[stextbox id=”custom” float=”true” width=”900″]Anybody masquerading as a relative can subject a debilitated patient to undue treatment at India’s premier medical institution[/stextbox]
New Delhi: To keep it simple, let’s start the story by saying it was just a hunch to check out the online patient registration and treatment system of the country’s premier medical institute AIIMS. So I opened the webpage. An impressive picture of the building in the background, a lush green lawn lined by beautiful trees. As you scan through the content and scroll down, on the left is AIIMS Director’s message. A video starts playing attracting your attention. It shows the arrival of Prime Minister Narendra Modi at Red Fort on 15 August this year. He unfurls the Tricolour and the National Anthem plays out and then the Prime Minister’s speech starts with how good governance starts with responsibility and accountability. He then comes directly to AIIMS and praises its new online patient registration system.
“Dear brothers and sisters… people used to come to AIIMS, spend two/three days and then only it would be decided what diagnostic tests would be done. Now we have been able to change this system. Registration is done online and the doctor’s appointment is also given online. The processes start on arrival of the patient at the appointed hour itself. Not only this, but all his medical records are also available online. And we wish to develop it as a countywide culture in the field of medical treatment. Today this system has been put in place in 40 big hospitals of the country. Its basic premise is that the government has to be sensitive.”
On the left is another box with the picture of AIIMS Director Prof MC Mishra and his vision statement. All impressive so far. I take the cursor to appointments and an efficient system design takes you to a page where you have options for booking appointments based on whether you are a new or an old patient. All registered patients are given a unique identity with which all their records, admission history, their appointments, personal details are linked.
Since I was trying it new, and I was not intending to book a real appointment, I clicked on the option of booking appointment using a phone number. I did not want my number in use to be registered, so I punched in the mobile number 9953682201, another number that was in my name. I used it for years. It was discontinued by me sometime last year. When I entered the number, the system said “OTP sent”. To my surprise, the OTP was received on my daughter’s phone, which is registered in her name. I have now found out from Vodafone, the number I had been using and I punched in was allotted to someone else in January this year.
It was quite a shock and confusing too. I decided to check out how the system works on ground. I was guided to the Patient Registration Centre. It was a sight of utter confusion, but the security guards were able to keep people within the ropes that forced them to stand in some kind of arrangement that could pass off as a queue. I joined them and was able to enter the premises after a lot of jostling. There we were asked to sit in rows of steel chairs connected to one another. I did. But I was asked by the guard to move further and make way for another person on the same chair. So each chair was accommodating two people. In that crammed space, we were handed out a sheet of simple looking form asking for patient’s name, address, telephone number, son or daughter of etc. and which department we wanted to consult. I wrote psychiatry. The woman sharing my chair wanted to know which department she should write. When I asked what problem she had, she said her sister-in-law was expecting a baby. There were many who had just landed up and did not have a pen, so were cross-talking to know if they could borrow one. There were others who were shouting out to their friends or family members to know what address they should fill up.
We were pushed into another line that took us to a row of windows behind which young computer operators sat. On my turn, I pushed the filled up form inside. I had written my daughter’s name with d/o her father’s name, our current address in Delhi and my current phone number. It took the young efficient girl at the computer less than a minute to hand over a white UHID card with a barcode, to secure I suppose, that the card could not be duplicated and misused. I was then pushed in an automatically moving wave of humans to the appointments counter. It was only there, standing in the line, I saw that my daughter was registered as the wife of her father! Change it? I did not have the energy to go through the process again so I presented it for the appointment.
The young man at the counter punched the number and looked at me. He said, “You had been consulting in Room no. 1. I had suspected something was wrong, but this sent a fresh shock wave. He even told me how many times. Then he called another colleague of his and they both looked at the record and then at me. They asked where my old parchi was, which I believe must be the prescription. I told them I didn’t have any as someone else had been accompanying the patient. They discussed some more, looked at me knowingly and gave me appointment details on a piece of paper.
Puzzled, I decided to take it forward. My 8.30 am appointment was SMSed on my phone. Unfortunately for me, that was the day earlier this week when the sky seemed to be falling, particularly in the AIIMS area. I have rarely seen that kind of rain in Delhi before. But I was determined, so I took the metro, came out at AIIMS, had no umbrella and didn’t care. I walked in the pouring rain to the Out Patients Department and was told there was to be another round of registration and obtaining of parchi. Now this parchi is what becomes a prescription after the doctor examines the patient and gives his diagnosis and medication.
Even in that rain, there were people to form a queue, though much less than what I had encountered the other day. I reached a counter and was handed over a card with details from the UHID presented by me. I walked back in the rain and was guided to the second floor OPD for psychiatry patients. Inside, I looked like someone who had just stepped out of the shower, only fully dressed. I was told to proceed to a room and put my parchi on top of the others already put on the table. So I put mine. Unfortunately, my request to send me to Room no. 1, where I was apparently being treated, had been turned down. I was allocated Room no. 4.
