UX Research and Design | Rural Healthcare
Team Members: Shashwat Sanghavi, Rahul Patel, Anmol Anubhai
Role: Founder, UX Researcher & Designer. Used a combination of qualitative research methods such as contextual inquiry, ethnographic study sessions, culture probe kits, semi - structured interviews and focus groups. Worked with local folk artists to design content and prototypes. Worked on using machine learning (polynomial regression) to build the epidemic predictor system (an extension of this project).
Mentors: Mr. Ravin Sanghvi, Prof. Mehul Raval
Distinguished Client: Barakat Bundle (http://barakatbundle.org/)
Duration: Dec. 2015 - May 2015
This startup was incubated at Venture Studio, Ahmedabad
How might we reduce health vulnerabilities of illiterate low-income rural women by increasing their healthcare awareness?
We did extensive user research using a variety of methods in the rural parts of India. We then used our findings to inform our design decisions. In the sections that follow I would like to take you through our entire research process, ideation, prototyping and testing experience.
We first began by making a chart of all our stakeholders in this space of rural healthcare in India. You can see a complete list of all our stakeholders below.
Next, we made a list of distinguished surgeons, cancer specialists and general physicians who were offering their services then in Gujarat, India. We conducted expert interviews with them. Below listed are some of our expert interview findings.
Expert Interview 1 | Dr. Shefali Desai
- Consultant Breast & Laparoscopic Surgeon. She deals mainly with breast cancer.
Major problems that patients face according to her?
- Patient awareness and self medication
- High dosage of antibiotics often causes drug resistance
Does she favor adoption of new technology in healthcare?
- Depends on the cost
- She enjoys learning new technology
- She attends conferences to keep herself updated with new and upcoming innovations in her field
Do they invest in such machines at her clinic?
- They own all their machines. They sometimes choose to bring in certain rare machines on rent.
How do they decide what kind of machines to invest in?
- They generally decide on their own
- At times it is difficult. During such times they seek advice from consultants who suggest the type of machines that will suit their needs the best
Do patients have to wait in long queues?
- Prior appointment is required at her hospital
- Small waiting queues since it is a private hospital
What kind of patients does she come across?
- She comes across two types of patients. Some are very well read while some are unable to comprehend medical terms because of being illiterate
How does she explain the treatment needed to a patient who is unable to comprehend?
- She uses a variety of tools such as pictures and short videos to explain the problem
Do hospitals/clinics need to earn any certificates/follow a set of regulations?
- There are certain regulations framed by the National Accreditation Board for Hospitals & Healthcare Provider (NABH). All hospitals are expected to obey the same.
Are there any regular cleanliness checks at her hospital?
- There are regular hygiene checks that are carried out by the manager
Do patients often need a second opinion? Why?
- Some cases are fragile and require a second opinion.
- Since the diagnosis process for certain cases can be complex in nature, it may often require a team of experts to diagnose the medical problem successfully
What types of diagnosis tests does her hospital offer? How long does it take for the patient to get his reports?
- Her hospital offers tests such as sonography, mammography, elastography and biopsy
- The turnaround time of some of these tests is between 12 - 24 hours while for some tests that require studying the patient's tissue it may take upto 5 -6 days
Expert Interview 2 | Dr. Shweta Parikh
Dr. Parikh is a psychiatrist who offers treatment to cancer patients at the M.P. Shah hospital. We learnt the following things from her:
- Depression, anxiety and addiction are some mental health issues that a majority of cancer patients face
- She says that it is difficult to make the patients accept their illness at times
- Psychiatric disorders have their own stigma or taboo in rural parts of India
- Many patients suffer from depression because they cannot afford the treatment. They are also unable to commute to the city hospitals frequently
- Telling patients about the disease is more difficult than telling his family about it
- Spreading awareness about cancer is crucial in the remote parts of India
- Public Health Centers (PHC) cannot diagnose cancer. PHC can only do limited tests.
