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Aughie and Nia have a discussion of the pros and cons of the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
This podcast uses government documents to illuminate the workings of the American government, and offer context around the effects of government agencies in your everyday life.
Announcer: Welcome to Civil Discourse. This podcast will use government documents to illuminate the workings of the American Government and offer contexts around the effects of government agencies in your everyday life. Now your hosts, Nia Rodgers, Public Affairs Librarian and Dr. John Aughenbaugh, Political Science Professor.
Nia Rodgers: Hey, Aughie.
John Aughenbaugh: Morning, Nia. How are you?
Nia Rodgers: I'm good. How are you?
John Aughenbaugh: I'm fine. I've been properly caffeinated even if I cannot speak all that well. I'm really looking forward to our conversation with this episode. According to many medical practitioners, patient rights advocates and scholars, one of the most important laws probably passed in the last what, 25, 30 years. The law is?
Nia Rodgers: I know it by its acronym, HIPAA.
John Aughenbaugh: Which stands for?
Nia Rodgers: HIPAA is what people will say to you in sentences like, "That would be a HIPAA violation." By the way, that is the sentence most people will say when discussing this. For listeners, who are college students,
John Aughenbaugh: HIPAA is like the equivalent of FERPA at college. Nia, do you know what FERPA stands for?
Nia Rodgers: I do not.
John Aughenbaugh: You don't know what FERPA stands for and you work at a university.
Nia Rodgers: I'm sorry. I'm that guy. Family Educational Rights and Privacy Act. That's why you can't give parents somebody's grades, you can't talk.
John Aughenbaugh: You can't, for instance, go into a class as a faculty member and say, "I have listed all of your midterm exam grades on my office door."
Nia Rodgers: Like they used to where you just go up and look with all the number and everybody would know what everybody got and you felt like an idiot. Now, you have the privacy of not having that. Also, I think other FERPA things have to do with your financial aid. Nobody can disclose your financial aid status. There's a lot of stuff your professors cannot find out about you with good reason. If you register with the office of disability, but you don't want them to tell your professor, they don't tell your professors; and if you don't tell your professors, your professors never know. Even though they could be helpful if they did know, but it's because they want to protect your right to not disclose that information. That's what HIPAA is about too, isn't it?
John Aughenbaugh: Yeah, the Health Insurance Portability and Accountability Act. This was a law that was passed in 1996. It basically had four objectives, Nia. One of which we've already begun to discuss, but let's mention all four and then we'll get to some of the issues that have arisen with HIPAA. It had, as I just mentioned, four objectives. The first one was to make sure that your health insurance was portable. In other words, it would go with you even if you changed a job. Because what happened a lot before the Affordable Care Act was if that if you had a pre-existing medical condition and for instance, you lost your job or you changed jobs, your new employer, their health insurance might go ahead and reject coverage of you because of your pre-existing medical condition. This law prohibited that from occurring.
Nia Rodgers: The reason you mentioned the Affordable Care Act is because that's a separate insurance that you can get that is not employer based.
John Aughenbaugh: That's right.
Nia Rodgers: Used to be that all of your health insurance came from your employer. There was no government choice.
John Aughenbaugh: Yes.
Nia Rodgers: The Affordable Care Act created a government choice so that you could get out of the business entirely of having it related to your job. Which if you're a gig employee or if you're a part-time employee, if you're self-employed, then the Affordable Care Act gave you a way to get insurance.
John Aughenbaugh: Even if you had a pre-existing medical condition, which health insurance coverage that would be contracted by your employer could go ahead and say, "Well, if you want us to cover pre-existing medical conditions, it's going to cost the employer much more money." Many employers were like, "But then that means we may not be able to offer health insurance for all of our employees or we would offer less coverage to all."
Nia Rodgers: Or we pay less.
John Aughenbaugh: Or we would pay less.
Nia Rodgers: So that we can cover the insurance. I think people don't realize when you get offered a job, let's say that you get offered a job for $1,000, I know you're not going to work for $1,000 a year, but if you got job for a $1,000 a year, your health insurance coverage is probably another $500 that the employer pays in order to cover you. Those are part of your fringe benefit package in a lot of jobs and so because they have to negotiate with insurance companies to cover their employees, the insurance companies have leverage to say things like, "But we won't cover your employees with diabetes because they cost more." They cost the insurance company more or whatever.
John Aughenbaugh: Or any chronic condition or as was the case a lot before this law, female employees of childbearing years.
Nia Rodgers: I assume injuries at your previous job.
John Aughenbaugh: Yes. We won't cover you for things like that. So 1996 sees this revolution in. The federal government In whether the insurance companies can deny you. That was one of the objectives. That's the portability part of the acronym. A second objective was to reduce healthcare fraud and abuse.
Nia Rodgers: That's the accountability part, I assume.
John Aughenbaugh: That's the accountability part. In particular, you had a whole bunch of Republican members of Congress who were like, hospitals, medical providers are really unchecked in regards to submitting Medicaid and Medicare reimbursements.
