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.

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.

InstaDoc is innovative and could serve as a catalyst for broader positive impacts in the following ways:

1. InstaDoc, as a solution for rare diseases, requires a good technological infrastructure including good internet connectivity and secure data management systems. This infrastructure can be leveraged by other health care providers to expand their reach and effectiveness in delivering healthcare services to areas with poor access to health care.

2. InstaDoc, through its solution for rare diseases, continues to generate valuable knowledge and experiences that are shared with health care providers and other telemedicine providers. We have been able to identify lessons learned, best practices, and challenges encountered during our implementation. These can serve to facilitate the scaling of successful models in other health care  sectors and regions.

3. InstaDoc hopes to lead the development of comprehensive policy frameworks that facilitate the adoption and regulation of telemedicine across other medical specialties. This could serve as a benefit to other providers seeking to provide telemedicine services in other parts of the country, continent and globally.

4. InstaDoc has fostered collaboration among healthcare providers both locally and internationally. As providers gain experience and confidence in making use of telemedicine platforms to manage rare diseases, they can utilise the resources and expertise to improve healthcare outcomes across other medical conditions.

5. As the awareness of the availability of InstaDoc for management of rare diseases and the positive outcomes grows, it will pave the way for increased access to health care by broadening the acceptance and adoption of telemedicine solutions across many other specialties.

6.The sustained successful implementation of InstaDoc for rare diseases can attract funding opportunities to support the expansion and implementation of our platforms and other platforms in other areas of health care.

The impact goals for InstaDoc for the next year are:

1.To raise the awareness about rare diseases in Nigeria, and by extension to other African countries and globally, by promoting understanding of symptoms, diagnosis, treatment options, and available support networks to healthcare professionals, patients, and their families.

2. InstaDoc will continue to facilitate early and accurate diagnosis of rare diseases through our mobile and web platforms for telemedicine consultations, thus enabling patients to receive prompt and appropriate management. This way, we can reduce diagnostic delays and improve health outcomes for people with rare diseases.

3. InstaDoc aims, over the next year, to connect patients with specialized rare diseases experts regardless of their geographical location. This way, we can bridge the gap between patients and health care professionals with specific knowledge and experience in rare diseases.

4. InstaDoc strives to consolidate the online support networks (virtual support groups) and resources (educational materials, access to relevant information) for patients and their families to assist them with navigating the challenges associated with rare diseases.

The strategies to be deployed for achieving these impact goals are:

1. InstaDoc will continue to identify, onboard and engage healthcare professionals with expertise in management of rare diseases. We will conduct refresher training and support to ensure they are equipped with the necessary resources to diagnose and manage rare diseases effectively though the InstaDoc platform.

2. InstaDoc will collaborate with organizations, advocacy groups, and patient associations that handle rare diseases on conducting awareness campaigns, educational initiatives, and resource development to reach a wider audience.

3. InstaDoc will work with stakeholders in the rural communities (healthcare providers, community leaders, and community-based organizations) to carry out outreach programs that are focused on identifying people with rare diseases, to raise awareness and facilitate referrals, thus increasing the access to InstaDoc for rare diseases management.

4. InstaDoc will invest in developing a robust contextualized platform towards addressing the unique needs of consultations for rare diseases. We will ensure secure and reliable connectivity, incorporate tools for sharing medical records and diagnostic images, and optimize the platform for efficient consultations for rare diseases.

5. InstaDoc will use the mobile and web applications to consistently provide information, educational materials and virtual support networks for people who are affected by rare diseases. This way, we can empower patients to participate actively in their own care and decision-making processes.

6. InstaDoc will work with research institutions, universities and healthcare organizations to collect and analyze data on rare diseases in Nigeria to identify trends and gain better insight into rare diseases in the country.

7. InstaDoc will continue to advocate for favorable policies and increased financial support towards addressing rare disease in Nigeria using our mobile, web and other telemedicine platforms.

The iterative process using some key steps and metrics to measure our impact goals involves the following:

1. InstaDoc uses key performance indicators (KPIs)  which are measurable, relevant, and directly linked to our desired outcomes.

These include:

a. Number of rare diseases consultations conducted on InstaDoc mobile and web platforms

b. Percentage of patients diagnosed monthly

c. Patient satisfaction scores (scale of 1 to 10) with InstaDoc services

d. Number of healthcare workers trained in rare diseases monthly

e. Pre- and post-outreach surveys to determine increased levels of awareness of rare diseases

f. Number of virtual support networks established monthly

2. InstaDoc collects this data while ensuring that we comply with data privacy regulations and protect patient confidentiality.

3. InstaDoc generates clear and concise monthly, quarterly and yearly reports that summarize each KPI and highlight areas that need improvement.

4. InstaDoc compares the KPIs with Nigeria healthcare data so as to provide context to our services and itemize areas of strengths and areas that require improvement.

5. InstaDoc uses surveys, interviews, and focus group discussions to obtain qualitative feedback and insights into the effectiveness of our services.

6. InstaDoc engages in continuous quality improvement processes. We usually adjust the measurement framework as needed to better reflect the desired outcomes.

