Project Masiluleke: Comprehensive HIV Care With Mobiles

Posted by MohiniBhavsar on Nov 24, 2010

Over 5 million people in South Africa are living with HIV and the country has the highest burden of TB-HIV co-infection. TB treatment completion and cure rates fall below 50% in almost half of the districts. Project Masiluleke, Zulu for to give wise counsel or lend a helping hand, stepped up to the challenge and is using mobiles to provide end-to-end care through awareness, testing, and ensuring treatment compliance.

Monopolizing on the 90% of South Africans who own mobile phones, the iTEACH team -- with collaborators from Pop!Tech, The Praekelt Foundation, and Frog Design -- brought HIV awareness to the masses and improved treatment compliance through the use of text messaging. Social stigma towards those carrying the disease results in low rates of HIV testing, and an overburdened public health system discourages people from utilizing available services at local clinics.

We spoke with Dr. Krista Dong, Director of iTEACH, and Marcha Neethling, Project Manager at The Praekelt Foundation, to learn more about Project Masiluleke, also called Project M. (For more information about the mobile technologies developed by The Praekelt Foundation, see our post here.)

A Three-Pronged Approach

Project M consists of three complementary phases that were piloted and rolled out in South Africa’s hardest-hit district of KwaZulu-Natal. Project M is being implemented at the Edendale Hospital, the largest anti-retroviral drug (ARV) roll-out site in South Africa. In this area, about 60% of pregnant women test positive for HIV and 200 new cases of TB are registered every month. Dr. Dong explained that the choice of where to pilot an m-health initiative could determine its potential to be replicated in other resource-limited settings:

“Edendale was selected specifically because it is replete with challenges faced by large government hospitals at the epicenter of the HIV and TB crisis. Success in this setting would suggest that replication and scale-up in similar under-served communities is feasible.”

Each component of Project M addressed a specific barrier for people seeking care and for health care workers managing care. 

1. TxtAlert: Reminders for HIV clinic appointments are sent to patients’ mobile phones via SMS.

Showing up to the HIV clinic appointment largely correlates with ARV treatment adherence. In June 2007, TxtAlert, an SMS-based automated ARV clinic appointment reminder system, was piloted in partnership with Right to Care at the Themba Lethu Clinic, the largest privately funded ARV treatment site in South Africa.

TxtAlert is a web service that is linked to the electronic medical record system (MRS). TxtAlert collects appointment data from the MRS and reminders are sent to patients who are receiving ARVs. Reminders are sent both two weeks and one day before scheduled appointments. Text messages are also sent one day after the appointment to either thank the patient or to alert them of a missed appointment and encourage them to reschedule.

In January 2010, iTEACH launched TxtAlert at Edendale Hospital. The outcomes have yet to be evaluated. But in our correspondence with Neethling, we learned of TxtAlert’s impact at the privately funded clinic. Dr. Ian Sanne, CEO of Right to Care, was quoted in a South African newspaper saying,"The success of TxtAlert is telling: missed appointments have fallen from 30% to 4%. The lost-to-follow-up rate has declined from 27% to 4%”since 2007." (Saturday Star, 28 Nov 2009)

Likewise, the Thembu Clinic extended TxtAlert beyond HIV appointment reminders to include medical alerts from clinical visits and laboratory safety results.

2. SocialTxt: A mass mobile messaging campaign to raise HIV awareness and direct people to the National AIDS Helpline for counseling and information support.

A combined 30 million “Please Call Me” (PCM) text messages are sent every day in South Africa at no cost to callers. In October 2007, a mass text message HIV awareness campaign was launched based on SocialTxt technology developed by The Praekelt Foundation. 

The text messages contained information about HIV and TB and directed mobile phone users to the free National AIDS Helpline. The messaging space was donated by mobile operator MTN.

The campaign resulted in an impressive 300% increase in calls to the helpline, from 1000 calls per day to 3000-4000 calls per day. Since the project launch, over 685 million PCM messages have been sent to the helpline. Upon receiving the PCM message, helpline staff, who are HIV patients themselves, offer counseling and direct callers to HIV and TB testing centers.

3. HIV self-test kit: A home-based HIV test kit which includes the option of calling the National AIDS Helpline for assistance.

The final component of Project M is the HIV self-test kit, which is currently being developed. The hope is that this kit will enable South Africans to perform an HIV test in the privacy of their own homes, with the option of calling a counselor at the National AIDS Helpline via mobile phone.

Deconstructing the Success of the Mobile HIV Awareness Campaign Using SocialTxt

Project Masiluleke has shown great success with the SocialTxt campaign, resulting in a striking improvement to an existing but formerly under-utilized government HIV/AIDS resource. Through mobile technology, iTeach and its collaborators successfully set up a large-scale public health messaging campaign that resulted in increased call volume.

The downstream challenge is ensuring that the staff at the helpline is able to deal with the increased number of calls. Presently, there are dropped calls due to the inability of staff to field the growing number of calls. The helpline has been able to handle the increased call volume well, but to ensure high quality service, Dr. Krista Dong believes the following gaps need to be filled.

  • There needs to be regular, high-quality training of staff. (The initial training was provided by iTEACH.)
  • The service needs to have increased coverage during evenings and weekends.
  • The staff needs to have better knowledge of available local resources to more effectively make referrals for callers.

Mobile projects remain dependent on securing support from mobile operators for sustainable projects. The Prakaelt foundation was involved in negotiating the messaging space with MTN for the SocialTxt campaign. Initially, Project M partnered with Vodacom, but when it came to donating messaging space, they refused. MTN stepped up to the plate when they were asked and have renewed their donation now for the third year. Of the millions of daily PCM messages that are sent in South Africa, MTN guaranteed 5% of its free messaging space to the helpline.

Said Neethling,

“It is always tricky to work with mobile network operators, but very crucial in having a cost-effective, sustainable solution in place. We now work very closely with MTN and Vodacom, and as a result of the good press and results we have shown through Project M, we were able to go back to Vodacom and are now utilizing their PCM platform as well.”

