The MOTIF project comprised the development, implementation and the evaluation of a mobile phone-based intervention using voice messages(Verboice) to support post-abortion family planning.
The project uses an Interactive Voice Response (IVR) system – Verboice to educate garment and footwear workers on issues of importance to them. The format is a phone-in quiz where workers answer questions related to salary and allowances, occupational health and safety, and personal health. The caller chooses one topic on which they would like to be quizzed and is then asked a series of three questions.
To answer the request of Family Health International (FHI) to promote earlier tuberculosis case detection, iLab Southeast Asia (iLab SEA), located in Phnom Penh, is designing a step by step TB Lab Result Alert System. It aims to offer early detection of tuberculosis in rural and remote villages in Kampong Cham province and to accelerate patient access to care. Leveraging mobile technology (SMS), this system is involved in the containment of tuberculosis.
Using Verboice, Marie Stopes International Cambodia is piloting a project called Mobile Technology for Improved Family Planning services. MOTIF is a pilot project focused on developing, testing and evaluating a mobile phone-based intervention to support the use of post-abortion contraception. The goal of the project is to answer the question: does a post-abortion family planning (PAFP) mobile phone-based intervention increase use of contraception in Cambodia? Read more »
Through funding from the SPIDER network, InSTEDD’s iLab Southeast Asia began the project to assist the Women’s Media Centre (WMC), Open Institute (OI) and other partners in Cambodia in implementing a series of mobile-based information lines, scheduling advice systems and question boxes for women and children that complement and extend the reach of their current mass media projects. Read more »
Building on the success of the digital mapping project in Brazil, our iLab Latin America applied the same concept to problem solving in Haiti. While our work in Brazil revolved around the surveying of potential social and environmental dangers, the work in Haiti focused on detecting risk factors associated with HIV/AIDS, sexually transmitted diseases, sexual and reproductive health, and gender violence. Read more »
Voice is the most universal and inclusive means of communication, and it’s an ideal way to expand the reach and impact of health and humanitarian technologies. In September 2012, with funding from Spider (The Swedish Program for ICT in Developing Regions), the InSTEDD iLab Southeast Asia introduced and extended Verboice, an open-source tool which specializes in using interactive voice response (IVR) to support health, safety and sustainable development work. Verboice projects can start small and scale up, making it possible to improve lives even in communities previously closed off by literacy and technological barriers. Read more »
InSTEDD and its partners at Kijani, Population Council, and AMPATH-Kenya are working to design, develop, implement, and evaluate information and communication technologies to improve TB care among people living with HIV. As an initial phase of this project, our team is focused on a TB care reminder system. This reminder system uses information from patient electronic medical records (OpenMRS) to give medical providers the right reminders at the right time about what they can do during each patient visit to improve TB diagnosis and prevention among their patients. Read more »
While Myanmar is not well known for their technological capacity, they are still responsible for putting on the largest BarCamp events in history. People come from all over the world to participate and I was happy to see lots of international participants (much more than when I was last here in 2011) as well as participants from high tech companies like Google and Firefox. Having such a diverse community allowed me to connect with local Burmese startups as well as both local and international developers and BarCampers.
As with all of our activities, we begin with an open mind and proceed with an agile and human centered design process. We believe the most effective programs and technologies are flexible and iterative and are built on joint participation of the communities they are meant to serve. Whether we’re building tools or creating an internship program, our experience has taught us there there is not a one-size-fits-all model for success. Read more »
Resource Map is an application that allows users to geographically map their resources so that they are always aware of what they have currently and what they need more of. Users can update, query, receive alerts from the system and more simply by sending an SMS or updating the website online.
|Click to go to the Resource Map Website: http://resourcemap.instedd.org/|
In the wake of the New Year, we took some time to look back on the dynamic journey we took in 2012. Our activities were characterized by contributions to key global health efforts, engagement in several new projects and the development of important strategic partnerships. Our iLab Southeast Asia and iLab Latin America continued to develop their teams and capabilities as a regional leader for collaborative problem solving. We are delighted to share some of our remarkable achievements of 2012. Read more »
Working in the world of public health exposes us to a number of potentially life threatening scenarios. InSTEDD’s tools are designed to work in high stakes environments where people need to quickly share information, coordinate resources, and align their efforts towards the common goal of ensuring the public’s health and safety. In an effort to create a fun and interactive environment for people to learn how our tools work and how significantly they can improve communications, we teamed up with UC Berkeley to create a public health simulation – using Zombies! Read more »
In October of 2011, InSTEDD has been working on Baby Monitor, which is a collaborative project focused on improved prenatal and postpartum screening for mothers and infants in resource-poor environments. Baby Monitor is a tool we created using our interactive voice response technology application, Verboice, in order to bring clinical screening directly to women in the critical period before and after birth to detect complications and take action.
