RefAid Telederma Solution

Problem:

Providing healthcare to people in low and middle income countries is challenging, especially in remote locations where there are fewer health care providers for the population and low internet connectivity for frontline workers. 

Skin diseases comprise one of the largest disease burdens worldwide affecting between 30-70% of the global population, causing significant discomfort, disfigurement and loss in quality of life. Despite this profound impact, skin diseases receive little attention, especially in rural and remote areas in low- and middle-income countries (LMIC). Indonesia, a diverse archipelago nation of more than 300 ethnic groups spread over 17,000 islands, has a population of more than 273 million inhabitants, of which one-third lives close to or below the World Bank poverty line. Where global north countries might have 2.5 - 5 (US, UK) doctors for every 1,000 people, there are only .5 doctors for every 1,000 people in Indonesia.

Despite rapid economic development in urban areas, widespread poverty and inequalities remain in rural, isolated communities, especially in NTT province (our initial pilot location). Skin diseases are common and are mostly treated by frontline health care workers working in community health centres, serving as the gatekeepers of the healthcare system. They are, however, overburdened due to high workload, competing priorities (i.e. malaria, tuberculosis, mother and child care) and often lack specific expertise in diagnosing and managing common skin diseases. Diagnostic errors and unnecessary treatments (for example with oral antibiotics or steroids) lead to increased health care expenses and may expose patients to severe side-effects. Like in other LMIC, specialized medical doctors often work in urban areas, rarely travelling to rural communities to provide specialized care. This means that a large number of Indonesians are deprived of basic skin health care services and suffer from a skin disease at some point during their lifetime.

The islands of Nusa Tenggara Timor (NTT) province in eastern Indonesia remain one of the most remote and economically underdeveloped areas of the archipelago, and are plagued with high burdens of disease (i.e. endemic malaria, tuberculosis, neglected tropical diseases, NTDs). NTT’s population of 5.3 million is spread across 43 inhabited islands and the availability, access, and quality of health services pose many challenges. Skin-related problems are a major public health concern including skin-NTDs and common skin diseases, such as pyoderma, fungal infections, filariasis, scabies, headlice, leprosy, mycetoma and yaws. The local healthcare system lacks the human resources and medical infrastructure to provide adequate services and alleviate this high burden of skin diseases.

Sumba is one of the poorest islands of NTT. This project aims to improve the access to basic, high-quality skin care to the people of west and southwest Sumba, the most densely populated part of the island.

Frontline workers in remote areas are currently forced to use applications like WhatsApp to communicate with the few doctors who have knowledge of skin diseases, an app that requires connectivity and one that is not designed for the context.

Telemedicine services are delivered over mobile devices with an internet connection. The speed of the internet is one of the key obstacles. The Internet is required for establishing a video call, uploading photos and conducting virtual visits. Low speed and disruption results in poor delivery of care and hamper the provider’s services in delivering quality services.

Our solution:

Our RefAid app for teledermatology will enable a network of frontline healthcare workers to work alongside doctors, medical students, and other health care professionals who are central to a community’s health, albeith often remotely, through the use of a mobile app that works with low and no connectivity. 

We will set up a user-friendly, sustainable teledermatology service using the RefAid app, with continuous mentorship provided by Indonesian and international dermatologists. By creating an effective platform for education, feedback, information exchange and clinical decision support, we will maximally empower the local frontline health care workers to continue to provide the best possible skin care to people, using the limited resources available. 

The project will begin as a pilot for Sumbanese people, and be performed in close collaboration with the Sumba Foundation (www.sumbafoundation.org), a private, non-profit, non-governmental organisation (NGO) which has built and staffed five medical clinics over the past decade employing 16 nurses, a midwife, a general physician and community health workers. These clinics serve an area of 45.000 inhabitants and treat around 40.000 patients per year for a variety of infectious and non-infectious diseases, 10% skin-related. The medical services provided are free of charge. After successful piloting, this project will scale to other remote parts of Indonesia and beyond.

Our impact:

Teledermatology is a valuable educational tool in the diagnosis and management of skin diseases, in particular in rural and medically underserved areas where specialized care is often not available. With appropriate infrastructure and support, teledermatology has shown to result in similar diagnostic outcomes as compared to conventional clinic-based consultations. With this project we aim to improve the basic care for people with a skin disease in rural parts of Indonesia, beginning with west and southwest Sumba.

