Empowering cancer patients through health data access in Nigeria
Oncopadi is a digital health innovation empowering confident cancer care decisions made by patients, caregivers and clinicians.
You developed the Oncopadi digital platform for cancer patients in Nigeria. What was the need you were addressing with the platform?
Oncopadi is a digital health platform that empowers confident cancer care decisions made by the patient, caregivers and clinicians. We are solving the problem of limited access to cancer specialists and a lack of information and support. Through the patient portal, cancer patients and their loved ones can connect with cancer specialists for a consultation, join the survivors’ community which makes the journey less lonely, and learn about coping strategies through the patient education blog.
There are about 85 clinical oncologists in Nigeria. However, due to this shortage, many cancer clinics, especially in public hospitals, barely organize multidisciplinary tumour boards, which is the gold standard of care. A tumour board is a meeting where different cancer specialists meet to discuss the the best treatment plan and care of patients. It also serves as a peer to peer learning session and forges collaboration amongst specialists. The Oncopadi app provides these hospitals a virtual tumour board and a network of clinical oncologists participating in weekly tumour board meetings.
What kind of data can patients access through the Oncopadi platform?
Oncopadi app users can access their comprehensive health data in the form of their personal medical records, side effect profile, treatment history and survivorship care plan. This is important as patients visit multiple providers for care and now can share their health data with their caregivers and care team. Oncopadi is pushing for patient data ownership, and better patient engagement through digital-enabled patient data access. In keeping with ethics and the big data revolution, patients have the right to their data; beside this being the moral thing, there is established evidence that patient data ownership promotes better adherence and outcomes.
How does access to health data have a positive impact on cancer patients and their local communities, particularly in low-income communities?
It is not common practice for patients to have access to their data in low-income communities, and that's something we hope to change. From our experience with Oncopadi we observe that patients who have access or control of their health data have better communication with their cancer care team, a reduction in hospital and emergency visits, and improved treatment outcomes. Access to health data provides better disease and care insight and empowers patients to be the mediator of their cancer care coordination. For example, preliminary data from our patient reported outcome study reveal daily side effect data points, side effect profiles, comorbidities, and tracks what happens between clinic appointments.
Additionally, these data, when applied during clinic visits, improve care and treatment. When combined with routine care, this creates an innovative pathway for assessing the safety profile, quality of life and effectiveness of cancer treatment in a real world setting. Our goal is to enable more app users to use their health data to match to clinical trials, access programs etc. Oncopadi's vision is to connect cancer patients to personalised care. Through push notifications, email alerts and one-on-one interactions, Oncopadi offers its users a catalogue of cancer care resources and personalised support which they can select according to their needs and health data. Also, Oncopadi offers tailored programs such as the Oncopadi+ Program, which is a specialised cancer support program that increases access to holistic cancer care through digital health, patient engagement, behavioral science and health coaching. The program ensures patients stay well during and after cancer treatment. The Oncopadi+ Program optimizes care and educates and empowers patients and caregivers about cancer.
You also launched a digital health hub at the College of Medicine, University of Lagos in November 2021. Have you seen new partnerships develop there between researchers, investors and scientists?
Yes, we launched the RBRR Digital Health Hub. RBRR stands for the name of the Department of Radiation Biology, Radiotherapy and Radiodiagnosis. The Hub is a mobile health research development platform and tech learning centre that engages the potential of faculty members and students. As a network of healthcare innovators, Hub membership provides knowledge, process and resources to support the next generation of healthcare innovators in academia.
It's been an insightful experience co-creating with industry experts, scientists, researchers, and technologists united to conduct and fund mobile health (mHealth) research. The partnerships we have cut across global academic and health care innovation programs, and we have had a promising start. In a bid to launch sustainable health tech startups, the RBRR Hub works in partnership with the Universities Entrepreneurship Skills and Development Centre(ESDC), Bank of Industry Innovation Hub and Research, and the Intellectual Property Office and Innovation Centre.
The RBRR Hub offers the following for entrepreneurs:
- Enabling space
- In-house team are made up of the core Oncopadi team such as health care professionals, engineers, data analyst, product designers, project management, executive team, business development managers mHealth Research, Innovation and Entrepreneurship
- Network of experts and mentors
- Amenities: Internet, meeting room, alternative power etc.
Since its inception, the RBRR Hub and its members have attracted grants from the Lagos State Research and Innovation Council, Co-Creation Hub, and Conquer Cancer Research Foundation.
Can you provide some examples of new health tech startups and ideas that have been developed at the Hub? How do they use health data in innovative ways?
The RBRR Hub is an inspiring space that enables students and academics to conduct quality mHealth research, develop scalable health care innovations and launch health-tech startups. One such health innovation is the Patient Reported Outcome Side Effect (PROSE) Study app,which examines the influence of a mHealth patient-reported outcome measurement on cancer patients experiencing acute systemic side effects. We hypothesize that the PROSE app in addition to routine side effect management (usual care) will reduce the severity of treatment-related side effects and improve the quality of life of cancer patients. Our preliminary pilot study shows oncologists are more aware of patients’ side effects and intervene earlier. This reduces the escalation of side effect severity. As we conclude the study, we will publish our findings in peer review journals.