- PHCs send patients to Civil Hospitals in the cities after which they are often referred to the MP Shah Specialized Hospital
- Doctors are afraid of breaking bad news to patients
- Medical camps are organized by NGOs, Corporates, individuals and government colleges or hospitals
- Educated individuals often exploit the illiterate by asking them to pay extra money in medical camps
- Anxiety, Depression and Dementia are the major problems faced by our elderly currently
- There is a dire need of instruments that can detect various psychological disorders
- No psychiatric treatment is available at the PHC level
- Standard guidelines for psychiatric treatment (APA) need to be followed
- Helplines aren’t functional 24x7
We conducted interviews with multiple doctors, microbiologists, PHC and CHC doctors. In the next section, I give you a quick glimpse of some of our interviews
Interviews and Contextual Inquiry | Local Village Doctors
Next, we went to remote villages of Gujarat and conducted contextual inquiry as well as semi structured interviews with a number of medical professionals who practice there. Below listed are some of our findings
Local Ayurveda Doctor (Shilaj Village) | Interview Learnings
- He gives Ayurvedic treatment for weight loss and weight gain. Also treats numerous minor ailments using Ayurveda
- He says that he sees numerous patients suffer from a variety of ailments in his village
- During monsoon he sees a number of malaria cases
- During summer he sees a higher number of typhoid and jaundice cases while during winter he comes across tonsillitis and cough/cold
- Most people in his village are tobacco addicts. 80% of the villagers consume tobacco including women and school going children.
- They suffer from multiple mouth ulcers because of the high amounts of tobacco that they consume. Often these ulcers are so painful that they are unable to even open their mouths properly to consume regular food. They have to be spoon fed
- They refuse to give up tobacco because of not being fully aware of tobacco's negative effects on their health
- All doctors in the village are well educated and try their best to offer best services. However, patients refuse to come to the clinic because of community pressure
- Refused to comment on child marriages and problems that young mothers face. He told us that the women are not allowed to take their own health related decisions. Their husbands and in-laws decide what is best for them. This causes issues such as being anemic because of multiple pregnancies at a young age
Local Village Allopathy Doctor (Shilaj) | Interview Learnings
- He said that he had been practicing in Shilaj since 1995 to present
- He said that the initial years were difficult as there was a higher percentage of illiteracy, lack of awareness and strong belief in superstitions.
- The villagers preferred to go to the village “Bhuva” (witch doctor) to get themselves treated
- The Bhuva was in fact his asthma patient (ironically)
- Now employment, literacy and health awareness among people have improved greatly. However, still a lot of work needs to done!
- There is a high percentage of tobacco addicts because people are not fully aware of how dangerous tobacco can prove to be for their health
- 1 Or 2 cases of mouth cancer whom he had referred to the Civil Hospital
- Multiple child marriage cases and mothers who are as young as age 15
- Young girls are not explained the importance of family planning and taking contraceptive pills
- He owns a variety of latest tools and gadgets
- He owns a no touch thermometer, ECG machine, glucometer and a variety of other instruments
- He owns a personal computer which he uses to look up treatments of new ailments
- He is on plexus MD (doctors' online network)
- Showed interest in using a device to detect oral cancer
Public Health Center (PHC) Doctor
- She is a middle aged woman who is curt in her replies
- She says that she majorly treats young mothers and newborns at her PHC
- She talks to a young mother and tells her to immediately take her 12 month year old son to the nearby hospital as he is suffering from dehydration
- She signs a small sheet of paper containing a list of medicines which she hands over to her
- She says she would be interested in an application that could help her detect early stages of cancer
- She uses a smart phone to stay connected with her PHC staff members
- She says she takes atleast 15 days to make sure if the ulcer looks cancerous before referring the patients to city hospitals
- There are a lot of sub centers under this PHC
- Village health camps are held here during which a lot of people from all of these sub centers come to her PHC
- She daily sees 70 patients on an average
Public Health Center (PHC) Microbiologist
- He has his own small lab at the PHC. There are a variety of instruments. There are also charts showing detailed procedures
- He majorly detects malaria, tuberculosis and conducts urine sample tests
- Methylene blue is used for staining human blood samples
- There are community health workers who go to the villages and collect blood samples. These samples are then checked by him at the PHC.
- The tuberculosis slide staining and preparation procedure is about one hour long. It requires expertise to prepare those slides
- Around a 1000x zoom is required to see bacilli bacteria. Bacilli cause tuberculosis
- If malaria is detected then the health workers go back to the affected patient and give the required medication
- He is interested in viewing the micro organisms on a big screen which he as well as a few other biologists can view together and decide if the sample is infected or not.
