August 4, 2019
While you seek treatment from your doctor or get admitted to any hospital, lot of healthcare data gets generated, which is collected in various forms like hard copy files, doctors notes or on digital platforms like Electronic Medical Records (EMRs). This data is collected by healthcare providers including doctors, hospitals and research companies, helping them to understand the impact and usefulness of various treatments. Collected data include not only your personal health information (PHI) like age, sex, date of birth, height, weight etc. but also data related to your disease along with treatment information.
Though it is highly important to analyse patient data for research purpose to bring better treatment options to the world; as a patient you need to understand that your data can be used for research purpose only with your full consent. When you get admitted in a hospital or a clinic, you have all the right to get the details of your diagnosis, prescriptions and information of your medical condition from the healthcare provider. Even at the time of leaving the hospital, you have the right to obtain a detailed summary of your stay, the treatment that was provided, the medicines that you were given along with discharge summary report.
Just like European Union General Data Protection Regulation (GDPR) has set out eight points for data rights of patients in Europe, the government of India too has set out an act to protect the data of its patients. This data protection guidelines were set in 2018 and is called DISHA – Digital Information Security In Healthcare Act. This act allows you to retain the confidentiality of your data and the right, whether you want your data to be shared or used by any particular party or institution in India or not. This draft also mentions that any health data including physical, physiological and mental health condition, sexual orientation, medical records, history and biometric information are the property of the person, who it pertains to and the owners have all the right to privacy, confidentiality, and security of their digital health data. As data owner, you are given the right to know as whenever your data is accessed by a person or any organisation, you need to be briefed regarding the usage of data, how the data is shared, stored and used.
Of all the aspects related to understanding your healthcare data, the most important is data privacy or the protection of your data. You should not hesitate to ask your healthcare service provider, insurance provider or the employer, regarding the measures that they are being taken to protect your data from falling into others’ hands.
Your data is your property until you give permission for its judicious use. If used wisely, this data will help doctors and researchers find new means and ways to treat or improve the existing treatments for a better tomorrow.