CPCN tech-enabled community based palliative care

Non-communicable diseases (NCDs) and other chronic life-limiting illnesses are medical conditions that last for an extended period, often leading to significant health problems, disabilities, and death. These illnesses include conditions such as AIDS, cancer, heart disease, diabetes, chronic respiratory disease, and mental health disorders.

Globally, NCDs kill about 41 million people each year, equivalent to 71% of all deaths. Low- and Middle-Income countries (LMICs) account for more than three quarters of global NCDs deaths (31.4 million). In Africa, the WHO projected a 403% increase in cancer mortalities; a 213% rise in kidney disease-related mortality; an increase in chronic obstructive pulmonary disease mortality by 255% and a 316% increase in cardiovascular disease-related deaths (including stroke) between 2016 and 2060[2]. In Nigeria, about 617,300  deaths of the two million deaths in people of all ages is caused by non-communicable diseases[3]. [4, 5]. 

Palliative care is an approach that focuses on improving the quality of life of patients with life-limiting illnesses by providing symptom relief and psychological, social, and spiritual support to both the patient and their family. The delivery of palliative care through digital solutions, such as telemedicine, has been shown in our pilot to be a feasible and acceptable alternative in Nigeria(6). It has the potential to improve access to palliative care services for those who are geographically or socially isolated, as well as reduce the burden on healthcare systems. 

Anonymized data gathered will help show disease trends and inform treatment plan efficiency in the African context.

In Nigeria, there is currently no organized program for palliative care that supports NCD patients and their families at the secondary care level. Due to a lack of coordination with the palliative care team, doctors are frequently forced to manage all symptoms while ignoring psychological, social, and spiritual suffering. 

Palliative treatment for patients with chronic conditions will be included in this solution through remote delivery (a telemedicine platform). The goal of the palliative care service, which will be organized by the palliative care team, is to foster stakeholder cooperation while providing comprehensive management for patients' physical, social, psychological, and spiritual needs as well as support for caregivers.

Our solution leverages the data gathered in our initial pilot in Oyo State. It takes a five-pronged approach: consultation, treatment, monitoring, training, and data analysis using technology.  The solution will seek to address the following specific objectives;

1. To better understand stakeholders' needs  and requirements to guide the integration of remote palliative care within the clinical management of patients with chronic life-limiting illnesses at the secondary healthcare level in Ibadan.

2. To train community based healthcare professionals on basic palliative care, identifying patients with palliative care needs, and referring patients for remote specialist palliative care consultation.

3. To conduct remote specialist palliative care consultation to meet the complex, multidimensional palliative care needs of patients with chronic life-limiting issues.

4. To determine the changes in patients’ quality of life, palliative care outcomes, and care experience after receiving the remotely-integrated palliative care intervention.

We intend to leverage our network of institutions, which we have helped set up, to roll out the project nationwide. This will be boosted with our partner's telemedicine service.

Communication with palliative care professionals will be through the use of our telemedicine platform, which has voice, video, and electronic medical records (EMR). With the telemedicine platform and partnerships with local pharmacies, consultations and delivery subsidised medication will be conducted

Due to the shortage of healthcare workers and poor knowledge of palliative care in the country, healthcare posts will be set up in communities that have been selected as project implementation sites. 

Training (virtually and onsite) would be conducted for healthcare providers that will be residents and work within the community. Training topics will be centered around, What is Palliative Care?" The concept of total pain and holistic care; Palliative care for non communicable diseases; Communication with patients and families; and Basic vital gathering. 

We intend to make use of the patient treatment data records (with consent), to better understand and analyze trends in patient morbidity outcomes based on treatment plans and access to palliative care using AI (artificial intelligence).

We believe our solution is positioned to help bridge the gap in healthcare service delivery with respect to quality, accessibility, and convenience. Our solution is borne out of our mission to provide easy access to quality, convenient, and compassionate palliative care and products aided by technology.