By partnering with both Vodacom and MTN, Project M garnered enough support to kick off a massive HIV awareness campaign in October 2010. So what was key in forming these relationships? Neethling said it was demonstrating a profitable business case.

“You have to show them the business case of supporting your project. They are about making money. If you can show how your project, even though it may include zero-rated services, can generate income for them, they would be happy to support it.”

Despite the success of PCM messages, Dr. Dong explained that calls made from the mobile phone to the helpline are not free. As soon as people hear they will be charged, they drop the call. This unfortunately contributes to a significant drop rate among mobile users. Currently, only calls from a landline to the helpline are toll-free. Dr. Dong explained that one thing that is desperately needed is a toll-free line to the helpline for mobile phone users.

Implementation and Evaluation of TxtAlert, the Appointment Reminder System

Neethling described the process of implementing the TxtAlert system as a tedious one, but well worth it, considering the encouraging observations at the Themba Lethu clinic in Johannesburg.

“A paper-based system, if there is one, can be a difficult means to trace whether a patient has actually defaulted on their clinic appointments. If they don’t have a mobile phone, but only a landline number or an address, in some cases, clinics might actually send out field workers to patients’ houses to try and find them. But in many cases, they might not find people at the house, and a lot of time and resources are wasted in this way.”

At the Themba Lethu Clinic, there was already an electronic MRS in place, which allowed The Praekelt Foundation to pilot TxtAlert. An automated tracking mechanism allowed service providers to flag patients who frequently default on appointments and to take the necessary follow-up action. (For clinics that do not have a MRS, the TxtAlert system comes with a basic booking tool which is open source and available to NGOs at no cost.)

To get the system up and running, patients were asked as they registered at the clinic if they would like to opt in for the appointment reminder system. (It is required by law to ask for consent before collecting phone numbers and a patient’s clinic appointment information.) Neethling said they turned to patients already taking ARVs at the site to assist in convincing patients to opt in. For a site with 10,000 patients, it took about three months to get all the patients registered into the TxtAlert system.

In an evaluation of the system, Neethling and colleagues found that almost 80% of patients voluntarily opted to receive the SMS alerts, and between May and August 2008, TxtAlert saw a steady opt-in rate of 180 patients per month.

Besides the initial effort of registering patients, clinic staff have to cross-check the patient’s number at every appointment to make sure the number is the same as listed on the TxtAlert system. Often, in South Africa, people may be using two to three SIM cards. During the pilot, patients started to rely on the alerts so much that they actually were less likely to switch SIM cards.

Additionally, patients started to interact with the TxtAlert system to reschedule appointments. In the evaluation report, Neethling and colleagues found that “an average of 51.9% of all “Please Call Me” messages received by the TxtAlert administrator led to the successful rescheduling of patient appointments.”

Interestingly, when the TxtAlert system failed (due to technical glitches) The Praekelt Foundation learned that patients actually started to default again. Neethling believes this demonstrates that patients really do rely on the SMS reminders.

HIV Self-Test Kit: Remote Consultations for HIV Testing

The mobile component in the HIV self-test kit includes the option of calling the National AIDS Helpline for further guidance and support. Speaking to a counselor over the phone reduces the perceived stigmatization that hinders people from going to a clinic.

Although still in the conceptual phase, feedback from focus groups of high-risk men consistently confirmed they felt empowered by the ability to test privately, are eager to have access to self-testing, and prefer mobile interactions over face-to-face counseling.

According to Dr. Dong, there is potential to expand the role of the staff at the helpline in this component of Project M. Her vision is that counselors could guide the tester through the process, as well as provide pre and post test counseling. Said Dr. Dong,

“Effectively, counselors could provide all the same services that existing facility-based services offer, but now remotely. This allows for real scale, confidentiality and empowerment of persons who want to test when and how they choose.”

Get Schooled on m-Health Through iTeach's Experience

The majority of HIV-associated death in Africa is often caused by TB. Despite reporting 100% directly observed therapy (DOT) coverage in all 9 provinces, South Africa has one of the worst national TB programs, lowest TB treatment completion and cure rates, highest TB co-infection burden globally, and a growing epidemic of drug-resistant TB. iTEACH is currently piloting two new m-health interventions that specifically address TB treatment compliance.

TxtAlert-TB: SMS-based Clinic Appointment Reminder System for Tuberculosis Patients

Patients with TB often default on their 6-month treatment courses, take pills irregularly, or stop at the first signs of feeling better. Dr. Dong suggested that this is a result of ineffective patient preparation, poor linkage of TB services, and insufficient staff to provide DOT. Building on the TxtAlert system for HIV clinic appointment reminders, iTEACH will be launching TxtAlert-TB, a monthly TB treatment reminder system jointly developed with The Praekelt Foundation.

TxtAlert-TB will send personalized text messages to the mobile phones of patients receiving TB treatment. Unique to the TxtAlert-TB is that patients will have the option of choosing a “celebrity treatment buddy” from whom their treatment reminders will come from. Although iTEACH could not comment specifically on the efficacy of using celebrity endorsement, musicians from Ghetto Gruff are widely recognized in South Africa and may add value in encouraging patients to stick to their treatment regimes.

SMS Connecting DOTs: Tracking TB Services From Diagnosis to Cure via SMS

Currently, iTEACH is developing another m-health project called SMS Connecting DOTs (SMS C DOTS) that will monitor treatment adherence of 1000 patients. Using starting funds from a grant provided by the Mulango Foundation, iTEACH is working with FrontlineSMS to develop the technology that will track TB services along the continuum of care from diagnosis to treatment completion and cure. iTeach anticipates this program will have a dramatic impact on TB outcomes.

Outlined below is the workflow that will be managed via SMS:

  1. Patients will be enrolled in the SMS C DOTS program at the hospital after being diagnosed with TB.
  2. An SMS C DOTS staff member will collect the baseline health information on a mobile phone.
  3. This staff member will send an SMS to both the clinic and to a single CHW who lives in the same area as the patient.
  4. Both the clinic and CHW will acknowledge receipt of this information.
  5. The CHW will visit the patient.
  6. The CHW will send an SMS back to the hospital confirming the home visit has been made.
  7. The patient will go to their local clinic and pick up with monthly TB medication.
  8. An SMS C DOTS staff will send an SMS back to the hospital confirming the patient showed for their visit. If they do not show within 1 week, they are deemed “high risk” and the CHW will be alerted to make another home visit and continue with monthly visits.
  9. The above steps continue every month for a 6 month treatment period.

