With support from The Children’s AIDS Fund, I will be working with Dr. Elioda Tumweisgwe to set up FrontlineSMS:Medic programs at Bushenyi Medican Center and Kabwohe Clinical Research Center in the western rural district of Bushenyi. Dr. Tumweisgwe is the Chairman of the Uganda Parliament’s HIV Committee.
Over 200 CHWs will be involved in the two programs for the clinics, which collectively serve 800,000 people in 29 subcounties and 2,304 villages.
Here’s my schedule from the night of March 18th:
I’ll be documenting those two weeks with a Flip video camcorder, courtesy of the Clinton Global Initiative. Somewhere in there, my last quarter at Stanford begins. \+/
Grace Kamera runs the HIV treatment program at St. Gabriel’s. She oversees atiretroviral therapy (ART) for the catchment area – which includes 250,000 people and an HIV prevalence rate of 15%. While there are a few government-run health centers in the area, St. Gabriel’s Hospital is the only facility offering HIV tests, and the only place to get treatment.
Many of the CHWs are ART monitors – they are trained to check in on HIV patients, to see if they’re complying with the treatment regimen. Noncompliance deducts from the treatment’s efficacy and contributes to drug resistence. Given a limited number of choices for drugs, patient adherence is critical.
Before FrontlineSMS and the accompanying cell phones arrived, Grace was receiving 25 paper reports, per month, from the ART monitors. With 21 ART monitors equipped with cell phones and trained in text messaging, she’s received 400 adherence updates since the outset of the project (15/week).
If the paper trail had continued, each report would have been hand-delivered by a CHW. The average round trip is about 6 hours, so the SMS program has saved ART monitors 900 hours of travel time.
If Grace receives an SMS regarding a patient’s missteps, she will counsel them when they return for more drugs. The patients are well aware that the CHWs have cell phones, and they’re grateful for the connection to the hospital (and Grace). Of all the patients who enroll in the ART program, 80% agree to be monitored. The remainder fear stigmatization within their communities.
Some patients do not turn up to receive their HIV medication. Grace says this is rare – “They usually come a day or two late” – but it happens. She’s used the SMS network to track 25 patients who have failed to show, asking the nearest CHWs to report on their status. Sometimes they’ve left, other times they’re unable to travel or they’ve passed away.
The hospital and the people it serves can’t afford a lack of connectivity. With Grace at the reigns, ART monitors will continue serving their communities, 160 characters at a time.
I’m back in my old room at the hospital’s guest house, and it’s pouring rain. I arrived just in time for the last Home-Based Care course – 21 new, volunteer CHWs were reviewing referral procedures, patient rights, the contents of their drug kits, etc. The group, seen above, is copying acronyms into their notebooks. Here’s a snapshot of what they’re writing:
At the end of the session, the CHWs were asked to turn in a piece of paper describing the location of their home. Most of their responses were paragraphs long – some included extensive maps.
Joanna, who is running PointCare’s CD4-count outreach program, relayed an interesting conversation with one of the CHWs a week ago. She traveled to their farthest site – a good 100 mile drive – and ran into Zakeyo, who said, “You know, Josh is coming on the 19th.” I checked FrontlineSMS, and Alex hadn’t warned him. It’s exciting to know that the next time I see him, I’ll pass along a solar panel accompanied by a solar-powered light.
Tomorrow, I’m going to spend some quality time with FrontlineSMS – working through the communication over the last four months.
Please comment freely, or shoot me an e-mail, with any questions. I have just two weeks before I return to Stanford, and I’m trying to make the most of it! As always, thanks for reading.
In 2008, FrontlineSMS was implemented as a central SMS hub for a rural hospital in Namitete, Malawi. Located 60 km from Lilongwe, St. Gabriel’s Hospital serves 250,000 Malawians spread over a catchment area 100 miles in radius. The vast majority of the people the hospital serves are subsistence farmers, living on under $1 a day.
• The catchment area has an HIV prevalence rate of 15% combined with widespread malnutrition, diarrhea, Multi-Drug-Resistant Tuberculosis (MDR TB), Pneumocystis pneumonia (PCP) and other opportunistic infections. Three medical officers are employed at St. Gabriel’s – creating a physician-to-patient ratio of 1:80,000.