Nia Rodgers: How is it that this aspirin costs $65?
John Aughenbaugh: Why is it a band-aid costs $12 when you could go ahead and get a bulk of 250 from your CVS for $7.99? This ain't right. That's the accountability part. Then you had enforced standards for health information. Basically, this was a desire to force hospitals to report data in a uniform way.
Nia Rodgers: Using uniform terms.
John Aughenbaugh: Uniform terms. It's like the reporting of crime data to the FBI. Because police departments frequently will cover up how severe their crime problem is by how they report the crime. Likewise, hospitals.
Nia Rodgers: They downplay an attempted murder as an assault to try to make themselves not look, well, one because they don't want their place to look as crime ridden because then the city fathers are like, "Nobody will move here. Nobody will build here. Nobody will open a business. Stop doing that." But also because it makes their closing rate look better. But there's lots of reasons why you would be tempted to do something like that. I'm assuming in terms of similarly with hospitals, people get giant bills and unless you say, I would like an itemized report of every single thing then they just say, your bill is $12,000 and you pay it and that's the end of that. As opposed to wait, what is this $65 aspirin doing on here? How is that a reasonable cost? Sorry. That's reducing the health care and then the standardizing, don't call that aspirin blood thinning pill of whatever.
John Aughenbaugh: It's an aspirin, let's all call it an aspirin so that we have a standard. A 250-dollar consultant fee. Well, who got consulted?
Nia Rodgers: Did you ask a nurse down at the nurse's station? Because that's not. Was it the cancer specialist or was it the janitor? Basically, also things like if a patient dies from a gunshot wound but they also have a high level of drugs in their system, formalizing how you would report their death helps National Statistics understand whether more people are getting shot or more people are taking drugs and dying from it. It could be that both of those things are true or you can't tell which one of those things are true. Sometimes I think hospitals used to just pick a thing and put it on their death certificate. This person died of a gunshot wound and they didn't bring up the fact that they also had methadone in their system or they also had something else going on or whatever.
John Aughenbaugh: They might not have even been for nefarious reasons.
Nia Rodgers: Just pick one because that's what we put in there. That's what we key in the system and we're done.
John Aughenbaugh: Yeah. When we were trying to preserve their life, the thing we were focused on was the gunshot wound.
Nia Rodgers: Exactly.
John Aughenbaugh: This is what they died from. Now, if you want a more complete picture of what lead a person to die of a gunshot wound, you might want to go in and focus on did they have drugs in their system, were they suicidal, etc.
Nia Rodgers: Mental state, physical state, all those things.
John Aughenbaugh: But the last objective is the one I believe that particularly interests you.
Nia Rodgers: Yes. It makes me feisty, the last.
John Aughenbaugh: HIPAA was to guarantee the security and privacy of health information. The concern here was that medical patients were not always entirely sure who got to see their medical records. Were their medical records being shared with law enforcement, other government agencies? Were their medical records being shared with their employers, their spouses?
Nia Rodgers: Interns in a teaching hospital.
John Aughenbaugh: Yeah, it's right. Again, this is all rooted in the concept of privacy. As we've discussed in previous episodes, privacy is a legal, social construct really begins in this country about what, 55-60 years ago? Think about it. In the roughly the first 10 minutes of this podcast episode, we've talked about two federal laws that are designed to go ahead and protect the privacy of certain elements of people's lives. College students in their educational privacy, but with HIPAA, it's individual's medical records are supposed to be private.
Nia Rodgers: What makes me feisty about that, I'm a leap into feistiness and you're just going to have to pull me back.
John Aughenbaugh: Feel free.
Nia Rodgers: What makes me feisty, I should say about it is is I'm torn of two minds. I don't think that the doctor should call and leave a message on an answering machine in a house of, "so gonorrhea test came back and it's fine." You just put somebody in for nothing else, a verbal beating and potentially a physical beating. There are reasons why you may want privacy.
John Aughenbaugh: Yeah. Imagine your significant other being the one that goes ahead and plays that message and finds out that you have gonorrhea, really.
Nia Rodgers: Or you don't have gonorrhea but you've got tested for it. Why would you need to get tested for it? Now you've got a whole different set of issues, and if your spouse is violent, that can end in serious injury or death.
John Aughenbaugh: Yes.
Nia Rodgers: There's that side of it that I totally understand. But the flip to that is, if you are having a seriously distressed episode where you are potentially a danger to yourself, the medical profession's hands are tied about getting you intervention.
John Aughenbaugh: Yes.
Nia Rodgers: Because they can't tell the police. They can't tell your family, they can't tell anybody that you are in a seriously dangerous and fragile state. Whereas if you family knew, most families, not all families, but most families would try to intervene in some way. They would not want you to feel alone in that time.
John Aughenbaugh: Then potentially harm yourself and harm others.
Nia Rodgers: Exactly.
