Design and Implementation of the Retinoblastoma Collaborative Laboratory

Abstract

Purpose: The purpose of this work was to describe the design and implementation of a digital pathology laboratory, the Retinoblastoma Collaborative Laboratory (RbCoLab) in Kenya. Method: The RbCoLab is a central lab in Nairobi that receives retinoblastoma specimens from all over Kenya. Specimens were processed using evidence-based standard operating procedures. Images were produced by a digital scanner, and pathology reports were disseminated online. Results: The lab implemented standard operating procedures aimed at improving the accuracy, completeness, and timeliness of pathology reports, enhancing the care of Kenyan retinoblastoma patients. Integration of digital technology to support pathology services supported knowledge transfer and skills transfer. A bidirectional educational network of local pathologists and other clinicians in the circle of care of the patients emerged and served to emphasize the clinical importance of cancer pathology at multiple levels of care. A ‘Robin Hood' business model of health care service delivery was developed to support sustainability and scale-up of cancer pathology services. Discussion: The application of evidence-based protocols, comprehensive training, and collaboration were essential to bring improvements to the care of retinoblastoma patients in Kenya. When embraced as an integrated component of retinoblastoma care, digital pathology offers the opportunity for frequent connection and consultation for development of expertise over time.

Navigating familial retinoblastoma in Kenya: A mother's journey

“…2 Interventions included: consensus on and publication of Kenyan Ministry of Health -endorsed clinical guidelines for retinoblastoma care 3 ; public awareness and medical education campaigns 2 ; and capacity-building initiatives focused on histopathology, ophthalmic and oncological care, and cancer genetics. 2,[4][5][6][7][8] Since establishing the KNRbS, survival from retinoblastoma rose from 30% 9 to 70%. 10 Furthermore, age at diagnosis decreased from 24.4 to 16.8 months of age for bilateral patients, and 35.9 to 24 months of age for unilateral patients, 10 consistent with patients diagnosed in HICs.…”

“…The Kenya National Retinoblastoma Strategy Group (KNRbS) was established in 2008 to study and implement innovative approaches to improve retinoblastoma outcomes 2 . Interventions included: consensus on and publication of Kenyan Ministry of Health ‐endorsed clinical guidelines for retinoblastoma care 3 ; public awareness and medical education campaigns 2 ; and capacity‐building initiatives focused on histopathology, ophthalmic and oncological care, and cancer genetics 2,4–8 . Since establishing the KNRbS, survival from retinoblastoma rose from 30% 9 to 70% 10 .…”

Lessons for Patient Engagement in Research in Low- and Middle-Income Countries

“…Patients and their families were integral members of the strategy, which also included clinicians, community health workers, and policy makers [17]. By sharing their experiences and views through annual KNRbS meetings and working groups, patients contributed to the design and development of retinoblastoma awareness campaigns and healthcare delivery centered on retinoblastoma genetics [18,19] and histopathology services [20]. Since the initiation of KNRbS, the age at diagnosis for patients with bilateral retinoblastoma has decreased from 24.4 to 16.8 months of age, and for unilateral patients from 35.9 to 24 months of age, figures more comparable to those observed in HICs and linked to better survival [21].…”