Is a Broken System Failing Breast Cancer Patients?

Calendar Icon March 20, 2021
Reading Time Icon Read Time: 3 min
By Ciitizen

Have you ever noticed that a simple request for your medical records can take weeks or more? Simply put, you are dealing with a broken medical system.

The test results are in: it’s breast cancer. An indescribable feeling wells up from inside: shock, disbelief, wonder at how this is possible. You are trying to digest the information from your doctor. Should you get a second opinion? Perhaps you are hearing this for the first time, or worse, this is a relapse. What does this mean for you? What about clinical trials? Where do you go from here?

You ask for your medical records so you can get a second opinion. An office assistant asks you to sign a form, and the journey begins. You call another specialist. They ask that you bring all your records, scans, lab tests, and biopsy results. They ask you to fill out another form, and they will request them for you. You wait and wait . . . and wait.

Now your stress levels are over the top, and you are frustrated that you have to work so hard just to get your own information. This is the last thing you need when dealing with the emotional rollercoaster of breast cancer. How can you possibly navigate this broken medical system?

The Health Insurance Portability and Accountability Act (HIPAA) is a law that was passed in 1996 and is designed primarily to protect patient privacy. It was the first step to modernize the flow of health information. HIPAA created more privacy regulations, which ushered in a new era of electronic medical records. Unfortunately, it has also meant that there is not a uniform way to maintain records in one centralized location and communicate effectively among various providers.

In fact, “[p]atients are entitled to timely access to their medical records. OCR created the Right of Access Initiative to enforce and support this critical right,” said Acting OCR Director Robinsue Frohboese.

Furthermore, the Merit-based Incentive Payment System (MIPS), established by the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), came into effect on January 1, 2017, and was designed to make changes to data collection and create monetary penalties and incentives for certain types of data collection. This was also supposed to increase timely patient access for records, but “we have identified a paucity of measures of access and patient experience. This deficiency may inadvertently exacerbate health inequalities for marginalized populations.”

To make matters worse, providers now spend more time entering your medical information into various electronic medical record systems or have ancillary staff enter the information under pressure as fast as possible, which can lead to a greater number of inaccuracies and missed details. Studies show that stress levels increase too: “Time pressure was associated with poor physician outcomes.”

While these broken medical system struggles, the best practice is to ask for your medical records to be provided before you leave the office.

In any case, this is a quality-of-life issue, particularly for patients diagnosed with breast cancer fighting for their survival. Medical records are a critical component to finding life-saving options as you seek second opinions and information about novel new treatments conducted through clinical trials that are available for your particular situation. But you often have to wait weeks for your records. You have enough on your plate dealing with breast cancer!

Ciitizen comes to the rescue! We offer breast cancer patients free digital records management to help you organize your care records, speed up the process for getting the second opinions you need, and find the right clinical trials that are just right for you.

Ciitizen believes that not only do clinical trials help the lives of breast cancer patients, but they can also lead to cures for you and countless others. This passion project was developed by someone personally affected by the death of their loved one from metastatic breast cancer.

If you have been diagnosed with breast cancer or know someone who has, please get in touch. Let Ciitizen help you navigate the stressful complications of finding clinical trials with secure, accessible medical records management. We want to help!

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!

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