Nigeria is listed by the World Bank in the Fragile and Conflict-affected Situations (FCS) List 2023 (1) with most conflict situations seen in the Northern States of the country, which has led to the internal displacement of nearly 3 million people. (1) The average Nigerian is 5 kilometers away from the nearest PHC, and the country is now experiencing a drain of healthcare workers, with an average of 0.5 doctors per 10,000 patients. Patients living with chronic NCDs and their families usually present at an advanced stage of illness and report pain, suffering, poor quality of life, and physical, psychological, social, and spiritual needs that are amenable to palliative care, leading to poor quality of life and distressing symptoms that are amenable to palliative care. Unfortunately, only about 14% of people who need palliative care currently receive it, even globally.

Our target audience is primarily older adults and people who have a confirmed diagnosis of the following conditions: Cardiovascular diseases (heart diseases, heart failure, cardiac conduction disorders, cardiomyopathy, and other circulatory diseases), cancers, stroke, liver cirrhosis, sickle cell anemia, AIDS Alzheimer’s disease, diabetes mellitus, chronic obstructive pulmonary disease (COPD), and chronic kidney disease

CPCN, a non-governmental organization, formally introduced palliative care to policymakers and the general public in Nigeria. Since its inception, CPCN has been involved with the Federal Ministry of Health and other international organizations on various aspects of cancer care, including awareness, early detection, advocacy, and ongoing training of multidisciplinary health professionals in pain and palliative care. Members of the organization have been at the forefront of advocacy for the availability of oral morphine for effective and affordable cancer pain management in Nigeria. In collaboration with the University College Hospital, Ibadan, in 2007, CPCN facilitated the establishment of the first hospice and palliative care department within a tertiary health facility in Nigeria. The service offers holistic palliative care for adults and children in hospital, clinic, and home settings. The Center’s collaborative activities were also instrumental in the inclusion of the pain and palliative care module into the revised undergraduate medical students’ curriculum at the University of Ibadan and other institutions. CPCN has been engaged in the training of over 600 health professionals in palliative care across the states of Nigeria and ‘start-up’ palliative care service development in hospitals including the National Hospital, Abuja, University of Nigeria Teaching Hospital Enugu, University of Ilorin Teaching Hospital, Ilorin, Ladoke Akintola University Teaching Hospital, Oshogbo, the University of Port Harcourt Teaching Hospital, and the Olabisi Onabanjo University Teaching Hospital, Sagamu. The organization coordinates clinical placement and research programs on palliative care for health professionals from Nigeria and other countries. Thus, CPCN has a record of accomplishment in training in palliative care for health professionals (including postgraduate students) and individuals and volunteers. In addition, our training has been designed to build and strengthen the skills of trainees and then help them develop competencies in culturally appropriate palliative care services. The organization is also a foundation member of the Hospice and Palliative Care Association of Nigeria (HPCAN). It is a partner with the International Association of Hospice and Palliative Care, Global Partners in Care, and Uganda xxx The CPCN members include multidisciplinary health professionals and other volunteers.

CPCN is currently running a pilot of the above solution in Oyo State, in which over 100 patients have been enrolled from 3 state hospitals (State Hospital Ring Road, Jericho Nursing Home/ Hospital and Our Lady of Apostle Catholic Hospital, Oluyoro Ibadan) and trained 30 healthcare workers have been trained in the area of palliative care. The hospital partners have also been sensitized on palliative care. Oyo State is in the southwest geopolitical zone of Nigeria. Out of the 36 states in Nigeria, Oyo is the fourth largest state by population size, with a 2016-estimated population of 7,840,864. 

Our telemedicine partner, Healthboxes Ltd., is a comprehensive tech-health support service with a vision to help improve public access to quality, affordable healthcare solutions in Nigeria. The platform is written on open-source frameworks developed by Facebook, Google, and other industry leaders. These frameworks have long- term planned support and are widely used all over the globe to create innovative solutions. Since inception they have provided access to telemedicine support to over 1600 patients.

Since its inception, CPCN has treated over 100 patients with chronic illnesses and life-limiting diseases and trained 1200 health workers all over the country.

In our Oyo State pilot, we have trained over 40 health workers who had little or no knowledge about palliative care, and we have also reached out to over 100 patients to meet their complex multi-dimensional palliative care needs (physical, psychological, social, and spiritual).

