Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa.

This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

Implementing Smartphone-Based Telemedicine for Cervical Cancer Screening in Uganda: Qualitative Study of Stakeholders' Perceptions.

BACKGROUND: In Uganda, cervical cancer (CaCx) is the commonest cancer, accounting for 35.7% of all cancer cases in women. The rates of human papillomavirus vaccination and CaCx screening remain low. Digital health tools and interventions have the potential to improve different aspects of CaCx screening and control in Uganda. OBJECTIVE: This study aimed to describe stakeholders' perceptions of the telemedicine system we developed to improve CaCx screening in Uganda. METHODS: We developed and implemented a smartphone-based telemedicine system for capturing and sharing cervical images and other clinical data, as well as an artificial intelligence model for automatic analysis of images. We conducted focus group discussions with health workers at the screening clinics (n=27) and women undergoing screening (n=15) to explore their perceptions of the system. The focus group discussions were supplemented with field observations and an evaluation survey of the health workers on system usability and the overall project. RESULTS: In general, both patients and health workers had positive opinions about the system. Highlighted benefits included better cervical visualization, the ability to obtain a second opinion, improved communication between nurses and patients (to explain screening findings), improved clinical data management, performance monitoring and feedback, and modernization of screening service. However, there were also some negative perceptions. For example, some health workers felt the system is time-consuming, especially when it had just been introduced, while some patients were apprehensive about cervical image capture and sharing. Finally, commonplace challenges in digital health (eg, lack of interoperability and problems with sustainability) and challenges in cancer screening in general (eg, arduous referrals, inadequate monitoring and quality control) also resurfaced. CONCLUSIONS: This study demonstrates the feasibility and value of digital health tools in CaCx screening in Uganda, particularly with regard to improving patient experience and the quality of screening services. It also provides examples of potential limitations that must be addressed for successful implementation.

Artificial intelligence and visual inspection in cervical cancer screening.

INTRODUCTION: Visual inspection with acetic acid is limited by subjectivity and a lack of skilled human resource. A decision support system based on artificial intelligence could address these limitations. We conducted a diagnostic study to assess the diagnostic performance using visual inspection with acetic acid under magnification of healthcare workers, experts, and an artificial intelligence algorithm. METHODS: A total of 22 healthcare workers, 9 gynecologists/experts in visual inspection with acetic acid, and the algorithm assessed a set of 83 images from existing datasets with expert consensus as the reference. Their diagnostic performance was determined by analyzing sensitivity, specificity, and area under the curve, and intra- and inter-observer agreement was measured using Fleiss kappa values. RESULTS: Sensitivity, specificity, and area under the curve were, respectively, 80.4%, 80.5%, and 0.80 (95% CI 0.70 to 0.90) for the healthcare workers, 81.6%, 93.5%, and 0.93 (95% CI 0.87 to 1.00) for the experts, and 80.0%, 83.3%, and 0.84 (95% CI 0.75 to 0.93) for the algorithm. Kappa values for the healthcare workers, experts, and algorithm were 0.45, 0.68, and 0.63, respectively. CONCLUSION: This study enabled simultaneous assessment and demonstrated that expert consensus can be an alternative to histopathology to establish a reference standard for further training of healthcare workers and the artificial intelligence algorithm to improve diagnostic accuracy.

Cancer as a death sentence: developing an initial program theory for an IVR intervention.

To address current trends in poor health-seeking behaviour and late cancer diagnosis in many low- and middle-income countries, like Uganda, it is important to explore innovative awareness building interventions. One possible intervention is a common digital format, an interactive voice response (IVR) system, which is suitable for individuals with low technological and reading literacy. It is increasingly acknowledged that developing digital interventions requires co-creation with relevant stakeholders and explication of program developers' assumptions, to make them effective, sustainable, and scalable. To this end, we sought to develop an initial program theory for a co-created IVR system for cancer awareness in Uganda. Utilising principles of the realist approach, a qualitative exploratory study was conducted through seven focus group discussions (FGDs) with people living with cancer (PLWC), health workers, and policy makers. Thematic analysis of the transcripts resulted in the emergence of four major themes. Through all themes the most consistent finding was that myths, misconceptions, and misinformation about cancer were related to every aspect of the cancer journey and influenced the experiences and lives of PLWC and their caregivers. Participants were positive about the potential of an IVR system but also had reservations about the design and reach of the system. The resulting initial program theory proposes that a context-specific IVR system has the potential to improve awareness on cancer, provided attention is given to aspects such as language, message framing, and accuracy.

