JL1003P: Building Block of Hope®: A Model for Advanced Practitioner Global Advocacy

Background:
Living with cancer requires life-long learning and adaptation. The episodic nature of health care today, places the patient and their caregivers in a position of vulnerability with the expectation that they will take the primary role in managing their care despite having little or no formal training (Kurtin, 2016, 2017). Patient-centered communication and educational tools may expand treatment options, including access to clinical trials, may improve management of symptoms, extend survival, and increase quality of life (LeBlanc et al., 2019).

Patient and caregiver empowerment through education and training for self-management is a core component of the Hematology/Oncology Advanced Practitioner (AP) role (Kurtin et al, white paper). APs involved in clinical management of cancer patients interact with individual patients to mitigate disease or treatment related adverse events (AEs), empower the patient and caregiver for health self-management and improve quality of life.

The MDS Foundation (MDSF) is a global non-profit advocacy organization that for over 25 years has supported patients and their families as well as healthcare providers in the fields of MDS and its related diseases (MDSF). Engagement of health care professionals, including APs, to understand myeloid diseases, the patient experience, and health care delivery dynamics globally, guides MDSF initiatives, including educating patients, their communities, and healthcare providers.

Intervention:
The Building Blocks of Hope® (BBoH®), is a global print and online resource providing a personalized educational program for patients and caregivers to prepare, participate, and LIVE with MDS, MPNs and AML. The BBoH® was created by an AP together with a multidisciplinary group of experts as advocacy volunteers to the MDSF. The BBoH® resources are continuously updated, allowing for rapid integration of changes in the therapeutic and diagnostic landscape for these diseases. Live links are embedded throughout the BBoH® to guide the patient and caregiver to vetted resources. The BBoH® provides the foundation for global patient forums moderated by APs, physicians, and nurses together with MDFS staff.

Findings:
The series is available in 10 languages and available for download, thumb drive, or in -print for free. Translations have been conducted with input from international professionals from MDSF centers of excellence to ensure that not only the language is translated, but the cultural interpretation is accurate and sensitive to each region and culture. More than 5,000 copies have been distributed across 54 countries since the original publication date of 2014. Roughly 2155 patients and caregivers have attended x patient forums, globally, including virtual forums deployed in 2020 at the height of COVID-19. Additionally, almost 2000 copies of the BBoH® have been distributed to health care professionals at international and national meetings, broadening the reach of the BBoH®. Patient and caregiver testimonials confirm the value the BBoH offers to their well-being, ability to understand and act on information, participate in shared decision making and self-advocate based on their individual values.

Implications:
APs in Hematology and Oncology can extend the impact of their expertise through collaborations with patient advocacy organizations beyond individual patients to local, regional, national, and international groups.