C4 - Team H was formed when eight people from various disciplines and backgrounds were brought together to work on a challenge question. Though our motivations for adopting this challenge question - How can we develop affordable dialysis machines that work with renewable power and water sources for developing regions? - they converged on the fact that we could make a difference by pooling our various knowledge and experiences on the topic. Early in the fall semester, as a team, we were able to engage in talks that allowed us to view and confront the project subject from various angles.
With the establishment of your project persona, the breadth and synthesis of our project question began to narrow. Our persona was named "John," and he lived with his modest family in a small village in Nigeria. He had end-stage CKD and was in severe need of dialysis to help his failing kidneys. John was unable to work and support his family as a result of his condition, which caused him personal and interpersonal problems. After being denied a kidney donation, John, a patient with chronic kidney disease in Nigeria, found it much more difficult to obtain dialysis therapy. In truth, John lacked the dependable resources he needed to educate himself and his family on the benefits of having access to the internet. This story gave us an insight into the life of a person dealing with such an issue and the barriers faced by them.
Understanding the Project Question
After careful analysis of our research question, we decided to focus on what region of the world to tackle. To do this, we split the different regions (Africa, Middle East, South America, South Asia) among the members of the group. We analyzed existing research about chronic kidney disease (CKD) in each region. Following this, we scheduled a meeting, and we discussed which regions require furth er investigation into CKD treatments. Based on our research, Western Africa had the highest CKD rates in the African continent, with the most significant amount of available data found to be from Nigeria; the main factor on why we decided to go with Nigeria.
After establishing our project persona, the breadth and synthesis of our project question began to narrow. Our persona was named "John," and he lived with his modest family in a small village in Nigeria. He had end-stage CKD and was in severe need of dialysis to help his failing kidneys. John was unable to work and support his family as a result of his condition, which caused him personal and interpersonal problems. After being denied a kidney donation, John, a patient with chronic kidney disease in Nigeria, found it much more difficult to obtain dialysis therapy. In truth, John lacked the dependable resources he needed to educate himself and his family on the benefits of having access to the internet. This story gave us an insight into the life of a person dealing with such an issue and the barriers faced by them.
Initial Idea & Challenges
At first the purpose of our C4 project was to uncover the socio-cultural, economical, and financial barriers that keep individuals diagnosed with chronic kidney disease from accessing affordable dialysis treatment in Nigeria. We believed Nigeria was an important country of focus because it had the highest cost for hemodialysis compared to other countries located within Africa and there was also greater access to CKD treatment in regions like the Middle East and Europe. Other areas such as South America also had inadequate data on the issue of CKD making it an unfavorable country to research. The decision was then to choose between India as a South Asian country or Nigeria, and after careful consideration of where our social connections lie, we concluded that Nigeria would be the best fit. This was due to the fact that two of our team members had already begun communication with two doctors in Nigeria who indicated their interest in our project.
Initially, we had planned to develop an informative research paper and a user-friendly website that would be accessible to the public. Through these mediums, patients, researchers, medical professionals, and the general public would be educated on the different variables impacting the affordability of dialysis treatment including regulations, cultural values, socioeconomic status, and more. To achieve such goals, a plan to complete all necessary academic research and analyses, data collection, and communication with healthcare professionals within the nephrology field was in progress. Throughout this time, the delegation of team tasks, communication with doctors, and an understanding of the ethical framework encompassing the project were in motion. By November the setbacks included delays in communication with our project partner, as well as difficulties in deciding on the direction of our proposed research question. At this point, we had submitted our mid-year project draft portfolio.
Initial Research Phase
We began reaching out to institutions and medical professionals in the nephrology department to discuss the best way to approach the root problem in Nigeria. In the advising session, the doctors suggested that designing a dialysis machine would not be the most effective solution because of the many limitations associated with it, such as regulatory factors, legal processes, FDA, and medical approvals which factor into the unaffordability of dialysis treatment. Furthermore, after speaking to our project partner Dr. Marina Freire-Gormaly, we were told that the previous year’s group focussed on the design aspect of the research question but had many weaknesses which prevented their deliverable from being accessible to the developing regions themselves. For these reasons, we initially decided to create a research paper that would include information regarding the affordability of dialysis treatments in Nigeria by assessing the various barriers (e.g. financial, cultural, socioeconomic, etc.) that prevent individuals with CKD from accessing dialysis treatment, rather than creating a physical machine. In addition, our plan was to create a website that would be a summary of our research findings and accessible to the general public on a global scale. Through these mediums, patients, researchers, medical professionals, and the general public could be educated on the different variables impacting the affordability of dialysis treatment.
