Medical records are almost always electronic in this day and age. They can contain past diagnoses and treatments, as well as medical images, test results, immunization history, and allergies. Ideally, they can be shared from one institution to another, reducing repeat testing and diagnostic error. Unfortunately, this isn’t the case. There is currently no standard electronic medical record system (one resource listed twenty different systems, all used by at least several thousand people). Getting medical records can mean working with an entirely different system than what your current medical facility has. If records are not received in time or are in a format that can’t be read, tests may be re-done when there’s no need. Physicians share many of these frustrations with patients; one study found that problems and challenges with medical records were the top complaints among the surveyed physicians. They also reported that the inability to access records from another clinic is a major source of delay and a potential threat to patient safety: if a doctor doesn’t know that a patient has an allergy or a potentially serious medical condition, it could be fatal.
Simply getting your medical records is a headache enough, but there’s one other reason for getting those records: clinical trials or research. There are hundreds or more being conducted all the time. New medical research depends on these trials. Since medical records aren’t usually available to those running the trials, they aren’t aware of many potential patients. The trial subjects are almost always referred by word of mouth from a doctor who’s aware of the trial. Electronic medical records could be a great boon in selecting qualified candidates; for example, those running the trials could access the records to see who was available. (The ideal system would allow patients to opt in or out of any trials, making sure that those who don’t want to be considered won’t come up. It would also strip any identifying information from the record.) More participants would lead to quicker trials (since they don’t have to spend as much time searching for eligible candidates). That could, in turn, lead to faster approval of treatments.
The potential of such a system is promising, but does it exist? Ciitizen has one. The system it has designed gathers the medical records of cancer patients in one place to make getting medical records a snap. Anyone who wants to opt in to the system doesn’t need their medical records in their own possession; they can simply enter their doctor’s information, and a request will be sent to them. In addition, anyone who has their records in the system can be notified about any relevant clinical trials. Since the patient can access their records, they give copies to any doctors they see in the future. Those records can also be used as part of research that doesn’t involve a direct clinical trial; they can be compared to others as part of an analysis of the current treatment method. In turn, this can lead to more effective clinical trials, since they are based on already available data.
Besides the obvious benefits that a system like this has in terms of getting medical records and adding to clinical trials and research, it also puts the patient in control of their health. Medical records no longer have to be a thing of mystery; the patient can know everything in them. If the patient catches an error, it can be corrected. If something is confusing or not understood, they can get an explanation from whoever wrote it. Many patient advocacy organizations support the Ciitizen system.
Connectivity in getting medical records means that physicians have fewer headaches, patients have more control over their medical history, research and clinical trials have access to a potentially endless amount of data, and institutions of medicine no longer worry about whether their system is compatible with others. That’s more than enough to benefit everyone.
Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures. Ready to control all of your medical records in one place? Sign up today in less than 5 minutes!