Earlier this year, I had the privilege of sitting down with Eric Green, the man who led the Baby Monitor project. Eric eloquently explained how the project began, how it works, what value is being created and what social impact we are striving to achieve. Read more »
In a previous post, we explored the potential for linking rural communities to formal health systems by increasing the effectiveness of community health workers (CHWs) through the use of mobile communication technologies. In this post, we will describe some of the open source tools developed by InSTEDD to fill communication gaps encountered commonly in the field. Read more »
A good health system delivers quality services to all people, when and where they need them. The exact configuration of services varies from country to country, but in all cases requires a robust financing mechanism; a well-trained and adequately paid workforce; reliable information on which to base decisions and policies; well maintained facilities and logistics to deliver quality medicines and technologies. Read more »
According to the World Bank, around 75% of the world’s population has access to a mobile phone. As you can see from the image below, this number is significantly increasing over time, especially in developing world countries, such as Cambodia.
At InSTEDD, we see the advancement of the mobile phone as a growing opportunity to improve information sharing and collaboration to improve health, safety and sustainable development. One of the ways we’ve taken advantage of this opportunity is through our open source Resource Map tool.
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We are proud that the Baby Monitor project from the iLab Latin America has been selected as a finalist for be one of the finalist for the “She Will Innovate Technology Solutions Enriching the Lives of Girls” challenge! In order for us to win we need your vote so that we can win the $10,000 prize! Read more »
We are passionate about using data to surface meaningful insights and improve health outcomes at the community level. Data from disparate systems can be used in an interoperable and interactive way to empower health workers and increase our understanding of local, regional and global disease dynamics. Read more »
Imagine that you’re on your way to work one day when a disaster strikes unexpectedly. […] Read more »
I first learned about InSTEDD around end of 2008 when I was working with a social enterprise in Cambodia called Digital Divide Data. InSTEDD’s CTO, Eduardo Jezierski along with a consultant from the Argentina based Clarius Consulting company, named… Read more »
Lao PDR is a country with a population of around 6 million people. Most of these people live in hilly terrain and dense forests which makes them particularly vulnerable to Malaria carrying mosquitoes. It is estimated that more than half of the population is at risk for contracting the disease.
image: WHO World Malaria Report 2011 – http://www.who.int/malaria/publications/country-profiles/profile_lao_en.pdf
InSTEDD iLab Latin America: Working to Mitigate Social and Environmental Risks in Rio de Janeiro Part 1
We are thrilled to be able to share with you some of the work that the […] Read more »
A Missive from Brooklyn, 2002 In 2002, I got my first job out of college as […] Read more »
FROM TED PRIZE TO COLLABORATION NETWORK Our work in Southeast Asia began in 2007, following Larry […] Read more »
mHealth for HIV Treatment & Prevention: International AIDS Conference 2012 At InSTEDD, we’ve been busy […] Read more »
Last week, over 24,000 delegates from around the world gathered in Washington, DC for the 19th International AIDS Conference. It seemed like everyone was there: President Bill Clinton, U.S. Secretary of Health and Human Services Kathleen Sebelius, South African Deputy President Kgalema Motlanthe, HRH Mette-Marit, Crown Princess of Norway, World Bank President Jim Yong Kim, Bill Gates, Elton John, Whoopi Goldberg…
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The Malaria Day Zero Alert System had the first pilot test in Cambodia on August 1. We are trying to use this new system instead of relying only on the paper based report because we know it has the potential to make reporting more accurate, faster and easier than the current paper based reporting system.
When people see the yellow sign with black exclamation make on the middle of the sign, they know that they have to pay attention of their driving. Also with company logos, they usually represent what the company is about. For example, if a company is working in agriculture, their logo may be designed with green colors and some agriculture products they serve.
If you buy into the idea that information about your body is ‘owned’ by you, then it’s obvious you should get to have a say about what happens with that data once it leaves your body. Unfortunately, today there is no clear and easy way to express how you want people to use your data. In most cases, you never even get asked.
As a result I see many eHealth project implementers making cavalier decisions about data management that impact the rights and privacy of populations, patients and doctors alike. People grab, share, analyze information they may not have the rights to, sometimes even by accident. There are so many incentives to produce and move data freely: folks could use the data for the promise of big data analysis, research publications, commercial product improvement, for the sakes of efficiency, medical research, marketing, writing grants, or operations analysis. Violating rights and expectations is especially easy as these eHealth projects tend to have a bunch of players involved, each one with their own language, objectives and culture.
