Why in the world would the Patient Protection and Affordable Care Act, the Senate's pending healthcare reform bill, contain an amendment protecting citizens' constitutional right to own and use and store firearms? This does seem like an odd addition to any health bill, and some critics have dismissed it scornfully as the product of an overheated gun lobby and a bunch of right-wingers. As one posting on Slate put it: "A gun-nut win on health reform. A fringe group muzzles health insurers on gun ownership."
Taking a cooler perspective, the truth is that personal privacy concerns are legitimate ones as the government takes more centralized control over healthcare. And it was a group of liberal senators who promised gun lovers that they will not be forced to answer any questions about their lawful personal firearm habits as part of prevention and wellness programs. But wait: Isn't that a constitutional right already?
Whether the fear of having to spill the beans to doctors or nurses about lawfully owning guns is far-fetched or not, Senate Majority Leader Harry Reid (who comes from Nevada, a state that likes its guns) gave credence to these worrywarts when, at the last moment before the late December vote, he slipped into the Senate bill (Section 10101, Pages 2,037-2,040) a subsection entitled "Protection of Second Amendment Gun Rights." Under it, patients cannot be forced to disclose what some medical experts see as a dangerous health behavior. In addition, the Department of Health and Human Services can't create a database of those who possess guns and ammunition, and insurers can't jack up premiums for people who lawfully use firearms as they can, say, for tobacco use.
One has to ask: Are gun owners just paranoid, or is it that they see more clearly than the rest of us the importance of protecting citizens' constitutional rights under the major changes tied to healthcare reform? It's probably a bit of both. But a legitimate question, whose answer is not clear at all, is: What happens without such explicit protection? Will patients, in the face of a barrage of questions that healthcare workers are trained to ask, be obliged or somehow forced to disclose all other information about their health and habits for indelible recording in a national database? Hey, this is the government. This could happen, by a threat of perjury, for example, that comes with signing many government documents, from a driver's license to an income tax form. In contrast, when your record is your own and your doctor's, it's your business. This concern, too, may seem far-fetched, but requiring full disclosure would surely be at odds with a slew of constitutional rights, like the right to privacy and the right against self-incrimination.
For good or for bad, with a reformed healthcare system that is more intrusive than ever before and information technology that is ever more powerful, a vastly more accessible national medical record is going to happen. Indeed, the health information explosion is well underway, starting with state governments and coordinated by the feds. HHS has issued privacy and security principles to harmonize state efforts, and with the help of billions of dollars of federal stimulus money, states will establish secure health-information exchanges to integrate a single, longitudinal record for any given patient. The information comes from the paper or electronic record originating in doctors' offices, clinics, and medical centers and will become the backbone of a national medical record system.
[Find out why doctors take issue with health reform.]
I'm not questioning for a second that the goal is the right one: A single patient chart, stored on the Internet in a nationally accessible way that is secure and protects privacy, will be among the most powerful forces for more coordinated, efficient, and team-oriented healthcare. And so far, the developing plans from individual states look very good. A common thread that runs loud and clear through the state proposals I've looked at is that patients ultimately have a choice whether or not to participate in the exchange by being able to opt out. As described by the state of Utah, for example, which has been at work on this for years, patients have the right to decline outright to have their medical records entered into the statewide electronic network, or they can selectively pull back information that they believe is sensitive. Obviously, this means Utah citizens need to be informed and involved patients.
With the exception of gun owners, no such protections are spelled out in the health reform bills. With the new networks, a much wider pool of eyeballs will start peering into patient records for both care and research purposes. The records will be loaded with straightforward stuff, and some secrets, at a level of detail never before available. Promises of secure and private electronic records in a world of clever hackers do not entirely ease patient concerns. As long as electrons are flowing, their coded sensitive information just might be inappropriately or accidentally disclosed.
I wager every person has something in that medical history or family record that he or she wants held secret, even if someone else would not: a history of severe depression, a loved one who committed suicide, a full bevy of sexually transmitted diseases, or an abortion that a woman would like to forget. Incontinence, impotence, or a penile prosthesis—are these anybody's business? No. Nor are the manifold decoded bits of DNA that might forecast a risk for nasty conditions like Alzheimer's or stroke, a subnormal IQ, or an early death. Then there are illegal habits like marijuana and cocaine use. But touchy, too, are the plain-vanilla medical frailties that people have long had the unquestioned right to keep private. It's an old saw that when a patient tells you how many drinks he or she has in a week, at least double it.
The health information technology leaders now busy at work are fully aware of the risk of bungling security and privacy as they develop a national communication network that would link, for generations to come, all elements of the healthcare community. But it's really important that the technology mavens, policymakers, and politicians alike understand clearly how high the stakes are: Doctors well know that the most fragile link in a massive new system that ultimately depends on people being forthcoming is going to be the trust of the patient. Once lost, it is hard to regain.
Honoring a patient's right to hold back personal information he or she worries is too sensitive solidifies that trust. This acceptance may not be chiseled in law as the gun owners have achieved. But it is crucial that it prevail.