Sehat Kahani (Story of Health)

With more than 40% of patients with rare diseases initially misdiagnosed, this “diagnostic odyssey” can have serious and long-term health consequences for the 300 million individuals affected by rare diseases and their families. A key factor contributing to initial misdiagnoses is the shortage of clinical geneticists. Despite an estimated three-quarters of rare diseases being genetic in origin, there are significant barriers in accessing appropriate genetic counselling. Through Sehat Kahani app Specialists can remotely through video-consultations and electronic health records communicate with primary care physicians and other health care providers, sharing patient information to make more informed decisions regarding diagnosis and care. By expanding communication and adding structure to the consultation process, the team can impart information more efficiently, which can lead to faster diagnoses. If scaled globally our solution offer exciting possibilities for moving healthcare forward to a point where patients can be empowered, and systems streamlined, to accelerate treatment.

Rare disease affects less than 1 in 2,000 people, collectively there are between 6,000 – 8,000 individual rare diseases. Around 1 in 17 people will be affected by a rare disease at some point in their lives. The challenges to patients with a rare disease are threefold: they may experience the manifestations of the disease but struggle to find physicians knowledgeable about their condition to manage them; they may suffer the consequences of the disease and go completely unrecognized; and they may be faced with very high costs for disease-specific medications. Additionally, throughout the coronavirus pandemic, nearly 8 in 10 rare disease patients experienced cancelled medical appointments. For many rare diseases, there are only a handful of specialists nationwide, or even worldwide, who have expertise in that condition. As a result, patients often are forced to travel long distances to access their treating providers. Such travel involves significant expenses, time off from work and logistical challenges. For rare disease patients who are immunocompromised, it may not even be safe for them to travel these distances. The burden of travel is so great that 17% have moved (or are considering relocation) to be closer to treatment to manage their rare diseases

Sehat Kahani is a health tech impact business that aims to democratise health care for all using a network of qualified and previously untapped network of female doctors and specialists across the globe using telemedicine. To tackle the challenge above, we have also launched a telemedicine based mobile app that allows a patient to record their health history, chat and conduct an audio/video consultation with an available network of specialists. Our solution is enabling specialists to gain better insight into people with rare diseases, and they’re collaborating with patients and providers across the globe on best practices and new forms of treatment. Our innovative tools uses virtual tools such as diagnostic tools, video appointments, and a triage system to deliver genetic assessments and counselling remotely to patients and their primary care physicians. We have also integrated real-time translations, allowing specialists in various countries to discuss the same patient who may have a rare disease. By connecting patients to rare disease specialists more quickly and enabling those specialists to partner with local providers to deliver care, the time to diagnosis can be accelerated.

At demand end our target beneficiaries are the general population that might not have the accessibility to healthcare services particularly due to nationwide lockdown and closure of outpatient clinics. We will also be extending our solution to corporates and large organizations so that they can either provide access to our application to their employees or to their clients. On the supply end our beneficiaries are the female doctors that do not continue their medical practice due to  social pressures, cultural taboos and lack of support from family. Sehat Kahani approaches the challenge of converting need into demand through a human-centred design approach. Our network of doctors are trained to deliver quality health services while incorporating feedback from our beneficiaries to ensure shared decision making and informed health choices are being made. Through these techniques, Sehat Kahani provides a service that is data centric, building a demand for low-cost, customer-centred healthcare that has translated into a greater likelihood of patients availing remote services for their ailments or for suspected rare disease cases. Our solution is also paving the way for unemployed female health resources to continue their medical practice remotely while building their capacity to utilize mobile based solutions in their practices.

Below are five ways our solution is impacting our beneficiaries:

“Intelligent triaging” allows for more appropriate use of specialty genetic services. The triage app allows primary care physicians to collect and enter patient information by using technology to streamline the process to make a referral to a rare disease specialist. By using the app, clinicians can solicit guidance from specialists and geneticists, including testing that might be needed before a patient’s first consult. That helps filter out patients who don’t have a rare disease, reducing unnecessary testing and ensuring effective use of resources.