Dermatology makes the RefAid app, with its ability to hold structured and unstructured data, upload photos and an obvious candidate for telemedicine. It can provide balance the opportunity for frontline health workers to participate in performance improvement efforts with their primary responsibility as carers by enabling them to take case histories, family histories, upload photos, receive feedback from a trusted network of professionals and peers, deliver diagnosis and treatment and then follow up with patients. It allows other healthcare professionals, outside of the small trusted network (but in the larger system of trusted partners) to provide easy access to expert opinion independent of social, economic, ethnic, and regional factors.

The web-based portal enables researchers and other professionals in the trusted network for this pilot (and other networks independently) to share and aggregate data anonymously for research purposes.

The frontline healthcare workers will be collecting the primary healthcare data through the app’s simple case management system by using simple input forms designed for dermatology and a mobile app. Most mobile apps require high speed and consistent internet access and are much more complex than required for the local context. Each case can be managed across several “advisors” from the network of peers and professionals and through case numbering the cases can be kept separate from other cases, unlike the chat conversations that are available through WhatsApp and other social apps that are often used in this context. Photos can be grouped and easily referenced by case and tags so the body of knowledge continues to grow and is always accessible to app users in a particular region and/or network. Granular roles and permissions allow network administrators to grant particular permissions to different types of healthcare workers.

The RefAid app was awarded the Padre Arrupe prize for Human Rights in
2021, and is being exhibited in the Cooper Hewitt, Smithsonian Design
Museum from June 2022 through September 2023, in the “Designing Peace”
exhibition – both evidence of the design and simple user interface that
has human centered design at its heart. In this project’s context, it is
important that the app be simple and easy to use for frontline workers,
who themselves live in rural and low or no connectivity areas.

The RefAid app is currently being used for other use cases, primarily in humanitarian contexts, in 47 countries, many of which have low and intermittent connectivity or where the end users have little or no access to internet. It was designed to work offline and when available, it sincs to the cloud to refresh and update the content when internet connectivity is re-established.

Features of app:

My Cases | All Cases

Date

Categories and tags

Search

Case number

Attach 1 or many photos

Healthcare worker (Y/N)

Offline

Geo-located

Chats with link to case

Discussion subject/topics

English and other languages

Menu

Private networks

Ability to export files

Ability to translate all 

Web portal

EHR for patient and continuity of care

Skin diseases comprise one of the largest disease burdens worldwide, they affect between 30-70% of the global population and receive little attention, especially in rural and remote areas. Our target population are those living in the rural areas of Indonesia, who have little access to internet; limited access to transport; live in areas with a general lack of health services, in particular specialty services; and who live below the poverty line, where travelling to a hospital appointment may result in a crucial loss of daily income. 

Specific objectives:

1.     To provide high-quality basic dermatological care at the primary health care level in west and southwest Sumba, and similar rural areas.

2.     To set up a user-friendly, sustainable teledermatology service.

3.     To promote skin health in the community.

4.     To connect (inter)national dermatologists with local health care providers and create a platform for knowledge exchange and mutual learning.

Initial expected outputs of the project:

1.     To organize two training sessions targeting frontline health care workers from five primary health care clinics.

2.     To set up a discussion platform connecting at least 20 local health care workers with a pool of 5-8 committed national and international dermatologists.

3.     To discuss a minimum of 60 patient case studies between health care workers and dermatologists, focused on diagnosis and clinical management.

4.     To enhance the role frontline health care workers can play in promoting healthy skin behaviours to patients and their wider communities by explaining the importance of proper hygiene, the rationale for using emollients, the impact of environmental factors on the skin, etc.

5.     To establish sustainable regional, national and international collaborations that will promote and improve medical knowledge. This project will build a strong foundation for future collaborations.

Shelley Taylor, the founder and CEO of trellyz, is a technology veteran from Silicon Valley with 25 years of experience of building large scale technology platforms and 7 years building mobile apps. She is the inventor of web User Interface language and has developed a unique approach to product design for low literacy and vulnerable populations. This is proven by her creation of RefAid, which has been used by refugees and migrants from dozens of countries for 6 years, and was recently awarded the Padre Arrupe Human Rights Award. This expertise and experience demonstrates her understanding of the people we serve, and clear ability to successfully scale this project.   

trellyz, is a US based private company, that has created a service provider platform with a mobile app for real-time, location-based discovery and communication. With a track record of helping communities, in particular migrants and refugees in the US, Europe and Morocco, our platform specializes in allowing users to filter services based on their need and demographics. The company has a history of rapidly scaling its operations through network building processes and collaboration, coordination and communication tools for service providers. Our team’s knowledge areas include software development, responsive product design, international crisis response, disaster risk reduction, protracted displacement management, and humanitarian aid management. 