John Aughenbaugh: I'm just going to use this as an example because it's pretty widely reported and came out in court cases established as fact. But that was one of the issues with the Virginia Tech mass shooting earlier this millennium. The shooter had mental health issues, had gone to school counselors. But because of both HIPAA and FERPA, their hands were tied.
Nia Rodgers: Right.
John Aughenbaugh: Their hands were tied. Even if they wanted to let others know whether being his family or local law enforcement, their hands were tied. That's one of the results of HIPAA.
Nia Rodgers: I get that we don't want to embroil people in a criminal system where they're not a criminal. I understand that. I understand the argument of you don't want to tell the police that this person may be homicidal because they may not be and now you've told them with a brush that they may never get out from under.
John Aughenbaugh: Yeah. Because once you get into the system, they may not be able to get out of the system.
Nia Rodgers: Right.
John Aughenbaugh: Whether it's a law enforcement or mental health, I understand that. You make a really good point, but I'm with you on this, Nia. Those who could be helped might not be getting the help because medical professionals now are going to think twice, three times, or may just come to the conclusion, it's far safer for me not to be charged with a violation of HIPAA than it is to stick my neck out and get help for this person.
Nia Rodgers: And potentially get sued.
John Aughenbaugh: Yes.
Nia Rodgers: Right.
John Aughenbaugh: We need a series of professionals who have yet another reason to be risk-adverse instead of creating the conditions to where they might want to help those who need help and are not capable of getting it. Because let's face it, there are various people who have mental health conditions, drug addiction issues, or they're encountering medical conditions and they don't feel comfortable, for instance, talking to a parent or a sibling or significant other. The condition gets worse, not better because their medical health professional feels as though their hands are tied.
Nia Rodgers: It has a cooling effect on research.
John Aughenbaugh: A huge one.
Nia Rodgers: Because there is so much you can't ask. Just briefly, and I'm not trying to get completely off topic here, but the thing that people need to know that happens at most research institutions, most research institutions have an institutional review board, an IRB.
John Aughenbaugh: Yes.
Nia Rodgers: You have to go to them and say, this is the thing I want to study, and it will not hurt people, or it will not hurt animals, and this is how, and I have a whole plan for doing that so that I don't injure people because we don't want experiments all are Mengele, where you got to freely hurt people and have that be okay. That's not okay. It's not okay for us to hurt each other when we're doing research. It's not okay for us to hurt animals when we're doing research. The IRBs at most institutions have a pretty strict process. One of the ways that you can get around that is to say, I would like to look at chart data from 10,000 patients who were treated between X year and Y year and I want to see if they were treated for a heart problem, was there within 5-10 years a noticeable difference in some other thing because you're trying to connect those two things. Now, asking for that data is really complicated. You can't just say to the hospital, hey, can I have 10,000 charts between these years where before they might have said sure and just anonymize the name. Taken the name off the chart. Now there's so much other information. There are so many rules about whether you can use people's data for a study that you'd have to contact 10,000 people, get their permission, have them sign a contract that says they understand what you're going to look at. There's a lot involved in it.
John Aughenbaugh: For the lawyers who are listening, please forgive me if it sounds like I'm going to beat up on you. But now to get those consent forms filled out, the lawyers have gotten involved Nia, and those consent forms are multiple pages.
Nia Rodgers: Right.
John Aughenbaugh: Again, that's the job of lawyers because lawyers are supposed to protect their clients and if their client is a research hospital, a research university, they're trying to protect the client. But the consent forms are now multiple pages. In the effect on the percentage of patients who are willing to have even non identifiable medical information shared for research purposes. Went down almost immediately after HIPAA was passed. Because most of us when we are given a multiple page consent form, our response is typically one of two things, according to studies and I actually look this up. One we just rejected out of hand. I'm not going to read through all of this.
Nia Rodgers: I'm not doing this.
John Aughenbaugh: I'm not doing this out, or we read it then we pause to think about what am I actually signing or agreeing to. Again, that means you have not agreed to participate in a study. Because you can't wait forever if you're going to do a study on the, for instance, the effect of a particular drug on heart attack patients recovering. Because time is of the essence.
Nia Rodgers: Now they have people who will come in and explain the contract to you like there is a job. One of the jobs is that you go in and they explain to you exactly what you're agreeing to. Now you're talking about more person hours.
John Aughenbaugh: Yes.
Nia Rodgers: More time spent convincing patients to do that. The cost of a study goes up because you have to have, and if you're doing 10,000, one person can't do that, you've got to have a battery of people who do that. Now you have to hire a bunch of those people to explain to the patient exactly what they're signing. All of that has to then be notarized that this is what you explained. Then both people have to sign that document. It really can slow down. I get that we're trying to protect people's privacy. But by the same token, do research is how we figure out what works and what doesn't medically wise. The alternates are not a good. We'll just give it to you and see what happens. No.
John Aughenbaugh: We're just going to fly blind here.
Nia Rodgers: Wait, let's not do that.
John Aughenbaugh: One of the more fascinating things Nia when I was doing research for this episode was the conclusion that at least two new industries developed because of HIPAA. You already mentioned the first.