We are applying to Solve for financial and technical support in scaling up our pilot. Currently, the telemedicine support has been provided by direct phone calls to the patient. Monitoring and record-keeping have also been done manually. With the funds that can be provided, we can properly integrate the telemedicine platform, roll it out into other communities, and gather more data for analysis. 

Training is being done physically, which limits the number of healthcare workers that can be trained in a cost-effective manner. Recording the course in the three major languages of Nigeria will be an added advantage.

We also need technical support in building the artificial and machine learning platforms for the data analysis.

According to a WHO survey relating to non-communicable diseases conducted among 194 Member States in 2019, funding for palliative care was available in 68% of countries, and only 40% of countries reported that the services reached at least half of patients in need. This lack of equitable access to palliative care for people living with NCDs threatens progress towards the 2030 Agenda for Sustainable Development, which includes a target of ensuring universal health coverage, including palliative care as an essential health service. 

Nigeria is ranked in Category 3a (only isolated palliative care provision) of the global palliative care atlas. Nigeria has only 0.09 palliative care services per million people. Palliative care remains largely inaccessible to the majority of patients facing severe illnesses.   

There is also a general lack of training in palliative care within the education curriculum for healthcare providers in Nigeria. Training health care workers at the secondary level of care will go a long way toward improving palliative care delivery in Oyo State.

Delivery of palliative care remotely using digital solutions has been shown to be feasible and acceptable in Africa. Therefore, such a service holds the key to expanding access for patients with chronic life-limiting illnesses. To ensure these patients have access to comprehensive support and care for their palliative care needs, there is a need to integrate palliative care within the clinical management and care at the secondary health centers in Nigeria.

There is currently no systematic palliative care program available to support NCD patients and their families at the secondary care level in Nigeria. Currently, physicians are often saddled with the responsibility of managing all symptoms, neglecting psychological, social, and spiritual pain because of a lack of collaboration with the palliative care team. We aim to provide a palliative care service that is desired to promote collaboration between stakeholders, provide comprehensive management for patients’ physical, social, psychological, and spiritual needs, and provide support for family members.

Our data gathering and analysed which will cover major ethnic groups in the country will give clearer evidence towards the efficacy of treatment of chronic illnesses in Nigeria, impact of monitoring on morbidity rates and trends that should be considered in improving treatment plans.

Using the Oyo State pilot project, we assumed a confidence level of 95% and a margin of error of 5%, formal sample size of 317 was obtained. Accounting for the reported attrition rate of 29% in palliative care trials, the proposed sample size was calculated as 474 equivalent to 210 participants per facility in a year.  The number of state hospital the pilot is being conducted with is 4. The target number of healthcare workers to be trained on palliative care during this pilot which also included doctors, nurses is 20 and number of people sensitised on palliative care is 20. 

Setting up the project offices, training healthcare workers and onboard patients will occur in the first 9 months.

Expanding this pilot to Enugu, Abuja and Kwara states alongside the units we helped set up, we are targeting to impact 5,500 patients and their families through community home based care over the next 2 years. We are targeting to train 400 local personnel in palliative care which will empower them and reduce the unemployment burden of the community. 

With advocacy and awareness through walks and community radio education shows(in native language), we will impact general public within the 4 states in preventative healthcare and this will lead to early detection and reduction in detoriation of health which occurs with chronic illnesses over the next 5 years. We aim to raise awareness of Palliative care to 15% of the public in these states

Through the telemedicine platform, we will be able to impact other Nigerians not located within the identified states who have access to technology. The target number of patients to be supported virtually is 6,000 over the next 3 years.

Over the next 5 years, it is estimated that will be a 25% increase in the above figures of impact.

Identified patients with chronic illness visiting the hospitals, requiring palliative care, aged 18 and above, who have a confirmed diagnosis of the following conditions: cardiovascular diseases, cancers, stroke, liver cirrhosis, sickle cell anemia, Alzheimer’s disease, diabetes mellitus, chronic obstructive pulmonary disease (COPD), and chronic kidney disease. These were selected as the top categories of non-communicable diseases that are life-threatening and life-limiting in nature, characterized by poor prognosis and progressively declining health status, and contribute to the highest number of mortalities in Nigeria based on the WHO global mortality estimates.

