Mobile links mothers, medicine

For an HIV-positive, pregnant woman in Africa, a simple SMS message can often make the difference between having a healthy baby and becoming another statistic.

Across the developing world, mobile and ICT-based healthcare initiatives are helping to prevent mother-to-child transmission (MTCT) of HIV, by providing emotional and logistical support to women.

According to the World Health Organisation, there are 1.4 million pregnant women worldwide who are HIV-positive. Of these, 1.3 million live in sub-Saharan Africa, and without any interventions, 40% will have HIV-positive babies.

This means more babies are born with HIV in a single clinic in Africa each year than in the US, Canada and England combined. Yet, the medication needed to prevent transmission is widely available. Studies have shown that a single dose of Nevirapine given to a mother during labour, and a dose to her infant shortly after birth, can cut transmission risk nearly in half.

The focus on MTCT prevention is growing both locally and globally. In November last year, KwaZulu-Natal MEC for health Dr SM Dhlomo stressed the importance of maternal and newborn healthcare in SA, adding that implementing and monitoring new technologies are critical components of prevention and treatment.

In 2010, the UN secretary-general introduced the Global Strategy for Women and Children's Health, which for the first time identified the role ICT can play in accelerating progress toward safer pregnancies and births.

The UN notes that maternal healthcare is heavily dependent on access to accurate and timely information, which enables health workers to respond faster and deliver better services.

On this front, mobile technology is a rising star in the sector, as a tool that is both powerful and relatively accessible in most emerging countries. The International Telecommunications Union estimates nearly 70% of the population in the developing world had access to a cellphone, which can provide relevant, life-saving information, on a device people have with them all the time.

Increasingly, cellphones are playing an additional role by acting as a channel through which healthcare workers can offer support and guidance.

An initiative called Project Kopano, for example, aims to support MTCT prevention programmes by giving women access to mobile phones as a way to communicate in a group about issues affecting them during their pregnancy.

The three-month pilot was run in Pretoria last year by the SHM Foundation - the charitable arm of London-based consulting house SHM Productions - in partnership with the Yale School of Medicine and the University of Pretoria.

It follows the successful Zumbido project in Mexico, which aimed to increase adherence to medical treatment by encouraging social interaction via group SMSes.

With a quarter of a million text messages sent, Zumbido showed cellphones help address the social isolation which often leads to poor medication compliance, says SHM Foundation director, Anna Kydd.

“We began thinking the model could work very well in SA, where mobile penetration is very high.” It was a small pilot, with only seven participants in total, but it demonstrated the potential of such programmes, adds Kydd.

“A lot more has to be done to provide social support for women with HIV. Even if physical support groups are available, women who were involved said they never attend these because they had to take time off work,” she notes.

“Mobile is a very intimate form of communication. Having a phone on you is appealing for many who find face-to-face interaction more difficult,” Kydd explains.

The SHM Foundation and its partners are looking for ways to expand the pilot and test the model further. Kydd says project developers are looking at the level of medical information provided and getting clinicians involved in future. “There will be a high evaluation component. We really need to prove that social support plays an important part in people taking their medication.”

Jennifer Makin, a senior researcher at the University of Pretoria involved in the project, says previous study results indicate that attending support group sessions does make a difference. However, few participants are actually able to attend the groups due to work demands, confidentiality issues, and transport and time costs.

“This is what made the concept of a 'virtual' support group appealing,” says Makin.

“Every mother you miss could be a child who gets HIV.”

Gene Falk, co-founder, Mothers2mothers

She notes that the biggest problem facing HIV-positive pregnant women is the lack of information, as well as misinformation, on basic pregnancy issues. “The myths and stigma that still surround HIV leads to old wives' tales being integrated into people's consciousness.”

Sicebele Sibiya, a mentor with the Kopano Project, says most of the women wanted to meet the mentors in person first, but thereafter were comfortable getting text messages and reminders from them.

“It helped mothers to open up and was a platform for them to talk about everything, and to give them information on how to keep healthy when pregnant,” Sibiya explains.

Having instant access to a trusted source also put their minds at ease when physical talks were impossible, she notes. “It helped to have the phones because late at night when the women wanted to talk or had questions they didn't have to travel all the way to do that.”

However, Kydd adds that while mobile-based healthcare has generated a lot of attention, it's difficult to know what exactly it's capable of doing. “There's a lot of buzz around it but a lot more needs to be done to understand the value of impacts.” She says an evaluation report on the study will be completed in the next few months, which will shed more light on the issue.

“Ideally, I'd like to see that everyone who is diagnosed with HIV has this kind of facility available, that it's almost like a prescription - that you need counselling and support and day-to-day communication,“ says Kydd.

Technology is making itself useful in other areas too. Mothers2mothers (m2m), a, local NGO focusing on MTCT prevention, recently partnered with HP to implement database, cloud and mobile services to digitise thousands of paper-based patient records.

This will make the records accessible and easy to share across the m2m network, helping to provide more effective support services to pregnant mothers.

Mothers2mothers was founded by Gene Falk and Dr Mitch Besser in 2001, after Besser realised that providing the medication for MTCT prevention didn't do any good if women don't return to the clinic and take follow-up measures.

“Many women he spoke to wouldn't return, so he realised the best medicine in the world was not going to help unless there was some way to reach women on another level,” explains Falk.

“When the doctor tells a woman she's HIV-positive, all she hears is 'I'm going to die and my baby is going to die'. With m2m, you can say, 'Here's a woman from the community and she's HIV-positive and had a healthy baby and can help you. It changes the game instantly.”

Besser and Falk started thinking about how to scale the idea successfully and sustainably, as something that could be used anywhere where HIV and pregnancy occurred. “We realised the solution was incredibly straightforward and not unique - it's just one woman talking to another woman in her moment of trauma. But every mother you miss could be a child who gets HIV.”

Mothers2mothers now operates in 700 locations across nine countries in Africa, counselling more than 1.5 million women. Falk says the database and related technologies from HP will help modernise the paper-based system to meet this high demand more efficiently.

“Mothers2mothers is a low-tech solution and we don't want to change that, but it also requires a high-level solution to deal with the back-end. We see 300 000 unique clients a year and have to keep extensive records for all of them, which are all on paper at the moment,” Falk explains.

“To take it to the next level, we need technology to see what works and what doesn't, what's changing, how fast and why. If one location is running into problems, we want to catch it before it's repeated in other areas. It was one thing when we were just in Cape Town - then we could see everyone. Now with virtual tools, we can communicate as if we're still a small community.”

Falk says the overall objective is to work towards the UN vision that by 2015, there won't be any places where women who are HIV-positive pass it on to their children. “Our goal is the virtual elimination of mother-to-child transmission by 2015 and the only thing that's preventing us from doing it is wealth and will.”

Falk adds that we're only scratching the surface of what mobile-based healthcare is capable of, with health delivery being “the last bastion of IT transformation”.

According to Falk, while there are massive challenges in the developing world, the upside is even bigger.

“Mobile potential is huge, and when it's cracked, it will be transformational.”