By Anna Dussing, Mesothelioma.com
The sharing information and data has played a vital role in the advancement of medical treatment. Ranging from medical websites with basic research and patient portals to data cultivated through artificial intelligence technology, the information we have available on patients and diseases continues to move the needle for modern medicine. However, the information we have but don’t share is required to take the next steps forward. Not having access to all the data can result in unnecessary repetition of data, data errors or poor diagnosis. If physicians and medical data collectors share information wisely, there’s no telling what problems we could collectively solve.
Electronic Health Records
Electronic health record (EHR) systems are extremely popular, and for good reason. It makes fundamental communication with patients simple and serves as a repository for patient data. So popular in fact, that 2018 reported sales reached $31.5 billion. While many medical organizations have turned to electronic records, there have also been issues with usability, compatibility and consistency with the technology, which has led to medical errors.
In a perfect world, the idea behind EHR would be that electronic records could be easily shared between physicians, laboratories, devices, AI-powered analysis and more. It’s now commonly used to track medications, surgeries, illnesses, allergies, blood type, and general medical history. However, the lack of interoperability creates some challenges.
“There are many ways patients can work to protect themselves from EHR related errors,” said Raj Ratwani, PhD and Director for the National Center for Human Factors in Healthcare, Medstar Institute for Innovation. “Just as you might regularly review your credit card statement to check for errors, you should review your medical record. If you find something wrong, immediately alert your provider. You can find more tips at EHRSeeWhatWeMean.org.”
Death by a Thousand Clicks
“Death by a Thousand Clicks: Where Electronic Records Went Wrong,” an investigation by Fortune and Kaiser Health News (KHN), reports that while the industry for medical records is growing in the United States, the system is an “unholy mess.” One leading EHR system in the industry, currently in use by 850,000 American health professionals, racked up a multitude of Better Business Bureau complaints, flagged issues and filed lawsuits. Troubling problems include unreliable medication records, showing discontinued medications, and notes for Patient A in Patient B’s folder. These kinds of errors make it easy for physicians to unknowingly misdiagnose patients.
Despite the unreliability of EHR systems, healthcare organizations are not going back to paper systems. What we really need is updated, reliable, and universally compatible systems to better care for patients.
The Price of Data?
Even when the technology works properly, one question remains: Who has access to patient information? In theory, patients, healthcare providers, and public health researchers should all have free access. However, some EHR companies charge for information and access to patient records, as do many medical device companies. The Patient Safety Movement Foundation, along with the U.S. Food and Drug Administration and the Center for Devices and Radiological Health, all promote openly sharing data and encourage others in the industry to do so as well.
Open data sharing would allow us to better serve patients. The transparency would encourage patients to actively participate in the development and testing of new medical devices, in a process in which they could see the results of their contributions. Greater access to data would also speed the development of algorithms, power scientific studies and improvements, and maximize patient safety. The more data that is made available, the more accurate the systems created.
Having open access to data creates opportunities for AI to advance the medical field. While still in testing phases, several studies tested the ability of AI to detect cancer and other illnesses – with the help of data shared from medical records and cancer databases.
A study even showed that AI software detected melanoma with 10 percent more accuracy than dermatologists. After deep learning from more than 100,000 images from cancer databases – provided by open software records – the application was able to diagnose cancer with 95 percent accuracy. An additional study by the Dicle Medical Journal proved that AI could also detect rare cancers, such as mesothelioma. Using AI and immune system technology, the study was able to detect this cancer with 97.74 percent accuracy.
With more information harvested electronically, cancer patients with a poor prognosis, like mesothelioma, could have a better chance of survival.
When it comes to medical information, the power is always in the patient. Patients should also consider sharing their information for the greater good of medical advancements, as well as for their own wellbeing. Even though EHR systems would benefit from improvements, this technology holds a lot of hope going forward.
Countries like Estonia, in which data is shared differently, may provide a template for others when it comes to EHR. In Estonia, patients and healthcare systems have access to every patient’s medical records. Digitized health records travel with patients. Under the e-Estonia project, information is stored on an electronic ID card that contains individuals’ entire health records. This way, doctor’s notes, medication lists, scans, allergies, etc. are all in one place. This could be the future of medical records in the U.S. – shareable information that is always available and never gets lost.