This work was carried out as a part of my Masters Thesis Project at Department of Design, IIT Guwahati under the supervision of Professor Keyur Sorathia.
Gandhian Young Technological Innovation Award for 2014, under the category - MLM (More from Less for Many) for the innovation by Techpedia, a SRISTI Initiative.
Media coverage in The Telegraph(national news) here.
The results of the study has been published in various international conferences:
"Findings and analysis of qualitative user study of tuberculosis patients in rural Assam, India", Seth, Himanshu, and Keyur Sorathia, Intelligent User Interfaces for Developing Regions: Users, Problems and Technologies, IUI4DR Workshop in Conjunction with IUI 2013, Santa Monica, California, USA on 19 March 2013.
"Parichaya - A Low-Cost Device to Increase Adherence Among Tuberculosis Patients in Rural Assam", Himanshu Seth, Keyur Sorathia, Asia Pacific Computer Human Interaction 2013, Bangalore, India, September 24-27, 2013.
Context and Challenge
Tuberculosis is world’s leading cause of death from a single infectious disease and India contributes to one-fifth of the global burden of Tuberculosis. In 2009, out of the estimated global annual incidence of 9.4 million TB cases, 2 million were estimated to have occurred in India.
The antibiotics for curing TB are available free of cost in India but still Kamrup (a district in Assam state of india) registered 8% growth in “suspects examined per smears positive case diagnosed".
I was alarmed at this finding. I decided to use the colocation of my design college in Kamrup district to my benefit by deep diving into the problem of increasing TB cases and better understand the reason behind these facts.
In a preliminary exploration of the design space, I with the help of my professor and friends, carried out a field study of TB patients and health workers in rural areas of Assam.
I started out the research with the following goals:
1. Investigating problems faced by TB patients
2. Understand existing situation of incoherence of DOTS (directed Directly Observed Treatment Short-Course)
3. Patient-professional relationship
4. Access to diagnosis and treatment
5. Social and family dynamics, technology usage and Literacy among the TB patients
The setting (demographics and participants)
The study consisted of 15 participants (comprising a mix of healthcare workers, ASHA members, patients and family members) at 3 community health centers and 1 sub-center.
The study pointed out some interesting opportunities for ICT intervention. For example:
1. Patients are advised small breaks of around 5 minutes, prior to the ingestion of every pill thereby resulting in Idle waiting time at health centers.
(actionable insight) I sensed an opportunity for indulging the patients in serious information knowledge sessions for spreading awareness about the disease.
2. No-low literacy level among the patients and their family members and Lack of information mediums in the health centers.
(actionable insight) Introducing interventions for increasing information awareness about the disease, ideally using regional languages.
3. Role of peers/social groups and the social importance of ASHA members, Lack of basic knowledge about the disease, Insufficient time with ASHA members to supervise the ingestion of medication, Patients have a mobile phone, however are not well versed with its functions and Phone is used as a shared resource.
(actionable insight) The intervention should not use mobile phone as a medium for dispersion.
Studying existing solutions to understand their strengths and shortcomings is a vital part of my design process. I did a thorough study of the existing interventions in the field of TB. Following are some of the problems i had with them:
1. Devices like U-Box allowed patients to self administer the medication by setting alerts and reminding them about the medication. In india however, the patients are allowed to consume the medication under supervision only. Also, such solutions dont take advantage of the already built support chain of social workers and government. In my opinion, any design which honours the existing social relationships (in rural areas) and acts as a facilitator of change has a greater probability of having impact compared to systems which replace them.
2. Solutions like eComplaince etc. use a combination of biometric and mobile technology to enhance TB treatment. Although they focus primarily on therapy monitoring, they Dont, however focus on increasing information awareness about the disease, which would not only motivate patients but will also ensure their adherence to the therapy.
The problems of unawareness and ignorance of patients towards important disease-related information, resulting in demotivation to TB adherence were not yet addressed through an ICT Intervention. Also none of the existing solutions had addressed the problem of unawareness combined with therapy monitoring for TB patients in the low-income and low-literate rural communities of India.
The above-mentioned challenges hinted at potential possibility of an ICT intervention that would reach out to individual users and increase information awareness about the disease, which would not only motivate patients but will also ensure their adherence to the therapy.
“ Prevention of the disease through better knowledge and awareness is the appropriate way to keep disease away and remain healthy as illness confusion and health-seeking behaviour may enhance or interfere with the effectiveness of control measures. ”
Initial Design Explorations
My initial design explorations focused at making patients aware about government policies on the disease. While some were primarily focused on encouraging the patients to visit the health-centers regularly by giving them monetary benefit. Interactive information kiosks at the health-centers to engage the patients (using games and video content) on their visits emerged as a close winner, however majority of the patients were unwilling to make these visits they had to sacrifice a day's pay for taking time off from work. Also, solutions using technology had very less probability of succeeding as the patients (often illiterate) became uneasy while operating devices that appeared fancy and technologically advanced.