7. InstaDoc conducts impact assessment studies to assess the social and economic impact of our strategies, such as long-term patient outcomes, cost savings, and other benefits to the society due to improved access to care of rare diseases.

InstaDoc's theory of change:

Background and Problem statement: There is lack of specialized medical expertise and limited access to healthcare services for people affected by rare diseases in Nigeria. There is need to surmount geographical limitations, increase awareness, enable prompt diagnosis, and avail expert consultation and support for patients with rare diseases in Nigeria.

Inputs: 

i. InstaDoc has mobile and web platforms for secure and reliable data exchange, and virtual consultations.

ii. InstaDoc engages healthcare professionals with specialized experience and knowledge to manage rare diseases on our platforms

iii. InstaDoc continues to optimize the software and tailor to meet the needs of the patients with rare diseases

iv. InstaDoc partners with rare diseases organizations, advocacy groups, healthcare workers and other relevant stakeholders in Nigeria to provide awareness, resource development and patient support.

Outputs:

i. More patients with rare diseases in Nigeria have better access to specialized management of rare diseases through InstaDoc

ii. There is timely diagnosis, reduced delay in accessing appropriate treatment and support

iii. Through virtual support networks, patients with rare diseases have a better support and information to empower them to better manage their conditions

iv. The capacity of health care workers is improved and they are better equipped to manage rare diseases remotely.

v. InstaDoc will generate valuable data and insights on rare diseases in Nigeria, thereby contribute to research and knowledge about these diseases.

Outcomes:

i. Improved health outcomes for those with rare diseases

ii. Patients with rare diseases will have increased knowledge and support, hence are better able to manage their condition resulting in a better quality of life.

iii. Better healthcare system for managing rare diseases

iv. Better knowledge sharing and collaboration among healthcare professionals, researchers, and organizations working on rare diseases in Nigeria

Impact:

There'll be a reduced burden of rare diseases in Africa by making available equitable access to specialized care, improving patient outcomes, and strengthening the health system's capacity to address rare diseases effectively.

Evaluation tools:

Data generated on Instadoc mobile and web software applications and other registers for capturing outreaches and remote consultations to report all the Key performance indicators.

The core technology that powers InstaDoc is a combination of the following:

1. Reliable and stable high-speed internet connectivity

2. Mobile networks play a major role in facilitating the communication between our patients and healthcare workers.

3. Mobile and web software applications serve as the interface which connects the healthcare workers with the patients remotely.

4. Electronic Health Records (EHR) enables us at InstaDoc to sustain a continuity of care and accurate documentation.

5. Remote monitoring  with home monitoring equipment, self assessment tools and diagnostic tools

6. We deploy access controls to secure patient's data and maintain data privacy.

Full-time staff: 7

Part-time: 3

Contract staff: 5

Seven (7) years

The leadership team of InstaDoc is a diverse one with many cultural tribes in Nigeria represented.

At InstaDoc, we provide a cultural sensitivity training to the healthcare professionals that we engage periodically. This training usually addresses cultural nuances, beliefs, and practices related to management of rare diseases in Nigeria.

In addition, we ensure that we engage multilingual healthcare professionals  to effectively deliver services to our patients in the language they understand.

Our educational materials are usually written in simple unambiguous format to enable our patients comprehend the information provided while using it to better manage their medical condition(s).

At InstaDoc, we use simple services including simple phone calls to provide services to underserved communities.

We also leverage local community centers to ensure access to our services by patients.

InstaDoc has clear policies to obtain informed consent and to ensure patient privacy. 

We plan to establish patient advisory boards that will comprise individuals with rare diseases.

The business model for InstaDoc involves the configuration of the web and mobile applications with good user experience and interface to serve to connect patients to healthcare providers from the comfort of their location. Virtual consultations, medical advice, and remote monitoring services, are provided to patients to ensure access to quality and expert care irrespective of geographical constraints.

Revenue is generated through subscription fees payment for patients, partnerships with pharmaceutical companies and community pharmacies for delivery of medications and collaboration with diagnostic centers and laboratories for effective facility-based or home monitoring of patients.

Additionally, InstaDoc seeks grants and philanthropic funding to support the sustainability and expansion of our services, aimed at improving healthcare outcomes for patients with rare diseases.

For InstaDoc to become financially sustainable, we do the following:

1. Subscription fees: There are categories of subscription fees for patients accessing care on the InstaDoc platform. These fees are highly subsidized for affordability and equitable access to care.

2. We have commenced interactions with insurance providers to negotiate contracts and institute reimbursement mechanisms for providing our services so as to have a stable stream of income.

3. InstaDoc actively seeks opportunities for funding from Government agencies, International Organizations, and philanthropic foundations to support our operations and scale up our services.

4. InstaDoc intends to commence operations in Canada and other African countries in the next 2 years to scale up our services and to be able to attract further investments and partnerships. This will enable us to increase our user base and generate more revenue

InstaDoc received a philanthropist funding to cover the subscription fees for some patients on InstaDoc which included the cost of prompt diagnosis and management of a rare disease using the InstaDoc platform.