In a former blog post, I let you know that the health records you can inspect (and have copies of) include medical images (ultrasound, MRI, PET and CT scanners, and x-ray), graphs (ECG, EEG), and videos. All of these images are created by medical equipment (the source) and the information within them is used by healthcare professionals for diagnosis, screening, and monitoring. These images require interpretation to have meaning in health care. They are a part of your designated record set and HIPAA law guarantees you access to them. Most people simply call these records medical images. In the medical field that are called raw or source clinical images. In my numerous attempts to collect these images from healthcare providers and hospitals, I am being purposely blocked from getting them.
The various images and videos in my designated record set are surprisingly missing from my Electronic Health Records (EHRs). Even more troubling, these medical images (in an image file format) were not shown to me when I sat down at my local hospital to inspect my designated record set per HIPAA guarantees! I was told they were located in a database that I could not assess at my appointment. My appointment was requested two weeks before I was given a date and the hospital had more than enough time to prepare.
In addition, when I specifically requested an electronic copy of a medical image, I received the image housed within a third party viewer for printing and viewing. The ability to save the image had been intentionally removed! Why is the hospital going out of its way to keep my electronic medical images from me? The hospital also refused to email it to me through my EHR patient portal’s sharing capability. These medical images exist in internal Electronic Medical Records (EMRs) and are accessible to select employees (and affiliated doctors) of the hospital that generated them. This is intentional health information blocking.
Why Do I Want My Medical Images?
Why do I want a copy of my electronic (digital) medical images for my records? Why am I not satisfied with having just a simple interpretation of the medical image? My reasons are many.
- I want to place them in my Personal Health Record (PHR) — My PHR is the only patient-centered record of my health and needs to have a complete picture of my health care. I, and only I, am in total control of my PHR and can share them on a moments notice for coordination of care when time is of the essence.
- Shared medical images minimize errors in interpretation. The greater the number of professional eyes that evaluate the data, the better. With only one interpretation of medical images, diagnosis errors can occur. In an earlier blog post, I described how my dad’s oncologist wanted to see the original biopsy slide (this was before digital medical images were common) to confirm the accuracy of the original diagnosis before he proceeded with treatment. I had to physically drive to locate this record. In another case, my friend’s husband was having trouble breathing, and testing revealed that he had lung cancer. Instead of scheduling him for chemotherapy treatment, my friend took him to the Mayo Clinic for confirmation. The team at the Mayo Clinic found NO lung cancer and discovered his breathing problems were related to prescription drug interactions. They adjusted his medications and amazingly no more breathing problems. The original diagnosis of the medical images was in error and the treatment recommended from it could have proved deadly.
- Eliminates over-testing and enhances coordination of care. Before shared electronic health records were required by law (2009), providing patients or other healthcare providers with copies of medical images, like mammogram films, was difficult. It required specialized scanners (with transparency capabilities) or knowledge of photographic techniques beyond that found in a typical healthcare provider business. Therefore, instead of handing over the original film, the healthcare provider simply gave an interpretation of the film by a qualified professional (a radiologist). If a person sought a second opinion or needed coordination of care through several healthcare professionals, the unavailable medical image meant the patient had to be retested and unnecessarily subjected to the additional risks associated with them. With electronic (digital) medical images available to the patient for “sharing”, over-testing would become a thing of the past.
- Reduces Health Costs. In the lung cancer misdiagnosis example cited above, the original medical images used to make the lung cancer diagnosis were not available to be “shared” with the Mayo Clinic. This new set of doctors had to repeat the same battery of very expensive tests for their records. This unnecessary health expenditure could have been eliminated if the original medical images had been readily available for sharing.
- Medical Images for the Public Good. The potential for combining medical images from many individuals for the public good is vast. I would gladly make available all of my medical images housed in various healthcare provider businesses across the United States where I have lived for improved treatment and diagnosis. For example, a computer analyzing mammograms from hundreds of thousands of women can be used to predict early warning signs for future cancers by connecting subtle changes in x-ray densities and features. While the following statement from my recent mammogram report– “the breasts are composed of heterogeneously dense parenchyma which may obscure a small mass.”–may be good enough legally, it does not fill me with reassurance that all is being done in the medical community today to catch early signs of cancer.
The Bottom Line
Medical images, together with diagnosis reports, make up one complete story. A diagnosis report, without the medical image from which it came, is an insufficient health record. The medical community is intentionally blocking patients from getting their medical images even though they have the right under HIPAA to get them. Why is our government not enforcing the HIPAA right to access? This is simply another case of keeping the patient from becoming fully engaged in their health care.
With wide-spread electronic health records, there should be no barriers to getting these medical images (in appropriate image formats) into the hands of patients. These images can be placed in EHR patient portals, emailed directly to patients, or even written onto electronic media (in appropriate image formats that can be copied and saved onto a patient’s Personal Health Record). This right to access is important for eliminating over-testing, maximizing coordination of care, minimizing errors in individual diagnoses, reducing health costs, and improving Interpretation and diagnosis for the public good.
What will it take to get the medical community to comply with HIPPA guarantees to access the medical images?