This article is a review of a technology intervention designed in India for improving outcomes in Indian patients with HIV-AIDS.
Over the last 2 decades, the global community has responded with speed and unison to address the growing HIV menace. The disease, though not curable, is now manageable to a great extent and is even considered more a chronic illness than the death sentence it was considered a few decades back. AIDS-related deaths have fallen by 45% since the peak in 2005.
Despite the improvements, an estimated 36.7 million people live with the Human Immunodeficiency Virus (HIV) worldwide today, many of them in developing countries. India has and about 2.1 million people living with HIV / AIDS (PLHA) about 68,000 annual AIDS-related deaths.
Improving outcomes for PLHAs
Much research has gone into seeking out the reasons why, despite availability and affordability of treatment, there are still so many AIDS-related deaths. This article is a review of a series of research papers published by Prof Anirudha Joshi from IIT Bombay. The research focused on the reasons for poor outcomes as well as potential technology interventions to improve outcomes in HIV/ AIDS patients.
Prof Joshi’s research indicates that the challenges faced by PLHA are many and varied. Severe depression, low literacy, being unemployed, high CD4 count, hospitalisation, side effects, and pill burden were some of the factors found to be associated with lower adherence. Though costs of ART and financial status of the patient might be important reasons for discontinuing medication and poor adherence in some cases, giving away free medication has not promoted adherence to a great extent either.
Ensuring therapy adherence, vital for the management of HIV-AIDS, requires an “adherence loop, wherein the patient believes that he or she has a disease, to develop a mental model of the condition and the therapy, to know what she needs to do, and to act and to have the ability to act. Other studies corroborate the importance of patient education, social and emotional factors. The patient’s knowledge about side effects, belief towards ART, having developed reminder tools for taking medication, and patient’s trust and confidence in the doctor is believed to boost adherence. A positive correlation between family support and adherence is found, though family support is usually less in the case of PLHA because of the social stigma involved.
How Information Technology Can Help
The recent uptake of mobile phones in India has been dramatic, cutting through several layers of society in an unprecedented manner. It is believed that there are 2.9 billion non-internet mobile users (NIMU), or about 45% of the world population. In developing countries like India, there are 65% NIMU with the mobile phone penetration at 74%. Mobile phones are primarily used for voice calls.
Based on user studies with PLHAs, the following areas were identified as vital to supporting patient experiences:
- Daily pill-taking reminders
- Tracking their adherence.
- Reporting side-effects associated with Antiretroviral therapy (ART)
- Looking up medical advice.
- Developing a conceptual understanding of HIV and ART
- Contextual repetition of new information for better retention
- Enabling anonymous socialization with other PLHA
- Safe, secure communication that does not cause accidental disclosure.
TAMA- A Holistic, Technology-based Intervention
Funded and developed by Janssen Global Public Health, Dr. Anirudha Joshi led the evaluation of a technology intervention named TAMA (Treatment Advice by Mobile Alerts) to complement and expand the care provided by HIV clinics. TAMA had an Interactive Voice Response (IVR) interface for patients and a web-interface for clinics. The solution aimed to complement the ongoing efforts in the clinic and to improve the efficiency of the clinic, secure health records, optimise the time of the PLHA in the clinic, and manage follow-ups.
For PLHA, TAMA provided daily pill-time reminders and adherence feedback, relevant information, medical advice for common symptoms, and facilitated anonymous socialisation amongst PLHA. The system was protected with a PIN to avoid accidental disclosure. TAMA was evaluated in a real-life scenario with low-tech-savvy users, in a low-resource setting, by being deployed in five HIV clinics in four large cities and one small town in India. The locations were in high-prevalence states and represented the diversity in languages and types of clinics.
The overall qualitative feedback on TAMA was positive. The intervention was found to be usable even by people with very low technology skills. Participants felt more connected to their caregivers and a majority stated that they would be willing to pay for such a service. It was widely felt that TAMA would be missed after the study closure, and the PLHA would need to seek alternative arrangements such as mobile alarms.
Technology-based interventions are increasingly demonstrating support in the superior management of care for HIV patients. The TAMA platform has demonstrated that voice-based technology interventions could be particularly suitable for countries like India with many languages and several low-literate users.
Design Opportunities for Supporting Treatment of People Living with HIV / AIDS in India; Anirudha Joshi et al, INTERACT 2011, Part II, LNCS 6947, pp. 315–332, 2011
Healthcare IVRS for Non-Tech-Savvy Users; Rashinkar, Joshi et al, LNCS 7058, pp. 263–282, 2011
Supporting Treatment of People Living with HIV / AIDS in
Settings with IVRs; Anirudha Joshi et al, CHI 2014, One of a CHInd, Toronto, ON, Canada