MobileActive.org

Mohini Bhavsar was a summer 2010 research intern at MobileActive.org. Shortly after, she volunteered with TulaSalud in Guatemala to observe what it takes to implement and scale a mobile health program.

Innovation in mobile health is not quite as widespread in Latin America as it is in Africa and Asia. Of the m-health programs in Latin America, little sharing of region-specific strategies has taken place.

TulaSalud is an organization based in Guatemala that is leveraging ICT -- specifically mobile phones -- to improve the delivery of health care services for indigenous communities. Through this case study, we hope to share some of what TulaSalud has learned over the years. 

TulaSalud partners with the Ministry of Health and the Cobán School of Nursing and receives support from the Tula Foundation based in Canada. The organization's vision is to use ICT and mobile technology to reduce maternal and infant mortality and to monitor disease outbreaks in the remote highlands of Alta Verapaz. Using mobile phones, TulaSalud has been able to improve the flow of information between health professionals based in hospitals and community health workers (CHWs) in remote villages.

Alta Verapaz has the largest rural and poor indigenous population in the region with limited access to health care services. In an area with one million inhabitants, 93% are indigenous and share the highest burden of maternal mortality.

TulaSalud's community health workers, known as tele-facilitadores, use mobile phones to:

1. Seek remote diagnostic and decision-making support from physicians in urban centers
2. Receive calls from people in their communities seeking care
3. Organize logistics and transportation for emergencies
4. Refer patients to hospitals and follow-up with nurses at hospitals to ensure their referred patients received care

Using mobile phones, TulaSalud is able to:

1. Monitor disease outbreaks in real-time based on the data aggregated from patient consultations through EpiSurveyor
2. Send text message alerts and reminders to tele-facilitadores using FrontlineSMS
3. Evaluate the productivity of tele-facilitadores working in the field
4. Deliver remote health training via mobile-based audio conferencing

Over five weeks, I observed the different ways ICT and mobile phones have been implemented by TulaSalud at the primary, secondary, and tertiary levels of care. This is a reflection of what I learned from TulaSalud's team of administrators, doctors, technicians, and consultants, including the field monitors and tele-facilitadores themselves.

Better Information Flow Means Improved Emergency Preparedness

In 2009, TulaSalud distributed mobile phones to 60 community health workers.  With the phones, the CHWs could call a doctor based in the city of Coban for a second opinion if they were unsure about making a diagnosis or referral. The tele-facilitadores also started to collect information about each patient consultation using Datadyne's EpiSurveyor. The aim was to improve coverage of primary health care services in seven rural municipalities and to better serve 175,000 indigenous peoples.

It is easier to act when the data is decentralized and stays in the community

EpiSurveyor surveys were based on mandatory Health Information Management System (Sistema de Informacion Gerencial en Salud or SIGSA) forms required by the Ministry of Health. These are paper-based forms to be completed for every patient consultation and hospital referral. Once the data is collected in the community, it is sent to the district to be digitized. Data from several districts are consolidated and analyzed at the area level. If suspicious disease signs are identified at this stage, directives for risk management need to come from the Ministry of Health in Guatemala City. (That is, if any analysis is conducted at all).

The above process can take up to 40 days, which is often 40 days too late to take preventive steps in the community. Collecting and digitizing the information in the community via EpiSurveyor allows for epidemiologists to assess the data as soon as it comes in. This information has enabled TulaSalud to take action within 3 to 4 days to prevent the spread of disease. For example, when cases of meningitis and measles are identified, the lead doctor can immediately inform higher level health officials. On the flip side, without TulaSalud's support, it is likely that the diagnoses could be made incorrectly in the village, or a correctly identified case may not be managed in a timely way.

In the pilot, tele-facilitadores entered key pieces of data into the EpiSurveyor form including the patient's name, an eight-digit code representing geographic location, sex, age, and a code representing the clinical impression and type of consultation (such as first visit, re-consultation or emergency). For a pregnant patient, the form automatically branches to ask the expected date of delivery. The CHWs can also access a built-in calculator to predict this date based on the women's last menstrual cycle. All health workers need to record which doctor was consulted if they sought remote diagnostic support. And for referrals, the worker must select the health centers and hospitals where the patient was sent to receive further attention.

