Ubu[mu]ntu Mhealth: Dignified End of Life Care

Today, cancer is a leading cause of death around the world. According to the World Health Organization, 18.1 million new cancer cases and 9.5 million cancer deaths were estimated worldwide, and this number increased from 14.1 million new cases and 8.2 million deaths in 2012. The international community does not offer needed care to the huge number of cancer patients who need access to palliative care and end-of-life care. The 2018 GLOBOCAN data reported that there was an estimated 10,704 new cases of cancer and 7,662 cancer-related deaths in Rwanda. The survival rate of patients diagnosed with cancers is appallingly low in the developing world, including Rwanda. Some of the causes of poor cancer control in Rwanda are the public perception of the disease and its prevention, lack of early detection, and inadequate diagnostic and treatment facilities. It is important to bring evidence-based palliative care and increased research capacities in low and middle income where the majority of the population suffers from physical pain and lack of appropriate end-of-life care services. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2012). According to the World Hospice and Palliative Care Alliance (WHPCA), 40 million people need palliative care every year and more than 20 million need this care at the end of life. Unfortunately, among those who need palliative care, 18 million of them will die with pain and distress. The disparity between the High-Income Countries and the Low- and Middle-Income Countries (LMICs) in accessibility and availability of morphine is an abyss. The developed countries are using more than 85% of morphine consumption worldwide for only 15% of the population compared with 15% for LMICs. Those in resource-poor settings suffer needlessly because they do not receive the pain medication they need. Most of the physicians from LMICs have shown that the opiophobia or fear of opioids is the main challenge keeping physicians from prescribing morphine

Ubu[mu]ntu Mhealth will help the population with advanced-stage cancer to stay connected with healthcare providers at the community level, own their information, and impact their daily care. We developed a smartphone-based application (app) to facilitate the management of palliative care needs of end-stage oncology patients during the global COVID-19 in Kigali, Rwanda. The smartphone application will track patients’ symptoms in real-time, which would enable the palliative care team to more efficiently triage and communicate with patients and improve patient outcomes (assessment and management of pain and other symptoms for advanced-stage cancer patients). 

Ubu[mu]ntu  Mhealth has two major components.
Phase 1: To pilot a Smart Phone-based symptom evaluation app with the use of qualitative interviews and focus groups with late-stage cancer patients and providers. An online registration system for palliative care patients at different levels of the healthcare system.
• A mobile application (Android and Ios) for the capture of palliative care patients' daily follow-up reports.
• An SMS/USSD/IVR-based system for the capture of palliative care patients' daily follow-up reports.
• A dashboard for palliative caregivers to follow up all registered patients (self-assessment)
• Intervention at the community level by nurses from health centers/or community health workers from villages.
Phase 2: To conduct a preliminary efficacy study of a Smart Phone-based symptom management app. This will be a small, randomized control trial looking at the mHealth platform vs standard of care for end-stage cancer patients with moderate to severe pain needs with pain control as the primary outcome and the expanded APCA POS scores as secondary outcomes.
Impact: A mHealth-based intervention has never been used to assess and manage pain and symptom needs among cancer patients in developing countries. If the proposed intervention is found to be successful, the Rwandan minister of health has already expressed interest in expanding the program via a large multi-site randomized-controlled trial with hopes of expanding it throughout Rwanda. 
Innovation: Cell phone use is widespread in Rwanda with up to 80% usage in Kigali as well as government-supported initiatives to improve access to smartphones including subsidies and support for smartphone-based transactions. The technology has been proven to be as effective as conventional strategies in managing congestive heart failure, cancer, anti-retroviral therapy, and oncology treatment adherence. A recent meta-analysis has shown that text messaging tailored to patient-specific needs improved anti-retroviral adherence in HIV/AIDS patients.

Ubu[mu]mu Mhealth is a solution for the population with advanced-stage cancer diagnosed in the hospitals and discharged to "die" at home without the appropriate care. Our solution is using a holistic approach (physical, psychological, social, and spiritual) where physicians, nurses, social workers, spiritual leaders, families, and community health workers will interact with the patient and vice versa. The Ubu[mu]ntu Mhealth will impact the lives of patients and their families by:

1) Bringing equality in data where patients were considered only as consumers but not partners. The information was shared between healthcare providers without including the patients and was sometimes not well reported by the community health workers. The application will give autonomy to decide, power to share, and ownership of data from patients vis-a-vis the treatment and the evolution of symptoms. 

2) Bringing equity to the availability and accessibility of treatment and care where healthcare providers didn't know exactly the needs of patients daily. The application will develop precision care and intervention to gain time and unique to every patient and their families. Sometimes, care and treatment are standardized in the name of equality but not equity because the diagnosis could be the same but the needs are different.

3) Bringing Ubuntu perspective where the application will be adapted to the local context where technology will not see as an external factor in the patient's life but as an important element that accommodates the Rwandan values. 

