InstaDoc
Rare diseases and the management pose numerous challenges to the patient and the health care system, particularly in a country like Nigeria.
InstaDoc identified one of these diseases (trichotillomania) recently and can therefore relate first-hand with the challenges faced in addressing rare diseases in a country like Nigeria.
Tichotillomania, according to the World health Organization, is a disorder characterised by recurrent pulling of one's hair leading to significant hair loss, which is accompanied by unsuccessful attempts to decrease or stop this behaviour. It occurs in 0.5-2% of the population globally. However, it is rarely encountered in Nigeria and many clinicians may not boast of their confidence in having managed numerous cases.
The diagnostic criteria for trichotillomania, according to the Diagnostic Statistical Manual 5 (DSM-5), are as follows:
1. The individual pulls his/her hair out on a recurrent basis, which results in hair loss.
2. Repeated attempts have been made to reduce or stop the hair pulling altogether.
3. The hair pulling causes significant distress or impairment in areas of occupational,
social or another regions of functioning
4. The hair pulling cannot be better attributed to another medical condition.
5. The hair pulling cannot be better explained as a symptom of another mental disorder.
The problems with rare diseases that InstaDoc provides a solution to include:
1. Stigma: Trichotillomania has been reported to affect more women. In Nigeria, there still remains the problem of gender inequality such that a woman would likely not report a rare disease because she could feel as though she alone was affected and likely to be stigmatized, or be ignorant of how to access care.
2. Access to specialists is poor because of various reasons including high attrition of health care workers and relative higher concentration of specialists in urban areas. This impacts negatively on timely diagnosis, appropriate treatment and disease management.
3. Diagnosis of rare diseases can be difficult due to the low prevalence of these diseases and health care workers may not have the necessary knowledge and resources to identify and treat these diseases.
4. Monitoring of rare diseases could be challenging because of travel time to health care facilities.
5. The cost of treatment is usually high for rare diseases.
References
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental
Disorders Fifth Edition (DSM-5). American Psychiatric Publishing; Arlington: May
2013.
2. O. A. Akanni. A case report of a virtual treatment of a Nigerian woman with a 15-year history of trichotillomania. Nigeria journal of psychiatry
During the COVID-19 pandemic, InstaDoc rose up to the challenge by creating a platform for remote access to management of rare diseases such as trichotillomania. This way, we have been able to do the following:
1. Solve the problem of Stigma: Through InstaDoc, a woman who had trichotillomania was able to scale the barrier of stigma and accessed care with ease from the comfort of her location. She had an effective management remotely which she has sustained for more than 1 year.
2. The barrier of access: The affected patient, who had been plagued with the symptoms for more that 15 years without knowledge of where to receive care, contacted InstaDoc and accessed care remotely. This eliminated the need for travel and reduced the barrier of distance.
3. Timely diagnosis: InstaDoc facilitates remote consultations and virtual diagnostic assessments on the mobile and web applications through which patients can share their symptoms, medical history and the specialists can provide an accurate diagnosis in a timely fashion. Thus, patients are able to receive adequate management of the medical condition.
4. Multidisciplinary care: Rare diseases, in many cases, usually require the collaborative management involving specialists from other fields. InstaDoc allows for this team-based approach for better patient outcome on the mobile and web applications.
5. Patient follow up: InstaDoc provides a unique system where there is a scheduled follow up on the patient by the health care provider using the in-app call and messaging functionalities of the mobile and web applications
5. Contribution to the body of knowledge: Through the successful management of a rare disease by InstaDoc team, we have been able to contribute to the body of knowledge to innovatively manage a rare disease through telemedicine. Data from these rare diseases are protected and can be used for informed decisions on management of rare diseases.
The target population that we seek to impact are people with rare diseases. These are typically women who are unable to maximize their ability to care for their families because they are plagued with chronic diseases and do not have access to care.
This we do by:
1. Engagement of patients and their caregivers: Through the web and mobile applications, we are able to obtain feedbacks and schedule focus discussion groups to capture the experiences of these patients. This helps us to cater to their specific needs.
2. Expert consultations By linking patients remotely with specialists, we enable interactions between patients and healthcare professionals to develop insights into their needs and tailor our services to them appropriately.
3. Human-centered design: InstaDoc continues to deploy the mobile and web applications to provide user-friendly and accessible services to meet the needs of patients with rare diseases. We also incorporate patient perspectives when updating the mobile and web applications.