What about Ethics?
With our original project plan and scope, we considered an ethics plan for the project. Much like investigative journalism, our original plan was to speak with individuals that were stakeholders in the treatment process. This included doctors, patients, and industry professionals. By doing so, we would learn about the personal, cultural, and financial barriers impacting the patients. And from the industry perspective, we hoped to gain more insight into the bureaucracy, regulations and logistics that prevent the reduction in price for dialysis treatment. Therefore in order to have these conversations, we needed to go through the ethics process.
Following the conversation with Joel, and a nephrologist we shifted our project scope and direction. This led us to another discussion about our ethics plan and its importance. We concluded that pursuing the ethics framework would no longer be necessary for this project for the direction we were now taking. Our project deliverable now consisted of a website, a webinar and a lifestyle program none of which had an academic research element to them. We would connect with professionals and curate data already present in the public domain for our deliverables.
As a team operating in Canada providing a service to another nation there were a number of factors we had to take into account to ensure our program and resources translated effectively to an external audience. For example when we were designing the meal plan, we took into account the produce available to that area and the financial burdens that the average citizen has to bear. In order to ensure that the designed meal plan was viable for the average citizen, we consulted doctors, dieticians from nigeria. This way we could ensure any underlying biases did not slip into our resources and our program that may hinder the effectiveness of our efforts. Similarly all of our other deliversable were reviewed and corrected with the help of our medical experts.
Redirecting The Project
However, after submitting the draft portfolio report we received feedback from the teaching team sometime in December. To have a better understanding of the feedback, we booked a meeting with Professor Joel Marcus. He was able to help us think from a different perspective that would eventually help change the direction of our project. Professor Marcus brought to light the aspects of our problem that we want to focus on and how we can tackle it. We discussed many problems that we wanted to tackle such as financial and logistical barriers present in Nigeria and how they can be shared through our project deliverables. We came to the conclusion that we should focus on one problem rather than look at all the various barriers. As such, we needed to consider how our project deliverable would emphasize the importance of chronic kidney disease, how to make the issue stand out in comparison to all other diseases around the world, and finally, how we can adjust people’s attention from their own problems during this global pandemic, to instead focus on solving the chronic kidney disease issue present in Nigeria. Our team had realized that the original project deliverables and the route would not cater to the community of Nigeria in the best way possible. For example, a research paper is only understood by individuals within the academic community; and thus does not directly contribute to the well-being of the Nigerian community.
Consequently, the focus was on what our team could do to change our course of action as our chosen deliverables would not be as impactful as we had hoped. This would involve careful analysis of the factors increasing the number of individuals diagnosed with CKD in Nigeria, taking into account the strong social purpose of our project, and creating an innovative method to tackle the issue of CKD in Nigeria by delivering our message there. We concluded that the focus should be on the people of Nigeria themselves, rather than on a global perspective since we are looking to solve the issue of high CKD rates specifically in Nigeria and narrowing down our focus. Based on these changes, we also concluded that following through with an ethics plan would be unnecessary since we would no longer be interviewing CKD patients and instead began brainstorming how to better the wellbeing of the Nigerian community through a different approach.
Reinforcing The Decision
The scope of our project changed for the better when our group had multiple discussions with nephrologists, specifically our conversation with Dr. Swapnil Hiremath; who is a Nephrologist at the Ottawa Hospital. Dr. Hiremath had informed us that the most cost-effective treatment for chronic kidney disease would be to prevent it before it occurs; highlighting the importance of preventative care. Therefore, we decided to shift our project direction onto preventative care and early detection measures for CKD as it provided the most valuable and affordable method for managing chronic kidney disease in Nigeria. In fact, Haemodialysis is expensive and it is disproportionately affordable to very few patients. A session of the procedure cost an average of $75-150. According to a study by Ajayi et al. 2016, the analysis of 956 patients who were dialyzed for 10 years it was shown that none of the patients were able to maintain 3 sessions per week for up to three months; therefore the therapy is usually discontinued prematurely. Inadequate dialysis and the long interval between dialysis increases morbidity and mortality risk and lowers the quality of life (Ajayi et al., 2016).
We concluded that the accessibility of dialysis treatments will always be costly due to their high demand and lack of supply. Therefore the most effective approach became producing a preventative measures program called the LifeStyle Program
Collaborations & External Support
In order for the people of Nigeria to access the developed program, our team will collaboratively work with the chosen organization(s) to decide on the most effective methods for distributing the Lifestyle Program. As such, these deliverables will educate Nigerian communities and other people in the world in understanding that chronic kidney disease is a global crisis which must be recognized and dealt with.