- Slide preparation cannot be done by community workers
- He is unhappy and not satisfied with the quality of the cheap microscope that the government has provided
We visited villages such as Thol, Nasmed, Karoli, Santej, Shilaj & Rancharda in Gujarat, India to continue our field research. We designed and conducted open ended as well as semi structured interviews, ethnographic research, surveys as well as focus groups in order to gain a thorough understanding of the problems that rural citizens coming from various socioeconomic backgrounds, doctors working in government hospitals and social health activists ('ASHA') workers face.
Ethnographic Study Sessions & Contextual Inquiry
We sat in government hospital lobbies and conducted multiple ethnographic study sessions there. We also talked to a few patients who had come to the city from their villages in order to receive their treatment. In the next section, I would like to share our team's ethnographic study session findings.
Some of our Ethnographic Study & Contextual Inquiry Session Notes
- 40 to 50 people in lobby 1 outside OPD
- Majority of patients above 20
- Patients are scared because of being unable to read their files and comprehend the medical terms
- Patients ask each other while waiting in the lobby if they knew how to comprehend the medical terms and if someone can help them with their files
- People do not know where they should go to get their reports and medicines
- Each patient had on an average 2-3 accomplice
- Only the cases files were being transferred and the patient was nowhere to be seen a couple of times
- Highly effective cleaning - Every 15 to 20 minutes sweeping and mopping carried out
- People discuss medicines, waiting time and the arrangements that they had made to be able to afford the treatment
- Many were quiet and looked perplexed
- Improper ambient conditions. No natural light in lobby outside OPD
Learnings and Insights
We learnt the following from our study:
- Women are pressurized to marry at the early age of 10 in these remote parts. They are pressurized to give birth to a son as soon as they hit puberty. This leads to frequent pregnancies that in turn causes excessive blood loss and deterioration of health. Many women start suffering from anaemia
- Doctors are concerned about addiction to substances such as tobacco. They stress the importance for increasing early awareness of addictive substances and their side effects
- Illiterate patients find it difficult to understand the doctor's diagnoses. They ask to be shown pictures or be given another explanation in simpler language in order to understand the doctor better
- People believe in superstitions that prevent them from seeking help from local clinics and doctors. They instead prefer to go to the 'witch doctor' (locally known as the 'Bhuva'). For example, they believe that a child suffering from measles is 'possessed' and cannot be taken to a hospital. They believe that only the 'witch doctor' can heal him. In such cases this causes further deterioration of the child's health because of doctors not being able to begin the treatment on time.
- Women are not allowed to take decisions on matters concerning their own personal health. Their in-laws and husbands play a vital role in taking their decisions.
- Internet accessibility is poor in rural India.
- Existing PHCs (Primary Healthcare Centers) have the necessary resources. However, they tend to run out of them easily.
- There is a huge gap between hygiene, disease rates, health awareness, doctor expertise and treatment facilities between urban and rural populations
- The rural areas have high incidences of diseases arising from or related to poor hygiene, tobacco addiction, early marriages and child-births, lack of family planning, poor child-care and lack of timely treatment
- Due to illiteracy and lack of resources, rural people have resistance to formal methods of health education
- Lack of awareness often leads a larger number of rural people into psychological disorders arising out of some cirtical diseases
As a part of our Ideation process, we sketched a variety of solutions in the beginning.
We designed an opportunity map for all our three ideas:
1) Quick Eye-checkup Tools
2) Portable Phone Microscope using Computer Vision
3) Interactive Voice Response Service for spreading awareness
SWOT (Strength, Weakness, Opportunity & Threat) Analysis
We then conducted SWOT analysis of each of our ideas. Our analysis helped us gain better clarity and we decided to go ahead with our idea of designing an interactive voice response system for spreading awareness. We decided to design an education + entertainment system.
2 x 2 Matrix
We plotted a 2 x 2 matrix for our IVR awareness idea. We went back to our experts as well as patients and asked them if they would use one such service.
Solution Proposed and Initial Design
Kahinee intends to improve healthcare awareness by delivering audio content that does not require internet access. Audio is preferred as a mode for communication as it does not require the user to be literate in order to understand the content. The print mode on the other hand requires the person to be literate and leaves room for miscommunication. The content is designed keeping in mind the rural citizens, their needs, likes and dislikes. The content is designed in their local language. The content's key focus is to educate the citizens about maternal healthcare issues such as family planning, taking iron tablets to battle anaemia etc.
