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Insights into Editorial: Needed, a public health data architecture for India

 

Introduction:

In a country perennially thirsty for reliable health data, the National Family Health Survey (NFHS) is like an oasis.

It has a large volume of data that is openly accessible. The report of the fifth round of the NFHS was recently released. Since then, we have had a spate of articles by journalists and scientists covering different aspects (malnutrition, fertility, domestic violence to name a few).

It is the go-to source for many researchers and policy makers and is frequently used for various rankings by NITI Aayog.

 

What is Public health data?

Health data is any data relating to the health of an individual patient or collective population.

Public health data is any data related to health conditions, reproductive outcomes, causes of death, and quality of life” for an individual or population.

Health data includes clinical metrics along with environmental, socioeconomic, and behavioral information pertinent to health and wellness.

This information is gathered from a series of health information systems (HIS) and other technological tools utilized by health care professionals, insurance companies and government organizations.

 

Brief history of National Family Health Survey (NFHS):

  1. The NFHS is a large survey conducted in a representative sample of households throughout India which started in 1992-93 and is repeated at an interval of about four to five years.
  2. It is the Indian version of the Demographic and Health Surveys (DHS), as it is known in other countries. Currently, the survey provides district-level information on fertility, child mortality, contraceptive practices, reproductive and child health (RCH), nutrition, and utilisation and quality of selected health services.
  3. The respondents are largely women in the reproductive age group (15-49 years) with husbands included.
  4. Over the years its scope has been expanded to include HIV, non-communicable diseases, or NCDs (tobacco and alcohol use, hypertension, blood sugar, etc.), Vitamin D3.
  5. It has now become an omnibus train where anyone and everyone is free to climb into for a ride. It offers something for everyone.
  6. While there is a level of efficiency in adding some questions to an existing survey, this has been lost a long time ago in the NFHS.
  7. In NFHS-4, the household questionnaire had 74 questions. The NFHS-5 questionnaire was even longer. The size of the survey has obvious implications for data quality.

 

Utilization of Public health data Architecture:

  1. The national repository of patient data will enable hospitals, healthcare units and doctors to access detailed treatment procedures.
  2. Help understand changes in patients’ symptoms and changes through access to their medical history.
  3. Provide patient data from across the country to serve as precedent to understand and provide better healthcare.
  4. Understanding patterns and analysing trends of disease with access to grass root level data. Facilitating the creation of better healthcare policies and programs.
  5. Prevent medical errors and incorrect diagnosis through access to medical history of patients.
  6. Minimize paperwork and documentation while transferring patients from one doctor/hospital to another, saving precious time. Preparing more efficient plans for medical emergencies like covid19.

 

Alignment is difficult:

  1. There have been previous attempts to align these surveys but they have failed as different advocates have different “demands” and push for inclusion of their set of questions.
  2. The NFHS is the only major survey that India has a record of doing regularly. One does not know if and when the other surveys will be repeated.
    1. For example, we do not have any surety that the second round of the NNMS will be conducted, though it is due. So, the general thinking is that “do whatever is possible, as something is better than nothing”.
  3. Multiple surveys also raise the problem of differing estimates, as is likely, due to sampling differences in the surveys.
    1. For example, in tobacco, where differences in tobacco use estimates of the Global Adult Tobacco Survey (GATS) and the NNMS needed a lot of effort at reconciliation and explanation.
    2. Another example is the issue of wide divergence in sex ratio at birth reported by the NFHS and the Sample Registration System (SRS).
    3. The SRS is a better system for it as it continuously enumerates the population unlike the NFHS which is a cross-sectional survey well known for recall biases.

 

Proposals of New set of national-level indicators and surveys:

We have to identify a set of national-level indicators and surveys that will be done using national government funds at regular intervals.

There is a proposal of three national surveys:

  1. An abridged NFHS focusing on Reproductive and Child Health (RCH) issues,
  2. A Behavioral Surveillance Survey (focusing on HIV, NCD, water sanitation and hygiene (WASH)-related and other behaviours) and
  3. One nutrition-biological survey (entails collection of data on blood pressure, anthropometry, blood sugar, serology, etc.) done every three to five years in a staggered manner.

We need to look at alternate models and choose what suits us best. This does not include data sources on mortality and the health system.

 

A roadmap:

  1. We have to ask States to invest in conducting focused State-level surveys. States have to become active partners including providing financial contributions to these surveys.
  2. For a detailed understanding on some issues, each round of survey can focus on a specific area of interest.
  3. Other important public health questions can be answered by specific studies (which may or may not need a national-level study), conducted by academic institutions on a research mode based on availability of funding.
  4. It is also very important to ensure that the data arising from these surveys are in the public domain.
  5. This enables different analyses and viewpoints to be presented on the same set of data enriching the discussion and unlocks the full potential of the survey.

 

Conclusion:

It is time we questioned this rationale and end the over-dependence on one omnibus survey to provide all public health data for India.

The experience of the NFHS and other surveys has conclusively demonstrated our capacity to conduct large-scale surveys with computer-assisted interviews and reasonable quick turnaround and cost.

It is important to use data in public health delivery, and data can be used in many ways and for a variety of critical purposes.

Data is crucial to demonstrate and evaluate the impact of an intervention, monitor progress towards a goal, determine barriers to care, and influence public policy.

We have the technical capacity to do so. All it requires now is the political will.