Meanwhile, physicians and epidemiologists monitor the patient cases as they come through EpiSurveyor's web-based database and watch for descriptions that match, for example, malaria or dengue fever. Data collected by the CHWs was instrumental in the early detection of meningitis, rabies, and H1N1.

Mobile data collection helps identify high-risk pregnancies

Based on the clinical impressions noted by the tele-facilitadores, doctors are also able to identify high-risk pregnancies and alert CHWs to closely monitor these women. Fifteen days before the expected date of delivery, the physician sends a text message using FrontlineSMS (via Clickatell) to remind the workers to make home visits.

By 2010, over 19,000 consultations were made and more than 400 patients were referred to health centers. Of these referrals, 156 cases were identified as being high-risk pregnancies and 83 women were at risk of dying. Currently, TulaSalud's database has over 38,000 patient consultations, and the database is growing.

The 60 tele-facilitadores currently cover 22% of the rural regions of Alta Verapaz. Incrementally, over the next five years, TulaSalud hopes to expand the program to include 330 CHWs equipped with mobile phones. The NGO believes this expansion could have an impact on health outcomes by drastically reducing rates of maternal and infant mortality and improving reaction time for disease outbreaks.

Developing an ICT infrastructure that links primary and secondary level care

Because supplies, equipment, and personnel are limited, knowing the details of a patient referral in advance can improve hospital preparedness and timeliness. Several tele-medicine modules, staffed by nurses, have been set up by TulaSalud in hospitals around Alta Verapaz. Before sending a patient from the village, CHWs will call the nurses at these modules to explain the patient's condition. A few days later, health workers follow-up by calling the nurses.
 
The above referral and follow-up process is carried out via a phone call -- it has not yet been systematically automated via text-message nor is it linked to the patient data that is originally collected using EpiSurveyor. Evidently, the referral and follow-up loop needs to be developed and TulaSalud is currently exploring ways to do so.

Mobile conferencing brings health training directly into communities

TulaSalud also hosts capacity-building conferences using the mobile phones. In the local Mayan languages of Pocomchí or Q'eqchi, TulaSalud trains health workers and communities about natural medicines, nutrition, recognition of high-risk pregnancies, post-partum care, respiratory infections, and HIV/AIDS. Each month, tele-facilitadores link the mobile phone provided by TulaSalud to a conferencing unit that is equipped with speakers and a microphone for distance training. Members of the community also gather around to participate by asking questions of the facilitators at the office.

Phoenix Duet Executive devices are connected to the mobile phones and used as the speaker and microphone. Premiere Global is the conferencing service provider.

What the Tele-facilitadores Had to Say

We went into two communities to meet with tele-facilitadores to learn more about how they use the phones. We first met Marisol, a trained midwife who had joined TulaSalud only six months ago. She is responsible for working in six communities and serves about 2,500 people. We then caught up with José, an experienced health worker entering his second year working with TulaSalud. He serves six communities and about 4,500 people.

We made several major observations:

• Tele-facilitadores have different systems of connecting with community members using the mobile phones. Some have distributed their mobile number widely and freely; others have not.
• Documentation methods vary, and may involve transcribing comments into notebooks before entering into the mobile form. Tele-facilitadores may prefer paper records for clinical history and as proof of their productivity. The value in digitizing at point-of-care is not recognized.
• Entering data into the mobile forms is quick and easy. Learnability is not an issue.
• Preference for question type (multiple choice or free form) may differ according to the level of Spanish proficiency.
• Unreliable signal connectivity is a barrier to sending data. Electricity black-outs force tele-facilitadores to ration battery life for emergencies.

How do people contact you to seek care?

Marisol has given her mobile phone number to the people in all six communities she services, and they contact her directly in case of emergencies. People from nearby communities either come to her house to receive primary care or she makes home visits. When Marisol receives a call at night, she waits for either a relative of the patient or one of the village leaders to accompany her.

José employs a different system. Unlike Marisol, he decided against giving out his number to everyone in the community. Instead, only the village leaders can contact him if a family member approaches with a health issue. José is more vigilant about carrying around a phone and is suspicious of phone calls he receives from unrecognized sources.

How do you document information regarding each consultation?

All the tele-facilitadores fill out both the mandatory government-issued paper form and the TulaSalud EpiSurveyor form. But, their documentation methods vary. Marisol transcribes everything on the mandated SIGSA form by hand during the patient consultation and then returns home to enter the data into EpiSurveyor.