• The hospital has enrolled over 600 volunteers to act as community health workers (CHWs) in their respective villages. Many of the volunteers are active members of the HIV-positive community, and were recruited through the hospital’s antiretroviral therapy (ART) program.
• When one ART monitor, Benedict Mgabe, was asked why he started volunteering, he replied, “I began when I saw my relatives and friends who were suffering from HIV and AIDS. I took it very personally; I knew I must get involved in curbing this epidemic.”
A need for a true community health network
Distance presents an often-insurmountable obstacle for patients seeking care at St. Gabriel’s. Many patients walk up to 100 miles to the hospital; those with more resources ride bicycles or oxcarts. In order to report patient adherence, ask for medical advice, or request medical care for remote clients, CHWs had to travel similar distances to the hospital’s doors.
The most motivated of the CHWs kept their own patient records, and journeyed to the hospital every few months. Their activities effectively isolated by distance, the impact of the volunteers’ work was restricted to their communities and disconnected from the centralized medical resources at the hospital – their potential role delivering healthcare stifled by disjunction.
Implementing the project
During the summer of 2008, I traveled to St. Gabriel’s with 100 recycled cell phones and a copy of FrontlineSMS – a free program developed by Ken Banks to act as a central text-message hub. My plan was to implement a text-based communications network for the hospital and the CHWs.
In groups of 10-15, CHWs were brought to the hospital, given cell phones, and trained in text messaging. The volunteers’ locations were mapped, and the phones were disseminated throughout the catchment area.
Stationed at the hospital, a laptop running FrontlineSMS coordinates the health network’s activities. The day-to-day program operations were handed over to hospital staff within two weeks. FrontlineSMS is operated by Alexander Ngalande, a nurse who heads the hospital’s Home-Based Care program.
Mr. Ngalande, on setting up and running FrontlineSMS:
“It was very quick. And, people didn’t know that this thing could work here – because, it’s our first time to have this kind of system whereby people can directly communicate with the hospital using FrontlineSMS. It’s simple and straightforward.”
Impact on patient care and hospital operations
The SMS network has enabled the following:
• Requests for remote patient care
- CHWs text the hospital staff when immediate care is needed, and the patient is subsequently visited by the Home-Based Care mobile unit. Patient location and health status are communicated, allowing the mobile team to bring needed drug supplies. According to Dickson Mtanga, a CHW in the pilot program, “When I have a problem with my patient, I just send a message to the hospital, at once. If they are helped and assisted, I feel so much better.”
• Patient tracking
- The hospital is now able to track patients in their distant communities. According to Mr. Ngalande, “Each and every department is free to use FrontlineSMS. We have ART, Home-Based Care, TB, PMTCT (Prevention of Mother to Child Transmission). For example, TB patients who are not coming for their appointments, we use FrontlineSMS to text volunteers close to the patient’s village. It’s easy to get feedback from the community.”
• Checking drug dosages
- CHWs in the field have been given basic drug supplies (e.g. Panadol, Ferrous Sulfate, eye ointments) for primary care. The CHWs now check drug dosages and uses within seconds. When FrontlineSMS receives an SMS with a drug name, it automatically responds to the health worker with that drug’s information.
• Patient updates
- CHWs regularly update the hospital staff with regards to patient status, including reporting patient deaths. These messages have created a post-discharge connection to patients’ well being.
• Coordinating Home-Based Care visits
- In addition to responding to medical emergencies in the communities, the Home-Based Care (HBC) unit also follows a schedule of home visits – sometimes checking on patients have been discharged recently. Other patients are enrolled in the hospital’s palliative care program. Before traveling to the patients’ villages, the mobile unit text messages CHWs in close proximity to the clients they plan to visit. Any response by the CHW (e.g. “Patient is not at home.”) is forwarded to the mobile team’s phone, allowing medical staff to maximize their productivity by visiting available patients.