Challenges of Plunking a Mobile Phone System in a Fragmented Public Health System

Both the SMS C DOTS and TxtAlert-TB projects are being piloted in 4 out of 17 clinics within the Edendale Hospital catchement area. Dr. Dong explained that at the 4 clinics, there almost 300 CHWs, primarily volunteers or workers compensated in different ways. In general, CHWs serving this area are not seamlessly integrated within the public health infrastructure, which poses challenges in implementing a project that heavily relies on their work.

Understanding existing capacities is an important task before implementing any mobile project. For example, for its new m-health endeavors, iTEACH completed a preliminary assessment that revealed baseline knowledge of TB amongst the CHWs was almost non-existent. Dr. Dong said that only one out of the 300 CHWs they are currently training was aware of the National TB Guidelines.

iTEACH also found that a systematic linkage between CHWs and the clinics is weak. In fact, the Department of Health was unaware of the CHWs that were serving the communities, and as a result, it had not already engaged them in existing TB services in any capacity. Not to mention, the CHW sponsoring organizations had not established consistent contact with the clinics, contributing further to the problem of a disconnected healthcare network.

The aim of SMS C DOTS is to link the various players in the healthcare network through information whilst working within the existing public health infrastructure. Said Dr. Dong,

“SMS C DOTS is very much embedded in public health services, as the enrollees are patients diagnosed with TB at a government hospital and being down-referred to a government clinic… The added huge benefit to the existing failing TB service is the systematic linkage of CHWs to further support TB services. Basically, SMS C DOTS is acting as a net or links.”

The SMS C DOTS program was designed to utilize both iTEACH hired staff and CHWs, whether they are volunteers, stipended, or employed. Already iTEACH is seeing positive trends:

“We are currently seeing very high attendance rates at our training, because the CHWs are truly hungry for knowledge and understand that they are currently not highly regarded within the community because of their lack of expertise.”

The benefit for CHWs is knowledge through free training, improved care within their communities, and an increased likelihood of qualifying for other work.

Critical Success Factors of iTEACH

Recognizing the experience iTEACH has accrued over the years, we asked what factors it believes are important for success, beyond the basics of having clear goals and action plans.

To summarize, Dr. Dong said that essential factors for a sustainable, sucessful m-health project include trust, simplicity, work load reduction, an understanding of the setting and challenges, and a realistic exit strategy.

Build trust

Relationships of trust with the target staff and with governments is key to a sustainable project. According to Dr. Dong, members of the health care community they have engaged with are very receptive to the use of mobile technology in HIV/AIDS and TB work -- as long as the projects and technology are explained and concerns regarding data security and confidentiality are honored.

“Relationships of trust are very important in order to introduce projects and far more important to ensure there is full buy-in and that the projects will be sustained after the implementing NGO decides to exist.”

The SocialTxt campaign partnered with the government to improve the use of an existing government service nationwide. There was minimal difficulty in linking to the National AIDS Helpline because the iTeach staff had been serving and assisting the Department of Health for the last 10 years. As a trusted NGO, there was significant trust and strong working relationships that were already formed, allowing iTEACH to pilot this initiative and others in government facilities, both clinics and hospitals, without bureaucratic delays.

Said Dr. Dong,

“Things always go much slower working through governments, than they would if we were happy to conduct our projects privately, in parallel to public health services. However, we specifically wanted to build capacity within government services, because this is where the majority of patients in need access their health care.”

iTEACH’s SMS C DOTs project will monitor government mandated statistics to ensure integration into existing public health services. The patients that will be enrolled in the pilot are diagnosed with TB at a government hospital and then referred to a government clinic. The mobile phones will simply link the various information flows within the system.

Keep it simple

For a sustainable m-health projects, ensure that the mobile technology is very simple to operate, with minimal need for ongoing maintenance. For example, if regular IT support and replacement of handsets and routers is required, then sustainability is unlikely. By keeping it simple, health practitioners can continue to focus primarily patient care, without the technology needing too much maintenance.

Reduce the work load

Technology based initiatives have to demonstrate a reduction in work-load of all staff to gain support. Dr. Dong offered advice on this point:

“Buy-in requires that all levels of staff that interface with the system perceive a direct benefit from the system. If they do not, it is unlikely that they will play their role effectively. It is best to have an intervention that has huge benefit to all involved, whether reduction in work load or personal reasons, as in their contribution benefits their community.”

Understand the setting and the challenges

For projects with multiple partners, at least one partner (though all are preferred) needs to have a thorough understanding of the setting and challenges, including political, cultural, financial, personal/individual, and technological.  Additionally, at least one partner should have a proven track record in the pilot setting (or similar), and effective working relationship with all stakeholders, from the higher level government to the frontline on the ground (clinics/community).

Collaborations involving more than two partners can be challenging, especially if they are not all local. Challenges are primarily in coordinating conference calls and engaging all partners over telephone is not ideal. 

Develop a realistic (and timely) exit strategy

For a sustainable project, the exit strategy needs to be realistically assessed early on.

Dr. Dong suggested some questions that should be asked in order to realistically evaluate the sustainability of a project after (or if) the main NGO/implementer leaves. Can (or is) the project be run by existing government employees? Can (or will) the government hire staff for it? Will the NGO or private organization provide all needed staff?

In summary

Using mobile technology, iTEACH and its collaborators have been able to reach out to patients, strengthen existing public health services, and create necessary linkages and feedback mechanisms to connect the various health services for TB and HIV/AIDS. Project Masiluleke is an example of a collection of well-coordinated mobile projects that seek to address several challenges in the public health system, all of which have demonstrated encouraging results.

iTEACH and The Praekelt Foundation were recent recipients of the Impumelelo Gold Medal for the collection of initiatives that make up Project M. The project was initially borne out of a collaboration facilitated by Pop!Tech, but now operates independently. We thank Leetha Filderman, Director of the PopTech Accelerator for facilitating our conversation with iTeach and The Praekelt Foundation. We also thank Marcha Neethling and Dr. Krista Dong for making themselves available to give deep insights on all aspects of the project.