José likes to carry a notebook with him when he makes his health visits. When he comes home, he transcribes the data to the SIGSA paper form and then enters the information into EpiSurveyor.

From Tula staff, we heard of another telefacilitadora who delegates the task of entering details of patient consultations into EpiSurveyor to his son. The father feels less comfortable with technology and prefers to document his work on paper and focus on the patients.

We often talk about streamlining workflows with technology. But we observed that there are systems and methods for documentation with which CHWs are already comfortable, and which probably won't change for some time. Even though the workers appear repetitive in transcribing from notebooks to government forms to mobiles, they themselves do not perceive this to be "inefficient." Entering data on the mobile forms was never thought of as adding to their work, but as a part of doing their job -- so they do it.

Tele-facilitadora demonstrating EpiSurveyor

How much time does it take to enter the patient information into the EpiSurveyor forms?

The electronic SIGSA form contains 15 questions. When Marisol first started in May 2010, it used to take her 3 hours to enter data for 20 patient consultations. Now, she speeds through 20 forms in 10 minutes. It takes José half an hour to enter 10 patient forms. Some of the forms are free-form and others are multiple choice.

Marisol mentioned she preferred writing things out instead of multiple choice. With multiple choice questions, she feels nervous about selecting the wrong option. José showed a preference for multiple choice.

Preference for different question types could be related to the varying levels of Spanish proficiency and education among the tele-faciliatadores. In fact, José went on to recommend that the list of diagnostic codes and respective descriptions should be translated to the local Mayan language, as currently, it is only available in Spanish. Our interview with him was primarily carried out in Q'eqchi.

What do you do when there are signal connectivity issues?

Marisol explained she has trouble getting a good signal in three of her communities. When working there, she waits to find a better connectivity to send the data. Although she is really good about sending her data on time, sometimes she has to save power to ensure she has enough battery on her phone to receive emergency calls or make calls to arrange for an ambulance. In these cases, she does not send the data and waits until the electricity is working again. At times, José experiences connectivity challenges too. He may have to walk about 20-30 minutes away from his house to catch sufficient signal to send his data on time.

What benefits have you and your community gained as a community health worker with access to a mobile phone?

When she didn't have the phone, Marisol would always refer her patients to hospitals if she was unsure of how to diagnose them. But now she is able to consult with a doctor beforehand. In the long run, having an ability to consult with doctors and make good referrals saves time and money for an already strained system. The simple conditions that can be treated in the community stay in the community.

Marisol showed a preference for the paper forms opposed to the EpiSurveyor forms because, once she sends in the data for each patient consultation, she is not able to find those entries easily and thus, loses the ability to review a patient's clinical history. If a patient comes back for a second consultation, she refers to the paper SIGSA form to verify the treatment she gave previously and to decide what she will do next.

José understood that mobile data collection has reduced reporting delays. He explained that the SIGSA paper forms take almost a month to be transcribed, assessed, and sent to the Ministry before any action takes place at the community level. Aside from this, he mostly appreciated the ability to connect with doctors in Cobán, in case he needed diagnostic support. Even other midwives and community health workers not affiliated with TulaSalud go to José to coordinate transportation and assistance. This is all because he has a phone.

Tele-facilitadores: Main advantage of mobiles is the 'ability to call'

Both of the tele-facilitadores we spoke to perceived mobile data collection as a means for TulaSalud to monitor their productivity. This is probably because the digitized information on patient consultations is primarily used by the epidemiologists and doctors on the team. Marisol and José simply refer to their paper records for clinical history. Right now, it's a one-way flow of data. So for them, it is just another task that they'll do because "it's their job." They see value for the system as a whole, but not directly in their work.

Despite TulaSalud's success in epidemiological monitoring, the tele-facilitadores felt the most significant advantage of having mobile phones was the ability to call and consult with experts when they were unsure of a patient's symptoms. Many will also send pictures of physical symptoms with their camera phone to get a second opinion. As of now, there are about seven physicians they can consult.

Having the phone also enables CHWs to coordinate resources and logistics, especially for emergencies. Tele-facilitadores will often arrange for vehicles with neighbouring health workers to transfer a severely ill patient to a hospital. Similarly, back at the Tula office, doctors will also help to organize ambulances or seek help from the fire department for health emergencies.