Marlous Grijsen, MD, PhD, Dermatologist and Honorary Research Fellow, Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, University of Oxford; currently based in Jakarta, Indonesia. She is a global health dermatologist with a broad interest in patient care and clinical research. She received clinical training at the Leiden University Medical Centre in The Netherlands, including an elective in tropical dermatology at the Regional Dermatology Training Centre in Tanzania. She holds a PhD in Medicine from the Amsterdam University Medical Centres. 

Since 2018, Marlous has been based in Indonesia where she conducts research on leprosy and other neglected tropical skin diseases as a post-doctoral Research Fellow with the University of Oxford. She is the lead Investigator of an ongoing phase 2 randomised trial evaluating metformin as adjunctive therapy in multibacillary leprosy, funded by the Leprosy Research Initiative. In collaboration with Indonesian dermatologists, She has established a teledermatology service for health clinics in remote areas in eastern Indonesia (ILDS DermLink Grant) to improve care for common skin diseases. She is an honorary lecturer at the Faculty of Medicine, Public health and Nursing, University of Gadjah Mada in Yogyakarta, and has published more than 25 articles in international scientific journals.

We are applying to Solve to join a powerful network of leaders across industries and sectors, that will help us to build our existing network and to form relationships with potential partners, collaborators, and funders. We would also like to receive mentorship, strategic advice, monitoring and evaluation support from the community experts. This would help trellyz and its partners to improve and build on our existing solution and prepare us to scale and expand our business over time. The Solve Community can help to broadcast and spread the word about our projects, through media exposure and at their conferences, which will have a positive impact on our future work. One of the challenges our founder has had is access to investment capital partly because she is a woman of a certain age, and party because the category of Public Service and Humanitarian Supply Chain is little understood by the traditional venture community. For this reason the company has chosen to continue bootstrapping the company and relying on revenue to scale growth. The challenge can increase the number of networks the company is introduced to, therefore increasing commercial opportunities.

Our technology solution is innovative because it will address and improve access to dermatology treatment in areas where there are no other options. People living in poverty, or low income, remote areas have a greater disadvantage when accessing health care in general. A lack of connectivity compounds this difficulty for the local frontline healthcare workers. 

Currently, many doctors and organisations are using Whatsapp groups to support their clients. The advantages of this are: Convenient and effective tool to enhance patient care; Simple, reliable and quick; Secure, No third party can intercept ­ End-to-end encryption; Free. 

The disadvantages of WhatsApp massively outweigh any advantages: 

WhatsApp has messy threading of messages; no case numbers; no ability to edit; offers no possibility of multi-person communication about particular cases where the case notes and photos are kept together in an easily accessible structure for future reference and follow up; and no ability to input age, clinic, gender, complaint, body part, history, family history. There is no data structure to allow for search filters, by category of illness and/or tags of photos for knowledge management. 

Our solution was designed for low and no connectivity contexts, and for low and middle income countries, especially in rural settings. We have created the first ever, global network of service providers who can coordinate and collaborate with each other in trusted private networks, on a single platform. It provides a single source of truth and a single source of engagement. The multi-organization architecture allows people in different organizations to be in networks together in order to coordinate responses. 

Our RefAid mobile app makes it possible for frontline health workers to communicate with other local and international health professionals in a single app that was designed for easy input, case management, knowledge management and training opportunities. The app is easily configured to provide continuing improvement in the target user group. The app and platform can be used globally and configured to pilot different use cases, then scaled for maximum impact.

Our solution will have a transformational impact on the target populations – people in poor, rural areas with low and no connectivity.  It will provide access to life saving services which will support the overall well-being of communities. 

There are two fundamental components of the project that will drive its impact:

1.     Local expertise will be built in rural areas in Indonesia, to develop health care interventions that are context-specific, feasible and reliable.

2.     Ultimately, improved quality of care for patients with skin conditions will lead to more accurate diagnosis, rational use of medicines, reduced out-of-pocket expenditures, and improved well-being and quality of life. 

In 5 years the changes that may be expected include:

1.     Our project will roll out across Indonesia and other similar populations, including in African countries,  helping develop local expertise and capacity in managing skin-NTDs and common skin conditions. It will allow frontline health care workers to improve their dermatological skills and knowledge, thereby reducing the burden of disease.  Patients with a skin problem will be able to seek medical care in an earlier phase as it is more easily available and of better quality. This will help to reduce stigma, disfigurement and suffering. It will also contribute to reducing unnecessary referrals to district hospitals which are far away and difficult to access for patients. It will also reduce unnecessary prescription of potentially harmful drugs, including oral steroids and antibiotics.