Telegenetic consultation strengthens communication across the health team. Specialists can communicate with primary care physicians and other health care providers, sharing patient information to make more informed decisions regarding diagnosis and care. By expanding communication and adding structure to the consultation process, the team can impart information more efficiently, which can lead to faster diagnoses.

Telegenetic visits can enhance the current model of care. By providing initial insights into a patient’s condition, potential diagnosis, and care plan, virtual visits help providers streamline subsequent in-person visits. Virtual visits are especially important during the Covid-19 pandemic, when only patients with the most critical conditions should go to doctors’ offices or medical centers for in-person consultations.

Telehealth helps reduce costs, improve access, and increase efficiency. Transportation costs, missed work, and frequent in-person visits are common challenges for patients seeking care from clinical geneticists. In addition, the relatively few specialists are typically located in urban areas, making it difficult for patients outside those geographies to seek care. Remote care makes it easier to access these specialists and eliminates added costs and burdens on families. Findings from our innovation has shown that virtual visits are shorter and more focused, yet still rate high in patient satisfaction.

Virtual visits provide a window into patients’ lives, helping improve patient/provider communication. When health care providers are able to see patients in their home environments, it opens the door for more personal and honest discussions around their day-to-day struggles. Providers are able to form better connections with families by observing them at home, noticing behaviors that may not occur in a clinical setting, and recommending changes that can lead to more positive health outcomes.

Telehealth has been particularly helpful for those living with rare diagnoses who often have limited information about their condition and the best route for treatment. This method of care not only makes it easier for patients to receive the necessary monitoring and treatment they need, but connects researchers, physicians, and specialists from around the world, allowing them to collaborate and determine the best way to manage and treat each individual. Our innovation has the power to effectively assist doctors in diagnosing and treating a patient earlier than ever before, ultimately improving a patient’s quality of life. 

Using an integrated innovation model and implementing human centred design, we have been successful in establishing 35 e-health clinics across Pakistan that have served more than 360,000 beneficiaries through active consultations while more than 3.1 million lives have been impacted through preventive health campaigns. Through our mobile application we have catered to 150,000 +active users. We have created a network for 5000 female doctors while providing them access to online health Education programmes and training for their capacity building as well as employment opportunities.  We empower our beneficiaries to seek telemedicine services for primary care services. They experience an increased convenience in accessing medical services by choosing the service model they prefer based on their own unique characteristics as beneficiaries. Furthermore, out of the workforce female doctors and healthcare workers also benefit from the improved work-life balance due to flexible practice and hours within the vicinity of their homes.

Sehat Kahani uses secure technology that utilizes web standards and features HIPAA-compliant privacy controls and sharing preferences for each user while collecting and integrating data. Sehat Kahani mobile application provides health professionals and frontline health workers with convenient and rapid access to evidence-based information, supporting clinical decision-making at the point of care. We have integrated clinical algorithms in the application to aid physicians in determining a disease diagnosis. In addition our automated chatbots in the application also have the ability to connect with users in real time and auto redirect patients to available online doctors and specialists across the globe to receive virtual consultation. It will also serve as a recommender system for patients on the basis of preferred specializations and symptoms so that beneficiaries can avail timely access to services. By offering real time video consultations and live chatbots the app creates a status-quo report in which all previous findings, working hypothesis, remaining differentials and the next diagnostic steps are presented for our users. We are AI based data aggregators striving to streamline true health data in relation to rare disease outcomes that have been underreported in Pakistan. Our technology has the power to effectively assist doctors in diagnosing and treating a patient earlier than ever before, ultimately improving a patient’s quality of life. This innovative communication tool can give underserved populations, including those suffering from a rare condition, a true voice within healthcare and allow them to receive the recognition and care they deserve.

