Ethical Medical Data for Research

Vansha Mahajan
Oct 12, 2018 · 4 min read

We live in a generation where technology is changing so rapidly that by the time you finish reading this blog somewhere in some corner of this tiny plant a new technology may have come into light.

A lot of people believe that data is gold, but the reality is that its value is unimaginably more than gold. Almost all the organizations use market research data to figure out the needs and want of their customers and accordingly develop products. Data helps to solve problems by giving customer insights, reducing anomalies, increasing accuracy and helping researchers get better.

Even with advanced technologies at our disposal, we have missed multiple industries where we could utilize the magic of data. One such field where utilization of available data can be put to great use is healthcare industry. It is true that medical data is hard to get as it falls under PII, but a lot can be achieved by whatever data is available to us. This data can be as simple as a doctor’s prescription or a complete report of a meticulous scan like an MRI report.

Importance Of Data In Medical Research

According to statistics, 3 out of 4 drugs given to cancer patients don’t work. The reasons may be many, but the lack of medical data available for research is something that has been widely noticed. Thus, in order to conduct quality research, rich and accurate medical data is the key.

Pooling Data, also known as Meta-Analysis, is defined as a method that uses statistical techniques to combine results from different studies and obtain a quantitative estimate of the overall effect of a particular intervention or variable on a defined outcome, i.e., it is a statistical process for pooling data from many clinical trials to glean a clear answer. Meta-analysis produces a stronger conclusion than that provided by any individual study (Source).

A number of counties have started focusing on anonymous pooled medical data to provide better treatments to the patients. Japan was one of the first countries to pass a bill regarding valuable medical data collection in 2017. The law, commonly called Jisedai Iryo-kiban Ho, roughly translates to the next-generation medical infrastructure law. This will allow medical big data to be pooled anonymously so it can be utilized for research into diseases and the development of new drugs. Hospitals and clinics can now share and use this medical information by taking consent from the patients. Also, the patients have the option to opt out if they don’t wish to be a part of it.

Challenges in Pooling in Data

Medical data is highly sensitive and falls under PII, giving rise to challenges like how to pool data, data privacy, and security

  1. Pooling of medical data

One of the main hurdles a project faces is the decision on how to best pool or not pool clinical data for submission to regulatory authorities. A plan needs to be developed in order to identify which studies and which data should be pooled for any given deliverable from both an efficacy and a safety perspective.

2. Protection of medical data

A few years back, Japan went through a cyber attack that resulted in the data breach of 1.25 million cases of personal data at the Japan Pension Service in 2015. Privacy protection is of the utmost importance, especially with medical data. Thus, making the data security one of the major challenges in data pooling.

NHCT is one example out of the many applications that are working towards the eradication of the above challenges. NHCT allows its users to upload their personal and medical data like prescriptions, lab reports and visual data like X-ray or CT or MRI scan report. This data can be shared across the medical community like doctors and insurance providers. This way doctors can get a holistic and meticulous view of health problems faced by a user and give a precise treatment.

Further, NHCT uses blockchain technology. Blockchain when coupled with IoT devices, successfully captures critical patient data whilst not allowing any unauthorized access. The control over who gets to access the medical data lies with the patient, thus, making the patient the owner of their data.

Applications like these are creating a paradigm shift in the healthcare sector. People need to realize the importance of sharing their valuable medical data to trusted organizations. The efficiency of medical research, as well as treatment, can be improved drastically with the utilization of a large number of data.

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