CureSphere - Rare Disease Data Driven Community

The population prevalence of rare diseases is estimated to be 3.5%–5.9%, which equates to about 260–440 million individuals affected worldwide at any time (Ref. https://doi-org.ezproxyberklee.flo.org/10.1111/jdv.17165).  All countries, irrespective of the economic advancement are faced with a common set of issues while addressing Rare Diseases-

1. Delay in Recognition & Diagnosis - In developed economies, a patient usually goes through 5-7 consultations before a diagnosis is made. This will be a very high number in lesser developed economies. Moreover, the physicians are not trained to recognize the Rare Diseases, and therefore most diseases are missed. 

2. Delay in seeking medical help – Most Rare Disease physicians are usually in the more well equipped hospitals, while most patients may live far away from them. 

3. Social discrimination - Many Rare Diseases are accompanied by either a prolonged sickness or disabilities or deformities. The lack of awareness amongst the general public as well as the larger medical fraternity, creates many social taboos.

4. Economical crisis – Rare Disease medicines are extremely expensive and can impact anyone who may not have insurance covers. 

5. Expensive and mostly unavailable therapies – Many therapies are not available in most geographies.

6. Lack of freely available Rehabilitation, Exercises and Physiotherapy facilities – Lack of such facilities is universal. 

7. Patient support groups not strong enough – The groups are usually geographically oriented and therefore difficult for them to operate in many areas.

8. Long term funding for therapy – Government policies needs to be universal for such therapies.

9. Quality of Life – The disease has a huge impact on the quality of life. 

Rare Disease patients are faced with many other issues while seeking help for Rare Diseases. 

1. Their anonymity in many platforms may be lost. 

2. Data on their existing disease may be sparse. 

3. They would like to have answers regarding their disease progression and therefore analytics.

4. Organizations (Patient bodies, Pharma companies, Regulatory bodies) are faced with a lack of sufficient patient data to address major financial concerns, therefore limiting the early access to therapies.   

5. Lack of credible information amongst the larger doctor community, patients and therefore the community on most of the Rare Diseases.  

6. Lack of complete awareness amongst the patients, patient bodies and physicians regarding the existing policies that may be beneficial to them. 

Timely and adequate recruitment of eligible participants is a challenge for any rare disease. If there is a desire to study patients with early disease for disease-modifying agents or, those with advanced disease when the intervention risk is high, the data may be inadequate. Where patients are few, it may not be feasible to significantly narrow entry criteria based on disease stage or other characteristics. Geographic dispersion of potential participants requires multicenter or even multinational collaboration on the part of investigators (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3964003). 

There is a lack of a common platform that can help address the challenges of patients, doctors, patient bodies, payors, policy makers and pharmaceutical companies through credible information sharing. The current models of such information sharing is usually scattered. 

CureSphere is an anonymous community platform that is designed to revolutionize the way doctors and patients connect and share knowledge about rare diseases for the benefit of the patient.  Through our easy-to-use mobile app & website, patients can connect directly with knowledgeable doctors who specialize in rare diseases. Patients can engage in virtual consultations, answer questions, and offer guidance to patients seeking their expertise. Doctors who do not have any prior experience of handling Rare Diseases can also seek expert help from the Rare Disease doctors through sharing of patient reports and images of the patient reports.  

The app also helps patients join specialized communities tailored to specific rare diseases, where they can share experiences, and find comfort in knowing whether there are available solutions that they may not be aware of. The chat feature allows them to engage in private conversations or participate in group discussions, fostering a sense of unity and mutual support. Patient bodies can use this platform to share information about the progress of certain diseases in the specific communities, so that a more direct sharing of credible information can occur. 

CureSphere serves as a bridge between Rare Disease companies, doctors, and patients, where companies can connect directly with doctors and patients to share information about their latest treatments and medications. Patients can therefore stay informed about breakthroughs and advancements in rare disease treatments, giving patients hope. Doctors can also get the tools they need to deliver the best care possible. At the backend of CureSphere, we will have complete set of information that can be shared with policy makers, governments, treaters and companies to help them design their clinical trials and arrange funding across geographies. 

