Control Your Data; Direct Your Care

Sep 30, 2020 | Care, Research

We remain in the middle of a COVID-19 global health pandemic caused by a novel coronavirus, SARS-CoV-2. Everything the public knows about this virus is largely driven by numbers – or data – telling us if the number of confirmed cases is rising or falling; in which countries, regions, and cities the disease has spread; and projecting how the situation will likely evolve. Beyond case numbers and trends, data on who is responding to specific interventions or treatments is being used to form a clinical response to the pandemic.

Without data, how do we know this is a global health pandemic? How could we prepare and assess what the best response might be? How do we know what treatments are most effective?

We don’t.

Whether it is a public health or personal health response, data are critical in shaping our response to this health crisis. COVID-19 is just an example of the importance of collecting and sharing data to effectively combat a significant threat to our health. We can assess the impact of public health orders such those requiring social distancing by following the data that have been flowing all over the world. And, in some locations, data are currently driving how communities assess their prospect and timeline at relaxing those guidelines.

But data are not just useful in shaping public responses to disease. Data are the backbone for our own personal health and decision making. A temperature above 98.6F indicates a fever; a blood pressure reading outside of 120/80 could be a sign of cardiovascular issues; and blood work results reveal what is going on inside our bodies that may not be outwardly visible.

In cancer care, data are just as important.

We can all agree that one size fits no one and treatment should be driven by data. In fact, the entire promise of precision medicine relies on the ability to leverage one’s data to design the best care plan for that one patient. And in the journey of a breast cancer patient, data are everywhere and of many types: blood work, diagnostic images and even biopsy results.

To illustrate the importance of data after a cancer diagnosis, let’s introduce Maya.

Maya has received a breast cancer diagnosis but wants to get a second opinion about her diagnosis and treatment options. The second oncologist she consults is affiliated with a different hospital system than the first. Before meeting with that second doctor, Maya is sent and completes a health history form. She notices that the form asks for the same information that she already provided to her first oncologist. Upon arriving at her appointment with the second oncologist, she finds out that none of her blood work, diagnostic images and biopsy results were sent by the first oncologist’s office to the second oncologist’s office. How will Maya get an accurate second opinion if the second oncologist doesn’t have access to all of her data?

A friend of Maya’s now insists she consults another oncologist, who is a renowned expert in the very type of breast cancer Maya was diagnosed with. That oncologist is out-of-state, and Maya expects that she will have to provide the same information for the third time. And based on her experience so far, she is doubtful this third clinician will have all of the information necessary to provide a thoughtful opinion.

Unfortunately, her experience is far from unique for breast cancer patients. If Maya could easily access her health data, she could share it with any oncologist she wanted to consult. She wouldn’t have to hope that her health data will be available to the doctors who need that data to best help her in deciding the next step in her treatment journey. Moreover, the fact that she needs to provide the same information over and over is an inefficient process when the information is already available.

Maya lives in the U.S. – which means she has a legal right to obtain copies of all of her health information. Specifically, regulations under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) mandate that patients have the right to see and get a copy of their health records. In fact, the HIPAA Right of Access clearly states that individuals are entitled to access their entire designated record set upon request, within 30 days of that request, for a reasonable fee and in the form and format that they request. In other words, patients can request electronic copies of their health records.

But that right is often difficult for patients to exercise. Frequently, people are told there will be hefty fees or that their health records can only be shared with other medical providers. This information is false. They are also told they must come into the office to request their records. Again, this information is false. Frequently, patients are given only the option of copies of paper records, when the HIPAA Right of Access clearly states that an individual can have access to their records in the form and format that they request.

To illustrate how well that patient right is respected, the Ciitizen Patient Record Scorecard evaluates and publicly reports on compliance of hospitals, physician practices, and laboratories across the country with the HIPAA Right of Access. Initially, the Scorecard demonstrated that more than half of health care providers were not complying with the Right of Access. But in the most recent version of the Scorecard, the data is showing that more than two-thirds of health care providers are complying and – even better – are providing seamless, easy access to records for cancer patients.

Whether people are currently in treatment for cancer or no longer have evidence of cancer, all cancer patients should have their health data readily available. That said, it is important to note that, HIPAA does not require institutions to keep records indefinitely, so it’s important to get these records regularly and while they are still available.

The power of health data is immense. And the importance of health data is vital. Health data not only allow individuals, and their care teams, to make informed decisions about treatment, they also allow people to share health information with a caregiver, easily seek second opinions, determine eligibility for clinical trials, and, for those that are interested, donate their data to drive research.

*This is the first part in a series of pieces by Susan G. Komen and Ciitizen about the importance of data and data sharing.