Digital health in oncology in Africa: A scoping review and cross-sectional survey.

BACKGROUND: Low- and middle-income countries, especially in Africa, face a growing cancer burden. Adoption of digital health solutions has the potential to improve cancer care delivery and research in these countries. However, the extent of implementation and the impact of digital health interventions across the cancer continuum in Africa have not been studied. AIMS: To describe the current landscape of digital health interventions in oncology in Africa. METHODS: We conducted a scoping literature review and supplemented this with a survey. Following the PRISMA for Scoping Reviews guidelines, we searched literature in PubMed and Embase for keywords and synonyms for cancer, digital health, and African countries, and abstracted data using a structured form. For the survey, participants were delegates of the 2019 conference of the African Organization for Research and Training in Cancer. RESULTS: The literature review identified 57 articles describing 40 digital health interventions or solutions from 17 African countries, while the survey included 111 respondents from 18 African countries, and these reported 25 different digital health systems. Six articles (10.5%) reported randomized controlled trials. The other 51 articles (89.5%) were descriptive or quasi-experimental studies. The interventions mostly targeted cancer prevention (28 articles, 49.1%) or diagnosis and treatment (23 articles, 40.4%). Four articles (7.0%) targeted survivorship and end of life, and the rest were cross-cutting. Cervical cancer was the most targeted cancer (25 articles, 43.9%). Regarding WHO classification of digital interventions, most were for providers (35 articles, 61.4%) or clients (13, 22.8%), while the others were for data services or cut across these categories. The interventions were mostly isolated pilots using basic technologies such as SMS and telephone calls for notifying patients of their appointments or results, or for cancer awareness; image capture apps for cervical cancer screening, and tele-conferencing for tele-pathology and mentorship. Generally positive results were reported, but evaluation focused on structure and process measures such as ease of use, infrastructure requirements, and acceptability of intervention; or general benefits e.g. supporting training and mentorship of providers, communication among providers and clients, and improving data collection and management. No studies evaluated individualized clinical outcomes, and there were no interventions in literature for health system managers although the systems identified in the survey had such functionality, e.g. inventory management. The survey also indicated that none of the digital health systems had all the functionalities for a comprehensive EHR, and major barriers for digital health were initial and ongoing costs, resistance from clinical staff, and lack of fit between the EHR and the clinical workflows. CONCLUSION: Digital health interventions in oncology in Africa are at early maturity stages but promising. Barriers such as funding, fit between digital health tools and clinical workflows, and inertia towards technology, shall need to be addressed to allow for advancement of digital health solutions to support all parts of the cancer continuum. Future research should investigate the impact of digital health solutions on long-term cancer outcomes such as cancer mortality, morbidity and quality of life.

Factors and Outcomes Related to the Use of Guideline-Recommended Antibiotics in Patients With Neutropenic Fever at the Uganda Cancer Institute.

BACKGROUND: Neutropenic fever (NF) is associated with significant morbidity and mortality for patients receiving cancer treatment in sub-Saharan Africa (sSA). However, the antibiotic management of NF in sub-Saharan Africa has not been well described. We evaluated the timing and selection of antibiotics for patients with NF at the Uganda Cancer Institute (UCI). METHODS: We conducted a retrospective chart review of adults with acute leukemia admitted to UCI from 1 January 2016 to 31 May 2017, who developed NF. For each NF event, we evaluated the association of clinical presentation and demographics with antibiotic selection as well as time to both initial and guideline-recommended antibiotics. We also evaluated the association between ordered antibiotics and the in-hospital case fatality ratio (CFR). RESULTS: Forty-nine NF events occurred among 39 patients. The time to initial antibiotic order was <1 day. Guideline-recommended antibiotics were ordered for 37 (75%) NF events. The median time to guideline-recommended antibiotics was 3 days. Fever at admission, a documented physical examination, and abdominal abnormalities were associated with a shorter time to initial and guideline-recommended antibiotics. The in-hospital CFR was 43%. There was no difference in in-hospital mortality when guideline-recommended antibiotics were ordered as compared to when non-guideline or no antibiotics were ordered (hazard ratio, 0.51 [95% confidence interval {CI}, .10-2.64] and 0.78 [95% CI, .20-2.96], respectively). CONCLUSIONS: Patients with acute leukemia and NF had delayed initiation of guideline-recommended antibiotics and a high CFR. Prospective studies are needed to determine optimal NF management in sub-Saharan Africa, including choice of antibiotics and timing of antibiotic initiation.

