Eye Donation – A Tricky Question of Probability, Statistics and Ethics

After watching an advertisement encouraging people to register for eye donation post passing away, lot of questions started coming to my mind…

While the cause is genuine and needs lot of well-wishing volunteers, the process of registering the volunteers and then managing a conversion (for a lack of better word), may be challenging and possibly demotivating for both the volunteers as well as organizers of these causes.

This is particularly true in countries like India where all organizations many not be readily sharing health related data with each other, the volunteers can belong to any strata (lower class, middle class, upper class). In some cases, the families of the volunteers may not even be aware of the commitments done by the volunteer. In the worst case, they may be completely opposed to this commitment and may proactively hide the volunteer status information from the organizers.

Note : I have not checked out the details of these processes and this blog is purely speculative for the purposes of analysis of such situations !

If you are still wondering, what am I getting at, I am basically trying to imagine the answers to following questions.

Once a volunteer has registered himself/herself for eye donation post-death:

1) What strategy should the organizers apply to check if the volunteer is close to passing away?

Essentially how can the organizers estimate the most probable lifespan of the volunteer? In a country like India where living and health situations are highly different depending upon factors like poverty, location, food-preferences, etc, bracketing a volunteer can be a tedious task and prediction of future brackets of a volunteer can also be difficult. (A poor but educated person today may be a Sedan flaunting richie after 10 years !)

2) Will it be ethical/human for the organizers to keep calling the volunteer and asking him/her about status? What kind of conversations can they do with the volunteer?

Calling someone and asking them if they are close to passing away, is grossly inhuman. And calling them regularly !

Some volunteers may not mind but some may find it counter-intuitive.

3) What other methods of communicating can the organizers apply to reach the volunteer? What would be a good frequency of communicating with the volunteer?

While directly calling to check the status is inhuman, I think the organizers may still be able to reach the volunteer by making fake calls (for selling credit card, insurance schemes etc). This is inethical too!!

The frequency of reaching to the volunteer also needs to be tactfully calculated.

If the volunteer is currently young, it makes sense to keep decreasing the frequency of calls. First call once in a month, then once in 3 months, then once in 6 months…

If the volunteer is beyond a “certain age”, it makes sense to increase the frequency of calls- from once in 6 months, to once in 3 months, to once in a month.

Determining the above “certain age” will be of prime importance and with growing health facilities, lifestyle changes, this age will nee to be recomputed and many need to be tuned further for a volunteer depending upon his/her history of health.

4) What all other parameters can be of interest to organizers to keep a check on the status of volunteer? What can be the sources of the data?

Keeping in touch with various hospitals can be a good idea to start with to monitor the volunteers.

Having a centralized patients database mapped with their unique identifiers (phone no, email, SSN (in US), PAN (India)) etc can help.

Doing national surveys can also be useful. During population census, the following questions may be asked.

Are you/your family members registered with any causes for eye-donation?

Sharing and centralizing information is of prime importance in this case and government itself will be the best candidate to organize and operate such activities.

5) What all strategies can the organizers apply to improve the conversion rates (considering the nobility of cause) ?

Educating the volunteers to be upfront about their situation can help a lot!

Volunteers should be asked to make their families also understand the cause and be proactive.

In smaller villages, where people are generally socially connected with each other at a more deeper level, the organizers can create community wide awareness. Heads of communities (Sarpanch etc) can be educated to proactively keep an eye on the volunteers and report to organizers pro-actively

The organizers should register as many identification details of the volunteers as possible as the amount of time they would have in case of volunteer’s death could be very small.

Hospital staffs can be educated to confirm with eye-donations institutes if the volunteer has been registered with them for eye donation in case of a death in hospital. This will also help cover more volunteers who pass away in accidental deaths.

Mathematical probabilistic modelling techniques can only help to an extent in this situation. A statistical analysis may roughly predict the probable lifespan of a volunteer. Probably, coupled with some confidence intervals, this knowledge can be utilized more effectively.

E.G. A volunteer X is likely to live for 73 years and the 95% confidence interval might be (70,78) based on various parameters associated with him/her.

This will restrict the focus time of organizers to roughly 8 years where they will need to be on tip of their toes and more pro-active.

While this topic is evidently grim and there are numerous solutions to all issues mentioned above, I think, such kind of situations are common in our lives and all actions should be taken to help such good-willed volunteers achieve the special commitments they made to make lives of others beautiful!

But once again, this article is purely speculative. I haven’t actually reviewed the current processes using which eye donation volunteers are managed.

Also, please donate vision (eyes) if you can. It is the brightest gift you can offer to someone !