Basic Information
Organization involved in the project?: 
Project goals: 

iTEACH identified four links in a chain of care essential for HIV and TB treatment success: [1] Effective awareness, [2] Scale-up of early HIV testing, [3] Early anti-retro viral treatment (ART) initiation, and [4] Support for ART and TB treatment adherence. In October 2007, Project ‘Masiluleke’ (Zulu for ‘to give wise counsel’ or ‘lend a helping hand’) or ‘Project M’, was launched to address these challenges with a chain of interventions designed for replication and scale. Project M is a collaborative effort, lead by the iTEACH NGO, along with a diverse set of partners (The Praekelt Foundation, Frog Design, Pop!Tech, MTN and Vodacom, LifeLine Southern Africa, Ghetto Ruff Records and the National Geographic Society).

Brief description of the project: 

Briefly, each of the three components of Project M addressed a specific barrier for people seeking care and for health care workers managing care.

1. TxtAlert: Reminders for HIV clinic appointments were sent to patients’ mobile phones as text messages. Showing up to your HIV clinic appointment largely correlates with anti-retro viral treatment (ART) adherence. In June 2007, TxtAlert, an SMS-based automated ART clinic appointment reminder system was piloted in partnership with Right to Care at the Themba Lethu Clinic, the largest privately funded ART treatment site in South Africa. TxtAlert is a web service that is linked to the electronic medical record system.

Clinic appointment reminders are sent to patients who are receiving ARVs, both two weeks and one day before their scheduled appointments. Text messages are also sent one day after the appointment to either thank the patient for coming or to alert them of a missed appointment and encourage rescheduling.

2. SocialTxt: A mass mobile messaging campaign was launched to raise HIV awareness, and directed people to the National AIDS Helpline. In October 2007, a mass text message HIV awareness campaign was launched with the so-called SocialTxt technology developed by the Praekelt Foundation.

One million text messages were sent everyday to mobile phone users throughout South Africa that contained key information about HIV and TB and directed mobile phone users to a free National AIDS Helpline.

The campaign resulted in an impressive 300% increase in calls to the helpline, from 1000 calls a day to 3000-4000 calls a day. Since the project launch, over 685 million PCM messages were sent to the helpline. Upon receiving the PCM message, staff at the helpline, who are HIV patients themselves, offer counseling and direct callers to HIV and TB testing centers.

3. HIV Self-Test Kit: Currently in development is a home-based HIV test kit that has the option of calling the National AIDS Hotline for guidance and assistance. The hope is that this kit will enable South Africans to perform an HIV test, in the privacy of their own homes, with the option of calling a counselor at the National AIDS Helpline via cell phone.

Target audience: 

Project M is being piloted in KwaZulu-Natal (KZN), which is the South African province with the highest HIV burden and poorest TB treatment outcomes. The project will be managed from Edendale Hospital, which is located in one of the hardest hit districts in KZN (Umgungundlovu) where 60% of pregnant women test HIV+ and 200 new cases of TB are registered every month. Edendale serves an exclusively Zulu population of 1 million persons, where unemployment is estimated at 60% and most are living in abject poverty.

Edendale was selected specifically because it is replete with challenges faced by large government hospitals at the epicenter of the HIV and TB crisis. Success in this setting would suggest that replication and scale-up in similar underserved communities is feasible.

Detailed Information
Mobile Tools Used: 
Length of Project (in months) : 
3
Status: 
Ongoing
What worked well? : 

1. TxtAlert: HIV/AIDS Clinic Apppointment Reminders

  • 80-90% opt-in rate was observed at the clinics.
  • Patients started to rely on TxtAlert reminders so much so they were less likely to switch their mobile phone number.
  • Patients started to interact with TxtAlert system via "Please Call Me" messages to reschedule their appointments in advance.
  • Patients currently on ARVs at the pilot site assisted in encouraging patients to opt-in for the SMS alerts.

2. SocialTxt: Mass mobile campaign to raise HIV awareness and direct people to the National AIDS Helpline

  • iTEACH offered relevant clinical and cultural expertise for the content of the SocialTxt SMS messages.
  • The project increased the number of calls by 300% to the National AIDS Helpline.
  • It leveraged the massive uptake of "Please Call Me" messages in South Africa for a large public health messaging campaign at no cost to people.

3. HIV Self-Test Kit, with option of calling via mobile phone to the Helpline

  • Focus group discussions revealed people prefer telephone interactions to seek counseling and HIV testing support, as opposed to in-person consultations.
  • Mobile phones address the issue of perceived stigmatization at clinics, which deters people from getting tested.

 

What did not work? What were the challenges?: 

1. TxtAlert: HIV/AIDS Clinic Apppointment Reminders

  • The process of collecting and registering numbers of patients was tedious, though outcomes show it was well worth it. This process took about 3 months.
  • There is a need to confirm at each appointment that the patient's number is the same as that listed on their system. Many people switch between 2-3 SIM cards.

2. SocialTxt: Mass mobile campaign to raise HIV awareness and direct people to the National AIDS Helpline

  • There are challenges in securing mobile operator support, though this changed once a profitable business case was demonstrated.
  • Counselers at the helpline need more training to deal with the increased volume in calls and to ensure the quality of service is not compromised.
  • The service needs to have increased coverage during evenings and weekend.
  • Counselers need better knowledge of local resources to make effective referrals.
  • A toll-free line is needed so mobile phone users can call without charge. The Helpline is toll-free only if calls are made via landlines.

