DEESC (Dosed Exercise Experience for Special Communities)

Sickle cell disease (SCD) is a group of inherited disorders where the shape of red blood cells change from round to sickle shape due to a genetic abnormality in the hemoglobin. This affects the oxygen-carrying capacity of the cells as well as their mobility within the blood vessels. Due to the reduced mobility, many of the cells stuck to the walls of the blood vessels which in turn leads to pain and pathologies such as infection, acute chest syndrome, and stroke. (Centers for Disease Control and Prevention, 2022)

There are different types of Sickle Cell Disease, depending on the type of gene coding the hemoglobin. These types also present with different clinical severities and forms of the disease. They include common ones like the HbSS, HbSC, and HbS beta-thalassemia. There are also uncommon ones like the HbSD, HbSE, and HbSO. (Centers for Disease Control and Prevention, 2022)

The disease is characterized by chronic hemolytic anemia, painful episodes of vaso-occlusion, progressive organ failure, and a reduced life expectancy. (Houwing et al., 2019) . Africa has the highest birth prevalence of persons with sickle cell disease with 1125.49 per 100000 compared with Europe with 43.12 per 100000. (Wastnedge et al., 2018, 4)

Vaso-occlusion is central to the pathology of SCD. It consists of blood vessel obstruction such that blood flow considerably slows or stops, particularly in the microvasculature. This results in the low oxygen concentration in the post-capillary region and, by extension, the characteristic pain crises (Conran & Embury, 2021, 1459).

The vaso-occlusive crises and other symptoms related to the disease have impacted negatively the daily lives of people living with SCD. This is affecting their participation in daily activities at home, and their relationships within their social circles, and also encroaching on their productivity and livelihood. The physiologic, physical, and emotional effects of vaso-occlusion, and the lack of proper support systems, have contributed to these. Hours of work are lost, hours of study/school time are lost, and the present effects, as well as the long-term socioeconomic implications, are daunting. (Osunkwo et al., 2021, 404)

We want to develop an exercise program that is physiologically tolerable, and experientially favorable, for people living with SCDs, SCTs, and associated conditions.

To achieve this, we want to:

• Conduct DEESC Study, a clinical and laboratory research in order to:

  • Define a spectrum for patients living with SCD and SCTs based on exercise-related physiology and anatomy parameters.

  • Identify the tolerability of common exercise by people living with SCD and SCTs through a mix 

• Develop and Test DEESC Algorithm:

  • Based on identified exercise tolerability patterns across the clinical and physiologic spectrums of the SCD and SCTs.

  • To test the algorithm on existing exercise digital fitness products and services with a population of people fitness enthusiasts, particularly those living with SCD and SCTs.

• Develop the Open DEESC Application:

  • To develop a digital platform that creates a community around dosed exercise experience

  • To use the platform as an exercise experience created as a channel for other safe and relevant direct-to-consumer medical and non-medical services for the target audience.

As mentioned earlier, Africa has the highest birth prevalence of persons with sickle cell disease with 1125.49 per 100000 compared with Europe with 43.12 per 100000. Worldwide there are about 300,000 babies born [with sickle cell disease] every year, and the majority in low-income countries will pass away before their fifth birthday. The disease is known to affect about 25-30 million people globally.

The disease is known to affect about  25-30 million people globally. Based on the effects of the vaso-occlusion crisis, and how the poor understanding and handling by those around the affected persons, including healthcare professionals, exclude themselves from communities. This social exclusion further creates social gaps and productivity challenges at home, in school, at work, and in communities.

In order to forge improved inclusion in the larger society, there will be benefits in co-engaging people living with SCD and SCTs in social activities of high impact. Physical activities have been identified as one such activity of social interaction impact, proving to help build trust and prosocial behaviors (Bartolomeo, 2019, 61).

People with SCD and SCTs are anxious about participating in physical activities. This is due to the potential effects of strenuous physical activities on VOC. However regular exercise can provide certain therapeutic effects (Phillippe et al., 2011) but the absence of well-dosed exercise makes it hard to prescribe, as the typical regimens sometimes become intolerable. 

This may imply that regular exercise may be able to remove the barrier to exercise participation for people living with SCD and SCT, which can mitigate the social and psychological effects of the disease while improving physical wellbeing and productivity.

Nigeria has the largest population of people living with Sickle Cell Disease and Traits in the world. As a team of scientists, design specialists, and technology experts, we all have personal life experiences of personal, relatives, friends, and neighbors that have encountered the problems we are trying to solve. 

One of us is a superspecialized hematologist based in Nigeria who sees patients and conducts clinical research with patients living with sickle cell disease and other hematological conditions that would benefit from properly dosed exercise. For decades, she has had to navigate carefully the lack of clarity in the space in order to protect her patients. This project is a path to helping her patients, and her colleagues who have to support families across the country and around the world.