Our technology is a complete end to end solution for our beneficiaries that include features such as: doctor’s profile with appointment slots booking with genetic specialists, complete patient EMR system, video-consultation, chat to doctor, e-prescriptions and e-labs. We use real time data analytics to find rare disease patterns utilizing data that was never captured before. We use Power BI in analysing patient data that is automated into real time dashboards to understand existing health needs of our beneficiaries. Sehat Kahani integrates registry-specific functionality as a service or middleware model, interacting with the electronic health records (EHR) as the presentation layer on one end and the registry database on the other. Utilizing this approach, Sehat Kahani integrates Shared Health Record (SHR) that facilitates the sharing of clinical information between health information systems to enable beer patient care, thus improving health outcomes. We have also integrated machine learning in our existing technology to improve user engagement through AI integration in order to analyse user behaviour to provide insight into the user. We will utilize this information to make changes for better user engagement. In addition, by integrating chat bots, predictive algorithms and real time automated dashboards, beneficiaries utilizing our solution are able to make a well-informed decision. For our proposed solution, algorithms are developed to train data sets for statistical applications to enable data processing with accuracy. To improve prediction accuracy, input of sufficient patient information is ensured to make a clinical decision or for risk assessment. 

Telemedicine, globally, is now pacing in early diagnosis and treatment of rare diseases. Facilitating easier and quicker access to international specialists in respective faculties, it paves the way to enabling patients receive expert advice online through video and audio consultation platforms cutting down travel time and expense.

Children’s National Hospital in Washington, D.C., has been working with Microsoft to pioneer the use of telegenetic consultations for patients and, more specifically, for those who are searching for a diagnosis, potentially for a rare disease. Since the inception of this pilot program in 2019, the average time a patient waits to see a clinical geneticist has decreased from three to four months to just six to eight days. This pilot is supported by the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease, which was formed in 2018 to bring the rare disease and technology communities together to overcome the barriers to diagnosing these diseases, of which there may be as many as 8,000, faster and more accurately.

Source: https://www.statnews.com/2020/08/27/telehealth-speed-up-diagnosing-rare-diseases/

Telemedicine can also serve as an effective platform to monitor and provide care for the rare genetic diseases that are not accessible at primary healthcare facilities. The Marfan Foundation has unveiled a mobile health app, developed by Backpack Health, that allows people living with Marfan syndrome to collect health information from disparate mHealth devices and medical records platforms and create a personal health record. The app also helps providers manage care for patients who often see several specialists.

https://www.marfan.org/about-us/news/2018/04/24/marfan-foundation-backpack-health-partner-offer-unique-tech-platform#.YMxLf_kzaM9

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30million EU citizens.

https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-1349-1

Risk: Security and privacy
Mitigation:

1. We have established guidelines for sharing data with telemedicine providers to minimize the risk of patient information being compromised. We have proper technology safeguards are in place to make certain personal health records are stored in compliance with HIPPA regulations
2. We have collaborated with Microsoft Azure cloud services to ensure digital information like images and video consultations is securely stored in electronic health records.
3. We transmit patient/client data on an as-needed basis and monitor staff for inappro­priate access to protected health information.

Risk: Ensuring informed consent of telemedicine users

Mitigation:

1. We have instituted policies and procedures that inform patients of their rights and responsibilities regarding their treatment.
2. Physicians in our network are equally aware of informed consent practices so they can implement them consistently.
3. We carefully document patient authorization to receive care through telemedicine.

Risk: Clinical malpractice: Clinical malpractice happens often in in-person healthcare, but the risks increase with telehealth. Add to this the fact that there is no clear standard of care established by national legislatures, and quality may be uneven between one provider and the next. 

Mitigation:

1. To mitigate this challenge, we have devised guidance for malpractice and whistleblowers. In addition, we provide quality training and ensure quality checks to assess clinical performance and ensure that quality health services have been provided. 
2. Furthermore, for our proposed solution, algorithms will be developed to train data sets for statistical applications to enable data processing with accuracy. The algorithms would be run millions of times to improve accuracy.