 

Project Masiluleke: Comprehensive HIV Care With Mobiles Locations

You need to upgrade your Flash Player
Project Masiluleke: Comprehensive HIV Care With Mobiles data sheet 4275 Views

Over 5 million people in South Africa are living with HIV and the country has the highest burden of TB-HIV co-infection. TB treatment completion and cure rates fall below 50% in almost half of the districts. Project Masiluleke, Zulu for to give wise counsel or lend a helping hand, stepped up to the challenge and is using mobiles to provide end-to-end care through awareness, testing, and ensuring treatment compliance.

Monopolizing on the 90% of South Africans who own mobile phones, the iTEACH team -- with collaborators from Pop!Tech, The Praekelt Foundation, and Frog Design -- brought HIV awareness to the masses and improved treatment compliance through the use of text messaging. Social stigma towards those carrying the disease results in low rates of HIV testing, and an overburdened public health system discourages people from utilizing available services at local clinics.

We spoke with Dr. Krista Dong, Director of iTEACH, and Marcha Neethling, Project Manager at The Praekelt Foundation, to learn more about Project Masiluleke, also called Project M. (For more information about the mobile technologies developed by The Praekelt Foundation, see our post here.)

A Three-Pronged Approach

Project M consists of three complementary phases that were piloted and rolled out in South Africa’s hardest-hit district of KwaZulu-Natal. Project M is being implemented at the Edendale Hospital, the largest anti-retroviral drug (ARV) roll-out site in South Africa. In this area, about 60% of pregnant women test positive for HIV and 200 new cases of TB are registered every month. Dr. Dong explained that the choice of where to pilot an m-health initiative could determine its potential to be replicated in other resource-limited settings:

“Edendale was selected specifically because it is replete with challenges faced by large government hospitals at the epicenter of the HIV and TB crisis. Success in this setting would suggest that replication and scale-up in similar under-served communities is feasible.”

Each component of Project M addressed a specific barrier for people seeking care and for health care workers managing care. 

1. TxtAlert: Reminders for HIV clinic appointments are sent to patients’ mobile phones via SMS.

Showing up to the HIV clinic appointment largely correlates with ARV treatment adherence. In June 2007, TxtAlert, an SMS-based automated ARV clinic appointment reminder system, was piloted in partnership with Right to Care at the Themba Lethu Clinic, the largest privately funded ARV treatment site in South Africa.

TxtAlert is a web service that is linked to the electronic medical record system (MRS). TxtAlert collects appointment data from the MRS and reminders are sent to patients who are receiving ARVs. Reminders are sent both two weeks and one day before scheduled appointments. Text messages are also sent one day after the appointment to either thank the patient or to alert them of a missed appointment and encourage them to reschedule.

In January 2010, iTEACH launched TxtAlert at Edendale Hospital. The outcomes have yet to be evaluated. But in our correspondence with Neethling, we learned of TxtAlert’s impact at the privately funded clinic. Dr. Ian Sanne, CEO of Right to Care, was quoted in a South African newspaper saying,"The success of TxtAlert is telling: missed appointments have fallen from 30% to 4%. The lost-to-follow-up rate has declined from 27% to 4%”since 2007." (Saturday Star, 28 Nov 2009)

Likewise, the Thembu Clinic extended TxtAlert beyond HIV appointment reminders to include medical alerts from clinical visits and laboratory safety results.

2. SocialTxt: A mass mobile messaging campaign to raise HIV awareness and direct people to the National AIDS Helpline for counseling and information support.

A combined 30 million “Please Call Me” (PCM) text messages are sent every day in South Africa at no cost to callers. In October 2007, a mass text message HIV awareness campaign was launched based on SocialTxt technology developed by The Praekelt Foundation. 

The text messages contained information about HIV and TB and directed mobile phone users to the free National AIDS Helpline. The messaging space was donated by mobile operator MTN.

The campaign resulted in an impressive 300% increase in calls to the helpline, from 1000 calls per day to 3000-4000 calls per day. Since the project launch, over 685 million PCM messages have been sent to the helpline. Upon receiving the PCM message, helpline staff, who are HIV patients themselves, offer counseling and direct callers to HIV and TB testing centers.

3. HIV self-test kit: A home-based HIV test kit which includes the option of calling the National AIDS Helpline for assistance.

The final component of Project M is the HIV self-test kit, which is currently being developed. The hope is that this kit will enable South Africans to perform an HIV test in the privacy of their own homes, with the option of calling a counselor at the National AIDS Helpline via mobile phone.

Deconstructing the Success of the Mobile HIV Awareness Campaign Using SocialTxt

Project Masiluleke has shown great success with the SocialTxt campaign, resulting in a striking improvement to an existing but formerly under-utilized government HIV/AIDS resource. Through mobile technology, iTeach and its collaborators successfully set up a large-scale public health messaging campaign that resulted in increased call volume.

The downstream challenge is ensuring that the staff at the helpline is able to deal with the increased number of calls. Presently, there are dropped calls due to the inability of staff to field the growing number of calls. The helpline has been able to handle the increased call volume well, but to ensure high quality service, Dr. Krista Dong believes the following gaps need to be filled.

  • There needs to be regular, high-quality training of staff. (The initial training was provided by iTEACH.)
  • The service needs to have increased coverage during evenings and weekends.
  • The staff needs to have better knowledge of available local resources to more effectively make referrals for callers.

Mobile projects remain dependent on securing support from mobile operators for sustainable projects. The Prakaelt foundation was involved in negotiating the messaging space with MTN for the SocialTxt campaign. Initially, Project M partnered with Vodacom, but when it came to donating messaging space, they refused. MTN stepped up to the plate when they were asked and have renewed their donation now for the third year. Of the millions of daily PCM messages that are sent in South Africa, MTN guaranteed 5% of its free messaging space to the helpline.

Said Neethling,

“It is always tricky to work with mobile network operators, but very crucial in having a cost-effective, sustainable solution in place. We now work very closely with MTN and Vodacom, and as a result of the good press and results we have shown through Project M, we were able to go back to Vodacom and are now utilizing their PCM platform as well.”

By partnering with both Vodacom and MTN, Project M garnered enough support to kick off a massive HIV awareness campaign in October 2010. So what was key in forming these relationships? Neethling said it was demonstrating a profitable business case.