We also have colleagues who work in North America as clinicians, researchers, and service designers who understand the challenge of equity. While there are pockets of teams who may have an interest in the same problem, our unique understanding of the population is guiding our choices. The sociodemographics, economic situation, healthcare system, and living conditions in the target area are informing our approach.

Finally, one of us is living with the condition and served as a primary source of feedback during the ideation phase. She was able to guide the team toward the true exercise experiences of an athletic person who has to grow up making choices around her body, her health, and the perception of the fitness community. In addition to her, we were able to bring in the insights of people living with sickle cell disease and traits within our network of friends and patients.

It is these relationships, motives, and network access that we hope to leverage in addition to our collective educational and professional experiences,

We are currently raising funds to execute this project. The type of resource we find will help us define the scope, scale, and quality of work to be done. 

We will also benefit from collaboration with fitness wearable devices, mobile applications, and large fitness club franchises at the later stage of the work.

Market Insight: We are applying an unconventional view to the problem itself. To improve the quality of life of people living with sickle cell disease, we applied an insight mapping approach that led us to a problem statement that is currently creating a lot of anticipation for the product itself, this market interest is important to the overall success of the solution.

The DEESC Study: The methodology and data collection tools to be applied for the study are important to understanding the spectrums of sickle cell disease as well as tracking exercise tolerability, particularly in African communities. These tools will be applicable in other geographies. These will also be relevant beyond SCD and SCT research, especially because disease conditions that need dosed exercise experiences, such as hemophilia, multiple sclerosis, etc, can benefit from these tools.

The DEESC Algorithm: The data science that will inform the algorithm based on learning from the study will create exponential value across the exercise technologies and services. We see this supporting existing gyms, patient groups, fitness mobile applications, as well wearable technologies. By extension allow us to achieve scale in market penetration as well as impact. We see this adding to the body of evidence in data science, exercise medicine as well as care for people living with sickle cell disease and other related diseases in the future.

The mobile application: The mobile application will be one of the first exercise applications designed for special physiology groups that require dosed experiences in Africa. The design will apply user insights that are peculiar to the audience. Our ultimate goal is to make this application open source in order for more fitness service providers, patient groups, clinics, etc to find it easy to adapt their existing and new technologies to the need of our target users.

Beyond Sickle Cell Disease: From inception, we have had an interest in solving this problem for people living with sickle cell disease and other related conditions. We believe this will go a long way in accelerating this mission for more people who ned exercise to improve their quality of life, alongside their health conditions. 

Next Year Goal: To complete the DEESC study

By extension:

1. This would have attracted the community of people living with sickle cell disease to the therapeutic importance of dosed exercise experience,
2. we would have trained clinicians, laboratory researchers, and the entire research team in a region with limited capacity in this niche area,
3. we would have finished data collection and begin to generate evidence to put confidence into this work area,
4. we would have generated media assets to be used in disseminating the findings from the research.

Next Five Years: To mainstream a physiologically inclusive exercise community in West Africa

By extension:

1. This will improve the physical activity/exercise lifestyle of people living with sickle cell disease,
2. this will improve the social interaction of people living with sickle cell disease,
3. this will increase the therapeutic effects of social interaction and exercise in people living with sickle cell disease,
4. there will be an opportunity to introduce other valuable products and services that can improve the health and quality of life of people living with sickle cell disease.

1. Number of people living with sickle cell disease interested in participating in dosed exercise

2. Number of people living with sickle cell disease participating in dosed exercise

3. The incidence of vaso-occlusion crisis recorded in persons participating in dosed exercise

4. The severity of vaso-occlusion crisis recorded in persons participating in dosed exercise

5. Proactive uptake of therapeutic medication for SCD care by persons participating in dosed exercise

6. Reduction in abuse of addictive analgesics persons participating in dosed exercise

The theory of change is described in the logical linkage diagram above. The evidence base for this has been detailed in some of the works highlighted above.

Internet of Things: To track the physiology of participants during the DEESC study, we will apply the sensors in wearable technologies. In addition, we will leverage these to continuously mine tolerability when the DEESC application is launched at scale.

Machine Learning: We will use machine learning to observe the pattern of tolerability indicators.

Mobile Application: We will develop a fitness mobile application that utilizes the DEESC algorithm and the exchange of data with wearable fitness devices to guide consumer experience as well as exercise performance.

We are made of three women scientists and two men at this phase, we have also incorporated persons living with sickle cell disease into the team; as well as advisors who are patients and industry experts. 

We are running this solution as a B2B2C. We are making the technology a freemium to the people living with sickle cell disease, while we earn commercial partnerships with service providers interested in reaching this niche population. 

At this inception phase, we have already attracted the interest of a big pharma willing to use this as a consumer engagement channel.

We hope to use this technology serves as an alternative fitness application, we will be upselling users, we will be collaborating for further research, and we also hope to license the technology to some of the existing fitness service providers.

1. We currently have an ongoing discussion with a potential big pharma partner.

2. We have a university willing to collaborate on this in Africa.