• CHW-to-CHW communication and group mobilization
- CHWs are now communicating and collaborating. All texts are shuttled through the hospital, and FrontlineSMS commonly relays messages and requests between CHWs. This has been an important function in setting meeting dates for Village AIDS Committees and linking HIV/AIDS support groups. Hospital activities throughout the catchment area (including microfinance and Positive Living programming) are organized using the SMS network. Baxter Lupiya, a CHW in TA Kalolo, notes, “We used to travel a long distance. Now, we have easy communication with others. The program must be continued, because it is so good!”
• Integrating connectivity into HIV counseling
- HIV Counseling and Testing (HCT) at the hospital has been augmented because of the SMS network. If a client tests positive, he or she is paired with to an HIV-positive CHW with a phone – these volunteers act as models for Positive Living and provide comfortable, relatable links to the hospital.
• CHW status
- The connection to hospital services has solidified the CHWs’ role as legitimate healthcare representatives in their villages. The patients and their communities, according to the program’s participants, have noticed the phones, each one clearly marked with the hospital’s logo.
• Incentives and accountability
- The phones provided very concrete incentives for the volunteer work done by the CHWs. The SMS network created, for the first time, a way to track the CHWs’ activities, paving the way for more informed decisions regarding allocation of resources (e.g. which CHWs should receive bicycle ambulances).
A whole-hearted thanks goes out to everyone who has been reading these posts. I’d be thrilled to hear from you. In the next few days, I’ll put up a post that will (attempt to) cover the various, exciting ways this project is moving forward. In the next week or so, I’ll also be developing a DIY guide, based on a series of FAQs – much more on this later.
Posted: September 4th, 2008
Categories: CHW Training
, HIV/AIDS Care
, Home-Based Care
, Tuberculosis Management
, HIV/AIDS Care
, Mobiles in Malawi
, Tuberculosis Management
Comments: 4 Comments
I promise I’ll explain the title – in a bit. First, here’s a re-cap of some of the week’s developments:
Above, I’ve provided a snapshot of today’s activities in the Home-Based Care (HBC) office, the new home of FrontlineSMS and the CHW maps. From left to right – Neggie, a nurse in labor ward; Grace, the hospital’s ART coordinator; Alex, the HBC nurse. Neggie showed up at the office with a list of mothers – they were enrolled in the hospital’s PMTCT program, but they’ve failed to report for their 6-week follow up (when blood samples are taken in order to determine the child’s HIV status by DNA PCR). Alex is locating the mothers’ villages, and reading off the ID numbers of CHWs in their vicinity.
These days, the majority of the patient visits made by the mobile team are responses to SMS requests for immediate medical attention. Still, certain visits are scheduled follow-ups after patients have been discharged. Traveling with Alex, I realized that, at least half the time, the patient is nowhere to be found. Alex now sends a few quick messages to the CHWs overseeing the patients he’s planning on visiting, letting them know he’ll be stopping by. While he’s out in the field, any response from the CHWs is forwarded to his cell phone. This assures that he sees patients who are available – and avoids 40-mile journeys to discover a patient is away, selling maize in Mozambique.
A CD4 outreach initiative funded by the World Bank starts up later this week. They will use the CHW communications network to inform villagers of testing sites and dates – aiming to increase client turnout, thereby bolstering access to the free testing services.
This past Saturday, we gathered the first 30 CHWs for a refresher course – explaining the automatic unit top-ups and the drug keywords (we’ve already had BB Paint, TEO, Panadol, and Multivitamin info requests). After the session, I video-interviewed four of the CHWs, in English.
I’m leaving Malawi this coming Friday, and when I’m back at Stanford I will be uploading the videos. I’m planning to embed them in individual posts – so you can hear the stories of care from those who have lived them. Their general attitude might be described as thankful, yet realistic about the pressing needs of their families and friends – hence, the title of this post. Malawians are said to spend roughly 10 percent of their waking hours at funerals. The statistic does reflect troubling times – but it also demonstrates the blurred boundaries between family and fellowship. Villages are full of brothers, sisters, and mothers – some share heredity, but all share circumstances. Every text message sent by the CHWs has invited me to appreciate the true meaning and function of community.