We sent out emails to different Nigerian associations and the original Dr. Hiremath was able to connect our team to a Professor, Dr. Ifeoma Ulasi. Dr. Ulasi is a key figure in international, African and Nigerian nephrology. She is also a Professor of Medicine/Consultant Physician and Nephrologist at the College of Medicine, University of Nigeria, Enugu. We spoke with her about a proposal to implement our LifeStyle program in local clinics and schools. We went over our research question, a small brief of our project story, and our plans for the program. She gave us insight into what is going on in Nigeria regarding CKD from a more individualized perspective. The Professor was able to outline any flaws in our program and any factors that we should add to our program that we may have originally missed. Dr. Ulasi also mentioned that she will be meeting with a nephrology association in Nigeria and she will propose our program to them.
Collaboration with Panelists
Following the correspondence with Prof. Ifeoma, she reached back to us and informed us that the Nigerian Association of Nephrologists (NAN) were very pleased with the proposal of our project and were willing to partner with us. Dr. Ifeoma then directed us to two nephrologists on the NAN executive board, Dr. Ogochukwu Alice Okoye who is also the founder and president of St. Linus Renal Care Initiative in Nigeria, as well as Dr. Julius Okoye. Doctors Ogochukwu and Julius were very open to joining our upcoming CKD webinar as panelists to share their first-hand knowledge and experiences with CKD patients in Nigeria, and elaborate on the importance of preventative measures and lifestyle changes. We were then in search of a third panelist to ensure the most effective webinar and fortunately found Dr. Martin Igbokwe via Instagram. Doctor Martin is a consultant urologist and kidney transplant surgeon who we thought would be the perfect speaker for elaborating on the diet and nutrition side of CKD prevention.
Each doctor also agreed to partake in the distribution of our LifeStyle Program to the Nigerian population via their own facilities, as well as schools, churches, and more.
Outcome of Deliverables: Webinar, Website, LifeStyle Program (& Meal Plan), Infographic
After many months of hard work, correspondence, and decision-making, our team was able to set a final date for the CKD Prevention Webinar, one of our primary deliverables. The webinar took place March 26th, 2022 at 7am EST/12pm WAT for a total of 2 hours. It consisted of four segments, a conversation with our first panelist Dr. Ogochukwu Okoye, our second panelist Dr. Julius Okoye, our third panelist Dr. Martin Igbokwe, and finally a Question & Answer session from the audience. Doctors Ogochukwu and Julius answered our team questions regarding methods for CKD prevention in Nigeria, specific misconceptions keeping individuals in Nigeria from accessing healthcare systems, and the specific barriers (e.g. finances, resources, etc.) keeping nephrologists from providing the necessary help to CKD patients. Moreover, Dr. Martin provided his insight on the discrepancies between prevention and treatment, important dietary regulations for CKD patients, and other causal factors in the areas of gender and urology. Next, a Q&A session took place where various members of the audience posed questions to our panelists regarding prevention, healthcare accessibility, nutrition, and more. Towards the end of the Q&A, Dr. Ifeoma also joined as a special guest who elaborated further on how the Nigerian government has played a large role in furthering the financial burden of healthcare accessibility. To conclude the webinar, our team shared a thank you statement and other educational resources regarding CKD prevention. We also directed the audience to our website: www.GoKidney.org, which includes a recording of the webinar, our developed LifeStyle Program (including a Meal Plan) and an Infographic (i.e. deliverables 3 and 4).
The LifeStyle Program will be delivered through our website via an online crash-course. The crash-course includes a developed Meal Plan as well as valuable information regarding lifestyle changes for CKD prevention. The Meal Plan has been developed in collaboration with Dr. Chika Ndiokwelu who is a dietitian in Nigeria and has been a Nutritional Consultant for WHO, UNICEF and the Federal Ministry of Health in Nigeria. The Meal Plan includes culture-specific foods at an affordable price, specifically tailored to the Nigerian population (As per Figure 2). Individuals who complete the LifeStyle Program will be awarded a certificate at the end with a feedback column accessible through the website to determine the educational efficacy of our initiative. As previously mentioned, a summary of the LifeStyle Program will also be available as an infographic (As per Figure 1) and a brochure (As per Figure 3) for distribution in Nigeria.
Our Products & Services
A tailored course for everything CKD and healthy living
2-hour webinar with kidney specialists and surgeons
A customized diet plan designed and reviewed by expert nutritionists
Infographics that have all vital information in one convenient place
People reached with our webinar and our online course
increase in awareness of the importance of regular checkups with a healthcare provider
4 of 5
4 out of 5 people stated that our program increased knowledge of Chronic Kidney Disease