Policy makers will get direct feedback on their policies and therefore be in a better position to address the hurdles that may be there in enabling therapies to the patients. The Payors would understand the methodologies that may need to be employed for enabling treatment to be made available, especially in situations where the therapy costs may be very large.  

CureSphere utilizes cutting-edge technology to support its mission in the rare disease community. The platform through the data-driven approach, will be employing advanced analytics and artificial intelligence to extract valuable insights.  It facilitates seamless collaboration among stakeholders through intuitive user interfaces, secure communication channels, and virtual meeting spaces. With its technological foundation, CureSphere will empower patients, accelerate research and drive advancements in rare disease diagnosis, treatment, and policy-making.

In the realm of Rare Disease Treatment there are a few broad areas to consider - 

1. If a doctor can diagnose a Rare Disease patient early then the  therapy (if available) acts on the patient better in most cases. The delay in therapy, due to the delay in diagnosis, needs a broad technology solution that can enable screening of patients amongst the population. 

2. Once diagnosed, there is a requirement for patients to get the right support group and the right feedback on the available therapies and rehabilitation and physiotherapy if the disease requires these procedures. The technology can bring patients and people onto a common platform, where they can understand more on their disease and it’s therapies. 

3. Many of the medications are not available in every country. There is therefore a need to provide a technology solution to ensure that patients get access to therapy and funding. This was the solution (Recuperare) that we had submitted to the MIT Solve last year. 

Our solution CureSphere will address point 2 above whereby a community would be created where information and data would be shared between patients, doctors, pharmaceutical companies and all the other stakeholders. 

The impact created by this app will be in various ways-

1. Patients will be able to join communities and discuss about their condition with similar patients and their families, while being anonymous. This will help bring about the much needed privacy of patients. 

2. The patients can share their reports with doctors in a private mode and therefore get opinions from more than a single doctor.

3. Doctors who may not be Rare Disease experts can have their confusions resolved more easily by sharing their concerns with the expert doctors. 

4. Pharmaceutical companies would get access to patients for Clinical Trials in each of the groups that they may be interested in.  

To develop and implement the technology we have our experts from D2R Tech led by it’s promoter and Managing Director, Mr. Vineet Bhargava, who has led consulting enterprise IT consulting, development, and Enterprise IT program execution across domains for government and non-government enterprises for more than 20 years. Mr. Vineet Carries 12+ years of experience working with UnitedHealth Group and was working within their US and Global Government and Private business. Mr. Vineet managed IT solutions for Medicare/Medicaid/Behavioral health business and has expertise and understanding of the ecosystem required to run a healthcare community. He has provided consultations to clients for IT system implementations for Bangladesh, Saudi Arabia, Jordan and India. He has the experience of an End to End Enterprise Business Automation framework spread across 100+ enterprise applications. He has also Implemented Cognitive (AI) Automation maturity model for Program and drove across the enterprise. He has the specialization and experience in building strategies and leading deliveries of large to medium complexity programs budgeted over $500 million. The project execution would be carried out by Mr. Bhargava and his team. 

To understand the complexity and requirements of the Rare Disease space, we have the promoter and Managing Director of HED Healthcare, Dr. Bhaskar Jyoti Sonowal, who has more than 20 years of experience in developing healthcare programs for both the government and private sector. He has been instrumental in developing the National Rare Disease policy as well as the National Registry for Rare Diseases in India. His programs on accreditation of hospitals on Infection Control Practices (Safe-I), Patient Safety (National Initiative for Patient Safety - NIPS), Healthcare Workers Safety (Healthcare Workers Safety Advisory Board) and Reuse Prevention (WHO cares) have all helped in creating national strategies for helping strengthen the healthcare systems. 