Implementation of an Interactive Voice Response System for Cancer Awareness in Uganda: Mixed Methods Study.

BACKGROUND: Cancer awareness is crucial for cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. OBJECTIVE: This study aims to (1) understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs, and challenges to accessing cancer information) and opinions about interactive voice response (IVR) systems; (2) develop cancer awareness messages and implement them in an IVR system; and (3) evaluate user acceptance and use of the IVR system. METHODS: A participatory design approach was adopted. To understand cancer awareness needs and challenges, 3 interviews and 7 focus group discussions (FGDs) were conducted with cancer health care providers, patients with cancer, caregivers and survivors, administrators, and lay citizens (n=73). On the basis of the resulting qualitative data, audio messages addressing cancer information needs were developed and implemented in an IVR system. The system and messages were tested with users (n=12) during 2 co-design workshops before final rollout. Finally, the system was evaluated over 6 months after going live, using call records and user feedback from telephone interviews with callers (n=40). RESULTS: The cancer information needs included general topics such as what cancer is, what causes it, cancer screening and diagnosis, cancer treatment, and practical information on what to expect during cancer care. There were also myths and misconceptions that need to be addressed, such as that cancer is due to witchcraft and has no treatment. Information on COVID-19 was also sought after following the outbreak. We developed 20 audio cancer messages (approximately 2 minutes each) in English and Luganda, along with 14 IVR navigation instructions. These were implemented in an IVR system with 24/7 availability from all over Uganda via a toll-free multi-channel telephone number. The total number of calls made to the IVR system 6 months after going live was 3820. Of these, 2437 (63.8%) lasted at least 30 seconds and were made from 1230 unique telephone numbers. There were 191 voice messages and 760 calls to live agents, most of which (681/951, 71.6%) were in Luganda. Call volumes peaked following advertisement of the system and lockdowns due to COVID-19. Participants were generally familiar with IVR technology, and caller feedback was largely positive. Cited benefits included convenience, toll-free access, and detailed information. Recommendations for improvement of the system included adding live agents and marketing of the system to target users. CONCLUSIONS: IVR technology provides an acceptable and accessible method for providing cancer information to patients and the general public in Uganda. However, a need remains for health system reforms to provide additional cancer information sources and improve cancer care services in general.

Assessment of organizational readiness to implement an electronic health record system in a low-resource settings cancer hospital: A cross-sectional survey.

BACKGROUND: Organizational readiness for change is a key factor in success or failure of electronic health record (EHR) system implementations. Readiness is a multifaceted and multilevel abstract construct encompassing individual and organizational aspects, which makes it difficult to assess. Available tools for assessing readiness need to be tested in different contexts. OBJECTIVE: To identify and assess relevant variables that determine readiness to implement an EHR in oncology in a low-and-middle income setting. METHODS: At the Uganda Cancer Institute (UCI), a 100-bed tertiary oncology center in Uganda,we conducted a cross-sectional survey using the Paré model. This model has 39 indicator variables (Likert-scale items) for measuring 9 latent variables that contribute to readiness. We analyzed data using partial least squares structural equation modeling (PLS-SEM). In addition, we collected comments that we analyzed by qualitative content analysis and sentiment analysis as a way of triangulating the Likert-scale survey responses. RESULTS: One hundred and forty-six clinical and non-clinical staff completed the survey, and 116 responses were included in the model. The measurement model showed good indicator reliability, discriminant validity, and internal consistency. Path coefficients for 6 of the 9 latent variables (i.e. vision clarity, change appropriateness, change efficacy, presence of an effective champion, organizational flexibility, and collective self-efficacy) were statistically significant at p < 0.05. The R2 for the outcome variable (organizational readiness) was 0.67. The sentiments were generally positive and correlated well with the survey scores (Pearson's r = 0.73). Perceived benefits of an EHR included improved quality, security and accessibility of clinical data, improved care coordination, reduction of errors, and time and cost saving. Recommended considerations for successful implementation include sensitization, training, resolution of organizational conflicts and computer infrastructure. CONCLUSION: Change management during EHR implementation in oncology in low- and middle- income setting should focus on attributes of the change and the change targets, including vision clarity, change appropriateness, change efficacy, presence of an effective champion, organizational flexibility, and collective self-efficacy. Particularly, issues of training, computer skills of staff, computer infrastructure, sensitization and strategic implementation need consideration.