We invited local folk artists and with their help composed short skits as well as folk music on these topics. We made sure that we use relatable characters and simple language. We could also effectively highlight the disadvantages of not following certain healthcare guidelines through this simple story telling approach. We designed content on a variety of topics using the help of local artists, community health workers and doctors. We then went back to the villages and conducted multiple test iterations in order to gauge understandability as well as effectiveness of the content. We conducted interviews, surveys and focus groups in order to understand their take on the system. We used the 'Wizard of Oz' technique in the beginning when we simulated the idea of the mobile system playing content on the health topic a user chose using his simple mobile phone.
I explain our interactive voice response solution (in the video given below) for the India HCI Cafe competition that was held at the Indian Institute of Technology (IIT) Bombay. We were later selected for the same and got an opportunity to talk about our journey there. We are extremely grateful to have got this opportunity to get feedback from the Design Faculty at IIT Bombay.
We used the software 'Audacity' to process our recordings. We collaborated with folk artists, local theater script writers and musicians to prepare our recordings.
The scripts developed for Kahinee are an amalgamation of entertainment and information. Designing scripts is a challenging task. On one hand it should provide vital information on a given health topic and on the other hand it should not be mundane and cause the user to quit listening.
- Each script was designed to be at max 60 to 90 seconds long. The duration was decided after conducting several test iterations with rural citizens and learning more about their attention spans.
- While deciding on the content, several iterations were made with doctors in order to confirm the correctness of the information that the content provided.
- The topics were chosen after detailed discussions with pediatricians, cancer research specialists and gynecologists
- We also conducted numerous focus groups with expecting mothers as well as fathers in order to learn more about the ways in which they consume this content
We used KooKoo cloud telephony and Microsoft Azure to host our system as well as run the IVR service. We designed a client dashboard for the same. After having come to this stage we learnt about the activities of Barakat Bundle, USA and seeing synergy, we approached and collaborated with them for pilot tests in the Jhagadia district at Bharuch. The pilot test feedback was very encouraging.
Pilot Test with Barakat Bundle
Inspired by the Finnish Baby Box, the startup (incubated at Harvard University) - Barakat Bundle provides a curated bundle of life-saving solutions paired with desired maternal and baby care items to support expectant mothers during delivery and infant care. Barakat Bundle wanted to incorporate audio functionality to supplement their existing pictorial informational pamphlets which provide instructions on correct usage of provided items and general maternal and child health issues.
Barakat Bundle worked in collaboration with the Indian Institute of Public Health (IIPH) and Society for Education Welfare and Action (SEWA) Rural. Barakat Bundle decided to incorporate simple push-button audio technology into its pictorial information pamphlets. When pressed, the buttons play a pre-recorded content that guides the user through the pictorial content in order to provide them with the Kahinee phone number using which they can connect to the Kahinee CDM for additional information. Kahinee CDM is a menu based helpline. It asks the user to enter a digit related to the content which they desire to listen.
The motivational reason to incorporate audio technology into the pictorial pamphlets was to increase comprehension of the low-literacy rural citizens and reduce the likelihood of miscommunication as well as confusion. Kahinee assisted Barakat Bundle to procure press button based audio modules, record the content and embed audio content in those modules. Kahinee also played a critical role in adapting the direct health information into audio dramas. The rationale for this two-pronged approach was to assess comprehension, acceptance, and recall of direct information versus entertainment approach.The Kahinee CDM was used to impart these audio based content.
During baseline assessment, Barakat Bundle, Kahinee, and IIPH conducted in-depth interviews to pretest the pictorial information pamphlets and focus groups which included feedback on the pictorial information pamphlets as well as the audio content and the Kahinee CDM experience. A detailed questionnaire focusing on a variety of crucial points was prepared.
A future extension of this idea could be to add a facility using which people in rural areas can leave an audio note describing their symptoms in their local language which can be answered using an audio note by doctors on the Kahinee network asynchronously.
1) Our Project won the Innovative Trainers Award - ITA-2016, Indian Society for Training & Development ISTD – Vadodara Chapter
2) Selected for presentation in India HCI Café track at India HCI 2016, India’s leading conference on human-computer interaction (result received on 28th October 2016). [Our video entry for the same is given below]