This team therefore is led by people who understand their domains and work collaboratively to drive the solution from the development point of view. 

Dr, Bhaskar is also engaged in cross border collaborations in Rare Diseases and Clinical Trials called Indo-US Rare and Jeeva Trials respectively. He has wide linkages with patient bodies globally. The program once completely developed would be offered to these patient bodies to disseminate widely. 

Our solution can be considered a prototype rather than a concept due to several key factors. Firstly, we have developed a working model that showcases the core functionality and features of our platform. Users can interact with the platform, test its capabilities, and provide valuable feedback for further refinement.

Additionally, we have implemented the necessary technological infrastructure to support the platform's functionality. This includes robust data management systems, secure communication channels, and integration with external databases and resources.

Furthermore, our prototype has undergone initial testing and validation to assess its performance and usability. We have incorporated real-world data and are in process of  user trials to ensure the platform's practicality and effectiveness.

Overall, these factors differentiate our solution as a prototype, demonstrating its tangible implementation, technological readiness, and potential for further development towards a fully functional and scalable solution.

The prize is an excellent platform for us from the developing world, to bring forward solutions that can impact the entire world. The problems in the developing world are many, but we have been able to identify a few solutions that would help bring about a better quality of life for patients living with Rare Diseases. Such solutions when showcased to the world through this platform, would enable the technology a better reach and credibility. 

Secondly, we would like to get into a situation where MIT or it’s students may be interested in further developing this prototype, and thereby impact a larger audience of Rare Diseases. 

Finally, all of us in the Rare Disease solution space find this prize, one of the most  coveted ones, since it enables us to understand the thinking on the global entrepreneurial space.

Dr. Bhaskar, our team lead, is a part of many national and global platforms for Rare Diseases, and is well connected to the Rare Disease community in India and many other countries -

1. He is a corporate executive member of Indo-US Rare, one of the International NGOs working on bringing about solutions to Rare Diseases and Clinical Trials in many countries besides India and US.

2. His organization is a partner of Virginia based Jeeva Trials, one of the SAAS enabled platforms working towards easy recruitment of patients into the Clinical Trials for Rare Diseases. 

3. He has been instrumental in crafting the National Policy for Rare Diseases in India in 2017 through 2021. 

4. He has been instrumental in creating the National Registry for Rare Diseases in 2017 along with the Indian Council of Medical Research and WHO. 

5. He is well connected with almost all the Rare Disease practitioners and almost all the patient bodies operating in this region. 

6. He has created large scale programs to bring about awareness on certain Rare Diseases like Hemophilia.

We are therefore well placed to execute any program on Rare Disease in Asia, Southern Europe, Middle East and Africa.

The current market requires the following:

1. A doctor to suspect that the disease is Rare.

2. Quick diagnosis - to screen the patient for Rare Diseases.

3. A Rare Disease expert evaluating the patient.

4. An elaborate set of diagnosis if screening is positive.

5. The patient finds support groups for getting more information on the possibility of therapy. 

6. Patients finding opportunities to enter a clinical trial or get a therapy if already available.

7. The patient is able to fund the therapy either directly or through insurance cover.

8. The medications are made available in the country where the patient is through regulatory clearances.

9. Follow up on the progress of the disease.

10. Rehabilitation measures.

These situations are universal across the world and solutions to these would enable the Rare Disease landscape becoming more addressable. However, each of these steps are filled with many local hurdles, which needs people with comprehensive understanding on the subject of public health. 

CureSphere can be initiated across the current market, where doctors who are novices in Rare Disease can get immediate help from the experts. Patients can join disease specific groups and learn from each other. Experts can communicate with their patients through private chats. Pharmaceutical companies can inform experts and patient groups on the availability of clinical trials or therapies. Policy makers and payors can understand the intricate details that the patients face while seeking either diagnosis or therapy for Rare Diseases. 