The solution will adopt a sequential mixed-methods design in two stages. First, a single-arm, non-controlled, non-randomized pre-test-post-test study will be conducted to determine the effect of the training on the knowledge, attitude, confidence, and competence of the trained healthcare providers. This will then be followed by a cohort study with a nested descriptive qualitative study for process evaluation. 

An interviewer-administered questionnaire will be utilized. This questionnaire has four sections: the socio-demographic section, physical symptoms, and psychological and spiritual components of palliative care. This questionnaire was collated from valid and published data collection tools identified, such as the IPOS (International Palliative Outcome Scale)—the Renal Patient Version (www.pos-pal.org) and the HOPE approach to spiritual assessment tool (www.aafp.org). The Likert scale was adapted to suit the Nigerian population. The tools will be translated to the native languages (Yoruba, Hausa, and Igbo) and back-translated to English to ensure retention of their original meaning.

All assessments at baseline, T0, T1 and T2 will include all measures and demographics. The most likely primary outcome for a definitive trial will be the African Palliative Care Association Palliative Care Outcome Scale (APOS). This is validated and widely used among the African population. For patients, an adapted Holistic Needs Assessment Questionnaire will be developed and used to assess the palliative care needs in order to develop the care plan. APOS will be used to measure Palliative care-related outcomes. While we acknowledge the heterogeneity that the population presents, we will employ the SF-8 Health-related Quality of Life Questionnaire to measure quality of life in patients. Consultation and relational empathy (CARE measure) will measure the patients’ and family caregivers’ perception of empathy displayed by the healthcare professionals within the consultations. Information on emergency attendance, hospital visits that are not on appointment, and hospital admissions will also be collected.  For decedent patient participants during the study, we will administer the revised quality of death and dying questionnaire and the modified caregiver voices survey through mortality follow up with the family caregivers.

For families, palliative care outcome will be measured using the African Palliative Care Outcome Scale (APCA POS), Family caregiver quality of life scale (FAMQOL) will be used to assess the quality of life of family caregivers and the Consultation and relational empathy (CARE measure) will also be administered to family caregivers.

For Healthcare professionals, acceptability, appropriateness, and feasibility will be measured using the Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure (FIM).

Our solution would be implemented at two levels – health care provision and patient care. The health care workers in Nigeria are new to palliative care (PC), and the health care system has not emphasized this either. Hence, collective behavior change is necessary in order to effectively implement the change and, in some instances, for the change to produce the anticipated benefits of our proposed solution. The logical framework for this proposed solution is based on the theory of organizational readiness to change. Organizational readiness for change is a multi-level, multi-faceted construct. 

As an organization-level construct, readiness for change refers to organizational members' shared resolve to implement a change (change commitment) and shared belief in their collective capability to do so (change efficacy). To provide efficient palliative care, health care workers (HCW) need to be knowledgeable and have appropriate skills, and this program shall provide training and hands-on-skill as well as on-the-job training to community-based HCW, state and national levels of care. A needs assessment will be conducted to guide the empowerment training.  The health workers will in turn provide awareness in the community and empower the patients and families for shared-decision making and utilization of PC services. When organizational readiness for change is high, organizational members are more likely to initiate change, exert greater effort, exhibit greater persistence, and display more cooperative behavior.

At the heart of the solution is a secure telemedicine platform that enables patients to connect with healthcare professionals remotely.  The platform has been developed to adhere to industry standards for data privacy and security. Each community healthcare worker will be provided with an internet enabled tablet, laptop, or phone to use at the patient's home during visits. Those patients who can afford their own internet enable devices will be have their monitoring and consultations done virtually.

The use of an EMR system can help streamline patient management and record-keeping, enabling healthcare professionals to access patient information remotely and track progress over time. It will also help facilitate communication between healthcare providers, patients, and families.

Data collected on patient outcomes, service utilisation and other key metrics will be analyzed through the use of data analytics tools and dashboards that provide real-time insights and reporting. Artificial Intelligence and Machine Learning can be used to analyze patient data and identify patterns or trends that can inform treatment plans and improve outcomes.