First of all, Ubu[mu]ntu Mhealth is a project from the African Center for Research on  End of Life Care, a non-profit organization to bring socio-cultural equality through “Ubuntu in End-of-life Care” in Africa. The team is multi-cultural, local, international, skilled, and experts in palliative and end-of-life care. The project was developed by Dr. Christian Ntizimira, Fulbright Alumni who graduated from Harvard Medical School. He pioneered the integration of palliative care and end-of-life care into health services rendered to Rwandan cancer patients and in the community settings.  

Secondly, the project came after different meetings with the patients and their families we are followed at home, not at the hospital. We capture their expectations, challenges, and frustrations and hope to receive care at home. The program to follow patients at home started in 2012 and we have been closed to the community to understand the real needs in terms of care.

Thirdly, we are working closely with the community health workers who are supporting patients and their families at home. They help us to understand from their perspectives, the need of patients and potential solutions to support them. From their experiences, we understood the community, do's and don'ts, and how to contextualize the application.

Finally, we set up a district palliative care committee (DPCC) where each representative from healthcare workers at the district hospital, nurses from health centers and health posts, a representative from the community health workers, a representative from patients or survivors, and family where we discussed openly the best way to use technology at the community. 

From multiple meetings with the DPCC, we were able to design an appropriate app guided by the community and we hope to pilot this unique project to improve the quality of care for patients and their families at home.

Today, people who suffer from life-limiting illnesses and serious health suffering are the subject of negligence, stigma, and dehumanization. We believe that the concept of palliative care will contribute to bringing back the sense of humanity those patients lost during the diagnosis from the perception of society. Palliative care is not about death but about life and the dying process is part of the living moment of the patient. 

The challenge will help to the major challenge we are facing is the financial constraint to develop the mobile application in the country. As we have already received support from the government (framework) and the large market of clients in the community, the Solve opportunity would contribute to changing the perspective by financing this unique project for palliative care patients who are considered the rubbish of the society. We hope also the technology platform with help to extend the community as part of"the solution" as a homegrown solution in Rwanda. We believe in the community as we believe in "Ubuntu" which means "people are people through other people" and that is the motivation to leverage potential solutions to left no one behind.

This solution will change completely the perspective of end-of-life in Rwanda and in Africa because using a cell phone is an opportunity for social justice. Cell phone use is widespread in Rwanda with up to 80% usage in Kigali as well as government-supported initiatives to improve access to smartphones including subsidies and support for smartphone-based transactions. Cell phone use has emerged as a useful tool to facilitate healthcare services in low and middle-income countries. 

There are many examples of mHealth implementation in low and middle-income countries, most common thus far include 1-way text message reminders and phone reminders for follow-up. The technology has been proven to be as effective as conventional strategies in managing congestive heart failure, cancer, anti-retroviral therapy, and oncology treatment adherence. 

A recent meta-analysis has shown that text messaging tailored to patient-specific needs improved anti-retroviral adherence in HIV/AIDS patients. No current form of phone-based technology has been used to provide palliative-care services although the technology is readily adaptable to this context. 

The COVID-19 situation has shown more than ever that there is a need for process digitization. People were isolated and they couldn't interact physically with healthcare providers and the impact of care was negative. But we hope the future involves decreasing as many possible physical interactions to prevent the spread of contagious diseases could also impact positively the quality of care by using mobile applications.

A mHealth-based intervention has never been used to assess and manage pain and symptom needs among cancer patients in developing countries. If the proposed intervention is found to be successful, the Rwandan minister of health has already expressed interest in expanding the program via a large multi-site randomized-controlled trial with hopes of expanding it throughout Rwanda. 

Given this level of support and based on the COVID-19 pandemic situation, the mHealth platform has the potential to impact not only patients that are currently in the Rwandan health system but could eventually provide a low-cost solution, culturally appropriate and sustainable intervention that could be scaled up to other low and middle-income settings around the world, where pain and symptom needs remain largely unmet. 

More specifically, this app could significantly enhance the community health worker (CHW) program as it could improve communication between CHWs and their patients, as well as provide a meaningful data collection tool.

To measure the effect of integrated palliative care on pain and overall quality of life, we will use the African Palliative Outcomes Scale (POS) to prospectively assess patients referred for palliative care at baseline and patients who already are receiving palliative care within the district networks. The POS has been validated in East Africa and is brief enough to be used with very ill patients. 

Both initial and follow-up assessments may be done either in the hospital or at home by a palliative care team doctor or nurse. We expect that patients already receiving palliative care will have better POS pain and/or quality of life scores by at least one point (on a scale of 0 – 5). 

We propose a two-phase, mixed qualitative and quantitative study to develop and test a smartphone mobile application that monitors the physical and psychosocial symptoms of patients with advanced cancer, and reports this data to their palliative care team via an online dashboard. The outlined processes of development in both Phase 1 and Phase 2 of the study are guided by the software development life-cycle method, which includes designing, developing evaluating, and testing an application.

The philosophy of ACREOL is "The way people die can reflect how the society lives". There is no change with evidence-based factors and the research part of the project will demonstrate the improvement of the quality of life of patients facing life-limiting illnesses and access to technology.