EpiSurveyor to monitor productivity

TulaSalud has an incentive structure to monitor productivity and address the varying levels of motivation amongst workers. The health workers receive monetary incentives of 1000 Quetzales (130 USD) per month. This is based on criteria including the frequency of forms filled and send.

Monitors visit up to 20 tele-facilitadores in the villages every month to verify activities. The evaluations are based on evidence of providing adequate care, initiating home visits, administering medications, and collecting required data on government forms.

A key component of the assessment involves speaking to members of the community and village leaders. Since the health workers are community-elected, input from the beneficiaries is an important part of the program. To maintain this integrity for the scale up, TulaSalud could look at ways to prioritize community visits based on the number of submitted cases that involve pregnant women or sick children.

Even with one mobile survey in use, monitors are able to see if tele-faclitadores are working diligently. In one of my field visits, a tele-facilitadora who had not submitted data for that month had also not carried out any of his other responsibilities as a health worker.

This, however, was a rare incident. About 70% of the tele-facilitadores send data on patient cases every day, and each worker sends in at least 3-10 cases daily. Doctors at the office in Cobán can expect to see around 150 submissions every day. With more mobile surveys, the ability for TulaSalud to remotely monitor productivity will also grow.

Learning on the Go

EpiSurveyor was the clear choice for mobile data collection, not for analysis

By choosing EpiSurveyor, TulaSalud did not have to focus on infrastructure: no server was needed and they could begin right away after creating an account. Survey design through the EpiSurveyor forms assistant was notably easy, and CHWs were able to download the form to start collecting data with no problems.

When TulaSalud first piloted EpiSurveyor they used a free version, but this was limited to only 20 unique forms and 500 completed questionnaires per survey. The team later upgraded to the professional version ($5000/yr) and has benefited greatly from direct and timely support from DataDyne.

EpiSurveyor's analytical tools on the web-based module are not robust enough. Analysis can only be carried out on fixed forms such as multiple choice questions. As of now, the organization can only compare data on questions with pre-programmed answers. The clinical impressions are entered in free form as a code, so this field cannot be analyzed online. The doctor who monitors the incoming data manually downloads all data from the web module to an Access database built by the organization. Queries and analysis are conducted from this unique database.

The team has difficulty downloading a specified set of data points based on timestamps. Every few days, the doctor downloads and imports all 38,000 data entries (since the pilot) to Excel, then transfers only the most recent entries into the Access database. The technical team is working on using APIs to streamline this workflow.

Although the technology has embedded detection for duplication errors, in practice, tele-facilitadores still re-send forms if they don't trust the signal. They have adapted by changing one letter in the diagnosis code or patient name to be sure their survey went through. Back in the office, the staff has to manually delete all duplicates. The technical team is looking into better ways to fetch new or updated records.

In coming years, TulaSalud plans to work closely with the Ministry of Health as they increase the number of tele-facilitadores in Alta Verapaz and consider incorporating data collection at a national level. TulaSalud intends to place more emphasis on collecting information on pregnant women in order to identify high-risk pregnancies early on.

On sending alerts and reminders via FrontlineSMS

For pregnant patients, the physician at TulaSalud evaluates the specific symptoms that come through EpiSurveyor to determine the risk of complications. Before the probable date of delivery, the doctor sends a text message through FrontlineSMS to remind health workers to visit the woman and her family. The doctor observed that the health workers often forget to make the family visit if the reminders were sent two weeks in advance. Instead, the doctor sends a message one week before delivery dates. The technical team is looking at ways to automate these messages based on the information that comes into EpiSurveyor.

If a pregnant woman is unsure of her probable date of delivery, tele-facilitadores can access a calculator on the phone to make an estimation based on her last period. Unfortunately, women often cannot remember these dates and there is a risk of creating systematic errors.

Tele-facilitadores learn quickly

According to Dr. Diaz, who works closely with the EpiSurveyor program, data gathered via mobiles is accurate and of good quality. Although literacy levels are low, health workers were extremely quick in learning the eight-digit codes that represent clinical impressions. The team explained that the CHWs have a great photographic memory and training them to use the phones to enter the data was not difficult.

But sometimes they make errors, such as entering the code for "typhoid fever" when they meant "fever." There are generally 40-50 such type errors. In the data cleaning process, Dr. Diaz is able to identify the errors. He also mentioned that once these issues are brought up during training, tele-facilitadores are good about not repeating them.