Current number of beneficiaries 

• Female doctors and specialists: 5000
• Female community health workers: 110
• Beneficiaries in low income households: 3,230,000
• Beneficiaries in peri urban or urban communities: 385,000
• Mobile Application active users: 165,000

After one year, number of beneficiaries 

• Female doctors and specialists: 6000
• Female community health workers: 165
• Women and children living in low income households: 5,000,000
• Women and children in peri urban or urban communities: 600,000
• Mobile Application active users: 500,000

After five years, number of beneficiaries 

• Female doctors and specialists: 20,000
• Female community health workers: 250
• Women and children living in low income households: 15 million 
• Women and children in peri urban or urban communities: 30 million
• Mobile Application active users: 4.5 million users 

Sehat Kahani; like all the other Global Players in the telemedicine market,  intends to grow its current business by expanding their Telemedicine Platform through the e-clinics and mobile application and not only become a market leader in Digital Health in Pakistan but also become a global player. With the current COVID scenario; the inertia towards telemedicine has already been broken and the acceptability of seeking a doctor’s opinion over a video call through a smartphone while being able to maintain social distancing and reducing the risk of exposure by not going to a hospital has grown tremendously.  Sehat Kahani  has already  build a strong network of corporates and industry magnets (Including Banks, Telecoms and Pharmaceuticals as the key giant players) as early adopters to champion Sehat Kahani’s vision and impact during the current COVID Pandemic where they are availing their services for their employees. In the next three years, we aim to be able to lock over 50 million active users availing e-health services through the E-Health clinics and our mobile application, shifting the trend from physical health towards virtual OPD consultations and other digital diagnostic services and become the next ‘Uber for Healthcare’ in Pakistan. Sehat Kahani is also in the process of creating strong Public Private Partnerships ensuring Primary Healthcare access is taken up by the government and creates potential impact.

Sehat Kahani utilizes the World Health Organization (WHO) framework to monitor and evaluate for following domains (a) Health Outcomes: We compare outcome measures following telehealth and in-person visits among patients with chronic conditions as well as data on rare disease burden which we use to compare in other regions with and without telehealth. With a 3.1 million users one-fourth of our patients have reported come back for a follow-up consultation with reduction in tertiary care referrals by early treatment opportunities. (b) Health Delivery – Quality and Cost: We also assess impact the quality and cost of healthcare delivery, including areas of access, effectiveness, cost, safety, and equity. Our patients have reported to spend 50% or less when getting a consultation on our platform with better compliance. (c) Experience: We also utilize tools such as Telemedicine Satisfaction and Usefulness Questionnaire to asses patient provider experience and compliance. Other experiential factors like encounter duration, video and audio quality, and connectivity are also tracked. (d) Program Implementation Indicators: Through our program, a network of 5000 female health doctors have been trained to utilize telemedicine that were previously unemployed and are earning 1.5 times more of what they would be earning in a physical setting.

We have a team of 120 team members working full time  comprising of 80% women and 75% women leadership roles. We have a network of 5000 female doctors and specialists who delivers health services through our solution. We also have 35 part time team members in the organization.

Sehat Kahani was co-founded by two female doctors, Dr. Sara Khurram and Dr Iffat Zafar who had each faced the socio-cultural barriers of not being able to have a supportive environment to fulfil their career  ambitions while realizing the dearth of health resources that has negatively impacted health indicators of Pakistan. Our team of experts is well equipped to design, develop and deploy mobile health solutions that are cost effective and easy-to-use, thereby creating convenient, accessible and remote health care options for our beneficiaries. Key qualities of our team that facilitate a seamless transition in telehealth delivery include patient-centeredness, high quality care, collaborative approaches, sustainable financial models, and accountability. Our team is highly dedicated working round the clock to bring about the desired outcomes and results expected from the project. We have a democratic leadership style in the organization that allows for constant feedback and flow of ideas among team members that further improves the likelihood of project success. Our multidisciplinary team with diverse backgrounds assesses beneficiaries’ needs to see what their barriers to care may be and helps to address them by implementing and continually improving our services.