Step 1: Pilot Test the Smart Phone Technology: All participants will have access to standard care but in addition, participants in the pilot, will receive twice-weekly automated app messages with the African Palliative-Care Outcomes scale which will be sent to assess pain control as well as other symptoms for 1 month. The Palliative Care team will have a SmartPhone or tablet device with access to all of the enrolled patients, including a desktop-based dashboard where they will be able to track all enrolled patients and assist with the early identification of patients with worsening POS scores. Any score of 2 or higher will be flagged for attention. 

Step 2 - Focus Group Discussions:  The PC staff will identify potential patients to participate in the focus group discussions (FGDs) by referring any of their home care patients who have either moderate or severe pain. Patients will then be formally screened for eligibility by study staff and informed consent will be administered to those who volunteer. Eligible patients will be at least 18 years old, diagnosed with advanced cancers, and have moderate or severe pain, as defined by the use of World Health Organization (WHO), as requiring step 2 drugs (tramadol or codeine) or WHO step 3 drugs (narcotics other than codeine) to manage their pain.
Step 3 – Key Informant Interviews:  A trained study staff member will conduct individual interviews using a semi-structured interview guide designed by the study team with all members of the interdisciplinary team from ACREOL, the head of the cancer division for the Rwandan Ministry of Health, as well as providers from the nearby district hospital (Kibagabaga Hospital) and national referral hospital (University Central Hospital of Kigali) which are the two most common sites through which new referrals are made to ACREOL.

Step 4- Exit Interviews: After patients have completed the one-month of the pilot, we will conduct exit interviews using a semi-structured interview guide designed by the team in order to obtain feedback on the intervention including experience with the app, efficacy in addressing their needs, frequency of transmission of messages, problems in the receipt of message or challenges in responding to the app, reactions to provider responses.

It is a pilot Smart Phone-based symptom evaluation app used to support, to treat late-stage cancer patients. An online registration system for palliative care patients at different levels of the healthcare system using a mobile application (Android and Ios) for the capture of palliative care patients' daily follow-up reports. 

An SMS/USSD/IVR-based system for the capture of palliative care patients' daily follow-up reports. A dashboard for palliative caregivers to follow up with all registered patients (self-assessment) which will bring intervention at the community level by nurses from health centers/or community health workers from villages.

Ubu[mu]ntu project comes from the Ubuntu philosophy which means "people are people through other people" or "I am because you are". It represents humanness, a pervasive spirit of caring within the community in which the individuals in the community love one another. 

We believe in cultural diversity and we think that there is no such thing as a one-size-fits-all palliative care model. He hence works to advance a palliative care model adapted to patients’ socio-culture contexts. “The way a patient dies reveals the way society lives”, he narrates. He believes that palliative care should strictly be crafted in the uniqueness of society and its unique culture.

There is a strong need to revisit perspectives on End-of-Life care and develop workable solutions amidst cultural diversity, existing practices, and evidence in modern society. There is an urgent need to create an Ubuntu palliative care movement grounded in a framework of compassion and consideration for the social-cultural context of patients and their families.

As a people-centered philosophy, Ubuntu stipulates that a person’s worth depends on social, cultural, and spiritual criteria. It requires a life that depends on a normative engagement with the community, a substantive appreciation of the common good, and a constitutive engagement with one another in a rational and ethical community. 

Ubu[mu]ntu incorporates diversity, equity, and inclusivity into your work through that philosophy rooted in African culture.

The model business will be using the Ubuntu approach through the community health-based insurance for sustainability and equity. Mutual aid and community solidarity value systems have remained resilient traits of Rwanda's society, and continue to be translated into coping strategies in the health care area. 

CBHI schemes in Rwanda are health insurance organizations based on a partnership between the community and health care providers. As consensus built up on the benefits of the CBHI schemes, a multi-level leadership developed in the country to provide support to the adaptation, and extension of the schemes. Political leaders at the central level, starting from the Presidency, called for the mobilization of all actors to support the implementation of CBHI schemes throughout the country.

Through the Ministry of Health/Rwanda Biomedical Center (MoH/RBC), private sectors (Telecommunication companies: MTN, AIRTEL), and international partners by selling services or contracting government agencies to provide palliative care services at home. The CHBI will reimburse the services at home and that will help to sustain our services. 

From this project, further app development will be conducted through an iterative process, with the PC team providing software development expertise and the PC organization helping to adapt the platform to the context of Rwandan patients. In 2010, the Ministry issued a “National Palliative Care Policy,” a “Five-Year (2010 – 2014) Strategic Plan for Palliative Care for Incurable Diseases,” and “Standards & Guidelines for Provision of Palliative Care for Incurable Diseases.” 

In addition, the National HIV/AIDS Strategy includes palliative care, and a national cancer strategy that includes palliative care is under development. The importance to the Government of Rwanda of developing palliative care to improve the quality of life of Rwandese with serious chronic illnesses is made clear in the ”National Palliative Care Policy” and ”Strategic Plan”.

ACREOL was able to work with different international partners like PATH, CDC Foundation, Bristol-Myers Squibb, and ASCP (America Society in Clinical  Pathology in research, Data science, and implementation of model palliative care.