*title credit: Maggie Chen
At the weekly ART meeting, the “Prevention of Mother-To-Child Transmission” (PMTCT) staff reported on the number of children from their program who have been confirmed HIV-positive.
Mothers are given a single dose of nevirapine, to be taken during labor (whether they deliver at home or in the hospital), and children born at the hospital to HIV-positive mothers receive short-course AZT, in an attempt to deter transmission of the virus. Each case that the PMTCT staff reported had a story. Some examples:
- Mothers enrolled in the program for their first birth, but neglected to contact the hospital during a subsequent pregnancy
- Faced with substantial travel costs, some mothers played their (rather, their children’s) chances – delivering without PMTCT ARVs
- Mothers from a certain village failed to deliver at the hospital, afraid the care-seeking behavior would reveal their status
These mothers might bring in their children for testing after 18 months, or only if symptoms present. This delay in determining HIV-seropositivity dramatically decreases the child’s chances of survival. Because the drugs (single-dose at birth, followed by a one-week course) are so effective in halting vertical transmission of HIV, every child born HIV-positive to women enrolled in the PMTCT program is deeply troubling.
After talking with hospital staff, we’re going to integrate the new SMS network into the hospital’s Voluntary Counseling and Testing (VCT) services. As part of their post-test counseling, every client who tests positive will be paired with an HIV-positive CHW with a cell phone. Many of the CHWs we have trained to text are committed members of the HIV-positive community – leaders of support groups, impressively drug-adherent, and people who spread a ‘Positive Living’ message.
These CHWs, along with their mobiles, will provide HIV-positive individuals a link to hospital services, a way to privately ask questions, and someone to look over their health. It will also provide a means by which to track pregnancies for HIV-positive patients, and follow deliveries for mothers in the PMTCT program.
Above – the fourth group of CHWs. After the training session, Alex and I situated each CHW’s ID pin on the map of the catchment area. As promised, new colors appeared – youth counselors and reproductive health volunteers are now connected to the hospital.
At the week’s medical meeting, a new category was reported – “SMS Follow-Ups” – for the TB and ART programs.
Over the last week, there’s been a cascade of communication. A few examples, of many:
- A man missed his appointment with a TB officer. A CHW was texted, who reported the man had gone to Zambia for a funeral. The hospital will be notified upon his return.
- An HIV support group met, and decided on new member guidelines. Via SMS, the group leader asked the hospital to print copies for the lot.
- A CHW asked about ferrous sulfate dosages, so he could administer the proper amount to an anemic child.
I’m at the halfway point of my trip, and after five weeks on the ground, a discussion of the tools is in order. Ken Banks, the creator of FrontlineSMS, recently wrote an article about the emerging social power of mobiles for BBC News:
Ken is building a community of implementers. Interested parties should visit two of the group’s sites: www.kiwanja.net and www.frontlinesms.com.
It is precisely due to FrontlineSMS’s smart simplicity that the project has developed organically – first and foremost, to meet the hospital’s needs as it serves its catchment area. The quick uptake of the project was fueled, in no small part, by how user-friendly FrontlineSMS is, as a central communications hub.
It also has provided solutions to some potentially tricky questions. A quick example:
Text messages cost 10 cents. Units can be sent from one phone to another via Celtel’s Me2U service, but managing the units of 100+ phones manually is near impossible. So, I had to find a way to both monitor each phone’s unit level and top up (replenish depleted reserves) automatically.
Before leaving Stanford, I engraved each phone’s faceplate with a two-digit ID number. Using FrontlineSMS’s auto-forward function, I’ve set up a system to automatically top CHWs up. When they are running low on units, CHWs can text “(ID number) Units” to FrontlineSMS. Subsequently, a message is sent to Celtel, with instructions to top up that particular CHW. System abuse is unlikely and avoidable – the volunteers know that FrontlineSMS records every message received, sandwiched by unit requests.
We’re starting to explore additional functionalities of FrontlineSMS. Each CHW is given a kit of basic medications – a portion of the questions we’re fielding involve those drugs. We’ll set up an auto-reply system so that any message containing a given drug name returns a summary – function, dosages, etc. – for that drug.