2.     The project will empower frontline health care workers as they will have acquired better clinical skills, knowledge and confidence to take good diagnostic and treatment decisions for their patients, thus improving well-being and quality of life of individuals and the community at large. Ultimately, this will also contribute to reduce myths and stigma associated with skin diseases.

To measure our impact, we will track usage metrics on the trellyz service provider portal and the RefAid mobile app. The trellyz platform will collect key information about usage by health care professionals, and collect and aggregate data from the RefAid app.

In order to measure impact and progress in this project, we plan to use many Key Performance Indicators that will be designed in conjunction with our partners. These indicators will be in addition to our standard measurements:

• Number of in-country, and international dermatologists 

• Number of cases

• Number of diseases diagnosed and treated

• Number of downloads of RefAid app

• Number and location where app has been accessed

• Locations of populations served

Who will benefit?

The outcomes of the project have the potential to translate into major impacts on patient outcomes for the communities of west and southwest Sumba, and then scaled to other similar communities. The high burden of skin diseases in NTT, compounded by inadequate diagnostics and treatment practices, causes substantial morbidity, stigma, and health care costs. Currently the closest dermatologist is located in Kupang on Timor, an island 500 km east of Sumba.

Better management of high-burden diseases of key impact, such as skin diseases, will contribute to the well-being of the population and will reduce health care consumption, decrease out-of-pocket expenditure, and, ultimately, improve economical productivity and educational achievements. The beneficiaries of the project will be: 1) the frontline health care workers in rural areas, including, Sumba, who will acquire more knowledge and clinical skills and gain confidence in managing skin diseases through guided support of dermatologists by using teledermatology; 2) the people affected by a skin disease and their wider communities. 

How is change achieved?

Innovative solutions in real-world settings that address existing gaps in practice can drive local growth of knowledge and competence, and can lead to high-impact programs at scale. Our experiences in this project will be used to engage with the District Health Office, and may serve as an example how health interventions can provide direct benefit to communities. These efforts will support local health policy makers to effectively respond to unmet health needs, and improve health care delivery, in a continuously changing context. For effective dissemination, we will work with the public engagement team of the Oxford Unit in Jakarta, engaging with health professionals, policy makers and the general public. We also aim to involve Perdoski, the Indonesian Society of Dermatology Association, to enhance our impact. The impacts of this project will be amplified by collaboration between experienced Indonesian dermatologists and global health dermatologists overseas. 

What is changing?

There are two fundamental components of the project that will drive its impact:

1.     Local expertise will be built in west and southwest Sumba (and then other similar locations) to develop health care interventions that are context-specific, feasible and reliable.

2.     Ultimately, improved quality of care for patients with skin conditions will lead to more accurate diagnosis, rational use of medicines, reduced out-of-pocket expenditures, and improved well-being and quality of life. 

At the end of the project, the changes that may be expected include:

1.     Our project will develop local expertise and capacity in managing skin-NTDs and common skin conditions. It will allow frontline health care workers to improve their dermatological skills and knowledge, thereby reducing the burden of disease.  Patients with a skin problem will be able to seek medical care in an earlier phase as it is more easily available and of better quality. This will help to reduce stigma, disfigurement and suffering. It will also contribute to reducing unnecessary referrals to district hospitals which are far away and difficult to access for patients. It will also reduce unnecessary prescription of potentially harmful drugs, including oral steroids and antibiotics.

2.     The project will empower frontline health care workers as they will have acquired better clinical skills, knowledge and confidence to take good diagnostic and treatment decisions for their patients, thus improving well-being and quality of life of individuals and the community at large. Ultimately, this will also contribute to reduce myths and stigma associated with skin diseases.

Our solution consists of a web-based portal (our Content Management and Communication System) that works on all modern browsers, for service providers – government, NGOs, health care providers, etc., can gather, create and publish content into the mobile app, and collaborate and coordinate responses with each other. The mobile app is lightweight and works on Android and iOS (iPhone) phones and works offline. 

The trellyz platform is a cloud-based, Software as a Service (SaaS) model that is scalable and affordable. It consists of a web-based portal, that works on all modern browsers, for service providers, health care professionals, NGOs to create and publish content into the mobile app, and collaborate and coordinate responses with each other. The mobile app is lightweight and works on Android and iOS (iPhone) phones and works offline. The system has granular roles and permissions and allows administrators to easily create users, roles, groups. Users can be assigned multiple roles.