Elicitation and prioritization of requirements for electronic health records for oncology in low resource settings: A concept mapping study.

BACKGROUND: Understanding functional and non-functional requirements is essential to successfully implement electronic medical record (EMR) systems. Actual requirements will be different for different contexts. OBJECTIVE: To elicit and prioritize requirements for implementing EMRs in oncology in low and middle income countries (LMICs), and to relate these to requirements from high-income countries. PARTICIPANTS AND SETTING: Cancer care stakeholders including oncologists, general doctors, nurses, biostatisticians, information technologists, from different LMICs, were involved. METHODS: Concept mapping was used. Statements of requirements were obtained during focus group discussions (FGDs) and interviews. Using surveys, the requirements were clustered and ranked on importance and feasibility. Data were analyzed in SPSS using agglomerative hierarchical clustering and multidimensional scaling, to create cluster maps and go-zone maps reflecting the relationships between the requirements and their prioritization. RESULTS: Four FGD sessions, with twenty participants, were conducted. In addition, six participants were interviewed. Twenty-two participants clustered the requirements and sixty-three participants ranked them on importance and feasibility. One hundred and sixty requirement statements were generated which were reduced to sixty-four after de-duplication and merging. Nine clusters were obtained encompassing the following domains, in order of importance: Security, Conducive organization, Management/Governance, General EMR functionalities, Computer infrastructure, Data management, Usability, Oncology decision support, and Ancillary requirements. On ranking, the requirements scored between 3.74 and 4.80 on importance, and between 3.55 and 4.46 on feasibility, on a 5-point Likert scale. We generated concept maps for use when communicating with stakeholders. CONCLUSION: For oncology EMRs in LMICs, requirements overlap those from high-income countries, but generic EMR functionalities, Infrastructural and organizational requirements are still considered priority in LMICs compared to oncology-specific requirements or advanced EMR features e.g. computerized decision support or interoperability. Concept mapping is a fast and cost-effective method for eliciting and prioritizing EMR requirements in a user-centered manner.

Towards an Open-Source Oncology Electronic Medical Records System for Low-Resource Settings: Development of Chemotherapy Management in OpenMRS.

Cancer is a major public health challenge in low and middle income countries (LMICs). In this paper, we describe work in progress to develop functionality within an open-source electronic medical records system to support safe and standardized cancer care in low-resource settings. We engaged cancer care providers from LMICs to elicit and prioritize requirement, and following a rapid application development approach we developed chemotherapy prescription and documentation functionality within OpenMRS.

User Requirements for an Electronic Medical Records System for Oncology in Developing Countries: A Case Study of Uganda.

Cancer is a major public health challenge in developing countries but the healthcare systems are not well prepared to deal with the epidemic. Health information technologies such as electronic medical records (EMRs) have the potential to improve cancer care yet their adoption remains low, in part due to EMR systems not meeting user requirements. This study aimed at analyzing the user requirements for an EMR for a cancer hospital in Uganda. A user-centered approach was taken, through focus group discussion and interviews with target end users to analyze workflow, challenges and wishes. Findings highlight the uniqueness of oncology in low-resource settings and the requirements including support for oncology-specific documentation, reuse of data for research and reporting, assistance with care coordination, computerized clinical decision support, and the need to meet the constraints in terms of technological infrastructure, stretched healthcare workforce and flexibility to allow variations and exceptions.