Despite years of rhetoric, patients have never really been at the center of the health care universe ― at least not since the introduction of electronic health records (EHR). And this has become increasingly obvious in the fight for access and control of patient medical data.
A recent conversation between former Vice President Joe Biden and Epic CEO Judy Faulkner highlights the problem well. After the former VP contended that patients deserve access to their own information, Faulkner asked: “Why do you want your medical records? They’re a thousand pages, of which you understand 10.” To which Biden responded, “None of your business.” He went on to explain that “if I need to, I’ll find someone to explain them to me, and by the way, I will understand a lot more than you think I do.”
Biden’s desire to wholly obtain his medical records does not obligate Epic ― or any other EHR vendor ― to comply with his want or need. In fact, patients do not have legal ownership over their medical records in 49 states ― New Hampshire being the one exception. The Obama administration gave billions in incentives to doctors and hospitals to buy EHR systems, in hopes of getting companies like Epic to increase the ability to share and exchange patient records. Unfortunately, the result has made EHR vendors rich, but patients have seen little improvement in interoperability or access.
Here are five things to keep in mind about your medical records, and your rights to better health:
1. Patients Lack Access, But No One Else Seems To
Marketing firms, pharmaceutical companies and hackers are more likely to see medical records than patients are. And while selling medical data has become a billion-dollar industry, patients don’t see a dime of that profit. They don’t even need to consent in order for their information to be shared, packaged and sold to the highest bidder. Additionally, your EHRs don’t even have to be sold to be shared. In 2015 alone, there were over 112 million medical records breached by hackers. Imagine someone stealing your bank account information, but you never being able to see what’s in the bank to begin with.
In stark contrast to the ease at which outsiders can access medical records is just how annoying and outdated the process is for patients. Obtaining your own information typically involves long waiting periods (up to a month), fees to obtain each page of your medical record, and the use of archaic fax machines. Even with the rise of EHRs throughout the health system, access and sharing between providers and patients has yet to become streamlined.
2. You Deserve What Is Rightfully Yours
Although only one U.S. state has deemed a patient the owner of their own EHR, this can easily change at the state level. 20 states give ownership to the hospital/provider, while 29 states leave the issue completely undefined. In these states, patients can be denied access to medical records for a variety of reasons, and medical data can be released without specific patient consent. State lawmakers have the opportunity to ensure strong patient rights by simply clarifying patients have the right to access medical records.
Giving patients complete access to their medical records is not difficult. In fact, the technology is already available on any computer or smartphone to make this a reality. And even if a patient does not understand every word on the medical record, that’s OK. Providers and caregivers assist in the education and dissemination of medical information already, and continuing to do so may even improve not only the patients' understanding, but also the relationship with the providers. Moreover, if patients can read their own records, with no time added to physician workloads, perhaps there are mistakes that can be corrected or contextual information to be provided.
3. Improved Access Improves Health Outcomes
Increased access to medical records has proven positive results for patient’s health. For example, rapid access to office visit notes has led to 75% improvement in ability to recall care plans, better self-care, a clearer understanding of conditions, and patients who feel more in control of their health care. Evidence also shows a 60% improvement in patient’s ability to adhere to medications, a major problem with managing chronic pain conditions.
Additionally, several studies have proven that increased access and possession of records reassures patients, improves communication with their doctors, increases trust and patient compliance and improves the quality of the medical data. When patients become well-respected collaborators in their own care instead of players forced to stand on the sideline, quality of health care increases.
4. Communication Is Key. Therefore We Must Share.
Improvements in health are found not only by increasing patient access to medical records, but also by making it easier to exchange those medical records between systems and providers. EHR systems hold the ability to rapidly improve the ease of sharing records between various doctors and hospitals. The ability to exchange records reduces medical error, while improving patient safety.
Yet this is not incentivized under our current system. In fact, it serves each EHR vendor and each health system to keep their records to themselves. Not only does this prevent patients from moving to other care providers and systems, but it allows them the ability to influence – or even make money on – the data that they have. It’ is very clear that under current laws and practices, the patient’s needs are placed below those of the medical record owner.
5. Technology Will Lead; Culture And Legal Will Follow
The current state of health care is not patient-centric. Patients are not viewed as collaborators, and have little say in their own health care. This can and will change as we, as patients, become more and more empowered by technology. We can already see it happening. A secretive team within Apple is working on bringing patient’s clinical data to the iPhone. Amazon can now deliver devices, pharma and any medical need within a day. And despite the hiccups in telehealth becoming a mainstay in the health system, remote care will have greater and greater influence on care-seeking behaviors.
Imagine when users can easily review their health data, share what they want with third parties like hospitals and doctors, or allow an app to aggregate their information to help break a bad habit. Complete patient access to medical data is just a matter of time, but the pace could – and should – be quickened. Your health records belong to you. Now go demand them!
Source: Nicole Fisher, Your Health Records Don't Belong To You. It's Time You Demand Them!, Forbes, November 27, 2017.