The solution when expanded into a fully commercial version would be in a position to address large communities and countries without the geographical barriers. There would be regular developments of this solution so as to cater to the needs of all the stakeholder, making it viable and sustainable. 

Goals for next year -

1. 3 or more Patient bodies start using the app across the world.

2. 60% or more of the Rare Disease Experts join the discussions in India

3. 100 or more general doctors join the community.

4. 2 or more pharmaceutical companies join the forum.

The Impact created by us over the 1st year will be:

1. Develop processes meaningful for the community from the feedback of the stakeholders of the solution. 

2. Generating an analytical report on the trends of Rare Disease patient requirements for Policy makers, Pharma Companies and Regulators.

Goals for Next 5 years -

1. One large International Patient Body joins the forum for each of the communities.

2. All National Patient Bodies in South East Asia will join the forum. 

3. All National Experts from South East Asia join the forum.

4. All relevant Pharmaceutical companies who have FDA approved medications join the forum. 

5. All relevant diagnostic companies who have FDA approved diagnostic methods join the forum. 

The Impact created by us over the next 5 years would be:

1. Generate large scale country and regional reports on the Rare Disease environment which can be used by the relevant organizations.

2. The report becomes the background for the development of Policies on Rare Disease for those countries that do not have them. 

3. Rare Disease funding mechanisms are established in 2 or more countries in each of the regions. 

To measure our progress toward our impact goals, we employ several key performance indicators (KPIs) and evaluation methods. Here are the primary ways in which we will be measuring our progress:

1. User Engagement: We will track user engagement metrics such as Monthly Active users(MAU), Weekly Active users(WAU) and Daily active users(DAU), frequency of platform usage, and duration of user sessions. Increasing user engagement indicates the value and usefulness of our platform, as well as the effectiveness of our efforts to foster collaboration and knowledge sharing.

2. User Satisfaction: We will gather user feedback through surveys, interviews, and user experience testing. Monitoring user satisfaction helps us understand the strengths and areas for improvement in our platform's functionality, usability, and overall user experience. Positive feedback and high user satisfaction ratings indicate that we are meeting user expectations and delivering a valuable solution.

3. User Growth: We will track the growth of our user base over time, monitoring the number of new users joining the platform. A steady increase in user adoption indicates the growing recognition and acceptance of our solution within the rare disease community.

4. Research and Clinical Trial Participation: We monitor the number of research collaborations and clinical trials facilitated through our platform. Increased participation from researchers, pharmaceutical companies, and patients in research projects and trials demonstrates the effectiveness of our platform in advancing rare disease research and treatment development.

5. Policy Influence: We assess the impact of our advocacy efforts by monitoring policy changes, funding allocations, and improved access to treatments for rare diseases. Tracking these outcomes helps us evaluate our influence on policy makers and the effectiveness of our initiatives in driving positive changes in healthcare policies and systems.

6. Partnerships and Collaborations: We measure the growth and impact of our partnerships with patient organizations, research institutions, and pharmaceutical companies. The number of collaborations, joint initiatives, and shared resources indicate our ability to forge strong partnerships and leverage collective expertise to drive meaningful impact.

By consistently monitoring and analyzing these metrics, we can gauge our progress, identify areas for improvement, and adapt our strategies to ensure we are on track to achieve our impact goals in the rare disease community.

Our solution aims to have a significant impact on the problem by addressing the challenges faced by the rare disease community. Here's how and why we expect our solution to make a difference:

1. Collaboration and Knowledge Sharing: Our platform brings together patients, healthcare professionals, pharmaceutical companies, policy makers, and payors in one space. By fostering collaboration and knowledge sharing, it enables stakeholders to pool their expertise, insights, and resources. This collective effort can lead to better understanding, improved treatment approaches, and more effective policy-making for rare diseases.

2. Data-Driven Insights: We will utilize advanced data analytics and artificial intelligence to analyze the vast amount of patient information available on the platform. By extracting valuable insights from this data, we can identify patterns, trends, and potential breakthroughs. These insights can guide researchers, clinicians, and policymakers in making informed decisions, accelerating the development of new treatments and interventions.