Nia Rodgers: The explaining people?
John Aughenbaugh: Yeah, the hiring of staff to explain your privacy rights. The second was the industry to ensure accountability. Remember because you got to go ahead now and make sure that what you report to the Federal government and how you report it satisfies standards and criteria. A whole new industry. It's like a sub concentration of public health programs at colleges and universities are for individuals who've been trained to do HIPAA accountability. I was just like, this is a great example of the law of unintended consequences.
Nia Rodgers: You were trying to do a good thing and it has these effects.
John Aughenbaugh: Yes.
Nia Rodgers: By the way, listeners please don't hear Aughenbaugh and I saying they should get rid of HIPPA, that's not what I'm saying.
John Aughenbaugh: No.
Nia Rodgers: That is not. But we are saying we should recognize that it is made. For instance, at some medical institutions, they can't afford to do these kinds of studies anymore, because they're just too expensive. We're talking thousands and thousands of dollars added to the grant that you get to do the research. It cuts either the number of participants or it cuts the length of time you can study, or it adds to the length of time that it takes to do the thing. So you're not getting as timely information in studies as you could be getting?
John Aughenbaugh: Yeah. I mean, and in part, I mean, I've gravitate towards this, so listeners, this is a mea culpa on my part. Part of what I teach, part of what I study is bureaucracy. HIPAA has created.
Nia Rodgers: Some bureaucracy.
John Aughenbaugh: His own bureaucracy.
Nia Rodgers: It's own boogie man.
John Aughenbaugh: Yes. HIPAA.
Nia Rodgers: A HIPAA violation scares. It's not out of most medical. The lawsuits can be outrageous.
John Aughenbaugh: Yeah, they can be outrageous and sometimes these lawsuits end up concluding that they didn't do it on purpose.
Nia Rodgers: Right.
John Aughenbaugh: When they violated HIPAA. They just didn't know.
Nia Rodgers: Or they didn't do it on purpose, but they're still going to be held accountable and it's still going to cost them.
John Aughenbaugh: It's going cost them.
Nia Rodgers: That's the other part of that.
John Aughenbaugh: Making hospitals in the process is more bureaucratic. Does that seem like a good idea?
Nia Rodgers: It doesn't seem like a good idea. Although in fairness. Do you remember when we were kids? I don't know if you were ever in the hospital. I was in the hospital when I was a kid.
John Aughenbaugh: Yeah.
Nia Rodgers: The chart hung on the wall outside your room. Any schmuck walking by.
John Aughenbaugh: Yes.
Nia Rodgers: Pull off your chart and look through it and there was a thing that anybody did anything about?
John Aughenbaugh: Nia I got a funny anecdote. I was like eight or nine years old. I had a paper route and for our younger listeners. I apologize if you don't know what a paper route was, or is.
Nia Rodgers: You rode a bicycle through town and threw newspapers on the people's lawns?
John Aughenbaugh: Yes.
Nia Rodgers: Like somewhere around five o'clock in the morning so that they could have their paper when they got up to have their morning breakfast before they went to work?
John Aughenbaugh: Well, this was actually an afternoon paper route.
Nia Rodgers: Nice. After school.
John Aughenbaugh: I finished school, I would deliver, my route was about a 120 houses. You are correct. I rode my bike most days. This is when newspapers were still in hard copy format, so not newspapers you would read on a computer. I was delivering a paper. I go to this woman's house. I had to walk down a little alleyway. As I come around the corner of her house, her big German Shepherd is in the yard. I was born and raised around dogs. I was taught to never run from a dog. Because for some dog breeds.
Nia Rodgers: That's just too tempting.
John Aughenbaugh: Yes. They view it as prey to be caught.
Nia Rodgers: Yes. Don't run from a greyhound.
John Aughenbaugh: Okay.
Nia Rodgers: Especially if you're small and fuzzy.
John Aughenbaugh: I ran and the German Shepherd caught me and he took a chunk out of my leg. The ambulance was called. I went to the hospital. I'm in the ER. You were talking about the chart hanging on the wall outside the curtain where they concluded that I needed 12 stitches. Because the dog had his shots, I wouldn't have to get the rabies shot treatment. But nevertheless, the chart was hanging right outside the wall.
Nia Rodgers: Every intern, every nurse.
John Aughenbaugh: No, it gets even worse.
Nia Rodgers: Patient walking by can just pull it up and look at it.
John Aughenbaugh: The mother and the child right beside. As they were leaving, I hear them pause, look at my chart, open up the curtain and say, I'm sorry, you got bit by a dog. But you know, you should not run from a dog. They were like, "It's on your chart." I was just like, "That ain't right." I was already feeling bad enough. I was feeling.
Nia Rodgers: Now, some stranger has made you feel even worse about.
John Aughenbaugh: Listeners, please, understand, Nia and I do understand the privacy value, but it can't.
Nia Rodgers: But now nobody can go back and look at the charts of young boys with paper routes in Pennsylvania who got bitten by dogs and see if they turned out to be political science professors. Yes, there's reasonable.