1. As a leader, we articulate authentic commitment to diversity, challenge the status quo, hold others accountable and make diversity and inclusion a personal priority.
2. We also show awareness of personal blind spots, as well as flaws in the system, and work hard to ensure a meritocracy.
3. We regularly engage in open, honest, and multidirectional dialogue at different levels, and work on developing a shared understanding that achieving diversity takes commitment and hard work from every member of the team.
4. We strive to empower others, pay attention to diversity of thinking and psychological safety, and focus on team cohesion.
5. We employ a range of formal and informal professional development tools, such as mentoring, coaching, and education opportunities to build capacity of our team and improve work life satisfaction. We regularly evaluate internal talent to ensure that employees especially with disadvantaged backgrounds are in the leadership development pipeline.
6. We provide training for unbiased interviewing and selection processes, and establish strategic partnerships that connect our organization with diverse talent pipelines.
7. We also strive to be attentive to others’ cultures and adapt as required. We also endeavour to remain humble and empathetic that opens us to criticism about our personal biases, and greater self-insight into personal limitations thereby prompting greater humility, empathy and perspective-taking.

No our team does not constitute of any lead or team member with a rare diseases

We have a five year track record of creating e-health and m-health solutions that has been utilized by over 3.3 million beneficiaries. With the current pandemic implications we  aspire to expand our solution that is accessible to a wider, eventually global, audience especially reaching out to people with rare diseases. With the Horizon prize, we want to empower and create employment opportunities for the female health workforce to utilize remote solutions in order to improve health outcomes in Pakistan. We feel that the Prize can help us emerge as better leaders for our company as well as support our collective vision of strengthening primary healthcare of Pakistan by integrating e-health and m-health solutions. To reach this global vision of health for all, we require partners, mentors and advisors. We want to reflect on our experiences and share our knowledge to cross learn and grow. In addition, receiving mentorship from experts will enable us to expand our solution sustainably while improving utilization uptake of our beneficiaries. The resources from the prize will also enable us to integrate necessary technological upgradations such as AI integration, chatbots and automated algorithms that will enable us to predict health patterns of our target beneficiaries which is extremely pivotal for us to understand and analyse especially healthcare needs of our users. The funds will be used to expand our operations while continuing to expand our network of specialists globally to ensure diagnostic accuracy and treatment opportunities for patients with rare diseases.

Our partnership goals are focused on:

(1) Scale Up – We aspire to build consortiums at National and international level to build synergies for sustainable development. We are looking for partners who can match their resources with ours to scale our solution, gain new active users and maximize utilization of our services to a greater number of beneficiaries that may be beyond our reach at the moment.

(2) Strategic Development: We are actively seeking support to improvise the business development strategies.

(3) Technological Support: We are looking for synergies that help us integrate machine learning and AI in our existing technology while improving our interface for better user experience and engagement. 

(4) Human Resource management – We are looking for a network of doctors and genetic specialists across the globe that will be interested to utilize our solution to continue their medical practice. 

Sehat Kahani aims to develop partnerships with MIT to connect with mentors, experts and advisors to build and expand our solution by integrating AI into our existing solution  thereby gaining consumer insights, integrating predictive algorithms and supporting our research processes.

We also aspire to expand our partnerships with mobile operators across Pakistan such as Ufone, Telenor and Mobilink to broaden its reach by gaining low cost customer acquisition and market insights, access to mass communication channels including API access for SMS and IVR, access to mass payment channels for easy payment collection processes, access to retail customer touchpoints, access to technical and commercial support and gain visibility and credibility 

In addition we aspire to build partnerships with tech giants such as Google, Apple, Microsoft, Amazon and Facebook to access cloud computing, Telemonitoring through wearables, customer data acquisition and artificial intelligence resources,

We are also actively seeking large organisations and corporations such as Philip, GE healthcare, Nestle and Samsung to adapt our solution either for their employees directly or utilise it for their clients as a white label solution. This will enable us to expand our reach and customer base.