Understanding data and information needs for palliative cancer care to target mobile phone-based intervention development in Uganda and Zimbabwe

Lead Research Organisation: University of Leeds
Department Name: School of Medicine

Abstract

Palliative care involves the prevention and relief of physical, emotional, social, and spiritual suffering associated with any chronic or life-threatening illness, beginning from the time of diagnosis. In sub-Saharan Africa, palliative care has historically focused on supporting patients with HIV/AIDS. However, increasing numbers of both cancer cases and cancer deaths mean that palliative care services urgently need to adapt to support affected patients and their caregivers. Around 80% of cancers are incurable at the time of detection and diagnosis. It is crucial to invest in and develop palliative cancer care to support the quality of life of patients in the later stages of their illness.

Palliative cancer care will remain an essential component of healthcare delivery in sub-Saharan Africa, independent of efforts to improve cancer prevention and treatments. Through research, our team have been developing approaches to gathering data that can help shape provision of palliative care for cancer patients and their caregivers. This has involved developing measures for accurately and systematically capturing information about a patient's needs for support and their outcomes following palliative care intervention (e.g. pain medication). In order to extend this work, we need to explore tools for easily and securely capturing and sharing this information to guide palliative care service development. Our team have identified widespread use of mobile phones by patients and health professionals across palliative care services in the region. This includes a World Health Organization (WHO) pilot project capturing information via mobile phones from caregivers of palliative care patients in Uganda, Zimbabwe and India (called 'mPalliative'). Our team are supporting delivery and evaluation of this project for the sub-Saharan Africa sites. Clear potential for using mobile phones for capturing information has been demonstrated. However, it is essential to now undertake research to understand the best ways to collect data using mobile phones to make sure it is relevant to needs of patients, caregivers, health professionals and policymakers; this work is not planned and has not been undertaken previously.

Pump-priming funding will enable the team to create a consortium that will work together to guide the development of mobile phone-based approaches in palliative cancer care in sub-Saharan Africa. The consortium will include researchers, policymakers, non-governmental organisations and leading technology partners. We will also undertake interviews to understand how mobile phone-based approaches can be used as part of service delivery to capture data that can directly inform development of palliative cancer care. We will gather patient and caregiver perspectives on how mobile phones can be used in an acceptable and sustainable way to support information collection and communication with health professionals. For health professionals, we will identify how patient-level data reflecting experience and outcomes (obtained using mobile phones) can directly influence their clinical practice and inform the development of current service provision. For policymakers, we will understand what data would be useful to gather (in what format and why), to inform decision making and commissioning around palliative cancer care. These perspectives, from across the health system, will provide strong foundations on which to pursue substantive funding to undertake the development and evaluation of mobile phone-based interventions to develop palliative cancer care in sub-Saharan Africa.

Research activities linked to this pump-priming award will occur in Uganda and Zimbabwe. Both countries currently lead efforts to develop palliative care services across sub-Saharan Africa and have demonstrated capacity to support research activities making them both ideal partner countries. There will be multiple opportunities for sharing our findings across other countries.

Technical Summary

The majority of cancer presentations in sub-Saharan Africa are advanced and incurable, with incidence of malignancies projected to increase significantly. With limited provision of palliative care (PC) in the region, it is essential to understand how existing services are supporting patients with advanced cancer through assessing their experiences and outcomes. This can be achieved through capture of patient-level data to ensure practice is evidence-based, can be replicated, and reflects the needs of the population served. Approaches to gathering these data are requisite to understanding current palliative cancer care provision and inform future development. With this pump-priming award, working in partnership with PC providers in Uganda and Zimbabwe, we will: i) instigate an active, interdisciplinary consortium focused on mHealth (the practice of medicine and public health supported by mobile devices) approaches to capturing patient-level data for palliative cancer care; ii) identify a list of factors to target through mHealth approaches with accompanying programme theory, iii) obtain essential preliminary data needed to inform more substantive funding applications; iv) initiate research capacity building on technology development in partner institutions and identify future capacity building needs; and v) develop a proposal outline to undertake piloting and evaluation of mHealth approaches across PC services initially in Uganda and Zimbabwe. This preliminary research will culminate in detailing mechanisms for optimal implementation of mHealth interventions to underpin mHealth piloting to support development of palliative cancer care in SSA. This project work is pivotal to ensure development of mHealth approaches that routinely collect and analyse data that produces information to directly inform patient care, service delivery and policymaker decision making. This will facilitate rapid development of the evidence base underpinning palliative cancer care.

Planned Impact

The programme is aimed to primarily benefit the health systems of two low-income countries - Uganda and Zimbabwe - with potential to extend to other low-resource settings through similarity in context and health issues. Cancer is significantly increasing in its impact on the health status and economic development of households and communities across sub-Saharan Africa (SSA), exacerbated by rising numbers of cases, limited access to treatments and diagnosis typically occurring at later stages of disease. This burden is increasingly felt by the poorest. Through pump-priming funding we will guide future technology-based approaches to generate crucial evidence for palliative cancer care in SSA. We will increase understanding of how emerging services are supporting different groups of patients with advanced cancer through assessing experiences and outcomes; this is a priority for ensuring sustainable palliative cancer care development in the region.