3. Empowering Patients: Our solution empowers patients by providing them with a voice and a platform to share their experiences, challenges, and ideas. It enables them to actively participate in their own healthcare journeys and contribute to the broader rare disease community. By giving patients a sense of agency and fostering a supportive environment, we believe their perspectives and insights can lead to better outcomes and improved quality of life.

4. Driving Policy Change: By bringing together key stakeholders, including policy makers and payors, our platform facilitates discussions and collaboration on policy issues related to rare diseases. It provides a space for policymakers to understand the challenges faced by patients, learn about innovative treatments, and make informed decisions that can drive positive change in healthcare policies and funding allocations.

5. Recruitment for Clinical trials : Through the platform, Pharmaceutical companies gain access to a diverse pool of ready-made patients who are actively engaged in the rare disease community. This creates an opportunity for efficient, platforms data driven recruitment and enrollment of patients for clinical trials. By connecting pharmaceutical companies with suitable patients anonymously, our solution streamlines the often time-consuming and challenging process of patient recruitment for clinical trials. This accelerates the pace of research and development, expediting the evaluation of potential therapies and treatments for rare diseases, hereby improving patient outcomes.

Overall, our solution aims to have a transformative impact by fostering collaboration, leveraging data-driven insights, empowering patients, and driving policy change. By addressing these key areas, we expect to see advancements in rare disease research, improved access to effective treatments, and better support systems for patients and their families.

Our solution is powered by a robust and innovative technology stack that drives its functionality and effectiveness. At the core, we leverage advanced data analytics and artificial intelligence (AI) algorithms to process and extract meaningful insights from vast amounts of patient information.

The platform utilizes secure cloud infrastructure, enabling seamless scalability and accessibility for users. This ensures that patients, physicians, pharmaceutical companies, policy makers, and payors can easily collaborate and share data within a secure and privacy-conscious environment.

Furthermore, we employ intuitive user interfaces and interactive visualizations, making it user-friendly and accessible to individuals with varying technical backgrounds.

In addition to data analytics and AI, our solution incorporates other technologies such as secure communication protocols, integration with external databases and resources, and personalized health tracking systems.

By leveraging this cutting-edge technology stack, our solution empowers the rare disease community by providing a data-driven and collaborative platform that facilitates advancements in research, treatment, and policy-making.

Our Solutions team comprises of:

Software Expert - 1 full time

Software Development - 4 full time

Our Rare Disease Outreach team comprises of:

Rare Disease Expert - 1 full time 

Outreach Expert for Patient Bodies - 1 full time

We have plans to expand the team with time. 

We have been working on the current solution for 6 months. This has been a mix of detailed discussions, feedback from potential users and the actual development process. 

We have been working on our previous solution Recuperare, which was submitted in the Prize for 2022 for more than a year now. Over time, we will integrate both the solutions. 

Our mission in the area of women’s and societal development is to create a more inclusive environment where differences are recognized, understood, appreciated and utilized to its full potential. In the mission to spread awareness on various aspects and best practices of Inclusion, we are working with organizations and institutions to sensitize, build awareness and equip them with tools to build a more inclusive world. 

Our leadership team at HED Healthcare comprises of 66% women leaders, and they own 60% of the business. Diversity and Financial inclusion are at the core of our vision. 

Under our education wing, we have developed an agreement with BD Foundation to carry out our work in Diversity and Women’s development in the social sector. BD Management Advisory (a.k.a BD Foundation) is a global think tank focusing on Diversity and Inclusion. The organization is providing a platform for creating awareness on inclusive practices, conducting research & building advocacy platform to promote inclusive leadership. As a Global Top 10 Diversity Consulting firm, the foundation recognizes that every organization has unique talent management needs, needs that cannot be addressed with a simple "one-size-fits-all"providing. That’s why we take the time to understand its client's business objectives and provide solutions tailored to meet those head-on.