The mobile app, RefAid, is a geo-location based app with categories of services and educational modules that can be geo-fenced (available to people in certain locations) or made available to anyone with the app.

The teledermatology module will use the platform’s existing technology to configure a mobile app that can be used in the field, with or without connectivity. Data (i.e., patient data) will be saved to the phone and uploaded to the cloud to be available to others in the network when there is connectivity.

Frontline healthcare workers will collect the data using the RefAid mobile app. They will be incentivized to do this because they will acquire more knowledge and clinical skills and gain confidence in managing skin diseases through guided support of dermatologists and by using teledermatology. It will develop local expertise and capacity in managing skin-NTDs and common skin conditions. The project and support of technology will empower frontline health care workers as they will have acquired better clinical skills, knowledge and confidence to take good diagnostic and treatment decisions for their patients, thus improving well-being and quality of life of individuals and the community at large.  

All participating dermatologists are experienced in managing tropical skin diseases, have a passion for teaching and a keen interest working in underserved environments.

The teledermatology service can be sustained and scaled up by involving a pool of in-country, and international dermatologists that may shift over time.

trellyz was founded by a black American female, with native American heritage and the management team of the company is majority female. We use this lens and lived experience to encourage diversity and inclusion, in hopes of creating greater equality in all of our projects and partner relationships. Through years of experience with RefAid in regions where certain minority groups face prosecution, the trellyz team has become acutely aware, and highly practiced, in taking precautions that protect vulnerable populations and promote diversity and equity. 

trellyz is careful to select locally led partner organizations that not only have expertise in this project context, but also have strong principles and ethical practices regarding inclusion. We are focused and committed to supporting the decisions made by our partners in our chosen contacts, as they are situated on the ground working directly with our target populations. 

The baseline research and work we will conduct during the pilot stage of this project, and the quarterly evaluation and monitoring, will take into account the voices of those who are most vulnerable. This will help us to improve the results and impact through the design, implementation and adaptation of RefAid, to ensure that their needs are addressed appropriately.

Our software is available through a Software as a Services (SaaS) model. We offer several products that we consider part of the Public Service and Humanitarian Supply Chain Management, iincluding Services Mapping, Emergency and Incident Management, a Logistics Hub, Network Communication and Mobile apps, including RefAid, that are offered as a tool to service providers for their own communication and service management or to the public.

We enable service providers to collect (ie in this project) and disseminate information about their services (in other contexts), both face-to-face and remotely through the RefAid mobile app. Service providers use our web-based Content and Communication Management platform to list, map and manage their services. The collaboration, coordination and communication tools available in the mobile app and in the web portal enable them to connect with each other, and to other organizations in the network. 

trellyz has developed a network building business model that is aligned with the goals of the humanitarian sector, so has a unique pricing which allows for unlimited users, whether administrative, organizations, or end users. We typically license the platform to a key partner who’s responsible for onboarding other organizations offering services in a particular context, ie. healthcare professionals, refugee communities, women and children, etc. The license is usually paid for by a funder. This is a flat fee and trellyz provides network building support, training, and help with onboarding. 

Our software enables our customers to respond to crisis effectively, to coordinate responses, and to communicate with others addressing similar challenges. Our multi-enterprise structure with integrated features that work across all products, make the platform critical to those involved in helping vulnerable people.

As a technology solution provider, we have two sources of funding – in partnership with lead NGOs where we are their technology partner and they have source funding to pay our license fee for our software, and direct grants from government and NGO funding agencies. We license our software and the pricing is based on the context, country and whether it is for use by one organization or all within a context (disaster, humanitarian etc). 

Our software license fees are increasingly being seen by donors as a way of providing governance and transparency among the NGOs who are receiving funding to provide services. This adds to the financial sustainability because the fees are seen as a tiny percentage of large projects in order to facilitate greater effectiveness and impact.

trellyz is a bootstrapped company that had some angel investment several years ago. It is generating revenue, and a modest profit. We currently have annually recurring revenue contracts that cover our operations. Our revenues are roughly equally divided between contracts with government customers in the US for various use cases including emergency management and our standard services mapping module.

A few examples of our paying customers in the US include MTC (Metropolitan Transportation Commission, with 31 transit agencies and 9 San Francisco Bay Area county Emergency Operations Centers), King County (Washington State) for various departments and their nonprofit contractors for use in service mapping. Examples of our paying customers in Africa, we have a project in Morocco and Spain, funded by the European Union, to help several different consortia to map services and roll out the RefAid app to migrants arriving in the country, and/or transiting to other countries.