“You have to show them the business case of supporting your project. They are about making money. If you can show how your project, even though it may include zero-rated services, can generate income for them, they would be happy to support it.”

Despite the success of PCM messages, Dr. Dong explained that calls made from the mobile phone to the helpline are not free. As soon as people hear they will be charged, they drop the call. This unfortunately contributes to a significant drop rate among mobile users. Currently, only calls from a landline to the helpline are toll-free. Dr. Dong explained that one thing that is desperately needed is a toll-free line to the helpline for mobile phone users.

Implementation and Evaluation of TxtAlert, the Appointment Reminder System

Neethling described the process of implementing the TxtAlert system as a tedious one, but well worth it, considering the encouraging observations at the Themba Lethu clinic in Johannesburg.

“A paper-based system, if there is one, can be a difficult means to trace whether a patient has actually defaulted on their clinic appointments. If they don’t have a mobile phone, but only a landline number or an address, in some cases, clinics might actually send out field workers to patients’ houses to try and find them. But in many cases, they might not find people at the house, and a lot of time and resources are wasted in this way.”

At the Themba Lethu Clinic, there was already an electronic MRS in place, which allowed The Praekelt Foundation to pilot TxtAlert. An automated tracking mechanism allowed service providers to flag patients who frequently default on appointments and to take the necessary follow-up action. (For clinics that do not have a MRS, the TxtAlert system comes with a basic booking tool which is open source and available to NGOs at no cost.)

To get the system up and running, patients were asked as they registered at the clinic if they would like to opt in for the appointment reminder system. (It is required by law to ask for consent before collecting phone numbers and a patient’s clinic appointment information.) Neethling said they turned to patients already taking ARVs at the site to assist in convincing patients to opt in. For a site with 10,000 patients, it took about three months to get all the patients registered into the TxtAlert system.

In an evaluation of the system, Neethling and colleagues found that almost 80% of patients voluntarily opted to receive the SMS alerts, and between May and August 2008, TxtAlert saw a steady opt-in rate of 180 patients per month.

Besides the initial effort of registering patients, clinic staff have to cross-check the patient’s number at every appointment to make sure the number is the same as listed on the TxtAlert system. Often, in South Africa, people may be using two to three SIM cards. During the pilot, patients started to rely on the alerts so much that they actually were less likely to switch SIM cards.

Additionally, patients started to interact with the TxtAlert system to reschedule appointments. In the evaluation report, Neethling and colleagues found that “an average of 51.9% of all “Please Call Me” messages received by the TxtAlert administrator led to the successful rescheduling of patient appointments.”

Interestingly, when the TxtAlert system failed (due to technical glitches) The Praekelt Foundation learned that patients actually started to default again. Neethling believes this demonstrates that patients really do rely on the SMS reminders.

HIV Self-Test Kit: Remote Consultations for HIV Testing

The mobile component in the HIV self-test kit includes the option of calling the National AIDS Helpline for further guidance and support. Speaking to a counselor over the phone reduces the perceived stigmatization that hinders people from going to a clinic.

Although still in the conceptual phase, feedback from focus groups of high-risk men consistently confirmed they felt empowered by the ability to test privately, are eager to have access to self-testing, and prefer mobile interactions over face-to-face counseling.

According to Dr. Dong, there is potential to expand the role of the staff at the helpline in this component of Project M. Her vision is that counselors could guide the tester through the process, as well as provide pre and post test counseling. Said Dr. Dong,

“Effectively, counselors could provide all the same services that existing facility-based services offer, but now remotely. This allows for real scale, confidentiality and empowerment of persons who want to test when and how they choose.”

Get Schooled on m-Health Through iTeach's Experience

The majority of HIV-associated death in Africa is often caused by TB. Despite reporting 100% directly observed therapy (DOT) coverage in all 9 provinces, South Africa has one of the worst national TB programs, lowest TB treatment completion and cure rates, highest TB co-infection burden globally, and a growing epidemic of drug-resistant TB. iTEACH is currently piloting two new m-health interventions that specifically address TB treatment compliance.

TxtAlert-TB: SMS-based Clinic Appointment Reminder System for Tuberculosis Patients

Patients with TB often default on their 6-month treatment courses, take pills irregularly, or stop at the first signs of feeling better. Dr. Dong suggested that this is a result of ineffective patient preparation, poor linkage of TB services, and insufficient staff to provide DOT. Building on the TxtAlert system for HIV clinic appointment reminders, iTEACH will be launching TxtAlert-TB, a monthly TB treatment reminder system jointly developed with The Praekelt Foundation.

TxtAlert-TB will send personalized text messages to the mobile phones of patients receiving TB treatment. Unique to the TxtAlert-TB is that patients will have the option of choosing a “celebrity treatment buddy” from whom their treatment reminders will come from. Although iTEACH could not comment specifically on the efficacy of using celebrity endorsement, musicians from Ghetto Gruff are widely recognized in South Africa and may add value in encouraging patients to stick to their treatment regimes.

SMS Connecting DOTs: Tracking TB Services From Diagnosis to Cure via SMS

Currently, iTEACH is developing another m-health project called SMS Connecting DOTs (SMS C DOTS) that will monitor treatment adherence of 1000 patients. Using starting funds from a grant provided by the Mulango Foundation, iTEACH is working with FrontlineSMS to develop the technology that will track TB services along the continuum of care from diagnosis to treatment completion and cure. iTeach anticipates this program will have a dramatic impact on TB outcomes.

Outlined below is the workflow that will be managed via SMS:

  1. Patients will be enrolled in the SMS C DOTS program at the hospital after being diagnosed with TB.
  2. An SMS C DOTS staff member will collect the baseline health information on a mobile phone.
  3. This staff member will send an SMS to both the clinic and to a single CHW who lives in the same area as the patient.
  4. Both the clinic and CHW will acknowledge receipt of this information.
  5. The CHW will visit the patient.
  6. The CHW will send an SMS back to the hospital confirming the home visit has been made.
  7. The patient will go to their local clinic and pick up with monthly TB medication.
  8. An SMS C DOTS staff will send an SMS back to the hospital confirming the patient showed for their visit. If they do not show within 1 week, they are deemed “high risk” and the CHW will be alerted to make another home visit and continue with monthly visits.
  9. The above steps continue every month for a 6 month treatment period.