We are an extremely passionate team in the area of women’s development and societal development – differentiated by our commitment to making a difference and harnessing the power of business to promote diversity and inclusion. It is our endeavor to provide end to end value added services across functionalities and domains to our clients and assist them to create a robust culture by making Diversity and inclusion a vibrant reality in the workplace. We work across all facets of diversity, women entrepreneurship and economic development– Gender, LGBT, disability, age, culture, and so on. This is where our multi-disciplinary team of practitioners with their diverse skill sets, competencies and varied experience bring their expertise to each of the projects in hand.

To answer this section, let me begin by informing about HED Healthcare and it’s businesses. HED Healthcare has 4 business verticals - Healthcare, Education, Environment and Infrastructure Development. Both products and services are provided to our customers in any of the above 4 areas. 

We have separate business models for each:

a) Healthcare Manufacturing & sales - It’s a pure form of trading and our customers include governments, the multilateral and bilateral organizations as well as private chains. We get the products manufactured or sourced as per the requirements.

b) Healthcare Consulting - This model is based upon the requirements of the clients needs, and we develop solutions and programs to address the concerns of our clients.  

c) Education & Environment - We undertake partnerships with renowned organizations that are not present in India physically, and promote their products and services on our behalf. 

d) Infrastructure Development - This is our latest initiation, and we seek to build infrastructure related to Healthcare, Education and increasing connectivity. 

Our Software partner, D2R Tech, has a separate P&L account and their customers come from varied businesses and countries. 

Our business model for CureSphere -

This will be a social model of business, where the following will be enabled:

a) Patients, Patient bodies and Doctors will register for free.

b) Pharmaceutical companies will register for free, but would pay for any promotions or information.

c) Clinical Research Organizations can undertake clinical trials post all regulatory approvals and upon approval of the patients. Non confidential data may be shared with such CROs to provide a patient benefit. 

We expect the organization to become self-sustaining upon achievement of a minimum number of paying users (Pharmaceutical companies and CROs).   

With the grant we will work on the first year deliverables and will have the following developed through it -

a) A complete application that would be shared with patient bodies, pharmaceutical companies, payors, regulatory bodies, Rare Disease experts and general doctors. 

b) Data would be collected at the backend, which would be used by organizations for decision making.

We plan to further generate funds through:

a) Holding National and Regional conferences on Rare Diseases.

b) Data for diagnosis and treatment.  

From the subsequent year, we will create a separate Section 8 company (for profit company but having the ability to receive funds) for CureSphere and generate a sustainable funding through:

a) HED’s own funds and CSR (Corporate Social Responsibility) funds.  

b) International conference on Rare Diseases.

c) Membership driven funding.

d) Data driven funding.

Our intent is to make CureSphere a completely self sustaining business capable of generating and utilizing funds. 

HED Healthcare and D2rTech are both financially stable and businesses are sustainable. Some of the previous work done by HED Healthcare include:

In the year 2022-23, HED Healthcare was the largest supplier of Oxygen Cylinders to the United Nations (India), Government of India, Asian Development Bank and Japanese Government. Supplies were made from our factory at Gandhidham, Gujarat, India.

We supported the government of Odisha, India, in finding and supplying solutions to enhancing the health of the people of the state across 111 ULBs

We supported the government of Odisha, India, in finding and supplying solutions to enhancing the health of the people of the state across 111 ULBs

We directly supplied the un agency – monusco in congo with life saving medicines

We supported UN agency Binuh in Haiti in addressing the cholera epidemic with diagnostic kits

We have generated funds from other business areas, a part of which has been used to fund the current application. This application would however require support to grow in scale, and we plan to support this from internal company funds.   

We have not applied for any grant or loan for this advent until now. If we were to receive the prize, then we could immediately increase the scale of the operations across the region.