Organ donation process in India

Even after the increase in the pledge rate in India over the last few decades, the actual organ harvesting and transplantation rate is lower than any other country. The exact ranking of India’s organ transplantation is not known as of yet, but the annual rate was approximately 0.58 per million population as per NOTTO in 2017.

If we look at statistics of people pledging for their organs, the numbers are over the roof. However, if so many people are ready to pledge their organs, what goes wrong when it comes to harvesting them? Why is the conversion rate of pledges to the transplantation so low? This study tries to understand those barriers with the help of an NGO based in India.

One donor can save upto 8 lives through organ donation and heal upto 50 lives through tissue donation.

The challenge

Understanding user behaviour for opting in for the cause

It is a well-recognised fact that in India the organ donation and transplantation system has a long way to go. The main reason for this is the low consent rate. When a loved one dies, one is less likely to listen to something of which he has no prior knowledge. Whereas if one has the preliminary awareness of the topic and is approached for consent, one is more likely to give a positive response. The most important influencing factors for consent are the following:

...awareness,
..religious beliefs,
..organisation for organ donation,
..national organ donation policy.

User Research

Field research and interviews in India

Specific objectives of this study are:
1. Understanding the motivations and hindrances for pledging one’s organs
2. Role of NGOs in the organ donation system
3. Understand what kind of touchpoints or process changes might increase the conversion

rate of donations
4. Understand the shortcomings of the awareness programs and design touchpoints for the same

Quantitative Research

In partnership with four hospitals in the locality of Gopal Nagar and Sainagar, an attempt was made to understand the motivations and barriers for people (279 in total) to donate their eyes or organs in general. These doctors were approached through the author’s personal connections and the network of the NGO.

The partner doctors operate small clinics in the area which has a footfall of roughly 60-70 patients in and out of the clinic every day. Each of the doctors was handed out around 100 copies of a structured closed questionnaire which included questions based on the demographics, awareness regarding organ donations, their readiness to donate and their doubts about the same. Doctors were also handed out a leaflet which mentioned facts regarding organ donation and 24x7 helpline number in case they want to contact the authority regarding the same.

During the same survey, The people interested in organ donation were asked if in the event of their death a family member or close friend would know of their wishes regarding organ donation and if their wishes would be respected.

Outcome of our quantitaive study. 279 total participants that covered various demographics as genders, religions, education levels. 41.93% say they are likely to pledge their organs because someone from their family did so.

Qualitative Research

Arranged with the help of the NGO contacts with the hospitals, we visited around five hospitals in the State of Maharashtra. Each of them employs organ transplantation facilities or eye banks. Here, through the interview questionnaire, we tried to understand how the hospital staff handles the organ donation incidences, how they work to convince the families in the grieving state.

The outcomes of the interviews provided the missing information to complete the customer journey map, creating a digital version for the first time.

Observations followed these interviews (20) that were conducted in each of those hospitals (5) and NGOs (2) for a day. Those observations aimed to understand the process from firsthand experience.

Apart from the interviews with the staff members, we also talked with a few experts outside of India (2), to understand how this problem is tackled in those countries. Organ donors and receivers (5) were also approached to understand their perspective in the system.

Affinity map and clusters titles of the research outcomes. The clusters include: Awareness in staff and public, Trust in government, Wish communication with family, Counselling needs and barriers, Motivators and documentation.

Key learnings from the research: 1. Public doe snot trust the government and the healthcare system. 2. Awareness is essential in public and staff members. 3. Communication with your family members after the pledge is key. 4. Required document collection is essential. 5. Passion driven community

Concept generation

Ideation

I organised a short brainstorming session with all possible stakeholders. There were 10 participants in total with varied backgrounds but had an equal understanding of the organ donation topic. The workshop was organised in Pune, India and we used a storyboard template created by me to map the worst and best possible user experience. At the end of the day of the workshop, we had 5 best and 5 worst possible experiences which were merged into one best experience map as a proposed solution for the future of the process.

Final Outcome

Solution

After the workshop, we refined the experience map with more details to come up with the concept of the possible future: Naya Aadhar.

Naya Aadhar in Hindi means new support and it also means the utilisation of Aadhar card, the world's largest digital identity database, in the organ donation process.

Concept Principle 1:
From Lost to oriented

Guide through the whole process

Provide resources earlier

Concept Principle 2
From vague and scattered information to reliable information at each step

Match the support with the needs

Share existing knowledge

Concept Principles 3
From Isolation to with everyone

Communication with the family is the key

Concept Principle 4
From tedious to one swap documentation

Make it easier to give

Pilot

Nayi Deesha

Naya Aadhar is helpful but is a concept of the future, it needs implementations likes that of EMR, new Donor recognition and the integration of Aadhar with both of above. To check its MVP in present, we (the author along with the Deesha NGO team) decided to go out there with our findings to make a difference. The basis of any system design it that even one small change in the process can make a huge difference in the outcome. Service Design has always been about giving things a human touch with emotions, even more so in this case of organ donations.

There were three main elements for the pilot:

1. 24x7 organ donation helpline for consultations and distribution of grievances.

The NGO team had been in touch with the Government of Maharashtra from the last few years since when Mr Fadnavis came to the office of CM. With all the discussions during this process, Mr Fadnavis took charge of issuing the 24x7 helpline for the cause to be controlled by Deesha team and paid by the government. The helpline went online on 1st December 2018 and answered around 150+ calls until the end of March 2019.

2. Family consultation over every individual pledge lodged

All the collaterals during the pilot urged people to communicate their decision to the family after they have made one themselves. They were also asked if they are okay if the on-call support calls their family members. If this consent is received, the support would call and inform the guardian of the donor, about donor’s decision and about the procedure that would be required to be followed. In the same call, they are urged to pledge their organs if they are up for it and the number of pledges increases with the people involved making an informed decision.

3. I am a donor sticker over the driver’s license or Aadhar Card.

Previous researches have suggested that pledges work best if they are written down, made public, done in groups, voluntary and combined with other marketing approaches. Utilising this aspect of the behavioural science with the fact that was having this information of donation on a document which is always with you, is likely to increase the probability of organ harvesting. Issuing a new donor card altogether might frustrate the user even more. People have always been complaining about the number of cards they have been carrying around, this might add one more to the list. Like the idea in the original concept of hacking the existing touchpoints, it was decided to issue a sticker for the donors to utilise and carry around. These stickers would be sent with the thank you note they receive. A sticker which will be issued whenever someone pledges, through any NGO or service or website.