One of the biggest EHR-related issues of 2016 has been cybersecurity. The industry has been plagued with ransomware attacks, hacked EHR systems, threats to networked medical devices and sloppy internet use that leaves patient records vulnerable and exposed to the public.
All of which has made patients leery of the ability of EHR-using providers to keep their records confidential, and understandably so. While even the most careful of entities can be hit with a security breach, all too many of them have been careless, not taking even some of the most basic safeguards.
Some argue this can keep patients from sharing critical information with their physicians. Although research on that is mixed, patient privacy fears certainly don't improve dialogues between patients and caregivers or help care quality.
But now there is a deeper, darker reason patients might withhold information: the apparent imminent change of our society and its laws postelection.
President-elect Donald Trump campaigned on a promise he would crack down on immigrants and Muslims. The turn of the nation to the right will likely also affect the LGBTQ community.
Now it’s not just the fear that an EHR breach will reveal a patient’s medical information and cause financial harm or medical identity theft. Now a breach could affect a patent’s personal safety if information is used against them.
For instance, section 1557 of the Affordable Care Act prohibits providers from discriminating against patients on the basis of sex, including sexual identity. The rule implementing this provision was just finalized. Providers are being encouraged to add to their EHRs preferred names of transgendered patients if they differ from the gender on their drivers’ licenses and include other identifying information into the systems.
But if the Affordable Care Act is repealed and LGBTQ people lose these protections, they may face discrimination or harassment. So what happens if patients don't tell providers that they are LGBTQ? Physicians could miss conditions that affect their patients at a higher rate, such as depression and substance abuse. A physician might miss important cancer screening tests if transgender patients don't feel safe sharing personal information.
It may be worse for the immigrant and Muslin communities. Patients may hide their true identities, ethnicities and history for fear that if their personal health data is compromised it could lead to government investigation, deportation or profiling.
Will a patient disclose that he has returned from a Zika-infected area, most of which are in Latin America? Will a patient provide a false name?
All of this has profound effects on health IT and implications for the future.
For one, it makes individual patients’ records inaccurate and incomplete, which could affect the quality of the patient’s treatment and even cause harm.
And it creates problems for providers. In addition to the fact that they could be found liable for patient injuries stemming from the nondisclosure, they have reporting and data collection obligations imposed by the government and accrediting bodies, such as the Joint Commission. That reporting becomes pretty futile if the data they have is wrong or misleading.
Moreover, EHRs are increasingly relied upon for their secondary uses, such as clinical trials, big data analytics and population health. If the records being used for these purposes are wrong and incomplete, then any research conducted using them and results based on them are flawed, perhaps fatally. And that affects the future. New drugs may not be as effective as originally believed. Precision medicine would no longer be precise.
It also has such an impact going forward. What do we want this country to be? This is just one small piece of the fear and ensuing problems this nation is experiencing. On what path will 2017 take us?
I don’t have a crystal ball, but in a way I’m glad I don’t. I’m afraid to look.
Marla Durben Hirsch is an attorney who has specialized in health law for more than 30 years and has written about the many facets of healthcare for almost 20 years—including as a contributor to FierceHealthcare. She has won a number of awards for her coverage of healthcare news and has been quoted in several publications, including The New York Times.