Posted: July 14th, 2008
Categories: CHW Training
, HIV/AIDS Care
, Home-Based Care
, Tuberculosis Management
, HIV/AIDS Care
, Tuberculosis Management
Comments: 2 Comments
Today, Alex and I headed into the field. The goal was to find seven patients – the hospital had been alerted of their declining health, by SMS, through seven different CHWs. The motorbike-enabled, text-message-guided journey through the catchment area completed a (once) theoretical cycle: The CHWs surveying communities, then communicating their most urgent needs; the hospital gathering resources (diesel, drugs, and medical advice), then traveling to the villages.
Often, we stopped by the CHW’s home. Above, Pascalia directs Alex to the patient’s location. After the picture, she ran home, put on her St. Gabriel’s Hospital ‘Positive Living’ shirt, and joined us for the consult.
A brief overview of some of the cases:
- An HIV-positive man, on ARVs, with Karposi’s Sarcoma and wet beriberi.
- A 13-year-old girl with stomach cancer and massive ascites. Pascalia is the closest CHW, but her bicycle ‘ambulance’ is not operable. So, we texted Moreen, who is just a few villages away. She’ll bring her ambulance, and get the girl to the hospital.
- A 72-year-old man, who is sputum-positive for TB, and was complaining of severe joint pains.
- An man, suffering from epilepsy, fell into a fire two weeks ago. He has developed a massive ulcer on his left heel. Left, Alex is explaining how to wrap gauze. The man happily let us take a picture of the scene.
We met with the hospital staff when we returned – after traveling 100 km in 6 hours, and visiting 7 different villages. Everyone agreed that the day was a success.
The entire hospital staff is now fully aware of the project and its goals. We’re all moving in the same direction. The consensus is that a second, simple cycle, once disseminated, will greatly aid follow-up and monitoring programs: The medical staff (looking to follow up on a TB patient, for example) consulting the CHW map, and contacting the nearest CHW; the CHW checking on the patient, and responding to the hospital re: their status.
Tomorrow, we train another 15 CHWs.
I was excited to hear that PC World picked up an article that Ken Banks (founder of kiwanja.net, and the man behind FrontlineSMS) wrote, titled, “Witnessing the Human Face of Mobile in Malawi.” If you’re interested, you can read it here.
We’re ready to expand a bit. We heard from every one of the CHWs in our pilot group (some, many times). In just a few days, we saw some tangible results. Here’s one example:
- Verona Kapagawani, who lives in TA Mavwere, alerted the hospital that a patient had run out of his meds.
- A nurse at the hospital, familiar with the patient, responded that he should fill his prescription (he has chronic congestive heart failure) as soon as possible.
- Verona responded, noting that she counseled the patient. He wasn’t feeling well enough to travel, so she came to the hospital to pick up his drugs.
- While chatting with the nurse, Verona charged her cell phone.
I ran into another CHW, Benedict Mgabe, at the hospital today. He’s the chairman of the Community AIDS Committee, and he’s texted me every day. With a smile on his face, he shook my hand and said, “This is a very good program! It is really helping us a lot.” Those short sentences confirmed that I want to have longer conversations with the CHWs, to gather their reactions.
We’re using the pilot group to contact the next wave of CHWs, another 10 volunteers, to be trained and given phones Monday morning. Above, you’ll see Alex (a nurse, who does most of the Home-Based Care community work) and Grace (who coordinates the ART program) using FrontlineSMS to text the group.
I had a long discussion with Dr. Mbeya, the medical director at St. Gabriel’s, about making very definitive links between the hospital and the CHWs’ activities. As the project grows over the next weeks, we’ll create guidelines for reporting and follow-up, based on the specific program. For example, the hospital has a lively prevention of mother-to-child transmission (PMTCT) program, aimed at reducing vertical transmission of HIV. We’ll develop a protocol for utilizing the CHW network to follow up on mothers who’ve missed their appointments, and the CHWs will provide a link to the communities’ pregnant population.
I’d love to get some other perspectives on this.
Sending good wishes from Namitete.
