August 12, 2019
In today’s world, where any kind of data is considered as an important asset, how can we forget about the copious amounts of healthcare data? Data about patient’s health state, if captured in a systematic and standardised manner, is of extreme importance in order to make wise decisions about improving or maintaining population health. If data capture in a complete, accurate, and standardised manner fails to happen, there will be scarcity of necessary information about health, which may alter the course of healthcare research.
As patients, data on your symptoms and experiences is significantly important. It can be used to understand the following aspects of your health:
Along with data from clinical trials, your data can be sourced from your electronic health records (EHRs), healthcare registries and databases, data stored on various clouds, such as those associated with wearable technologies, and so on. Many times, perhaps naively, we tend to forget that our medical information is far more valuable to other healthcare stakeholders than to us. It can be used ethically, with your consent, by stakeholders including pharmaceutical companies and drug manufacturers, to constantly improve their products and services, as well as by government and regulatory bodies to assess and improve healthcare policies.
Having said that, such data are not often considered important or treated with immense care by many in the industry. Often, it is not trusted to have enough potential of being used across healthcare enterprises. For instance, healthcare appears to be one industry wherein data on healthcare transactions is often considered to be an administrative burden or data quality is not regarded as a key focus of healthcare function. As a consequence, such data are then used to make assumptions and decisions supported by poor data quality.
Therefore, your data, which is unique and of utmost importance, must be recorded/collected in an ethical, secure, and precise manner. Today, more than quantity of data, the quality of data is increasingly preferred to deliver accessible and improved care to patients, as volume-based care shifts towards value-based care. Hopefully, encouraging patients to consensually share their data and raising awareness on the same will emphasise on a more accurate definition of the patient’s health state and such data can be used to improve the overall care delivery.