Training resources

Working with the local mobile provider

For project expansion, TulaSalud needs to consider the reach of network infrastructure. The technicians are aware which areas are experiencing an unreliable signal, although poor network and unreliable electricity has not significantly impacted data collection efforts so far.

At this point, TulaSalud is limited to working with TIGO, the only mobile operator that provides coverage in Alta Verapaz. To date, the organization has no special deal from TIGO, although it has tried twice to get support through corporate social responsibility funding windows.

In the last few years, the technical team has changed phones twice. It started out with a Motorola model but later realized this phone was not widely available in Guatemala. The team then switched to a Sony Ericsson k550i for the pilot, but tele-facilitadores had difficulty using the keypad. Now, all tele-facilitadores are using a Nokia 5130c. As TulaSalud prepares to scale their m-health program, it has initiated an evaluation of locally available Android-based devices.

Before choosing the model, technicians go into the communities to test how effectively the phones capture a signal. In the latest testing phase, they learned that Blackberry phones had a higher drop rate than the Nokia phones.

The mobile plans cost about 425 Quetzales, which is around 55 USD per month. This includes 1000 minutes and data, but it costs extra to send SMS and the plan is being re-negotiated. TulaSalud only had to pay 1 Quetzal for each phone, and over time, the cost of the phone will be paid off through the contract.

Challenges in communication: Spanish versus Q'eqchi

Documentation and data entry in EpiSurveyor is only available in Spanish. But Spanish proficiency amongst tele-facilitadores varies, as most speak Mayan languages, and few at the office speak Q'eqchi. This issue was brought up as a challenge by some program administrators and tele-facilitadores.

Management of limited resources

As a communication tool, mobiles have enabled CHWs to access medical expertise and coordinate logistics. Looking forward, TulaSalud is exploring ways to develop a mobile-based algorithm to identify high-risk pregnancies. But the team is worried that after key referrals are made, maternal mortality may shift from the villages to the hospitals simply due to a general lack of resources. By warning hospitals of the number of high-risk pregnancies they could expect, TulaSalud hopes the hospitals can prepare personnel and equipment in advance.

TulaSalud's Greatest Strengths

Local IT capacity. Many NGOs in developing countries may not have the local capacity to explore use of technologies in their work. TulaSalud is fortunate to have a committed and strong local technical team. This group of technicians monitor ICT needs and look into new ways to leverage mobiles in their work.

Expertise in tele-education. Although mobile is popular, one strength is TulaSalud's expertise in tele-education. The organization has been working with the Cobán School of Nursing to deliver an impressive distance education program, which trains auxiliary nurses in remote regions across Guatemala.

Close partnership with Ministry of Health. Over the last few years, TulaSalud has also been working closely with the Ministry of Health, and this has paid off. The mobile data collection was conducted alongside existing government systems not to undermine the Ministry's work but to better demonstrate the benefits of a new approach. Similarly, some of the physicians who are consulted by tele-facilitadores are not formally affiliated with TulaSalud. This shows that there is buy-in from the national system.

This year, the organization will begin scaling their epidemiological monitoring program and potentially introduce new mobile surveys. By 2015, it hopes to integrate processes with Guatemala's national health information system.

Call to Action: More Sharing and Collaboration in Latin America

As I wrote this case study, I came across other m-health projects being developed and deployed in Chiapas (Mexico), Jinotepe (Nicaragua), Lima (Peru) and even one in nearby Huehuetenago (Guatemala). I encourage these organizations to share their experiences and strategies that are specific to this region, especially since Spanish guides and resources are difficult to find.

To address these knowledge gaps, the Universidad Peruana Cayetano Heredia in Lima, Peru is hosting the first-ever mHealth Latin American Summit on March 25-26, 2011. This is a great initiative to encourage collaboration amonst Latin American organizations which are testing the potential of mobile health programs.

I would like to give my thanks to the TulaSalud team in Guatemala for hosting me for five weeks, giving me an opportunity to learn from them, and sharing their insights with MobileActive.org. Special thanks to Isabel Lobos, Christy Gombay, Ray Brunsting, and Francisco Hernandez for their kind support and input for the case study and for enriching my learning experience.

Up Close and Personal with TulaSalud's m-Health work in Guatemala Locations