To address this issue I developed Parichaya – A medical kit for increasing the adherence towards TB therapy, which makes the patients aware about the disease combined with supervising the therapy.
Parichaya is a low cost medical kit for increasing the adherence towards TB therapy, which makes the patients aware about the disease combined with supervising the therapy. It addresses a major issue of unawareness of the TB patients by taking advantage of the idle time of the patients while ingestion of medicines due to small supervised breaks/gaps between every pill. This medical kit targets at the Category-I, TB patients.
Bioscopes are a kind of early movie projectors, famous in relatively small and remote villages. They are wooden boxes, the interior of which has pictures that can be viewed through four circular holes. Bioscopes were specifically very famous in the rural parts of Assam, with villagers eagerly waiting for street hawkers to bring these projectors to their villages. Inspired from bioscopes, the medical kit is made up of two circular discs attached to each other at the center.
The upper disc has a diameter of 35 cm and the lower disc with a diameter of 37cm holds the medicines. It contains important information about TB divided into 12 course modules (one on each lower disc, on per week basis), in the form line diagrams and illustrations/icons. In accordance with 7 pills-a day prescriptions for Category-I TB patients, the medical kit is divided into 7 equal sectors. The sectors in-turn consists of four sections with three circles for illustration and a compartment for storing the pill. Numerals in Assamese script and hierarchy in the form of size difference & appearance sequence are provided to facilitate navigation in icons.The bigger circle depicts a broader category of information, whereas smaller circles denote the category specific information.The upper disc of the medical kit has 3 cavities for viewing the contents on the lower disc on rotation.
Illiterately accessible interface domain poses a high risk of illustration misunderstanding. Therefore, I provided audio captioning (of approximately 10-15 seconds) to the small icons in Assamese language. Push buttons (numbered 1 and 2) were placed below the illustrations, on the circumference of the lower disc. The audio, on the press of these buttons explains the meaning of the illustrations. The users can replay the audio description of illustration by pressing relevant button.
The medical kit with appropriate information module is given to the patient. Under the supervision of ASHA member/other health workers, the patient starts by ingesting the medicine from the first section. In the idle time, before consuming the second medicine, the patient with the help of the audio buttons, learns about the message describing the first illustration. After listening to the information, the patient rotates the upper disc to expose the medicine in the second section. This process is repeated for all the seven sections until all the pills in the medical kit are consumed. After every medication, the health worker replaces the lower disc.
“The system is not meant to replace existing ASHA members/health providers who help and supervise their medications. Rather, it enables patients, under the supervision of these members to utilize their time effectively and get motivated by learning about the disease”
Conclusion and Results
Unawareness about the disease and insufficient time with ASHA members to supervise the ingestion of medication were highlighted as the biggest factors for in-adherence on TB therapy. Moreover, the idle time with the patients during the medication surfaced as an interesting and novel opportunity for ICT intervention. This idle period can be-effectively used to educate and motivate patients towards adherence of treatment. Low-cost, reusable and easy to manufacture design solutions like Parichaya, in addition to the existing workforce of ASHA members/healthcare workers can prove in decreasing the numbers of defaulters and rate of in-adherence among the TB patients living in rural parts of India.
Initial evaluation of the medical kit has brought a lot of out positive feedback from the field.
“ Patients will get attracted to use this device and will come regularly just to use it. By using this the patients won’t waste their time during the medication.”
“ This very informative and by using this I will be able to take precautions. It is entertaining and fun to use.”
While there was a lot of positive feedback on the solution, we also learnt about some of its shortcomings. One thing in particular that stood out was:
The medical kit required the medicines to be available in circular blister packs so that they could be easily attached to the medical kit and replaced by the health care workers (depending on the medication of the patient). This would require the drug manufacturers to make alterations to their blister pack designs which was a tough ask. An alternative to this was to make the healthcare workers manually cut traditional blisters and replace medicines in the medical kit. But it was difficult to standardise this practice due to involvement of human error.
Working on this project gave me valuable experience. It taught me the importance of empathy in a design process. The ethnography studies allowed me to deep dive into the lives of the users and understand their problems first hand. It was interesting to see how social relationships can be used as facilitators of change in rural societies with less-no technological proliferation. Every society is different and solutions should be designed on the merit of these differences.
Designing for the people in the lower base of pyramid was a special and gratifying experience.