August 8, 2019
Any information regarding your health, medical condition, illness, hospitalisation that you as a patient provide to your doctor, hospital, medical insurance constitute medical data. There are several aspects to data collection, storage and usage. As a patient, you should be aware of these aspects. However, a few main points are important for you to understand and be knowledgeable of.
Why is my healthcare data being collected?
Medical data is collected from all patients seeking healthcare to understand how a disease behaves in a population. Or how a treatment is used, implemented and if it is useful or not to the patients receiving them. It will also help to understand the progression of a disease over time and in different set of people. It helps to understand if a particular treatment is working or not OR if a particular procedure is helpful or harmful to the patients receiving them. For hospitals and clinics, they collect the data to understand the type of patients who seek healthcare in their facility and look for improving the quality of care and patient management. It can also be collected to understand if a health programme is being helpful or not for the patients receiving it.
How my healthcare data is going to be used?
As a patient when you provide data, you have the right to know as to how it will be used and for what it will be used for. Data can be used to analyse the trend of a disease, to see how a given treatment is working in patients or to see if there are any harmful effect of any treatment. It can also be used by insurance agencies to understand the nature of claims and help them allocate money for it accordingly. Data can be used by Government authorities to device healthcare policies for its citizens. It can be used to anticipate future trends and be treatment ready. Data can also be used to take preventive measures.
Who are the owners of my healthcare data?
When you seek care in a hospital or a clinic, the hospital or the clinic can then be referred to as data holders or custodians of your data, however, the ownership of your data still remains with you. The data that you provide is owned by you and as a patient, you retain all the right to access it and get a copy of your medical records at any given point of time. The original medical records however will be held either by the hospital, clinic or institution, where you seek medical care from.
How will my data be protected from misuse?
Data handling is an important aspect that you as a patient should be aware of. Once you have provided your data, you should understand the implications of its usage. There are very strict regulations by the countries in preventing the misuse of the data that you have provided. In India, the Digital information Security in Healthcare act (DISHA) has been implemented to ensure the safety of your data. This Act ensures that your electronic data is safely stored, appropriate security measures are in place to prevent it from misuse or mishandling. It also ensures that in the event of data exchange, sufficient security measures are in place to do so. Similar regulations are present in the UK, EU and US to protect patient data. Also, the usage of data will only be based on the consent that you have provided to the respective institution or health care provider.
Will I have access to my data after I provide it?
Once you have provided your data to any health care provider, you have the right to access it. The data is owned by you, although the medical record is owned by the physician or the institution where you took medical care from. As a patient, you are entitled to obtain a copy of your medical records that has been stored. The copy should be provided to you free of cost.