UX Research
UX research for increasing organ donation in India — UX Research Case Study.
This case study will provide an analysis of the research insights and decisions that can help India increase its organ donation rate from 0.01% to 1.33%.
1. Introduction🎙️
Organ donation is a noble cause, 1 organ donor can save the lives of over 8 people with fatal conditions. It’s regarded as the highest form of donation and good deed a person can do. Sadly, India has a very low rate of organ donation, with only 0.01% of its population donating each year.
- This is alarming considering that over 500,000 people die each year waiting for an organ transplant.
- In this case study, I will explore ways to spread awareness about organ donation among Indians.
2. Research 🔬
Preliminary Research🖥️
“Understanding the present state of organ donation in India, including the ratio of demand to donations, and the governmental policies for donation at the state and national levels.”
Types of Organ Donation:
- Living Donor Organ Donation: A person during his life can donate one kidney (the other kidney is capable of maintaining the body functions adequately for the donor),
a portion of the pancreas (half of the pancreas is adequate for sustaining pancreatic functions) and
a part of the liver (the segments of the liver will regenerate after a period of time in both recipient and donor). - Deceased Donor Organ Donation: A person can donate multiple organs and tissues after (brainstem/cardiac) death. His/her organ continues to live in another person’s body.
The ratio for demand vs donation in India each year is as follows: -
Government Policies for Organ Donation. 📜
NOTTO (National Organ and Tissue Transplantation Organization) is a government organization established under the Ministry of Health to manage organ donations. It oversees hospitals, donors, and NGOs involved in the process.
User Research👥
Aims to explore users’ basic perceptions, including their thought processes and attitudes towards the idea of organ donation.
Conducted Four user interviews with individuals of different religions (since religion is a major factor people consider when making donations), age groups, and demographics.
User Interviews and Findings. 🔍
You can read all the interview questions here.
User Interview Questions❓
I’ll be directly talking about findings through user interviews.
User 1🧒🏻
- Occupation — Runs family business of footwear store.
- Resides in Tier 2 town.
- Age — 32 yrs.
- Studied up to 12th grade.
- Is really uncomfortable to the concept of Organ Donation.
- The reason being, he believes why should he donate his organ to someone who has destroyed their own organs through substance abuse or reckless driving?
- He firmly believes that his body has been gifted by God and he has no right to mutilate it by his will. This is also what his religion has also taught him.
- Additionally, holds a belief that if he donates organs in this life, he’ll be born without it in the next.
User 2👧🏼
- Occupation — works in a corporate company.
- He lives in an urban city.
- Is well educated.
- Age -26 yrs.
- finds organ donation a very genuine and noble way to help others.
- Has a few doubts about how the procedure works.
- Is concerned about his family’s reaction to his decision to be an organ donor. Felt uncomfortable during the interview at the beginning, talking about his death and organ donation at first.
- She is also concerned about how the process might work and is the system reliable, she doesn’t want to take such a big decision for herself and her family only to find out that the system is not reliable, and her organs might be not given the user she expected rather due to corruption her organs are being sold.
3. Analysis and wrong assumptions. 👀
Insights💡
- There is a lack of awareness about organ donation among the general public.
- Even those who are aware of the concept may have doubts about the reliability of the system.
- Many are unsure about how the procedure works and fear that doctors may not save their patients if they are donors.
- Some religious communities, such as Islam, completely deny organ donation.
- Many citizens from Tier 2 and Tier 3 cities hold religious dogma and myths, such as the fear of being born without the donated organ in their next life.
Myths around organ donation. ❌
- Doctors will not try their best to save you if they know that you are a donor.
- Some people have religious reasons for not donating organs.
- Many believe that if they donate an organ, they will be born with congenital anomalies in their next life.
- Some also believe that by taking another person’s organ, they will take on that person’s karma.
4. Deciding user groups and redefining assumptions. 👩👧👦
Initially, we presumed that lack of awareness is the primary motive behind most Indians not contributing their organs. Further analysis of our research data reveals that besides awareness, religious convictions, myths, and personal beliefs also play a crucial role.
This led us to decide on the user group we wanted to target. Since this is a very sensitive topic that involves discussing the death of someone’s loved ones, it won’t be easy to spread the idea to a mass audience initially.
Keeping this in mind here are the users that I have decided to pick, also with the user groups I won’t pick at least for now.
Not Involved at this point in time.
- *Rural population — as they are more affected by religious reasons to not donate
- *Illiterate people — very difficult to break their prejudice.
- *Certain religious communities (Islamic community) as they are completely against organ donation.
User Personas👨🏽🦱
5. Redefining Problem Statement.🛠️
Problems faced by selected user groups.
- The lack of trust, as in the case of Miss Vaishali, and the lack of clarity in procedures on how organ donation works.
- Lack of awareness among users like Mr. Amit about more options like Organ donation to help others apart from monetary assistance.
How Might We
6. Possible Solutions. 💡
1. Awareness
Let donors know how to register as a donor in India.
- Infographics and social media posts for awareness.
- Share personal stories of organ donors and recipients.
- Educate people about the benefits, risks, and myths of organ donation.
- Cartoon stories of organ donors and recipients.
2. Government Initiatives.
- One way to increase organ donation rates is to establish a system similar to Belgium’s, where individuals are presumed to be organ donors by default and must fill out a form to opt out of donation.
- Belgium has a 90% organ donation rate, as citizens are by default assumed to be a donor.
- However, in India, where there are many different religions and beliefs, implementing such a system may be challenging.
- One option is to begin by implementing the default system among doctors, nurses, and government servants (such as police, military, and civil servants).
- India currently has approx—20 million healthcare workers. We could start implementing the Default Donor System with healthcare workers, as these people understand the urgency and need for organ donation in India already (If this system is implemented the organ donation rate will jump to 1.3% from 0.01%).
- Then we could include further government servants like Police officers, Government employees, etc.
7. Future scope and mass adoption. 🔮
“At present, we’ve chosen to proceed with a very specific user group, but in a nation like India, where the majority of the population resides in rural locations with minimal education, it’s imperative that we engage this majority user group.”
- Looking at India’s history, there were myths and superstitions surrounding blood donation. However, with government Initiatives and support from NGOs, every Indian now holds a favorable perspective on donating blood. We need to take similar action to spread organ donation too.
- Similar initiatives like Nukkad Natak (Street plays for awareness) and awareness programs by ASHA workers are required to propagate knowledge on organ donation in rural regions.
- Most rural district hospitals in India lack the necessary resources to facilitate organ donation, preventing even willing donors from doing so. Improving the healthcare infrastructure in rural hospitals is crucial to address this issue.
8. Success Metrics. 📊
- Increase in Per Year organ donation rate in the country.
- Increase in the number of people registering with NOTTO India as a donor.
9. Learnings. 📖
- When I selected this topic to work on as a doctor myself, I thought it would be easy to convince people about organ donation.
- I soon discovered that death, organ donation, accidents, etc. are very commonplace topics for us doctors, whereas the general public is quite uncomfortable discussing any of these subjects.
- Every religion represents the concept of death in a completely different way, so to explain to normal people about benefits of organ donation I had to come up with more than one analogy.
