My Health Data Path

All patients in this clinic, including your mother, have an electronic medical record, which is often referred to as an EMR. The EMR contains updated information on their condition, visits, tests and treatment plan. By default, this information is only made available to the patient and their hospital care team. Because you are part of your mother's family care team, there is a way for you to also gain access to her records.

In order for you to get access we’ll need to have your mother provide her permission to share her health data with you. This is called consent. Only then, will we be able to share this data with you. In a situation where your loved one cannot provide direct consent based on their condition, we would have to discuss alternative processes.

For our specific clinic, we do have an online patient portal where you can access your mother's information. We will provide a login so that you can access the online patient portal. There you will be able to find a digital record of her hospital visits, tests results, and other updates on her condition.

Access to your mother's EMR data would be for you only, unless your mother also grants consent to others - that is her decision. With any EMR data, institutions have privacy and security measures in place that limit access to only the people who your mother chooses to share her information with. Any other individuals wanting or needing access to her EMR data will require specific consent from your mother, similar to the process that you will go through for you to gain access her data. Having said that, there is nothing that this institution can do to prevent you from sharing information once it is in your hands. We would advise you though, to ensure your mother is OK with this because it is her personal health information, which is considered sensitive and private.

As a general rule, only your mother's health care providers can see her personal health information. Anyone else must have her consent to access their data, however there may be some exceptions such as hospital administrators who have access to the EMR system. There is always a level of risk when you decide to share data, but the risk level in this circumstance is low. The people who collect data are called Data Custodians. The Custodians are there to ensure that your mother's data is collected in a secure way. Then there are people responsible for protecting her privacy - they are called Data Stewards and they are trained in this regard. They would be held accountable if unapproved users accessed her data. Only approved users of data will be able to access and see her information. The people who handle personal health information must obey the laws that do not permit them to share data without permission. If your data gets shared without permission, the person would be held responsible. Finally, if ever you discovered that your mother's data was shared inappropriately, you could pursue charges.

Care decisions should always be made with your mother's physician, nurses and care team. The information in the EMR could help you and your family members have more informed discussions with the care team.

If you believe any of the information in the portal is inaccurate, out-of-date, or incomplete, your mother can request a correction. Requests for corrections should be directed to the care provider who originally collected the information (the data custodian).

We try our best to ensure EMR data is accessible and available for any new member of the care team. However, the ability for her new care team to access her data is dependent on many things. We would try to facilitate access whenever possible and we would suggest that you let your mother's current and new care team know if you are planning to change hospitals, so we can be better prepared to see how we can help with access or the transfer of her data.