tisdag 10 mars 2020

About Clinical data at Sambhavna Trust Clinic

At the start up period of Sambhavna Trust Clinic in Bhopal, I supported the clinic by developing a computerized health record system.

During my visit to Bhopal in February – March 2020, I was orally, in the presence of other people, accused by a representative for Sambhavna Trust (Bhopal People's Health and Documentation Clinic) to have tried to steal clinical data.

The accusation was later formed like this in an e-mail from the same person:

“Regarding my allegation that you tried to steal data, it goes back to the early years of the clinic. i think around 1997-98 when we (several staff members as well as I) caught dr XX trying to send an email to you with data from the clinic. he wasn't very smart in using computers and everything was obvious. to make matters simpler that you, ingrid, trained him in sending data through email and that you gave your email id to him and told him to send you data on a regular basis.” 

This was the first time I heard about this accusation. At the time when it happened, I did not get the opportunity to explain or defend myself. As I don’t know how many have heard about this, I want to give my picture of what happened.

I was a member of the International Medical Commission on Bhopal (IMCB), that made it’s first visit to Bhopal in January, 1994. In December 1994 – January 1995, I visited Bhopal for a “minor field study”. After this, I returned regularly, once or twice per year.

When Sambhavna Trust started the Sambhavna Clinic in 1996, I felt I could do something for the clinic and at the same time use the work for a master of public health essay, together with Sambhavna.

My experience from health care in India at that time was that no proper medical journals were written. The patient got a prescription from the doctor, written in “doctor’s handwriting”, that only the pharmacy staff could read. They might get the originals of laboratory tests and x-rays photos, to take home. There was no possibility to evaluate treatment.

In Sweden, we had a sophisticated health record system, that was owned by the care giver. The patient him/herself had very little information. Computerized health records had just been introduced within primary health care.

I offered Sambhavna clinic my support for two ideas:
  1.  A health booklet, where doctors should make notes at every visit. The booklet should belong to the patient, who could bring it to any doctor or hospital as he/she wanted. The booklet was developed and is still in use.
  2. A computerized health record, based on the free WHO software EpiInfo. This should make it possible to take out statistical data. The purpose was also to compare the effects of the two treatment systems: Ayurveda and western (allopathic) medicine, something that has never been done before.

It is a long time ago, and I have to recall this from my memory. There might be an agreement and a project plan saved in a floppy disc somewhere, but I am not able to open it. As Sambhavna at that time was a tiny organisation, it would not have been possible to bypass the manager.

During one of my visits to Bhopal (1996? 1997?) I started to develop the health care record, together with one of the doctors and the then computer responsible person. I developed it on my own laptop and copied it to the computer of Sambhavna. Together we designed the formulas so the program would give answers to the right questions. However, there were some technical problems that I needed more time to solve.

It is very possible that the agreement was that when there were some data in the system, they should be sent to me electronically (e-mail was the only possibility at that time), so I could work on it before I returned to Bhopal. Anyhow, I never got any data and could not prepare for my next visit.

When I came back after one year, I realised that changes were done within the program. I understood that it would not be possible to do research this way, as the staff did not understand the necessity of having exactly the same statistical design all the time.

I abandoned the idea of a joint project. Instead I invested in collecting all information that was already published – the basis for my master of public health essay as well as the book The Bhopal Saga. In this work, I was independent of cooperation with other people, which made it easier. However, I got lots of support from Sambhavna to collect the already published material.

The computerized health record was in use for many years, but of course, I never had access to it. Some data were published in the annual reports of Sambhavna and thus could be used in my essay and in The Bhopal Saga.

The only data I have collected at Sambhavna were some short interviews with the doctors, published here

Ingrid Eckerman, Stockholm, April 10, 2020.

This text was uploaded here on April 10, 2020. However, it was ante dated one month, not to be the first thing a casual visitor to see at this website.

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