Access Is Everything
Who owns medical records? As a patient, you might think that they belong to you. After all, they contain information about your body, your symptoms, and your diagnosis. But the ownership of records is much more complicated than you might think.
As anyone who has ever tried to collect their medical records knows, it’s not an easy task. Running from one healthcare provider to another and making endless phone calls to hospitals, imaging centers, surgery centers, and treatment and testing sites make for a time-consuming and frustrating process. Trying to assemble years of medical records while battling cancer can take your focus away from your treatment and cure.
Historically, doctors collected a patient’s symptoms, ordered studies, and kept results, notes, and charts in their offices. It became accepted practice that doctors owned the physical records, while patients owned the data inside of them. But as more doctors began to work for larger health corporations and with the advent of electronic health records (EHR), ownership became more confusing.
Ownership or Access: Which Helps a Patient More?
There is no federal law in the United States to spell out who owns medical records. The Health Insurance Portability and Accountability Act Privacy of 1996 (HIPAA) says that patients own the information inside their medical records. Patients must give health care organizations permission to share their data with other health care organizations.
Laws about records ownership vary by state. New Hampshire is the only state that definitively says that patients own the information inside their records. Twenty states say that the records belong to either the provider or the facilities, and twenty-nine other states make no mention of who owns medical records.
Does Medical Record Ownership Really Matter?
For cancer patients, access to their records is ultimately more important than owning the records. Access gives them and all their healthcare providers the ability to see the overall progression of their disease and treatments. This access is needed to seek second opinions, try appropriate new treatments, and join clinical trials.
Barriers to Access Still Exist in 2021
Knowing that you have access to your medical records is one thing, but actually collecting and compiling those records can be challenging. There are many barriers to cross, even in 2021.
- HIPAA says that facilities and providers have thirty days to provide records after your request, at a reasonable cost. But thirty days can seem like an eternity if time is of the essence in your treatment.
- Some patients choose to repeat expensive testing rather than wait weeks for their records, potentially leading to financial burdens and stress.
- Providers are allowed to charge reasonable fees for copying and mailing them each time you access the records, but they cannot refuse to provide the records. But EHR vendors who store them in cloud-based systems actually do own the data. They can deny patient access for non-payment of bills and other reasons.
- There is no uniform way to get the records. Each facility and provider has different forms to fill out to collect the records. They also have no incentive to get the records to you quickly.
- What happens if a facility closes? What if more than ten years have passed—the legal limit for holding records? What if your doctor dies or is no longer practicing and your records are part of their office?
All of these potential barriers can slow down or prevent you from gaining access to your records. Focusing on cancer treatment and side effects is draining enough. Having to fight for your medical records and stay on top of where you are with them can be exhausting.
Gaining Access Is Half the Battle
Once you have the records, they may be in various formats: images on DVDs, paper copies, and PDFs. Many patients organize their records in one location, which is helpful when bringing them to any new provider for second opinions or treatment options.
Many patients want to use their records to apply to clinical trials for cutting-edge treatments. Finding clinical trials and matching their specific criteria is time-consuming because each trial has different criteria and requirements. It can be exhausting just going through treatment, never mind finding the right clinical trials for your specific type of cancer.
Ciitizen Helps You Regain Control
Ciitizen is a free online platform that offers breast cancer patients digital records management to collect and organize their medical records. Ciitizen approaches caregivers to collect medical records for you, and we can request things not typically seen by the patient, such as imaging reports and surgical notes.
On the Ciitizen platform, your records remain secure and protected, and you are in charge of what you want to do with them. With your consent, Ciitizen will share your complete history with doctors, researchers, and caregivers in order to help you save time.
Ciitizen creates a Personalized Disease Summary of your specific cancer and treatments. This summary is easily shared with the medical teams that you have chosen to help you in your treatment journey. It can also be shared with researchers to help them better understand your cancer.
Are Clinical Trials Right for You?
Clinical trials can provide patients with cutting-edge new treatment options. They can help ensure that new cancer treatments are safe and effective for widespread use. You can have a significant impact on research and cure by participating in them. Clinical trials have helped cancer research make huge strides in the past twenty years. The FDA has approved over 150 new cancer drugs in the US since 2006.
Ciitizen provides a free clinical trial matching service. They partner with IQVIA, the world’s largest clinical research organization, to check if you are eligible for any partner clinical trials. If you are a match, IQVIA will connect you to nearby trial sites, allowing you to focus your energy on your treatment and cure.
Who Owns Medical Records Ultimately Does Not Matter
Ownership of your medical records ultimately does not matter. Due to HIPAA, you have access to your records as the patient. Access is what you need to get the complete records from all your different healthcare providers.
Requesting those records and gathering them is a process that takes a great deal of patience and time. Some people gather them as they go through treatment, though most do not.
Ciitizen Is a Solution
Ciitizen puts breast cancer patients in control of their health data. Once authorized, they approach all your medical providers to get your records. These are placed on a secure server where you and anyone you authorize can view them.
Having the records in one place can help facilitate second opinions and treatment options. Ciitizen will share your cancer journey data with researchers so your individual journey can help them better understand cancer. Ciitizen also facilitates application to clinical trials. They will compare your medical data against their extensive database of over 500 clinical trials for breast cancer patients and help you find the best matches.
Ultimately, who owns medical records isn’t as important as having access to them. Ciitizen is one solution that helps you regain control of your medical treatments while allowing you to focus on what’s most important: surviving your cancer while helping move research forward for future patients.
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!