Unfortunately, there is a lack of frameworks and common language in which to have a discussion about rights to share and use health data. Academics do IRB reviews, but rarely understand licensing terms. Doctors use eHealth systems but are not information specialists, but typically don’t go beyond clinical and public health use. Private systems may or may not have end user license agreements (EULAs), they impose a one-size-fits-all policy, and nobody reads the EULAs anyway because they are complicated, and each one so is different. Doctors in the USA mention HIPAA, and folks from other countries snicker. Governments roll out an eHealth HIV project and the data ends up in some intern’s laptop in California because he happened to help with the database system. And as you see this information flow rarely involves the consent and opt-in of the population and health providers in whom the population places their trust.
Imagine this situation: a mom shows up at a clinic and gets a diagnostic for her child. Who has which rights on the data? What about the kid? Her mom? What about the doctor who takes the test, the manufacturer of the diagnostics machine, the clinic where the doctor works, the NGO that implemented the diagnostic program, the funder that funded the NGO and bought the diagnostic machine, the government of the country, WHO?
I was recently a part of the annual AAAS Annual Meeting on a panel about Surveillance. It was a good chance to catch up with Nigel Collier from Biocaster and get to hear some poignant questions from Vint Cerf, one of the ‘fathers of the internet’. We had representatives of all sorts of surveillance work from anti-terrorism to meme propagation to infectious disease tracking; and there I presented a sketch of an idea:
What if we created a simple licensing framework that made it clear what rights and constraints go with different bits of your health data as it gets stored, aggregated, and analyzed?
If Creative Commons licensing helps a wide sharing of creative work under predictable terms that respect the intent of the creators; could a “Health Commons” do the same thing for health data? What can we learn from the evolution of sharing of information on the web and apply it to this critical space?
I would like to one day be able to share information about my health on some mobile app, a wellness site, or a diagnostic procedure, and specify that I am sharing it with the following restrictions:
Sometimes I would say it is OK to link the data to my other records, sometimes not: it all depends on the context and what it is that I am sharing. The important thing is that I am in control of data about my health.
Or, conversely, if I am participating in some survey, taking a diagnostic, or going to a new health care provider I would like to know if my data is going to be used with a forced license on it, so I can make an informed decision about whether to actually participate or not.
How would it work?
The idea roughly sketched would be to:
- Treat personal information as data covered under copyright law, with the patient/originator as the original copyright holder.
- Build a licensing scheme that grants explicit rights and restrictions to receivers of that data.
- Make sure the rights and restrictions are termed right so that re-licensing and aggregation have clear and simple rules.
- Embed licensing options into all relevant diagnostic and medical record platforms, as well as wellness websites, social networking sites, and so on.
- Communicate & advocate the framework especially building conscience in the public.
I don’t know if the license example I invented for the example above (linking to other personal information, aggregating, and use for health, science, and commerce) are ‘the right ones’. I would love to hear more ideas for the sort of constraints and freedoms a simple license would allow.
Maybe other terms would be more important. Are there levels of anonymization I could specify for my data in aggregate form? Are there clauses for natural disasters or crisis that would allow me to temporarily bypass privacy concerns in order to help me reunite with my family? The nice thing about the model is that it provides a framework in which to resolve these questions.
The genius of Creative Commons was to choose a few simple rules that would be easy to understand for many, instead of trying to make it a comprehensive license for all cases and preferences; a Health Commons would have to emulate that approach. Each time you see the Creative Commons icon it carries beneath it a smart and legally sound set of terms and licenses.
If anyone feels inclined to develop this further please let me know. The idea needs work from copyright attorneys, IP wonks, IRB data geeks, healthcare providers – and most importantly, anyone in the general population who would like to have a tool like this. I am especially interested in the licensing framework required for safe sharing of personal health information. I have seen “Health Commons” used to describe a knowledge commons with intellectual property such as genetic sequences, but I think much more focus is needed on the incoming tidal wave of integrated personal data from electronic records, sensors, and surveillance.
I think especially large funders and companies who are at the intersection of humanitarian field work and scientific investments need to improve their frameworks to make sure their programs have an ethical approach to protecting rights of their beneficiaries. In the meantime, maybe they should get into the mindset that they are just storing borrowed copyrighted information…
Please leave comments if you have an opinion on the topic.
We use Creative Commons extensively in our work at InSTEDD. Most of our presentations are explicitly licensed under CC BY-NC-SA 3.0 (Attribution, Noncommercial, Share Alike), as is the material of this blog.