Challenges of Plunking a Mobile Phone System in a Fragmented Public Health System

Both the SMS C DOTS and TxtAlert-TB projects are being piloted in 4 out of 17 clinics within the Edendale Hospital catchement area. Dr. Dong explained that at the 4 clinics, there almost 300 CHWs, primarily volunteers or workers compensated in different ways. In general, CHWs serving this area are not seamlessly integrated within the public health infrastructure, which poses challenges in implementing a project that heavily relies on their work.

Understanding existing capacities is an important task before implementing any mobile project. For example, for its new m-health endeavors, iTEACH completed a preliminary assessment that revealed baseline knowledge of TB amongst the CHWs was almost non-existent. Dr. Dong said that only one out of the 300 CHWs they are currently training was aware of the National TB Guidelines.

iTEACH also found that a systematic linkage between CHWs and the clinics is weak. In fact, the Department of Health was unaware of the CHWs that were serving the communities, and as a result, it had not already engaged them in existing TB services in any capacity. Not to mention, the CHW sponsoring organizations had not established consistent contact with the clinics, contributing further to the problem of a disconnected healthcare network.

The aim of SMS C DOTS is to link the various players in the healthcare network through information whilst working within the existing public health infrastructure. Said Dr. Dong,

“SMS C DOTS is very much embedded in public health services, as the enrollees are patients diagnosed with TB at a government hospital and being down-referred to a government clinic… The added huge benefit to the existing failing TB service is the systematic linkage of CHWs to further support TB services. Basically, SMS C DOTS is acting as a net or links.”

The SMS C DOTS program was designed to utilize both iTEACH hired staff and CHWs, whether they are volunteers, stipended, or employed. Already iTEACH is seeing positive trends:

“We are currently seeing very high attendance rates at our training, because the CHWs are truly hungry for knowledge and understand that they are currently not highly regarded within the community because of their lack of expertise.”

The benefit for CHWs is knowledge through free training, improved care within their communities, and an increased likelihood of qualifying for other work.

Critical Success Factors of iTEACH

Recognizing the experience iTEACH has accrued over the years, we asked what factors it believes are important for success, beyond the basics of having clear goals and action plans.

To summarize, Dr. Dong said that essential factors for a sustainable, sucessful m-health project include trust, simplicity, work load reduction, an understanding of the setting and challenges, and a realistic exit strategy.

Build trust

Relationships of trust with the target staff and with governments is key to a sustainable project. According to Dr. Dong, members of the health care community they have engaged with are very receptive to the use of mobile technology in HIV/AIDS and TB work -- as long as the projects and technology are explained and concerns regarding data security and confidentiality are honored.

“Relationships of trust are very important in order to introduce projects and far more important to ensure there is full buy-in and that the projects will be sustained after the implementing NGO decides to exist.”

The SocialTxt campaign partnered with the government to improve the use of an existing government service nationwide. There was minimal difficulty in linking to the National AIDS Helpline because the iTeach staff had been serving and assisting the Department of Health for the last 10 years. As a trusted NGO, there was significant trust and strong working relationships that were already formed, allowing iTEACH to pilot this initiative and others in government facilities, both clinics and hospitals, without bureaucratic delays.

Said Dr. Dong,

“Things always go much slower working through governments, than they would if we were happy to conduct our projects privately, in parallel to public health services. However, we specifically wanted to build capacity within government services, because this is where the majority of patients in need access their health care.”

iTEACH’s SMS C DOTs project will monitor government mandated statistics to ensure integration into existing public health services. The patients that will be enrolled in the pilot are diagnosed with TB at a government hospital and then referred to a government clinic. The mobile phones will simply link the various information flows within the system.

Keep it simple

For a sustainable m-health projects, ensure that the mobile technology is very simple to operate, with minimal need for ongoing maintenance. For example, if regular IT support and replacement of handsets and routers is required, then sustainability is unlikely. By keeping it simple, health practitioners can continue to focus primarily patient care, without the technology needing too much maintenance.

Reduce the work load

Technology based initiatives have to demonstrate a reduction in work-load of all staff to gain support. Dr. Dong offered advice on this point:

“Buy-in requires that all levels of staff that interface with the system perceive a direct benefit from the system. If they do not, it is unlikely that they will play their role effectively. It is best to have an intervention that has huge benefit to all involved, whether reduction in work load or personal reasons, as in their contribution benefits their community.”

Understand the setting and the challenges

For projects with multiple partners, at least one partner (though all are preferred) needs to have a thorough understanding of the setting and challenges, including political, cultural, financial, personal/individual, and technological.  Additionally, at least one partner should have a proven track record in the pilot setting (or similar), and effective working relationship with all stakeholders, from the higher level government to the frontline on the ground (clinics/community).

Collaborations involving more than two partners can be challenging, especially if they are not all local. Challenges are primarily in coordinating conference calls and engaging all partners over telephone is not ideal. 

Develop a realistic (and timely) exit strategy

For a sustainable project, the exit strategy needs to be realistically assessed early on.

Dr. Dong suggested some questions that should be asked in order to realistically evaluate the sustainability of a project after (or if) the main NGO/implementer leaves. Can (or is) the project be run by existing government employees? Can (or will) the government hire staff for it? Will the NGO or private organization provide all needed staff?

In summary

Using mobile technology, iTEACH and its collaborators have been able to reach out to patients, strengthen existing public health services, and create necessary linkages and feedback mechanisms to connect the various health services for TB and HIV/AIDS. Project Masiluleke is an example of a collection of well-coordinated mobile projects that seek to address several challenges in the public health system, all of which have demonstrated encouraging results.

iTEACH and The Praekelt Foundation were recent recipients of the Impumelelo Gold Medal for the collection of initiatives that make up Project M. The project was initially borne out of a collaboration facilitated by Pop!Tech, but now operates independently. We thank Leetha Filderman, Director of the PopTech Accelerator for facilitating our conversation with iTeach and The Praekelt Foundation. We also thank Marcha Neethling and Dr. Krista Dong for making themselves available to give deep insights on all aspects of the project.