4. Feedback and evaluation: We engage the users of our web and mobile applications to provide feedback through surveys, ratings and reviews. This enables InstaDoc to remain responsive to the evolving needs of individuals with rare diseases.
In Nigeria, with the attrition of health care workers including specialists, it has become increasingly challenging to have access to specialized care.InstaDoc provides an opportunity to harness the human resources of global experts in the management of rare diseases to bridge the gap of shortage of human resources for health (HRH).
At InstaDoc, we understand that it is important to engage all stakeholders in the development our solution to ensure it is tailored to the needs of those we serve and for the effectiveness and sustainability of our solution.
Here is how we do this:
1. Whenever we move into a new community, we identify the relevant stakeholders and engage them. This enables us to embed their perspectives into the process of caring for them.
2. For every client that we manage, we conduct a thorough needs assessment to help us better understand their unique challenges and available resources including but not limited to socioeconomic factors, cultural context and preferences.
3. We establish partnerships and collaborate with other organizations and hospitals working with patients with rare diseases so as to jointly develop and implement solutions that cater to the needs of these patients.
4. We have been adapting our mobile and web platforms to make them increasingly user-friendly, culturally acceptable and affordable.
5. We provide education and awareness within our served communities to foster their understanding of rare diseases and other diseases and the potential benefits of accessing care through InstaDoc. We also address stigma, and motivate more people to actively engage in their healthcare using social media to reach a broader audience.
6. InstaDoc consistently evaluates and adapts our solution by obtaining feedback from our patients and healthcare providers.We do this to identify areas for improvement and necessary adjustments. We ensure that our communication channels are kept open to address concerns to ensure sustainability.
- Improve the rare disease patient diagnostic journey – reducing the time, cost, resources, and duplicative travel and testing for patients and caregivers.
- Nigeria
- Growth: An organization with an established product, service, or business model that is rolled out in one or more communities
A significant barrier that InstaDoc faces in Nigeria is limited access to reliable internet connections and inadequate technological infrastructure. This connectivity barrier impacts negatively on the widespread adoption and implementation of our services to the people that genuinely need them. Due to unstable and poor quality internet connectivity, InstaDoc has faced difficulties in providing virtual consultations and transmitting medical data, both of which are necessary to improve the quality of life of people with rare diseases in Nigeria. In addition, although people admit that they need medical care, they do not have the required resources to access this care even though the services on InstaDoc are highly subsidized.
However, the Horizon Prize can address these challenges by making funds available to create more user friendly softwares tailored to the Nigerian context and by deployment of community-based Wi-Fi networks in specific places where people with rare diseases can access these services. These platforms will be designed to work with low-bandwidth, and compatible with mobile devices while prioritizing data privacy and security. In addition, the cost of care of these patients with rare diseases can be covered and they can better access health care.
With the Horizon Prize, we can engage the services of technical experts and software developers to customize our platforms at InstaDoc to better align with the unique needs of people with rare diseases in Nigeria.
Dr Funke Ogwa has practiced during her career as a clinician in the community, private, public and faith-based settings in Nigeria. As a Nigerian citizen who also trained as a medical practitioner and has spent most of her life in Nigeria, she has engaged actively with patients in these sectors, hence she has a grasp of the expectations of patients with rare diseases and the challenges they face.
Dr Ogwa has led InstaDoc to forge partnerships with community leaders, advocacy groups and Community-based Organizations to leverage their insights, expertise and networks to ensure that the InstaDoc solution aligns with the priorities of the people that we serve.
Furthermore, Dr Ogwa understands and respects the cultural nuances of many Nigerians. Thus, she has consistently led InstaDoc to establish good rapport with the patients and communities that we serve. This way, InstaDoc continues to integrate culturally appropriate approaches into our implementation framework such that the perspectives from our patients are usually sought and valued. InstaDoc maintains open channels of communication including dedicated helplines and we actively seek feedback from them.
Ultimately, Dr Funke Ogwa's connection to these patients and the health care providers at InstaDoc has continued to foster trust, and enhanced community engagement, thus increasing InstaDoc's chances of success at meeting the needs of people with rare diseases in a resource-constrained setting like Nigeria where more people daily lose their access to adequate health care due to socio-economic instability and volatility in the region.

Chief Executive Officer