Back row, Left to Right: Harold Malanga, Benedict Mgabe, Zakeyo Kaphanthengo, Joana Chimphanje, Pascalia Chiwinda, Moreen Phiri, Verona Kapagawani, Baxter Lupiya
Bottom row, Left to Right: Dickson Mtanga, Grace, Alex, Rosemary Bernado
I have to believe today’s events were endowed with the elements of a promising beginning. The first phones are in the field! Before I get too ahead of myself, let me explain what’s put me in such an optimistic mood.
We called the chairs and vice-chairs of the volunteer committees (Community AIDS Committee, Village AIDS Commitee, and the People Living With HIV and AIDS [PLWHA] support group) for a meeting at 9 am this morning. The came in together, some on bikes, most on foot. Considering that some traveled over 50 miles (that’s most definitely an underestimate), this was quite the event.
I had been up since 6:00, testing phones and FrontlineSMS, and I was eagerly awaiting the group – equipped with Cokes, Fantas, lemon cookies and a broad smile.
We met in the old Nutrition Rehabilitation Unit, which had been stocked with assorted chairs. After everyone sat down, the hospital’s matron greeted the group. After making sure each of the CHWs could understand slow English, she opened the meeting:
I know that times are difficult, but we must make improvements step by step. Do babies just start to run? No, they start just sitting. Then, when they see something beautiful, they wiggle their stomachs and arms, trying to reach for it. Soon, they can crawl; then they start walking. We can take steps forward, together. This is a pilot – we are learning new vocabulary today, too! You are the first to do this. It is not enough to try. We must do it.
After that poetic introduction, the matron told them they’d be receiving cell phones. This news was greeted, almost immediately, with cheers and applause.
The matron handed the ecstatic audience over to Alex and me, and we explained how to operate the phones (Alex is a male nurse, who works within the Home-Based Care program). I had every single ounce of the audience’s attention, as I started, “First, just open your phone!”
*A disclaimer: That’s Alex’s handwriting.
We had an outstanding time teaching the CHWs how to use the phones. It started with group chants of, “Messages! Compose Message! New Short Message!” The majority of the CHWs hadn’t texted before, so we spent some time teaching them – by the end of the session, each of the health workers flawlessly typed ‘St. Gabriel’s Hospital,’ apostrophe and all.
After a few hours of rigorous concentration and seemingly inexhaustible patience, we took a break for snacks. During break, we discussed logistics.
The CHWs all claimed to have access to electricity. It seems that most will have to pay 10 kwacha (a few cents) to use the nearest electricity hub. When it’s necessary, they (or someone from their village) will travel to the hospital to recharge the phone, free of fees. This isn’t altogether rare, as the CHWs often accompany patients to the hospital.
After the matron and Alex explained baseline expectations for communication, the CHWs took over the meeting. Pascalia and Verona, the two Community AIDS Committee chairs, were especially emphatic. Pascalia stood, declaring, “The hospital does what it can to help the volunteers. We must do what we can to work hard. Remember, just because we are the ones who came to the hospital today does not mean the hospital loves us more than the others.” Verona responded, looking straight at me and pumping her fists, “I will work much harder!”
The frequency and type of communication the CHWs will maintain with the hospital will depend on the program the CHW is enrolled in. For example, those involved in TB drug adherence monitoring will alert the hospital when a patient is deviating from a regimen. Similar expectations were agreed upon for the ARV monitors. Home-Based Care volunteers will be messaged when a patient needs to be traced or if a follow-up is needed. Those involved in organizing peer support groups will use the system to coordinate meeting times and locations. With any luck, and plenty of commitment, they’ll be a working network of CHWs, with St. Gabriel’s Hospital as a coordinating agent.
Before leaving, the group sent a sample text to the hospital’s number, and we showed each CHW their respective message as it popped up in FrontlineSMS. It was an animated scene, for sure. I recorded some of their information (name, number, village, and respective program), checked their starting units, and let them loose on the catchment area.
Needless to say, I’m looking forward to tomorrow, and the possibility of the first messages trickling in. With a smile on her face, Verona asked me, “So, when can we start messaging?” A few of the CHWs joined me in responding, “Now!” As they started home, I could see they were exchanging phone numbers.