Registry, health system and Ebola

Published: October 21, 2014
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The writer is a Howard Hughes Medical Institute professor, currently serving as associate professor in the departments of Biomedical Engineering and Medicine at Boston University. He tweets @mhzaman

The writer is a Howard Hughes Medical Institute professor, currently serving as associate professor in the departments of Biomedical Engineering and Medicine at Boston University. He tweets @mhzaman

Earlier this month, I had the pleasure of attending the Grand Challenges meeting at the Gates Foundation. The Grand Challenges idea, started 10 years ago by Bill and Melinda Gates, has been transformative in mobilising innovation and impact both in the public and private sectors, across the world. Organisations and institutions, from the public to the private sector, have used the approach of open and inclusive innovation to catalyse ideas from brilliant minds focused on solving high impact problems. During the meeting, I got the opportunity to meet inspirational innovators from Pakistan. Nearly all of these innovators were female and were doing incredibly profound work across the country and were being recognised for their brilliance, motivation and passion.

Over dinner one evening, one of the colleagues from Pakistan remarked on the lack of registries at our hospitals. Intrigued by this comment, I inquired further. I was told that at most public hospitals, including some of the more prestigious ones, there is no central registry. In other words, we do not know how many patients came with acute chest pains, or trauma in any given year. So the number could be 50 or 50,000, there was no way to know. The registration system simply did not exist at most places. At others, it used old-school notebooks and registers that were often misplaced or simply never kept up to date. When I asked how the hospital can know where to invest, I was simply told, “they don’t”.

I simply could not believe this. I thought we, Pakistanis, were all about numbers. How could a society that spends the better part of each evening discussing how many attended a given jalsa, and spends the whole of the following week bickering about those numbers, does not have data about the sick? I politely nodded that evening but did not quite buy the story about registry.

I was determined to get a bit more information, so I called up a few friends across the country, and unfortunately, they immediately confirmed it. There was simply no reliable registry across our hospitals and as a result no influence of data on our policy. The paltry resources we put towards our hospitals are influenced by personal preferences, lobbying and whim, not data or any registry.

The state of our hospitals, which often lack the most basic equipment, is therefore, not surprising. In Islamabad, for example, I was told that the main public hospital, the Pakistan Institute of Medical Sciences, has one working ventilator, which is not in the best of health, and is reserved only for the VIPs. This is despite the massive need for the instrument on a daily basis. In retrospect, given the health of our hospitals, the revelation that we do not have any data should not have been surprising.

My worry for lack of data or any interest in collecting it is not only because it leads to poor planning and utilisation of resources. It is, in fact, part of a much bigger problem, where we are not doing anything to strengthen or even stabilise our health system. Health system improvement requires data and analysis to understand the burdens of disease across various sectors of population and to identify the choke points in the system. Fragile systems can be saved from fracture with good data and subsequent action.

Speaking of fragile systems, nothing puts a system to test more than an unexpected outbreak of disease. A major reason for the high death toll in West African nations of Liberia, Sierra Leone and Guinea from Ebola stems from weak health systems that were unable to cope with the widespread outbreak of the disease. Under-reporting early on and poor data collection contributed enormously to the current crisis. The lesson for Pakistan is not just in preparing for Ebloa in a knee-jerk fashion, but thinking about how to strengthen the system by having more reliable information.

The whole conversation started with global grand challenges. Our own grand challenge is perhaps, knowing what goes on in our hospitals. Life may be cheap in Pakistan, but counting the ones who come to our hospitals is not a high price for saving our health system.

Published in The Express Tribune, October 21st, 2014.

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Reader Comments (7)

  • Riaz
    Oct 21, 2014 - 12:46AM

    Very nice! I am glad we are now talking about system strengthening. Much needed!

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  • Bano
    Oct 21, 2014 - 12:47AM

    Love it – glad you brought up the women innovators. Much needed! Thank you Dr. Zaman.

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  • Oct 21, 2014 - 2:58PM

    Well all thanks to malala.

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  • Rehan
    Oct 21, 2014 - 4:14PM

    I must admit that I am shocked to hear this. I did not know that we do not have any registries. Does it not bother people that we do not account for how many patients do we see? How are we supposed to plan for next year? how are we supposed to put resources where they are needed? I have had the unfortunate experience of taking my father to PIMS in Islamabad and the lack of resources was evident. It is really sad that we have systematic problems in this area, that the author is pointing and nothing is done about such a fundamental problem.

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  • Nadia
    Oct 21, 2014 - 5:00PM

    Great article highlighting a crucial issue in the health sector. Thank you.
    “Nearly all of these innovators were female and were doing incredibly profound work across the country and were being recognised for their brilliance, motivation and passion”….more on this next time please!!

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  • Saba
    Oct 21, 2014 - 5:44PM

    A country that does not count it’s living (that is no census for 20 years) can not be convinced to count it’s sick and it’s living.

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  • Sana
    Oct 21, 2014 - 7:02PM

    As a doctor, I know that even when we have tried to convince the hospital management to create registries, we have not gotten anywhere. They are simply not interested. It is because hospital management is not in the hands of real clinical staff. They have no idea what the needs are.

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