John Aughenbaugh: There's a lot of good things from the HIPAA in regards to privacy, right?
Nia Rodgers: Right. When we've-
John Aughenbaugh: We've touched upon the fact that your medical information is yours. It also.
Nia Rodgers: Which is actually good in-
John Aughenbaugh: It prevents discrimination, right?
Nia Rodgers: Right.
John Aughenbaugh: Okay. Because again, because the information is private, and not all doctors in hospitals used to do this. So if you were involved with the medical profession, understand that we're not painting with a broad stroke here. But their work incidence practices in the past in the United States where because healthcare information was public, provision of health care services was provided on a discriminatory basis. This in particular was how medical insurance providers were able to discriminate based on preexisting conditions because your medical information was not necessarily private. It was in some cases, owned by your employer because they provided the fringe benefit of medical insurance.
Nia Rodgers: Right. You could be denied certain coverages.
John Aughenbaugh: Yes.
Nia Rodgers: Because they felt like it. Because they didn't want to cover them.
John Aughenbaugh: Yes.
Nia Rodgers: That's a really good thing. Excuse me. It also allows you to see your chart. I know, I know.
John Aughenbaugh: Yes.
Nia Rodgers: It sounds like the stone ages to people who haven't lived under HIPAA and most of the students we work with now have lived under HIPAA so their formative years they don't have this understanding. But before that, it used to be that you had to beg, borrow, and steal to be able to see your chart. You would say to the doctor, "Can I see my chart?" They'd be like, no, "Why not? Why can't I see my chart?" Oh, because it'll just confuse you, you won't understand what's in here blah-blah-blah. "Look, a pterodactyl," when they would look out the window and try to get you distracted and you would never see your chart. You didn't know whether there were mistakes. You didn't know whether there were problems that you didn't know about that the doctor didn't tell you about. Sometimes.
John Aughenbaugh: They couldn't even correct misdiagnosis, right?
Nia Rodgers: Yeah. Sometimes doctors just didn't tell you stuff because they didn't think it was the thing you needed to worry about.
John Aughenbaugh: Yes.
Nia Rodgers: Maybe that's true. But you should have the right to make that decision. You should have the right to decide whether you want to know what your hemoglobin numbers are or not, that should not be up to the medical professional to decide whether you need to know or whether they think you can understand it. That's not up to them. I like that it gave patients more autonomy in their own health.
John Aughenbaugh: In even access. Again, Nia I don't know about you, but since I've moved around quite a bit, getting access to my medical records has been difficult. One of the things that I go in and point out to, and I've done this to former medical providers, is according to HIPAA, I should have access. Where's my access? Now, of course, when I read through those documents when they've been delivered to me, some of it is just downright hilarious. Again, another funny anecdote or at least I think it's funny. There was an intake nurse who apparently was new on the job and there was a box on the form that said patient description. She described me as follows, "Patient looks like a small refrigerator with abnormally long limbs." That was her patient description.
Nia Rodgers: I'm sorry to laugh. That's so cruel, but it's also funny. What a terrible and useless description.
John Aughenbaugh: Yes. I don't know how that helps.
Nia Rodgers: None of that has anything to do with your medical treatment.
John Aughenbaugh: Why I was there which I think I was there for like an ear infection or some [inaudible]. It was something that was like in college. I don't know how that helps the doctor.
Nia Rodgers: Really? Now you're just being a bitch. I mean, let's just be honest.
John Aughenbaugh: But that was hilarious. I laughed at it. I was just like.
Nia Rodgers: Some people wouldn't. Some people would find that very distressing.
John Aughenbaugh: Yes.
Nia Rodgers: You are one of those people who's pretty self-confident. You're pretty able to say, "Yeah, I'm kind of a big dog."
John Aughenbaugh: Yes.
Nia Rodgers: I'm one of those people too. It's one of the reasons we get along but there are people for whom that could be a seriously harsh thing to hear. Don't medical records have to be centralized now?
John Aughenbaugh: Yes. Okay.
Nia Rodgers: So you don't get lost. Again, sorry, anecdote, people who were there were telling a lot of those today. But when I first went back to college, I was an adult person. Well, I was older. I don't know if I was an adult, but let's just.
John Aughenbaugh: I do believe listeners in the language of higher education, Nia, was considered a non-traditional student.
Nia Rodgers: I was a non-traditional student. I'd come back after 20 years of working in the workforce. So I was in my 40s.
John Aughenbaugh: Whether or not she had matured.
Nia Rodgers: To adult where there was a whole separate issue.
John Aughenbaugh: Yeah.
Nia Rodgers: But I came to the university and I said, okay, I'm going to be a student. I filled out all the paperwork and they're like, "Great, we need you to have your meningitis shot." I was like, "Yeah, I don't live on campus. They're like, "Yeah, we don't care." I had a meningitis shot and then they said, "We need your MMR." Now, I moved around a lot as a kid. I called my mom and I said, "Hey, mom, where's my MMR?" My mom actually laughed on the phone at me and said, "You got to be kidding me. I have no idea where your MMR is," Measles, mumps, and rubella. Guess what I got? I got two MMR shots in my 40s because I couldn't prove that I had had them as a child. In fairness to the university, the university has to protect the body as a whole.
