The last decade has seen a rise in the use of mobile phones in developing countries. In the paper, Supporting Treatment of People Living with HIV / AIDS in Resource Limited Settings with IVRs, Anirudha Joshi, et all investigated whether it is possible to support the treatment of People Living with HIV / AIDS (PLHA or PLWHIV) with the help of mobile phones that they already own.
A technology commonly available on all mobile phones is interactive voice response (IVR). However, IVRs are not normally associated with personal, frequent-use applications. They designed an IVR application called Treatment Advice by Mobile Alerts (TAMA) for the PLHA, and a web-interface for the clinician.
HIV Treatment Advice by Mobile IVR Alerts
As a pilot study, they deployed TAMA for 12 weeks with 54 PLWHIV in five well-known HIV clinics in four large cities and one small town in India (Mumbai, Pune, Bangalore, Chennai, and Chirala). The locations were selected in high HIV prevalence states and to represent the diversity in languages and the types of clinics.
They designed TAMA to complement and extend the care provided by the HIV clinics. TAMA:
- Provides pill-time reminder calls to PLHA,
- Allows PLHA to look up recommendations for common symptoms,
- Plays short informational messages called “health tips”
- Reminds PLHA about appointments
It is important that a PLWHIV is adherent to her ART regimen and takes her doses on time. TAMA calls the PLWHIV to remind her to take her pills. The PLWHIV can choose to get daily or weekly reminder calls.
If the PLHA is not feeling well, she can call TAMA to diagnose her symptoms. Depending on the PLHA’s answers, TAMA makes one of four possible recommendations:
- ignore the symptom for now but discuss it with the doctor on the next visit,
- take x over-the-counter medication for y days,
- a lifestyle change,
- or meet the doctor immediately.
In each case, TAMA also advises on whether or not to continue ART. In critical cases, TAMA connects the PLHA directly to a doctor for further management.
TAMA provides information in a question and answer format in short chunks of about 30 seconds each on demand. They call these “health tips”. In the version used in the study, TAMA had 32 such health tips related to HIV, ART, adherence, tracking CD4, nutrition, family, children, disclosure etc.
PLHA are often lost to follow up by clinics. Based on the last clinic visit date, TAMA reminds the PLWHIV to fix up an appointment for the next clinic visit. Once an appointment is fixed, TAMA reminds about the appointment itself.
In this study, TAMA was made available in 6 languages (Marathi, Hindi, Tamil, Telugu, Kannada and English). The scripts of TAMA were written in a conversational style. Translations (especially symptoms) were carefully localised and reviewed. Apart from languages, TAMA was also localised to clinics. This was done to leverage the trust that the doctors enjoy with patients.
Patient Feedback on IVR for PLWHIV
The overall qualitative feedback on TAMA was very positive. TAMA was found to be usable even by people with few technology skills. Many participants, and particularly those who had no other support system, liked TAMA.
They felt that through TAMA someone was keeping track of their treatment like a family member, taking care of them, and giving them knowledge, advice and counselling. Participants consistently agreed with the statement “When I use TAMA, it feels like I am in touch with my HIV clinic”
Many participants said that their adherence to ART regimens had improved because of TAMA. Some participants said they now were more “serious” about adherence than earlier. TAMA helped people develop good adherence habits. Participants strongly agreed with the statement “TAMA helps me take my medicines on time”
Though many users did have TAMA’s toll-free number “written down somewhere”, only one tech-savvy participant had saved it in his phone. Most preferred to call back the same number that TAMA called from (a toll number).
Surprisingly, participants found the weekly “best call time” calls more intruding than the daily pill-time reminders. By hindsight the reason is clear. The daily pill-time calls are actionable (“take your pill now”) and fit into a routine, and hence do not intrude. While the weekly calls remind about the importance of adherence, they are pedantic. They do not actually help adherence, and hence are found intrusive.
IVR Mobile Alerts Can Be Used With PLHA
IVRs can reach a large majority of human population today and are particularly suitable for countries like India with many languages and several low-literate users.
IVRs are known for poor user experience and are usually associated with pesky customer service calls. However, in a study in five HIV clinics with 54 PLHA for 12 weeks they found that it is possible to improve adherence and build a deeper relationship between PLWHIV and the clinic using a holistic, well-designed, localised, personalised IVR application.
This study shows that TAMA was usable and works in real-life settings. The quantitative feedback reassured them about the appropriateness of a broader design approach to TAMA. The qualitative interviews unearthed the insights of why things work, what can be improved, what failed, and why.
Lessons Learned for Other Health Uses
While some of these lessons are specific to TAMA, they found that many of these can be generalised to other frequent-use IVR applications in the healthcare domain.
- They found that a 4-digit PIN on IVRs is usable and provides sufficient perception of security to HIV patients. It should be sufficient for most other ailments.
- They found that a daily pill-time re- minder call is not considered intrusive as it is actionable, while even a weekly call may be intruding if it is pedantic.
- Their 30-minute duration between follow-up calls turned out to be just right for the users.
- Patients suffering from serious health conditions are hungry for authenticated, personalised, and localised information beyond what they receive from clinicians and caregivers.
- The delivery of such information needs to fit their information seeking behaviour. Pushing information to them may be better than asking them to pull it.
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