Not a doctor had showed up by then and roads outside had already started looking like a river. Everybody knew the doctors would not arrive before lunch. I checked with the staff about the procedure to be followed from here on. You take the parchi on your turn to the doctor with the patient and get the treatment by briefing the doctor. But how do you ensure the identity of the patient? Or the person who brings the patient? Whether he or she is legally related to the patient and has the power to subject the person to psychiatric treatment? Blank looks all around me.
In the entire process so far, nowhere, at no stage, or point of time, any proof of identity of the patient or the relative or both was asked for. So much for the barcode on the UHID card! I went to the records section and shared the experience of my own old phone number showing as registered. But they would not part with the files as they were “highly confidential”. I asked them what if I made a card in the name of the AIIMS director as patient and brought a different person suffering from mental illness, how would they know? Or what if I made cards for the entire Union Cabinet? In the teeming crowds of people, how would they know who is what? What if I meet the doctor with the parchi and tell him my relative is so violent and uncooperative that he/she is not cooperating and can’t be brought? I learn sedatives are prescribed to be mixed with their food to be administered to the patient. All this, without ever checking the identity and authenticity of the patient, relative and their relationship. Wow! And the website has the Prime Minister talking about accountability being the key to services of AIIMS.
A little bit more digging tells me even my daughter is registered as a psychiatric patient in AIIMS records. Neither of us has ever taken any treatment at AIIMS. The struggle to get access to the files continues.
Now, let’s bring the story out of my personal setting and examine its wider implications. Given the system of patient registration, creation of patient treatment record of history of disease, behaviour and life choices of personal nature, we never know who can take advantage of this system to create what kind of paper trail of records. This opens up a lot of criminal possibilities for those who have a criminal bent of mind. Unfortunately, the system at AIIMS has failed to consider this aspect of their registration and treatment system.
For the uninitiated, patients of psychiatry are thoroughly interviewed by doctors and their statements recorded before their disease and ailments are decided. A wrong person being passed off against a right identity means wrong personal information being recorded from a wrong person under a right name, wrong assessment of disease, wrong prescription of drugs. Psychiatric drugs are life saving if they are administered in right doses to people needing them. But administration of these drugs to those not needing them, or in higher doses, can lead to debilitation, leading to their going into a vegetative state.
These medicines are not available over the counter; therefore, a prescription is necessary. Now, why should the person owning the right name worry? For two reasons. For some diseases, like schizophrenia and dementia, relatives of patients get full administrative rights over these patients to administer these drugs with or without their permission or knowledge. With extremely low awareness of mental illness in India, anybody bearing an AIIMS prescription on someone’s name is easily believed as the sane one trying to ‘take care’ of the mad family member.
What if the person claiming to be a relative is actually not a relative in legal terms? What if he or she is exercising administrative rights over another individual using the faulty system of AIIMS? Why should AIIMS not ask for a valid identity proof of the patient, the relative and proof of relationship, especially when they diagnose a person to lose his or her administrative rights handing over his/her life to someone else? What if someone claiming to be a husband is actually the live-in partner? Since living in is not legally recognized by legislation — though some courts have, of late, turned a live-in relationship into a de facto marriage — can such a person take over the administrative rights of a sick person as relative? The same goes for patients suffering from dementia.
What if the wrong person under the right name ultimately dies while the right person is still alive? What if those having or claiming administrative rights misuse this death certificate to misappropriate the right person’s bank accounts, funds, lockers, etc? The general refrain I got from the people I chose at random to share my view of the faulty system at AIIMS was: Why blame the institution that is trying to serve the poor and helpless? Why should it be held responsible for the criminality of others? After all, criminals would misuse any system.
Well, that is where I see the difference between a person running a service providing shop and a visionary leader of an institute of national repute. A visionary visualises all possibilities. The AIIMS system is such that it feeds and encourages social relationships based on control rather than trust. It helps create rewards for those who can be thrown into a controlling situation in certain circumstances.
What is the solution to this? It could be very simple, only if AIIMS wants to set it up. Even mobile connections are being given after strict scrutiny of identity. Only last week, I got a new pre-paid connection at an Airtel shop. They took out a tablet connected to a biometric thumb impression reader. I put my thumb on it and my Aadhaar card showed up on the tablet authenticating who I was. Why can’t AIIMS have this system? Particularly in the psychiatry department — both for the patient and the relative? It would also confirm their residential address. In cases where the disease is such that the administrative rights need to be vested in someone else, why can’t there be a system of proof of legal relationship between the patient and the person accompanying him or her?
My written request to the AIIMS director for tracing the wrong entries in their records of my old phone number and records relating to that and details of my daughter’s registration went unanswered today once again. My request for an official response to the story remained unanswered, too. His office said the director had sent my queries to the medical superintendent and he was examining it. The director too was in a meeting with him and a response to the story would not be possible today.