John Aughenbaugh: A collective, yes.
Nia Rodgers: All of the university students so they can't just have me running around in class not having those shots and potentially giving people other illnesses. I get it. I don't object that. But it would've been really nice if HIPAA had happened in the late 1960s so that all of my records could have been in one spot. That's true of a lot of people who move around. We have a lot of people in the United States who move from place to place, who move from school district to school district, and those records can get lost. So it's really nice that HIPAA has created a requirement that your records be findable and that they'd be connected to each other so that you have an ongoing history of your health as it were.
John Aughenbaugh: And again, that's one of the values of [inaudible] coming up with clearer, more readily agreed-upon terminology for procedures that have been done, care that has been received, and HIPAA also actually forced the medical profession to move into the late 20th century, early 21st century in regards to information technology. Nia Rodgers Right. Paper records.
John Aughenbaugh: HIPAA requires a data backup plan to be in place and tested on a regular basis. Medical providers, all data has to be strong password protected. Actually, the medical industry was one of the first industries in the United States that adopted strong passwords. Again, for our younger listeners, Nia and I are old enough to remember when-
Nia Rodgers: Password was your password.
John Aughenbaugh: Yeah, right.
Nia Rodgers: Or 123456 or some other. Your birth date.
John Aughenbaugh: Your birthday.
Nia Rodgers: Something that's super knowable that people could just guess. We are of that generation. Because in fairness to us, we didn't put things on computers when they first came out that we cared about other people not being able to find. Computers were not the potentially secretive thing that they are now.
John Aughenbaugh: No.
Nia Rodgers: You know what you used the computer for? Homework.
John Aughenbaugh: Yes.
Nia Rodgers: There wasn't the Internet. You use to tie papers in WordPerfect.
John Aughenbaugh: Computer games.
Nia Rodgers: Remember WordPerfect?
John Aughenbaugh: Yes. Right. WordPerfect, computer games. But this idea.
Nia Rodgers: They were basically carving into stone like they did in the stone age. It's a whole different animal now and now that there's so much information, I'm glad that there is a lot better protection and backup.
John Aughenbaugh: Again, this all is incentivized, encouraged if you will, by HIPAA; protections against malicious malware. I know that's redundant, but malicious software.
Nia Rodgers: I would assume that it helps you with medical errors.
John Aughenbaugh: Yes.
Nia Rodgers: Like if you're doing something electronically, it's easier to say, "Woh, woh, woh, if we give these two medications together, they'll counteract each other and either bad things will happen or nothing will happen."
John Aughenbaugh: Well, and Nia, not surprisingly because again, we're all enough to remember this. Medical professionals did not like that because there were like, "I'm the expert and I don't want a computer system telling me what I should do as the expert."
Nia Rodgers: But listeners we can tell you a secret if you'd like to know, which is that nurses have always saved patients from doctors mistakes.
John Aughenbaugh: Yes.
Nia Rodgers: Because nurses are the ones who actually give you the drugs and they are the ones who have taken enough chemistry in school that sometimes, in fact, most of the time they say, "Wait a minute, if I give these two things at the same time, this patient is going to flatline." Then they'll gently say to the doctor, "I can't really read your writing on this. Can you clarify for me that we are giving blah-blah-blah instead of blah-blah-blah and give them a chance to save face." But my mom was a nurse and she did that countless times because that's what they did. Now you have another system that helps with that and by having the doctor have to click on things, check things, you also are not getting the crazy handwriting stuff that you used to get in hand-written charts where nobody could read it including the doctor, but that's a whole separate issue.
John Aughenbaugh: Listeners, part of the reason why we wanted to go ahead and do an entire episode about HIPAA is that as Nia started off the episode, you hear HIPAA used all the time.
Nia Rodgers: Well, John, maybe we hear that a lot because we have a medical school, but we also hear it on TV a lot too.
John Aughenbaugh: TV, yeah. Shows that are streamed. [inaudible] is a hospital or a doctor's office, chances are there's going to be an episode or three or four that makes reference to HIPAA. But again, for listeners, as you go through your life and you interact with medical providers, it's good to know what your rights are. It's also I think fair to go ahead and discuss what were the original purposes of this groundbreaking law because it was groundbreaking, but also to understand the unintended consequences. There are perhaps some things that need to be addressed as we move forward into the 21st century.
Nia Rodgers: I think one of the main things that you brought up in your list of things is that it doesn't give patients standing
John Aughenbaugh: Yes, in quote.
Nia Rodgers: Your entire way that you can bring a court case is to first thing that the judge decides is whether you have standing, whether you individually can sue the other party.
John Aughenbaugh: That's right.