Basic Information
Organization involved in the project?: 
Project goals: 

iTEACH identified four links in a chain of care essential for HIV and TB treatment success: [1] Effective awareness, [2] Scale-up of early HIV testing, [3] Early anti-retro viral treatment (ART) initiation, and [4] Support for ART and TB treatment adherence. In October 2007, Project ‘Masiluleke’ (Zulu for ‘to give wise counsel’ or ‘lend a helping hand’) or ‘Project M’, was launched to address these challenges with a chain of interventions designed for replication and scale. Project M is a collaborative effort, lead by the iTEACH NGO, along with a diverse set of partners (The Praekelt Foundation, Frog Design, Pop!Tech, MTN and Vodacom, LifeLine Southern Africa, Ghetto Ruff Records and the National Geographic Society).

Brief description of the project: 

Briefly, each of the three components of Project M addressed a specific barrier for people seeking care and for health care workers managing care.

1. TxtAlert: Reminders for HIV clinic appointments were sent to patients’ mobile phones as text messages. Showing up to your HIV clinic appointment largely correlates with anti-retro viral treatment (ART) adherence. In June 2007, TxtAlert, an SMS-based automated ART clinic appointment reminder system was piloted in partnership with Right to Care at the Themba Lethu Clinic, the largest privately funded ART treatment site in South Africa. TxtAlert is a web service that is linked to the electronic medical record system.

Clinic appointment reminders are sent to patients who are receiving ARVs, both two weeks and one day before their scheduled appointments. Text messages are also sent one day after the appointment to either thank the patient for coming or to alert them of a missed appointment and encourage rescheduling.

2. SocialTxt: A mass mobile messaging campaign was launched to raise HIV awareness, and directed people to the National AIDS Helpline. In October 2007, a mass text message HIV awareness campaign was launched with the so-called SocialTxt technology developed by the Praekelt Foundation.

One million text messages were sent everyday to mobile phone users throughout South Africa that contained key information about HIV and TB and directed mobile phone users to a free National AIDS Helpline.

The campaign resulted in an impressive 300% increase in calls to the helpline, from 1000 calls a day to 3000-4000 calls a day. Since the project launch, over 685 million PCM messages were sent to the helpline. Upon receiving the PCM message, staff at the helpline, who are HIV patients themselves, offer counseling and direct callers to HIV and TB testing centers.

3. HIV Self-Test Kit: Currently in development is a home-based HIV test kit that has the option of calling the National AIDS Hotline for guidance and assistance. The hope is that this kit will enable South Africans to perform an HIV test, in the privacy of their own homes, with the option of calling a counselor at the National AIDS Helpline via cell phone.

Target audience: 

Project M is being piloted in KwaZulu-Natal (KZN), which is the South African province with the highest HIV burden and poorest TB treatment outcomes. The project will be managed from Edendale Hospital, which is located in one of the hardest hit districts in KZN (Umgungundlovu) where 60% of pregnant women test HIV+ and 200 new cases of TB are registered every month. Edendale serves an exclusively Zulu population of 1 million persons, where unemployment is estimated at 60% and most are living in abject poverty.

Edendale was selected specifically because it is replete with challenges faced by large government hospitals at the epicenter of the HIV and TB crisis. Success in this setting would suggest that replication and scale-up in similar underserved communities is feasible.

Detailed Information
Mobile Tools Used: 
Length of Project (in months) : 
3
Status: 
Ongoing
What worked well? : 

1. TxtAlert: HIV/AIDS Clinic Apppointment Reminders

  • 80-90% opt-in rate was observed at the clinics.
  • Patients started to rely on TxtAlert reminders so much so they were less likely to switch their mobile phone number.
  • Patients started to interact with TxtAlert system via "Please Call Me" messages to reschedule their appointments in advance.
  • Patients currently on ARVs at the pilot site assisted in encouraging patients to opt-in for the SMS alerts.

2. SocialTxt: Mass mobile campaign to raise HIV awareness and direct people to the National AIDS Helpline

  • iTEACH offered relevant clinical and cultural expertise for the content of the SocialTxt SMS messages.
  • The project increased the number of calls by 300% to the National AIDS Helpline.
  • It leveraged the massive uptake of "Please Call Me" messages in South Africa for a large public health messaging campaign at no cost to people.

3. HIV Self-Test Kit, with option of calling via mobile phone to the Helpline

  • Focus group discussions revealed people prefer telephone interactions to seek counseling and HIV testing support, as opposed to in-person consultations.
  • Mobile phones address the issue of perceived stigmatization at clinics, which deters people from getting tested.

 

What did not work? What were the challenges?: 

1. TxtAlert: HIV/AIDS Clinic Apppointment Reminders

  • The process of collecting and registering numbers of patients was tedious, though outcomes show it was well worth it. This process took about 3 months.
  • There is a need to confirm at each appointment that the patient's number is the same as that listed on their system. Many people switch between 2-3 SIM cards.

2. SocialTxt: Mass mobile campaign to raise HIV awareness and direct people to the National AIDS Helpline

  • There are challenges in securing mobile operator support, though this changed once a profitable business case was demonstrated.
  • Counselers at the helpline need more training to deal with the increased volume in calls and to ensure the quality of service is not compromised.
  • The service needs to have increased coverage during evenings and weekend.
  • Counselers need better knowledge of local resources to make effective referrals.
  • A toll-free line is needed so mobile phone users can call without charge. The Helpline is toll-free only if calls are made via landlines.

 

Project Masiluleke: Comprehensive HIV Care With Mobiles Locations

You need to upgrade your Flash Player

Post new comment

The content of this field is kept private and will not be shown publicly.
  • Allowed HTML tags: <a> <em> <strong> <cite> <code> <ul> <ol> <li> <dl> <dt> <dd><p><br> <b><i><blockquote>
  • Lines and paragraphs break automatically.

More information about formatting options