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207© 2021 Indian Journal of Urology | Published by Wolters Kluwer - Medknow
National database of urological malignancies: The
vision and road ahead
“
Data is the new oil. It’s valuable but, if
unrefined, it cannot really be used.
” This
quote by Clive Humby (2006) illustrates both the
importance of data collection and the necessity
of processing such data to yield meaningful and
actionable inferences. Although randomized trials
occupy the highest level of evidence in science,
prospective cohort studies that can determine
the natural history of disease have unparalleled
importance in medicine. Cancer, with its finite
lifecycle, allows stringent documentation which in
turn enables the identication of subtle differences
in outcomes that may be inuenced by patient,
disease, and treatment factors. Such data, if shared
and collaborated between many centers, increases
the robustness of inferences which can be drawn and
the recommendations which can be made.
The Surveillance, Epidemiology, and End Results
Program database is one such example that collects
cancer data from cancer registries and covers 34.6%
of the United States (US) population.[1] The Cancer
Moonshot initiative in the US was started in 2016
and one of the key goals was to improve cancer data
capture and sharing across institutes and enhance
collaboration.[2] In the United Kingdom (UK),
the National Cancer Registration and Analysis
Service (NCRAS) captures cancer data. It collects data
from the National Health Service where most of the
UK population (>98%) is registered. The strength of the
NCRAS database is the national coverage with quality
data, standardized disease coding, data completeness,
and de-duplication of data across registries.[3] However,
it has limited data on cancer recurrence, progression,
quality of life, and other lifestyle factors.
While there is no lack of technical expertise and
resource availability in India, we do not have robust
data-keeping or collaborative efforts in maintaining
a national database.[4] The National Cancer Registry
Program–National Centre for Disease Informatics
and Research of Indian Council of Medical Research
collects Indian cancer data from various population
or hospital-based cancer registries since 1985.[5]
However, the population-based cancer registries in
India have a poor coverage, lack of follow-up data
and no data exchange between the registries, limiting
their use in generating for population inferences.[5,6]
The Government of India started the National Digital
Health Mission recently, acknowledging the need for a
digital health database.[7] The National Database of Urological
Malignancies (NDUM) is a realization of the goal to have
a collaborative database of selected urological cancers,
populated by data from multiple centers across India.
THE INITIAL STEPS
In 2016, the Urological Society of India initiated a consultative
process to determine the structure, management, and
operating procedures for a pan-India database of urological
cancers. These consultations focused on identifying
the important cancers, aspects of disease that could be
uniformly captured at institutions of varying expertise,
methods of securing data, and of providing academic
credit to individuals who contribute to this exercise.
This was followed by drafting of data sheets, creation
of standard operating procedures (SOPs), and securing
ethics approvals from the institutional review boards of
the participating institutions. Each of these steps required
multiple attempts, meetings, and modications before the
creation of a dedicated website for data recording (
www.
usi-ndum.org
). NDUM is currently designed to capture
the basic demographic and standard disease parameters.
However, it could be the starting point for collaboration
and is an evolutionary process that allows more complex
disease data capture in the future.
OPERATIONAL DETAILS
NDUM at present has databases for five urological
cancers (Prostate, Bladder, Kidney, Testis, and Penile
cancer). Five institutions have been identied as nodal
centers, each with a designated nodal coordinator, to
monitor data for each of these cancers. Any urologist in
the country can register to feed data. The structure and
SOPs (https://usi-ndum.org) aims to address common
concerns about such databases such as homogenization to
allow search functions, validation of data, anonymization,
security with logging all access, and most importantly, a
well‑dened algorithm for allowing academic credit to the
contributors.
THE JOURNEY SO FAR
In the last 1 year, the data of 329 urological cancer patients
have been collected. While it is still too soon to analyze the
data, a few interesting ndings were that urine cytology
is obtained in only about 15% of patients with bladder
Editorial
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Bora,
et al.
: National Database of Urological Malignancies
208 Indian Journal of Urology, Volume 37, Issue 3, July-September 2021
cancer and 20% of bladder cancers were diagnosed at an
advanced stage. Prostate cancer was suspected on digital
rectal examination in 58% of cases while prostate‑specic
antigen screening-based detection alone occurred in only
6%. About 46% of kidney tumors presented with a mass and
hematuria and was not detected on screening. Up to 30%
of patients with penile cancer had unilateral or bilateral
palpable groin nodes, showing pick up of disease at an
advanced stage. While these data may be skewed because of
the small numbers, they are an important pointer of what the
real-life data in the country may be and would profoundly
affect our detection and treatment focus.
CHALLENGES
There are many challenges for a multi-institutional
collaborative database. In India, health record keeping is still
either on paper or on a hybrid system having both paper and
electronic databases.[3] The data from various centers need
to be of a standard quality and at an interoperable interface.