Nia Rodgers: Have you been harmed in some way and did this happen to you or did it happen to other people when you just you're morally offended by it? Morally offended doesn't mean you can sue. You have to show that you have had direct harm from this individual and that you have a reason to bring this lawsuit and HIPAA didn't give patients.
John Aughenbaugh: No. What you have to do is complain to the Department of Health and Human Services and then it's up to HHS to decide how they want to, if you will, enforce the law to protect you or remedy the harm that you have received. But you can't go to court and claim that according to HIPAA, I've been injured. Because what a federal judge is going to say is, "Did you file a complaint with Health and Human Services?"
Nia Rodgers: Did they sue the provider on your behalf or do they say, yes, there's a reasonable complaint here and then you can sue?
John Aughenbaugh: Well, no. What HHS does is they decide whether or not the complaint has merit. According to my research, in a 15-year period of time between 2003 and 2018, HHS received over 186,000 complaints regarding HIPAA. Ninety six of those claims get resolved without HIPAA or without HHS filing a lawsuit against the medical provider. Most instances what HHS does is contact the hospital, contact the doctor and say, "Did you do x?" They conduct an investigation. If after the investigation HHS concludes a violation of HIPAA did occur, then HHS has discretionary authority to decide what would be the suitable punishment.
Nia Rodgers: Usually it's corrective action?
John Aughenbaugh: The corrective action.
Nia Rodgers: Quit leaving charts laying around in people's homes or hanging on their doors or whatever.
John Aughenbaugh: You got to let patients actually have a meaningful review of their medical records or you have a breach in your data backup system which this patient found out about, you got to stop that. What are the corrective steps are you going to take? The hospital or the doctor's office basically goes ahead and says, "Bugger off HHS" then HHS has to decide, "Are we going to take them to court or we're going to go find a different way to go ahead and force compliance. Got you.
Nia Rodgers: But you as an individual, can't run to a federal courthouse and say, my HIPAA rights were violated because according to HIPAA, your rights can only be, if you will, implemented by HHS, which again is a complaint. We've talked about this in episodes before where sometimes you can't do anything in the courts. What you do is it's adjudicated by an agency.
John Aughenbaugh: Yes.
Nia Rodgers: You go to the agency and you say, "Hey, a thing?" And they say, "Oh, yeah, that's a thing and we will make them stop doing it or whatever." It may not end up with you getting anything other than changes to the way that that group operates. But it's still a good thing to do if you have a complaint.
John Aughenbaugh: Yes.
Nia Rodgers: You should file it because if there is a problem, it needs to be fixed. You're not the only one that that's happening to most likely. It's hardly ever that the doctor has singled you out for violations or bad behavior or whatever. It's usually a practice problem and often it has to do with the number of people they see and procedures can get a little sloppy sometimes. It's usually not a personal vendetta, "I'm going to release your information in some horrible way that's going to ruin your life." I'm sure that happens to some people, but it's pretty rare, I would think.
John Aughenbaugh: Yeah. Again, listeners think about what Nia just mentioned in terms of COVID-19. Hospitals have seen so many patients that their emphasis on trying to maintain life may at times mean they were not a stickler for following every aspect of HIPAA and that's understandable. But again, according to my research, 31 percent of those 186,000 complaints, the investigation concluded that there was no violation, which again, reflects the fact that many Americans might not truly understand what HIPAA protects or doesn't protect. You and I know because we've had experience with HIPAA. I know because I did a whole bunch of research, but let's face it. Most Americans when they go to a hospital are not necessarily thinking about HIPAA. They're going to a hospital because they want to feel what?
Nia Rodgers: Better. They need health care. And or they are not going to hospital of their own volition. They're going because they are so ill that they've been taken there. I would assume, and this is a side note but I never we're going to wrap up relatively sane and I wanted to get it in here, you mentioned COVID technically telling your family that you are not likely to survive the evening is a HIPAA violation because they should not be revealing your health status to your family without your permission and if you are in a coma or in some other state that where you can't give that permission. But most hospitals will air on doing that so that the family can say goodbye and be with the person when they die. That's the complicating factor of HIPAA is, where is the moral ethical line?
John Aughenbaugh: Versus the legal.
Nia Rodgers: Exactly. Technically have you violated that person's HIPAA rights? Yes. But is it better for humans to be with other humans than to be alone when they die? For most people, yes. Most people would perceive that they would want to be with family. It's a really hard push-pull. We've talked for 50 minutes or so about this, we could talk for weeks about this. It's a really complicated issue. It's not as simple as you shouldn't ever tell anybody anything about anybody else's health, because sometimes people need to know, but by the same talk and disclosure can really harm people.
John Aughenbaugh: Yeah. I got to admit, Nia, because of my experience with and studying HIPAA even with my friends, I will go ahead and ask, "Is it alright if I share with others?" Again, that's informed by my experience with HIPAA. It's pretty amazing how a law can go ahead and shape behavior beyond the purpose of the law. But I'm at a point now where I'm just like, "One of my friends is really sick and they've disclosed their illness to me." I'm like, "Is it all right if I go ahead and share it with others and if so with whom?"
