Finding clinical trials for metastatic breast cancer can be a long and exhausting process, and time is a determining factor. The goal is to find a therapeutic alternative through a clinical trial, and success depends on not only finding the right one but also being ready to apply to it.
When looking for clinical trials, there are three key aspects to consider: (1) you must be able to apply to the largest number of clinical trials that match your diagnosis (2) in the shortest time and (3) at the lowest cost. So, how do you get ready? You must have up-to-date, chronologically organized medical records in an easy-to-share format.
The reason medical records are so important is that they provide all the information that doctors require to determine if a candidate meets eligibility criteria to be accepted in the study. If the patient has previously undergone all the required testing and has documented it in their medical history, the process will be faster and the patient will avoid additional expenses in redundant testing.
Accessing your medical records can be challenging
Now that you understand the importance of keeping a well-organized medical history, the next step is getting access to it. At this point, you face several obstacles in the health system, including the lack of standardization in how medical records are kept and the time this process takes.
- A broken system puts the burden on the patients. The American decentralized health system makes it challenging to manage guidelines at a national level in terms of how patients’ medical records are kept and how patients can access them. In fact, one of the first obstacles that many patients face when requesting their medical records is ignorance on the part of health institutions or physicians regarding the patient’s right to access them, which they do have, according to the Health Insurance Portability and Accountability Act (HIPAA) of 1996 Privacy Rule.
- There’s no standardized way to keep records. Each institution follows its own standards. While some keep medical records in digital format, many others still use paper. Patients often undergo several tests, and not all of them are performed by the same provider, so there will be different protocols to retrieve each test result and medical records will be in different formats. For example, in the case of imaging studies, the patient may receive a printed report and must request a CD with copies of the images in order to access them. On other occasions, administrative procedures determine whether a test result should be registered depending on insurance coverage. This lack of standardization makes the process even more complex for patients who may not feel well.
Many patients must surpass a broken system with a significant lack of standardization in order to access their medical records. This can delay the clinical trial finding process and often makes many metastatic breast cancer patients opt for redundant testing instead of waiting for the system.
Keep in mind that you are not the only person requesting a copy of your medical records. If your healthcare provider keeps a paper record, the scanning or copying process will take at least thirty days, but the unexpected can happen and the process could take longer, making it less likely for you to find best-fit clinical trials for metastatic breast cancer.
Why use digital record systems?
Having a digital record system is the solution to all the aforementioned obstacles. It will facilitate the process of:
- Finding clinical trials: A digital record system facilitates the process of applying to participate in clinical trials, thus reducing costs and saving time. It can group both files that previously existed on paper and digital files (like imaging studies). This system has a tool that can facilitate the access, review, and sharing of medical information the moment that you or your medical information manager find a clinical trial that is likely to match your case, increasing your chances to participate.
- Getting a second opinion on treatment: Sometimes, patients will look for a second opinion about a certain treatment. With metastatic breast cancer, your treatment options may be limited by your doctor’s experience or preferences, so you may want to look for alternatives. In that case, you will need to ask for a second opinion, and the new doctor will need to understand your particular case. It will be much easier if you can share your medical records with them through a digital record system. It can also benefit you whenever you want to be transferred to another institution or ask for another specialist opinion.
- Generally keeping organized: A digital record system facilitates the organization. Once your medical history is organized, it’s easy to add new data to the corresponding section.
- Keeping family/caregivers in the loop on your care: Having a digital record system is easier because you will have authorized access to your medical records without any delays.
Ciitizen is a free clinical trial matching service that helps advanced and metastatic breast cancer patients regain control over their medical records and find the best-fit clinical trials for metastatic breast cancer based on their medical history.
The Ciitizen clinical trial matching service has been designed to simplify the process of finding the right clinical trial for you. It is a simple three-step process in which you answer a few questions, create a profile, and leave the rest to us. We select the available trials based on your answers and guarantee the confidentiality of all your information. Although we are here to make the process easier for you, control will remain in your hands: you are the only one who can decide whether to participate and for how long.
Remember, by participating in clinical trials for metastatic breast cancer, you not only get access to a therapeutic alternative, but you are also part of finding the cure for tomorrow.
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!