Like InSTEDD, Creative Commons is a non-profit organization that can always use your support: consider donating to them here.
At InSTEDD right now we are involved on a wide spectrum of projects. Many of our projects are short and grassroots-driven, such as our recent work with UNICEF using aerial photography to map environmental vulnerabilities in the slums of Rio de Janiero (see blog from our iLab Latin America: Part 1 and Part 2). In addition, many of our projects are longer and more complex as we help Ministries of Health or large NGOs lay the technology foundation that helps them meet better serve their country over the long run, such as our work in Cambodia and Rwanda.
These latter projects require more patience to see the impact and are sometimes more difficult to work on due to the time lines and the large number of stakeholders and interests involved. But, when done right, the long-term impact can be transformational.
We are lucky to be involved with Jembi, Regenstrief Institute and others on implementing such a project in Rwanda, under the leadership of Dr. Richard Gakuba, who works for the Ministry of Health as the National eHealth Coordinator. Dr. Gakuba is leading the charge transforming Rwanda’s Health Information System. A big part of this modernization is the implementation of shared health records, terminology services, and facility and provider registries. When this phase of the project is done, Rwanda will have a variety of independent, but interoperating, web services that implement these capabilities. It may sound like a 2002 buzzword to call it a “fabric”, but it evokes the right image: a supporting net of independent but inter-woven services.
Having a fabric of services makes a lot of sense in this context, starting with the impact of this architecture pattern on human and organizational dynamics. Distributing the ownership, management and maintenance of different areas of data is appropriate when the organization itself is made of different departments with different workflows, incentives, and management styles. Centralizing all these processes and information into a monolithic block would cause a collapse as the only entity able to change things would rapidly become a bottleneck. Just the provisioning and maintenance of one big system can be an insurmountable obstacle. Modularity allows piecemeal evolution.
Having a “fabric” of services has many advantages:
Creating an Ecosystem – services and their data can get used by others to create new “value-add services”. For example, a facility registry could be extended with a call-in system to let immigrants get directions to nearby clinic in their own dialects. Enabling these value-add services (including mashups and client apps) allows the ecosystem of users (the general population, the local NGOs, the international ICT community, national and international private sector) to act like a gap-finder for better health services and businesses.
Potential for Big Data – Services provide a quantum leap over the traditional approach of keeping excel spreadsheets, access databases, and ad-hoc CSVs for research and retrospective data analysis. Data can be stored and versioned appropriately therefore simplifying future retrospective analysis. Taking advantage of these datasets comes with many challenges, however. For example, most countries do not have or enforce a framework where people opt-in to having their data stored, shared, and/or analyzed for research or commercial purposes. Rwanda has taken what I consider to be a great stance: All data that will be kept centrally about individuals has to be approved ‘column by column’ (using a relational metaphor). The data can be used only with scientific journal backed evidence that the information can be used to improve health outcomes within an actual project/program to do so. Notice this may turn some big data fans pale (“What, you are not saving everything centrally and then figuring out what to do with it?”), but I think it is a smarter place to start.
Steps to Open Government - While modest, the decision to have public data available as web services on the internet can be a milestone towards “open gov“. Opening up government data increases accountability, trust, and feedback loops. Many governments would probably prefer to pay lip service to open data principles rather than embrace them; but there are so many benefits to doing so in the health sector that it may be a great place to start.
What are the services that could exist in such a fabric? The theoretical list runs long but here are some examples of the services we are dealing with in the real world:
- Facility Registry: A service to keep track of facilities, their admin information, the health services they provide, and data about their catchment population.
- Vital Registration: Service to keep track of births, deaths and Health ID management for the population (Note that a different ID assignment authority is needed: the United State’s practice of using a unified social security number for financial ID, health ID and immigration purposes is considered ‘bad practice’ by modern standards, and I am happy where we are working with people who are staying away from unified IDs).
- Shared Health Record: Services that keep track of individual people’s health data over time.
- Provider Registry: A service that tracks the institutions and individuals who are licensed to work in the health system. This can be enormously important for HR, education, and performance-based-financing work. Having a current provider registry also is a foundation for maintaining privacy.
- Terminology Registry: Services that collect, map and standardize the meaning of different words and fields. This makes it easier to see if the “blood pressure” field used in system A can be equated to “blood pressure” in system B (If the blood pressure is taken in different parts of the body in different conditions, the data semantics are different, regardless of the shared label).
- mHealth SMS, Voice and USSD gateway: Having these help consolidate agreements with operators & aggregators and provide a simpler way to manage collections of mHealth initiatives.
