Navigating every step of cancer treatment is not easy and comes with challenges. One of these is collecting your medical records if you want to seek a second opinion or apply for a clinical trial.
Medical records are essential documents for the medical personnel and their patient. They are the communication link between a patient’s caregivers and provide critical information, such as history of illness, diagnostic work, and treatments . They are vital for cancer patients who want to seek a second opinion about their diagnosis and treatment or to determine eligibility for clinical trials. Ensuring that patients have easy and fast access to their records by creating more patient-driven breast cancer solutions is essential.
Despite electronic health records becoming more widespread and access to medical records and release of copies being ensured under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), many patients still face challenges in requesting, receiving, and managing their health records.
Why is it such a challenge to share medical records when we live in an era of modern technology and medical data access rights support patients?
There is no simple answer. Many factors play a role in these challenges, such as long waiting periods and procedural obstacles that can limit patient access, as well as not receiving health records in the form and format requested by the patient, with the additional frustration of having to pay a fee to get them in the first place .
In a study conducted by Yale researchers in 2018 and published in the journal JAMA Network Open, eighty-three top American hospitals were surveyed, and it was found that there was a lack of transparency in the medical records request process. Discrepancies were common between the policies that hospitals described on patient authorization forms and what employees later said to patients on the phone. The researchers also reported that 43% of hospitals did not reveal fee schedules on their authorization form or on the webpage from which the authorization form was obtained, so patients were often not aware of the potential costs associated with requesting medical records .
In another study published by McGraw et al. on the topic of people’s access to their medical records, the researchers found that 56% of the 3,000 healthcare providers they surveyed were violating rights regarding access to healthcare data. The main reason for this non-compliance is that healthcare providers do not send records in the form and format requested by the patient. Healthcare providers and their copy services continue to send paper records, encrypted emails, faxes, and CDs, even if the patient explicitly requests records to be uploaded to a secure portal or sent via standard email to a designee. “Form and format” are important to patients, who often can’t accept a fax or CD or for whom encrypting data could create a barrier. The encryption can “stick” to the data, and the passwords typically will expire in thirty days or less .
This is especially true when patients try to get their imaging records. Most medical institutions have less online availability to imaging studies and still share them with patients via CD, an outdated format that could be costly (as much as $75). Patients may also face challenges in obtaining imaging results because many hospitals do not continue to store them if conducted before a specific year. Also, there is often no centralized system for requesting all imaging studies. Patients may need to request them separately from the department that conducted the individual imaging studies .
All these challenges lead to delays in treatment when a patient would like a second opinion, and create difficulties in finding clinical trials that they are eligible for and are realistically accessible for them.
There is a systemic problem in complying with the right of access under HIPAA, highlighted by the lack of a uniform procedure for requesting medical records across US hospitals, which prompts the need for more patient-driven breast cancer solutions. As every institution creates its own process and implements its own regulations, variability in what and how records can be received occurs, leading to delays in treatment when a patient wants a second opinion. Patient-driven breast cancer solutions are urgently needed to address the challenges that patients are facing.
According to studies, access to medical records is desired by patients because seeing their data enables them to have a better understanding of their health information and prevent repeat or unnecessary tests and procedures. This leads to improved communication with their treating physicians and better adherence to treatments . Having one’s health records makes getting a second opinion easier and faster, it’s easier for people to take care of patients, and it reduces stress because all the information in one spot, so care coordination is simpler and trouble-free.
Fortunately, there is a way to have fast and easy access to medical records, avoiding the need to jump through the complicated hoops created by a flawed system. Ciitizen is a service that creates patient-driven breast cancer solutions by helping patients get more out of their health records, with the additional benefit of it being 100% free to patients. It aims to help empower cancer patients with better health record management. Ciitizen offers breast cancer patients free digital records management to help them collect and organize their care records and make sense of it all because having them is only half the battle. Doing so helps patients give family and caregivers greater transparency on their care, get faster second opinions, and find clinical trials for which they meet the criteria.
There shouldn’t be a gap between patients and their medical records in our modern era. Ciitizen is a service that tries to close this gap. By having easy access to their health data, patients have the chance to use that data for their own benefit, giving them more power to understand their care and become true partners in research. This could be a transformational shift, benefiting both patients and the medical system overall.
- Kabiru Danladi Garba, Yahya I.Harande; Significance and challenges of medical records: A systematic literature review; June 2018 Advances in Librarianship 9(1):26-31
- Cristin Gardner; HIT Happenings: Overcoming Obstacles to Obtaining Medical Records; For The Record Vol. 31 No. 10 P. 28; https://www.fortherecordmag.com/archives/ND19p28.shtml
- Carolyn T. Lye, BA; Howard P. Forman, MD, MBA; Ruiyi Gao, BS; Jodi G. Daniel, JD, MPH; Allen L. Hsiao, MD; Marilyn K. Mann, JD; Dave deBronkart, BS; Hugo O. Campos; Harlan M. Krumholz, MD, SM; Assessment of US Hospital Compliance With Regulations for Patients’ Requests for Medical Records; JAMA Network Open. 2018;1(6):e183014; doi:10.1001/jamanetworkopen.2018.3014
- Deven McGraw, Nasha Fitter, Lisa Belliveau Taylor; Healthcare Provider Compliance with the HIPAA Right of Individual Access: a Scorecard and Survey; medRxiv 19004291; doi: https://doi.org/10.1101/19004291
- Carolyn T. Lye, Harlan M. Krumholz, Jillian E. Eckroate, Jodi G. Daniel, Dave deBronkart, Marilyn K. Mann, Allen L. Hsiao, Howard P. Forman; Evaluation of the Patient Request Process for Radiology Imaging in U.S. Hospitals; Radiology Vol. 292, No. 2; https://doi.org/10.1148/radiol.2019190473
- The Office of the National Coordinator for Health Information Technology. Improving the health records request process for patients: insights from user experience https://www.healthit.gov/sites/default/files/onc_recordsrequest-research-report_2017-06-01.pdf
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!