Clear and explicit causal pathways and programme theory to underpin future mHealth piloting in palliative cancer care will be generated for Uganda and Zimbabwe initially. There will be opportunity to explore relevance to SSA more widely during a session hosted by the research team at the International African Palliative Care Conference in September 2019. Co-investigators from the African Palliative Care Association have secured this session for the project. The session will be attended by palliative care providers and policymakers from countries across SSA. This will enable direct dissemination of prepared findings to a target audience and identify potential collaborators for extending mHealth research activity across the region. Causal pathways and programme theory will also benefit a range of academic and industry-based organisations seeking to develop technology-based approaches to support palliative cancer care delivery in the SSA region. Furthermore, through WHO collaborating centre activities at the University of Leeds and Kings College London and dialogue with WHO advisors, we know that findings will be relevant and support their efforts to develop palliative cancer care in SSA.

Through sharing their experiences and preferences, patients, caregivers, health professionals and policymakers will generate the requirements for structuring how technology-based approaches are explored in palliative cancer care services in Uganda and Zimbabwe. This initial user engagement will guide future technology-based approaches that are aligned with their preferences. As part of further substantive funding we will validate identified requirements for mHealth approaches across different countries in SSA. Through collaboration with the African Palliative Care Association, we hope see technology-based approaches feature as a facilitator to enabling access to palliative care for every person in SSA with any chronic or life-threatening illness which will substantially improve the quality of their lives, as evidenced in high-income countries.

By working closely with palliative care providers and policy partners, research outputs will be appropriate and timely. Involvement with policymakers at the start of the project will enable opportunities to explore preferred forms of dissemination of project findings which may include policy briefings and direct inputs into the programmes of the Ministry of Health. The evidence should therefore be of immediate relevance to beneficiaries and useful to both the countries in which the studies are carried out and more widely to other low-income countries with similar health system constraints and disease patterns. To ensure effective dissemination of new knowledge generated by this project, research articles will be submitted to generalist international peer-reviewed open access journals for health intervention researchers in high and low-income countries (e.g. Bulletin of the World Health Organisation) alongside presentations at international conferences.
 
Description The new findings generated by this research included that:

1) There are multiple unmet data and information needs across patients, caregivers, health professionals, and policymakers in Nigeria, Uganda, and Zimbabwe, with the role of digital technology viewed as an acceptable approach to enhancing the existing provision of palliative care

2) 15 key requirements of digital technologies were synthesised from across stakeholder groups that can be used to guide the future development and evaluation of digital technology approaches in palliative cancer care

The new findings suggest that:

1) User engagement across diverse stakeholder groups is feasible and provides novel insights to inform technology design for palliative cancer care in sub-Saharan Africa which should be continued throughout subsequent development and implementation of digital technology approaches

2) Working with donors and private industry, governments and policymakers in sub-Saharan Africa are best-placed to ensure resultant digital technologies for palliative cancer care are interoperable, maintain privacy and confidentiality of data, and adhere to emerging governance frameworks.
Exploitation Route Guiding digital health technology design, use, and evaluation for palliative cancer care in sub-Saharan Africa. This has relevance for digital technology developers, researchers, policymakers, and palliative care providers in sub-Saharan Africa.
Sectors Digital/Communication/Information Technologies (including Software),Healthcare

URL https://medium.com/university-of-leeds/palliative-care-in-africa-more-and-better-through-digital-technology-6a4b2cfb6dd5
 
Description Understanding the role of digital technologies to enhance palliative cancer care delivery in low- and middle-income settings (QR GCRF funding from the University of Leeds)
Amount £98,000 (GBP)
Organisation University of Leeds 
Sector Academic/University
Country United Kingdom
Start 01/2019 
End 07/2019
 
Title Transcripts from 195 patient, caregiver, health professional and policymaker interviews relating to digital health in palliative cancer care in sub-Saharan Africa 
Description As part of this project, we conducted interviews across several sites providing tertiary services for cancer patients in three countries in sub-Saharan Africa. These sites are both public facilities and non-profit non-governmental organisations. In Uganda, we collected data at four sites: Uganda Cancer Institute, Makerere Palliative Care Unit at Malago hospital, Kawempe Home Care and Hospice Africa Uganda. In Zimbabwe, we recruited at Chitungwiza Hospital, Parirenyatwa group of hospitals, and Island Hospice and Health Care. In Nigeria, we recruited at Lagos University Teaching Hospital and Sebeccly Cancer care and support center. Interviews were conducted with patients with advanced cancer, caregivers of patients with advanced cancer, health professionals delivering palliative cancer care and policymakers working in non-communicable diseases and digital health. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact Primary study analysis has enabled the generation of a framework to guide subsequent digital health development in three countries in sub-Saharan Africa. Six additional analyses are ongoing with researchers from the partner countries. 
 
Description Digital health workshop for palliative care professionals and researchers 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Organised and led a workshop for delegates at the 6th International African Palliative Care Conference to provide an overview of current trends in digital health development and the underpinning evidence base for digital technology in palliative care in sub-Saharan Africa. Examples of mobile phone-based interventions were be presented, alongside an example of video-based public engagement activities, panel discussion and open discussion with all delegates.
Year(s) Of Engagement Activity 2019