Our aim is to create a space for better medical data, says ICMR chief

NDQF has been launched to usher in standardisation and enhanced quality in the existing ongoing periodic surveys and routine programme data landscape in India

The Indian Council for Medical Research’s National Institute for Medical Statistics (ICMR–NIMS), in partnership with Population Council, recently launched the National Data Quality Forum. Dr Balram Bhargava, Director General, ICMR speaks to Aditi Phadnis elaborating on how the platform will bring both data producers and consumers on a common platform and ensure efficient utilisation of the quality data in formulating policies. Edited excerpts:

Why are we launching another exercise to collect health-data when India already has the Family Health Survey, the NSSO, the Census?

The National Data Quality Forum (NDQF) is a platform where both data producers and consumers will come together on a common platform to discuss and encourage the inculcation of best practices required to generate good quality data and its efficient utilisation for data driven evidence-based policy formulation. This platform will aim to carve out ways for improving the current practices of data collection, collation and utilisation which can help in achieving robust estimates at district, state and pan India level. 

Such an initiative is not another data collection exercise but has been launched to usher in standardisation and enhanced quality in the existing ongoing periodic surveys and routine programme data landscape in India. We envision that NDQF will provide guidance in standardising tools for indicators emerging from different data sets. When multiple ministries and decision-making bodies refer to these indicators, we hope it will provide them with a guide for selection and appropriate policy changes. It is important that consumers also understand the quality of data before they start utilising the same. India is a very data rich country, if its administrative data is being questioned, platforms like NDQF are critical in providing the solutions to this. 

If more rigour is sought to be introduced in data then are we to understand that the previous health-related data — that told us, for instance that India was in the grips of a diabetes epidemic — was inaccurate?

The entire exercise of conducting surveys is to ensure we get clarity of estimates for any indicator which can be further inferred to achieve clarity about an entire population. Improvement in data quality is an ongoing process and the National Data Quality Forum will guide in achieving a common goal of improved quality of survey and programme data. Currently, the data for any indicator comes from various sources and sometimes the process of conceptualisation, collection, collation differs. Bringing harmony among various datasets is key and one of the major goals of the Forum. 

Every day, there is new data, new technologies that emerge. There is a need to have a robust mechanism and with emerging technologies we can take advantage to create one. For example, earlier the only way to measure height and weight of a child was through the weighing machine and stadiometer (height measuring stand). Now using artificial intelligence, we can try to measure the same variables using the actual picture of the child. This does not mean that the earlier measurement results were incorrect, but simply signifies that one can reduce the efforts of frontline workers and make results more accurate. 

As you know, a Personal Data Protection (PDP) Bill is to be introduced in Parliament. How will this dataset tie in with the PDP?

The PDP Bill focuses on creating policies and procedures seeking to minimise intrusion into the privacy of an individual caused by collection and usage of their personal data. It is also true that over the years there have been rapid advances in technology — leading to large volumes of data being collected for decision making — to benefit the population through services. 

That said, the NDQF is not a platform for generating new data. The forum will bring in new innovations to improve the data quality and in doing so we will be cognizant of ensuring no breach of personal identifiers takes place. Ethical requirements and protecting personal privacy is the bedrock of NDQF while we create a space for better quality data for policy change. 

Who will have access to this data? Data is power — and money. How will you monetise this?

The NDQF envisions following a collaborative approach built on a partnership model to provide solutions on the challenges faced by both data producers and consumers. As stated previously, NDQF does not aim to collect any new data, but initiate a concerted effort, bringing together key stakeholders to create a common data model approach leading to a one stop data repository for health and other domains of datasets in India. New technologies and innovations will be shared with all stakeholders. The new innovations will be introduced as a pilot in one — two districts to check feasibility. If results are positive, then these solutions can be shared for potential funding under the Corporate Social Responsibility (CSR) bodies and scaled up for a wider implementation and change. We envision working with the young bright minds of India, to share solutions to the data challenges we have, and lead the pathway for change. 

There are many commercial entities like the pharma industry and medical device manufacturers for whom this data will be a gold mine. Do you agree?

The point of the NDQF is to improve data quality and policy for India so we as a nation surge towards meeting the outline Sustainable Development goals (SDGs) taking everyone along. The goal of the forum is to create an evidence based eco system to promote health and wellbeing. Pillar 4 of the ICMR Strategic Agenda 2030 talks about enabling evidence to policy action by closing the knowledge to policy gap. We expect the forum to build capacities of all stakeholders, and not a limited set to drive this evidence-based ecosystem to develop a standard policy for data quality assessment by various governmental and intergovernmental bodies to generate a dialogue in relevant policy spheres. 

However perfect or imperfect, India’s data collection agencies collect masses of data but it lives in silos and one set of data doesn’t talk to another. How will your initiative change that?

Often, there are multiple sources of data for the same indicator and the results do not match. This is mainly because they differ in purpose and design, resulting in different physical formats and logical organisation.  However, it is confusing to the data consumers/users to understand which data source to consider for specific indicators. Through this initiative we plan to develop a Common Data Model, which will standardise different data sources into a common format, thus helping cross comparison between various data sources and improve its utilisation.