephone-based counseling services were implemented as well as an instant chat feature. The structure and staffing model implemented can be applied to both institution-based and telehealth support programs to effectively address psychosocial needs across the treatment continuum.
- Goelitz A. When accessibility is an issue: telephone support groups for caregivers. Smith College Studies in Social Work. 2003;73(3):385-394.
- George Washington University (GW) Cancer Center. Guide for Patient Navigators. A Supplement to the Oncology Patient Navigator Training: The Fundamentals. https://smhs.gwu.edu/cancercontroltap/resources/guide-patient-navigators-supplement-oncology-patient-navigator-training-fundamentals. 2015.
- GW Cancer Center. Patient Care: Patient Navigation. https://smhs.gwu.edu/gwci/patient-care/patient-navigation.
- Pratt-Chapman ML, Willis LA, Masselink L. Core Competencies for Non-Clinically Licensed Patient Navigators. The George Washington University Cancer Institute Center for the Advancement of Cancer Survivorship, Navigation and Policy: Washington DC. 2014. https://smhs.gwu.edu/gwci/sites/gwci/files/PN%20Competencies%20Report.pdf.