How Breast Cancer Patients Can Keep Family in the Loop

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

A breast cancer diagnosis is a challenging and life-changing event, which is why you shouldn’t keep it to yourself. Family plays an integral role in providing care to many breast cancer patients. This support system is often present when patients make decisions about their care going forward.

Keeping family in the loop on cancer care starts with providing the most updated information about your diagnosis from your medical records. But because the medical record management system is inherently broken, many don’t realize that they can obtain this data digitally.

The Importance of Family Discussions

Family members quickly become part of a vital support system during challenging medical situations. Patients must be able to share information about their breast cancer diagnosis and the medical services currently available to them. Communication with family should also include ongoing health updates and discussions about how their needs might change while undergoing treatment.

Because cancer can be hereditary in many families, discussions should also include exchanging medical information. This step will go much more smoothly if everyone has copies of their medical records. However, many people may not realize that HIPPA rules prevent families from accessing a patient’s records without specific consent. Patients can give expressed consent to particular family members, but they should also have copies of their current medical records to inform the rest of the family.

Obtaining your medical records and keeping family in the loop on cancer care makes it easier to:

  • Receive a second opinion quicker
  • Receive care from family members
  • Reduce stress because everything is in one spot
  • Coordinate care

The Challenges of Obtaining Medical Records

If you or your family members don’t have copies of your medical records, now is the time to get them. However, there are many obstacles that patients can face when trying to obtain these documents. It often involves contacting every healthcare provider that you have visited in the past.

Furthermore, you can’t always trust that policies are consistent from your call to when you arrive at the medical facility. A study shows discrepancies regarding how patients can access their medical records and what information they’ll receive. In another study, patients faced roadblocks regarding accessing their records and saw different fees for various requests.

A lack of a standardized record-keeping method creates a systemic issue for administration and patients trying to retrieve their records. Every institution has a different way of getting medical records to patients. For example, some will:

  • Fax records to patients. But the average consumer typically doesn’t own a fax machine. This method isn’t feasible when breast cancer patients need to share information with their families.
  • Give patients a CD-ROM. If your computer doesn’t have a media disk player, then you won’t be able to access the information on the CD.
  • Print records for patients. While this method might seem like the best option, a significant amount of the information printed includes duplicate entries that you have to go through, cross-reference, and compile.

Another issue patients face is that when they try retrieving their records, medical facilities sometimes charge them. Ideally, patients should be able to obtain copies of their records immediately following treatment. However, achieving that goal depends on how the medical facility stores and maintains its records. It may even want to provide patients with this information, but the format makes that a challenge.

The Need for Streamlining Medical Data Digitally

Patients significantly benefit when they request their medical records immediately following treatment. Between 2008 and 2015, 96% of hospitals and 86% of private physician offices adopted electronic health record systems. If you’re dealing with a hospital, you might find that the waiting time for retrieving these records is lengthy. Even if patients need this information right away, it can sometimes take weeks.

In a press release issued by the US Department of Health and Human Services, two new rules give patients safe and secure access to their medical data. These rules give patients access to data that helps keep families in the loop on cancer care and make informed medical decisions. They also give patients access to their medical records from their smartphones, at no cost.

Dealing with more than one institution is frustrating, especially when you need copies of your records to see if you can participate in a clinical trial. Since there’s no standardized way of accessing medical records, it’s almost impossible to collect and combine this information.

Turn to Ciitizen for Assistance Keeping Family in the Loop on Cancer Care

Ciitizen helps you put your records in one place. This way, you can stop chasing them from institution to institution, and you can keep family in the loop on cancer care. Taking this step is also beneficial when you want to connect with clinical trials matching your criteria.

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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