The training content will be recorded and developed into E-learning modules giving the healthcare workers access to training materials and resources online. This can include video tutorials, interactive quizzes, and other multimedia content that can be accessed remotely and at the healthcare worker's own pace. To ensure scalability and flexibility of the business model, the telemedicine and training platforms are cloud-based infrastructure that can handle increasing demand and support remote access for healthcare professionals and patients. This can also help reduce infrastructure costs and enable faster deployment of new features and services.

The CPCN recognizes diversity as a crucial value that promotes inclusivity, respect, and varied perspectives, and drives progress towards achieving health equity. We acknowledge all types of human differences, including those at the individual level, such as life experiences, learning and working styles, and personality types, as well as those at the group level, such as socioeconomic status, race, ethnicity, language, nationality, gender identity, sexual orientation, religion, geography, disability, age, and more.

Our diversity policy aligns with the medical profession's obligation to meet the health needs of all populations in an increasingly diverse society. The medical community's diversity enhances the quality of education for all learners, and exposure to diverse perspectives can improve complex thinking skills. This results in more effective and culturally competent physicians and patients who understand the link between sociocultural factors and health beliefs and behaviors, making them better equipped to serve a culturally and linguistically diverse patient population.

At the CPCN, we concentrate on the types of diversity that we believe add significant value to our community and have the potential to address health disparities. Health disparities, which stem from differences in geographic location, socioeconomic status, race, ethnicity, and education, remain pervasive, and we are committed to mitigating these disparities.

Our business model takes an integrated approach with a combination of subsidized fees and fees from training, donations, and grants. Our service offering includes the provision of home based palliative care to patients with chronic illnesses, physically and/or virtually. This will reduce wait times for access to medical consultations and drugs and improve psychosocial aspects of life. Patients will have convenient access to healthcare professionals through the telemedicine platform. This will impact their family positively by reducing their time away from work to care for their loved ones.Patients are introduced by the secondary healthcare institutions and on-boarded based on our criteria onto the platform by trained community healthcare works. The patient have an initial consultation with the medical doctor and treatment plan recorded on the patient’s EMR. Community healthcare workers will visit the patient weekly to ensure treatment plan which includes lifestyle changes are adhered to.  Quarterly sensitisation exercises on the importance of preventative medicine and how to live with their chronic illnesses will be carried out. The monitoring results are recorded in the EMR and if a consultation is required,an appointment is set up with the doctor via the telemedicine platform. Anonymized data is assessed to show impact.

We provide paid-for community training to individuals as caregivers, both virtually and onsite, on palliative care. This provides further impact within the community, as trainees can use this as a source of income. We will earn revenue by placing the trained caregivers with families who would like continuous care provision. Lastly, we provide consulting support and training to healthcare organizations looking to establish training facilities in other states.

With the inclusion of the telemedicine platform, we will also have access to commissions earned from prescriptions delivered to patients. 

Our other partners include local and state governments, secondary healthcare institutions, insurance companies, and donor agencies.

A lean approach is taken to staffing, using members who are paid according to time spent on the project and volunteers. 

Our marketing strategy will leverage a mix of channels, including social media, online advertising, and community outreach. The aim is to attract trainees, patients and increase brand awareness to help build partnerships and collaborations with local and state governments, secondary healthcare institutions, and donor agencies.

Through our existing board, made up of medical and non-medical persons, as the organization grows and expands, it's important to strengthen governance and oversight in place to ensure that resources are being used effectively and efficiently, and that the mission and values of the organization are being upheld. Ethical approval for the study will be obtained from Hospital Ethics Committee before commencement.

While the business model includes a combination of subsidized fees, fees from training and consultations, donations, and grants, CPCN intends to develop a long-term strategy for revenue generation and sustainability. This could involve exploring additional revenue streams, such as partnerships with insurance providers or pharmaceutical companies, or developing a subscription-based model for patients and their families.

We have been getting funds from the following;

1. Regular grants from our partners, especially the College of Medicine alumni class and Global Partners in Care.

2. Proceeds from workshops and training conducted for health professionals and volunteers 

3. Consulting and setting up palliative care practices for some teaching hospitals and local governments 

4. Proceeds from clinical services rendered on home visits 

5. Investment of some of our funds in money markets to obtain returns