The routinely collected data in a hospital is not meant for
research and may be incomplete, heterogeneous or very
large.[8] In India, access to healthcare is variable, leading
to a fragmented data. Urological cancer care is provided
by general surgeons and oncologists apart from urologists.
NDUM will clearly not be able to provide a complete picture
at the moment.
One of the important aspects of a database is its privacy
and security which is regulated by the Health Insurance
Portability and Accountability Act in the US.[9] In India,
the Information Technology Act 2000 and the personal
protection bill 2019 govern this aspect.[10]
While many of these may be overcome in a prospective
database, one of the most important aspects is the need
to generate faith and trust among the contributors. Why
should busy clinicians spend time and effort to populate the
database? If data is oil, why should they give theirs away?
Why should they not publish their own papers and get the
accompanying glory? And, nally, what if their results are
poorer than their contemporaries and this gets disclosed?
Addressing these concerns may be the bedrock of success
and the SOPs of NDUM aim to mitigate this fear. This, the
rst publication from the database, showcases some of the
safeguards that have been put in place. It gives credit to all
who contributed but also places a responsibility on them
for their authorship.
THE FUTURE
Considering the volume of patients treated in India, we sit on
a goldmine of data. Generating interest and faith in NDUM
will be the most important task before the USI. While
providing logistic support will be useful, the most important
hurdle is of intent rather than ability. NDUM is the rst
of its kind collaborative database in urology in India. Data
accrued in NDUM shall enable Indian urologists to frame
India specic treatment guidelines, benet our patients,
and our members. The future goals of NDUM include
expanding its scope in terms of diseases and contributors,
generating testable hypotheses regarding disease causation
in India, and helping devise novel diagnostic and treatment
strategies applicable to our population. NDUM will also act
as a surgical audit providing benchmarks that practitioners
may aim to achieve.
The launch of NDUM is clearly a progressive step toward
bridging a gap which we all know exists. Prioritizing the
progress of NDUM would certainly translate into better
patient care and in making our global presence even more
prominent.
Girdhar S. Bora, Gautam Ram Choudhary1,
Vijay Kumar Sarma Madduri1,
Brusabhanu Nayak2, Uday Pratap Singh3,
Gagan Prakash4, Rajeev Kumar2*
Department of Urology, PGIMER, Chandigarh, 1Department
of Urology, All India Institute of Medical Sciences, Jodhpur,
Rajasthan, 2Department of Urology, All India Institute of
Medical Sciences, New Delhi, 3Department of Urology and Renal
Transplantation, SGPGIMS, Lucknow, Uttar Pradesh, 4Department
of Surgical Oncology, Tata Memorial Centre, Homi Bhabha
National Institute, Mumbai, Maharashtra, India
*E‑mail: rajeev.urology@aiims.edu
REFERENCES
1. Surveillance, Epidemiology, and End Results (SEER) Program. Available
from: http://www.seer.cancer.gov. [Last accessedon 2021 May 25].
2. Agus DB, Jaffee EM, Van Dang C. Cancer Moonshot 2.0. Lancet Oncol
2021;22:164‑5.
3. Henson KE, Elliss‑Brookes L, Coupland VH, Payne E, Vernon S, Rous B,
et al. Data resource profile: National cancer registration dataset in
England. Int J Epidemiol 2020;49:16‑16h.
4. Pai MM, Ganiga R, Pai RM, Sinha RK. Standard Electronic Health
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s10742‑020‑00238‑0. [Last accessed on 2021 May 25].
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6. Behera P, Patro BK. Population based cancer registry of India – The
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7. Bajpai N, Wadhwa M. India’s National Digital Health Mission.
Available from: https://academiccommons.columbia.edu/doi/10.7916/
d8‑wq8f‑9094. [Last accessed on 2021 May 25].
8. Gupta VG, Bora GS, Mavuduru RS. Big data in third world countries:
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9. Health Insurance Portability and Accountability Act of 1996. Available
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Bora,
et al.
: National Database of Urological Malignancies
Indian Journal of Urology, Volume 37, Issue 3, July-September 2021 209
10. Personal Data Protection Bill 2019. Available from: https://prsindia.
org/billtrack/the‑personal‑data‑protection‑bill‑2019. [Last accessed on
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This is an open access journal, and articles are distributed under the terms of
the Creative Commons Attribution‑NonCommercial‑ShareAlike 4.0 License,
which allows others to remix, tweak, and build upon the work non‑commercially,
as long as appropriate credit is given and the new creations are licensed under
the identical terms.
Financial support and sponsorship: Nil.
Conicts of interest: There are no conicts of interest.
How to cite this article: Bora GS, Choudhary GR, Madduri VK, Nayak B,
Singh UP, Prakash G, et al. National Database of Urological Malignancies:
The vision and road ahead. Indian J Urol 2021;37:207‑9.
© 2021 Indian Journal of Urology | Published by Wolters Kluwer ‑ Medknow
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DOI:
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