Palliative care in Africa — more and better through digital technology?
Most people who need palliative care in sub-Saharan Africa can’t access it. Digital technologies could extend reach and increase impact if interventions take into account the whole healthcare system, argues a study from the University of Leeds.
Around 80 per cent of cancer patients in sub-Saharan Africa do not receive a diagnosis until their disease is advanced and no longer curable. Earlier diagnosis is critical. But alongside this, there is a pressing need for palliative care and only around five per cent of those in need are able to access it.
Digital technologies offer a way to develop and extend the reach of palliative care services. But Dr Matthew Allsop, from the University of Leeds School of Medicine, explains the need for a thorough and holistic approach:
“Digital technologies offer important opportunities in healthcare across the world. But it’s important to ensure they are developed for the context in which they have to work, and in a considered way that takes account of all those potentially impacted — those who may and may not benefit.”
A whole-healthcare-system approach
This approach underpins a study led by Dr Allsop — the first to look at digital technology and palliative care service development and delivery in sub-Saharan Africa in the round. It takes into account the whole healthcare system, from patients through to policy.
Funded through the Global Challenges Research Fund (GCRF), researchers from Leeds joined forces with the African Palliative Care Association, Uganda Cancer Institute, and colleagues from the universities of Lagos, Zimbabwe and Makerere and Kings College London.
The team carried out in-depth interviews with four groups of people: patients with advanced cancer, caregivers, health professionals and policymakers. Interviewees were asked how they currently used digital technologies and about potential uses and barriers. There were 195 participants in Uganda, Nigeria and Zimbabwe.
All the groups were overwhelmingly positive, believing digital technologies could improve communication through both information provision and data gathering and analysis.
The research team identified 15 areas where digital technology could help improve palliative care services. These will be the team’s reference points in designing and then piloting new digital palliative care services. They range from enabling patients to have 24/7 access to palliative care professionals, to providing more granular data on cancer prevalence to inform healthcare policy.
Empowerment through data
Dr Bassey Ebenso, from the University of Leeds School of Medicine, says:
“The new services need to maximise the positive benefits of digital technologies while minimising any negative impacts. The amount of data and information that digital technologies make available can be overwhelming, so they need to be presented in formats that can be easily understood and used. Then they become very empowering.”
Dr Ebenso witnessed first-hand the power of digital technologies in a previous project in Nigeria, funded through GCRF via the UK Space Agency. Satellite technologies made possible video-based training for frontline healthcare workers. Digitised and accessible health data — previously available only to district-level decision-makers — were also enabled. This meant healthcare workers in the clinic could make their own decisions on where to target healthcare promotion activities, such as anti-malaria action.
Dr Ebenso hopes to see the development of palliative care interventions that will similarly empower cancer patients, their caregivers, healthcare staff and policymakers.
Easier patient access during COVID-19
The first such intervention is already in development. It addresses cancer patients’ added difficulties in accessing palliative care support in the COVID-19 pandemic.
Working with the African Palliative Care Association, Dr Allsop and his team are developing a digital health intervention to enable patients in Uganda to report symptoms remotely and get timely responses from palliative care teams. This would reduce the need for patient travel, with its inherent difficulties and costs. It would also enable health professionals to fully prepare for community visits.
Piloting a solution
A pilot of the new intervention is already underway in a hospice close to the South Sudan border, which caters for a large refugee population. By partnering with a social enterprise developing technology solutions for global health, the next stages will explore the potential for wider rollout across palliative care services in the sub-Saharan Africa region.
The results of the pilot will provide crucial preliminary findings, which will guide the expansion of the team’s digital health intervention work.
Dr Matthew Allsop is a University Academic Fellow in the School of Medicine, University of Leeds
Dr Bassey Ebenso is Lecturer in International Public Health in the School of Medicine, University of Leeds