Of course, having many services makes it necessary to have better federated authentication/authorization capabilities (unless you want users to forget 10 passwords instead of only one) and to have some external services that act as controllers/orchestrators for complex multi-step operations (for example, someone dying or moving may trigger a cascade of operations on all the services above).
To be good citizens of the fabric, the services have to play well with each other. Here are some expectations:
- Master vs Reference Data: Each service has clear ownership of master data versus what is reference, externally managed data which may be continuously updated from some external system.
- Accommodating Dynamic Changes: Services-especially the registries and shared health record — have to accommodate dynamic changes in information schemas and uses over time; and provide a good long-term versioning strategy.
- Updates and Queries: Services must expose a REST API or equivalent endpoints for state updates and queries, as well as expose a stream-of-events API (e.g. Atom/RSS feeds with some pingback/notification mechanism to allow other services to adjust themselves to the changes in real time or in batch mode).
- Compatibility: Services share compatible approaches to authentication/authorization/auditing and other crosscutting aspects.
For the work we are doing, Rwanda has chosen use cases in maternal-child health as the ‘red thread’ that will drive priorities in the project. Part of their well thought out strategy is to keep governance over the technology but rely on local and international partners to help build the technology instead of having an in-house dev shop within the Ministry of health.
InSTEDD contributes the Facility Registry
Rwanda is currently evaluating good starting points for the services discussed above. For the Facility Registry services, Rwanda is evaluating Resource Map, an InSTEDD tool that was originally developed in 2009 by our iLab Southeast Asia.
Resource Map evolved to help people make better use of their data. Data that isn’t used is stale, and stale data isn’t used. We have seen lots of projects and facilities collect and forget about the data as soon as its reliability became suspect. Tens of thousands of dollars per country are spent every year on collecting information that could have simply received minor updates from previous versions.
Originally, we called the tool ‘Dynamic Resource Map’ to emphasize the dynamic nature of the tool. We wanted to ensure that the tool supported making the data operational, not obsolete. Some key aspects of the tool include the ability to define your own layers, with ‘points’ or resources or reports on those layers (which are shown as different fields). The tool also has query and update features that can be done through SMS and smartphones (using Open Data Kit). The tool is designed to manage a resource database that happens to have a ‘geo’ component to it which adds critical behaviors on top of the typical alternatives of having semantic-less spreadsheets or generic GIS tools.
A real-world example of the value of the tool is its ability to track stocks of supplies for Malaria treatment at the health center level. The simplicity of being able to just text in your current stock and have it automatically trigger an alert to the folks in the capital that will send you more medicines is invaluable.
Seeing the individual or clustered facilities with your own icons or alerts based on your rules can give you a real-time operational picture that otherwise would be impossible to visualize. Other uses include tracking of information about water quality measured periodically at different pumps, and also it is useful for project tracking and monitoring & evaluation (M&E) data gathering.
Data that isn’t used is stale, and stale data isn’t used.
As with any InSTEDD tool since 2007, we took the perspective of providing a cloud ‘product’ that is generic and usable worldwide, that each user can configure to their needs. For example, folks can add their own fields, manage their own user permissions, and have total freedom to import and export their own data, etc. And with the APIs and import/export features, people can move the data to spreadsheets or to more specific tools like ArcGIS or GeoCommons as needed.
As we work with the Rwanda Ministry of Health on their eHealth foundation, our Resource Map tool will evolve to incorporate the experiences and feedback from the people using the tools. We will use their stories to maximize the benefit to the global eHealth/ICT4D community as we develop new versions over the upcoming months. In addition, we have started engaging with other amazing implementation partners so that this work can be incorporated into the shared commons of technology. We are excited about the changes that this initiative is already bringing in the front of APIs as well.
Back to Rwanda
He warns about making implementations of health programs revolve around evaluations (instead of make evaluations revolve around implementations) and gives an idea of the progress Rwanda has made in Maternal/Child Health, and how eHealth can help further MDG goals and health delivery.
He also reinforces the importance of starting small and working directly with your users as much as possible. Dr. Gakuba also recommends deploying simpler, smaller parts in a sequence versus going after large, complex technologies from the onset. Fortunately InSTEDD’s services-based approach is a perfect fit for that strategy, which allows the Ministry of Health to stay focused on priorities and gives a more iterative, agile frame to the project.
With social impact being our primary goal, we are proud to share our powerful modern tool belt with the rest of the world. InSTEDD’s suite of open source tools is a collection of technologies that have been used to support our focus areas of maternal/child health, infectious diseases, emergency management and local innovation/leadership.
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