Friday, January 2, 2009

Dialysis in India - the need for a registry

I am not aware of any dialysis registry that exists in India. If I am wrong, please correct me.

Why is this important?

In a country like India, you cannot escape the size of the population. By implication, you are always dealing with huge problems. Problems that affect a large number of people, problems that require a large quantum of resources to be fixed and problems, which if resolved, will benefit a large section of society.

Due to this, you need large institutions like the government or big corporations to be involved to even hope of making any difference. To be able to involve them in anything, you need data. By simply showing them someone who died due to the lack of dialysis will not change anything.

We need data to be collected about everything related to dialysis across the country. We need a list of all the centers offering dialysis, the number of treatments offered every day, the demographics of the patients, the dialysis modality, so many other things.

If we do not have these numbers, it is impossible to estimate the size of the problem. And without this, any measures that are taken will not yield the desired results.

And it is not that difficult. We have the whole country divided into states each of which has a capital. And there are not a whole lot of centers offering dialysis today. If someone dedicated from each capital can be involved in this exercise, the registry can be built in a matter of months.

This will help so many people.

The government can use this data to identify which areas need more dialysis centers. Corporates can use it to fund special programs targeting dialysis patients. Medical companies can decide which areas need special attention. Patients will benefit greatly because they will know where to go in case they have a problem.

Travel will become that much simpler. Dialysis centers can facilitate 'dialysis-on-vacation' much more easily.

This kind of data can really be invaluable to all concerned. But we need some organization (akin to the many organizations that exist in the US) that can drive this effort and take it to the next level. Without someone constantly endeavoring to do this, things will only remain where they currently are.

3 comments:

Madras Hash said...

Using your blog to coordinate initially, can you set up a Wiki or a Google Doc, where:

1. You set up a template, which can be discussed and modified
2. People fill up details
3. Ask people to verify the details and update them from time to time.

To start with do not have Moderation, and bring it in only if you see "abuse".

Use the power of the internet. It now reaches every where.

The registry will soon be used by patients, researchers, policy makers, etc..

All the best.

On On

Dr.Shah Navas.P said...

We wish to start a dialysis centre which can be sustainable as apart of our service to poor pts. Can u give us the essential logistics.
Dr.Shah Navas.
Kerala Govt Medical College Teachers Association
Trivandrum

Kamal D Shah said...

Dr. Shah Navas, please send me an email and I will discuss with you.