Nia Rodgers: Right.
John Aughenbaugh: Because again, it's been inculcated in my brain.
Nia Rodgers: Not to share it.
John Aughenbaugh: Yeah, because your medical information is your private business.
Nia Rodgers: And part of where that comes in for us listeners is that we're both been in higher education for so long.
John Aughenbaugh: Yes.
Nia Rodgers: FERPA some student's parents used to call the library and ask if their students had taken the tour of a library yet that was required for the UNIV 111, 200 courses. And I'd be like, "I can't disclose that to you. I'm not disclosing to you the movements of your adult child. If you want to know that question, you're going to have to ask them yourself and then you're going to have to trust whatever answer you get." I think probably you and I are cautious in part because we come out of that system of asking yourself constantly. What am I allowed to disclose here? I asked students when they come for a consultation meeting and I think they need to talk to the professor. I will say, would you like me to tell the professor about the problem or do you want to? I want to give them that choice. I'm not going to step in and do that for them. It's not right. One because they're adults. But two, because that's their professor. They may not want their professor to know that they came to the library for help. Some students don't and I don't disclose that unless it's a requirement of the professor and the class, which I only have a couple to do that. So yeah, it's [inaudible] .
John Aughenbaugh: To your point, Nia, in regards to FERPA, and I know FERPA is really shaped and molded. My appreciation of an individual's privacy because I'll have parents of students in my classes call me up and say. How is my kid doing in your class? Yeah, and I'm like, "Until I see a signed waiver by your son or daughter, I can't even comment. Your son or daughter is in my class."
Nia Rodgers: Exactly. I'm not even acknowledging that you have a child until.
John Aughenbaugh: Right. They are like, ''But I'm paying for their education," and I'm like, "That may be so, sir or ma'am." But until I see.
Nia Rodgers: That they're still an adult.
John Aughenbaugh: Yes, and according to this law and according to this university, they have privacy rights.
Nia Rodgers: That's right.
John Aughenbaugh: What's probably made this more difficult, and again, for our younger listeners, I apologize, but Nia and I are old enough to remember where our semester grades actually got mailed to our house.
Nia Rodgers: Yes.
John Aughenbaugh: Right?
Nia Rodgers: Often to whoever was co-listed on your tuition account, which was usually a parent. My mom got my grades before I did most of the time when I was in college the first time.
John Aughenbaugh: Well, yeah, because they would get mailed to my mom's. Permanent address. I wouldn't get home for three or four days after I took my final exam. I wouldn't get home and my mom will be waiting to discuss my final grades, and I'm like, ''I don't even know what they are yet, mom,'' and she was just like, ''Well, why don't you know?'' I was just like, ''Because I just took the exams four days ago.'' She was like, ''Doesn't seem like you're all that interested,'' and I'm like, "Hey, it's the end of a long semester, okay?''
Nia Rodgers: Right now I want to sleep. In two days, I will talk to you about this.
John Aughenbaugh: Yeah, right? My mom would be like, ''Well, I've had these for half a day and I've been thinking about it.''
Nia Rodgers: I have been stewing on them.
John Aughenbaugh: Translated, ''I've been thinking of all the ways. I want to go ahead and give you the business.'' Right?
Nia Rodgers: Right. We come from a time when you just didn't have those kinds of rights. Part of it is that we admire FERPA and what it protects, and also part of it is going back to Aughenbaugh's law of unintended administrative consequences.
John Aughenbaugh: Consequences, yes.
Nia Rodgers: This is going to turn out in ways that you did not expect and it's going to have to be there ongoing things that need to be fixed about it, especially the complaint system.
John Aughenbaugh: The effects on research but also clinical treatment, okay?
Nia Rodgers: Right.
John Aughenbaugh: Does it encourage risk-averse behavior by medical professionals because they don't want to be found in violation of HIPAA?
Nia Rodgers: Because they don't know because something hasn't been shared with them.
John Aughenbaugh: Yes, and also another way to look at this, Nia, is the rational comprehensive decision-making model would suggest that after we implemented decision, we should evaluate its effectiveness, and then do what?
Nia Rodgers: Fix it.
John Aughenbaugh: Yeah, make changes.
Nia Rodgers: Fix it. Right.
John Aughenbaugh: Because nothing is perfect. In the first instance, we're human beings. We're going to make mistakes. There's no sin in saying, ''Hey, we attempted something pretty darn good. We've got [inaudible]. It's been 34, 35 years. We should probably take a look at it and see if it's still working the way we think it's going to work now. There's this thing called the Internet. We've got multiple years of results. We can go ahead and take a look at this and say, ''Okay, are we comfortable with x? If not, how do we modify it?" That's not a bad thing. Right? The law still can be good even if-
Nia Rodgers: But need tweaking.
John Aughenbaugh: Yes. That's not a bad thing.
Nia Rodgers: A little bit of tweaking around the edges.
John Aughenbaugh: Yes.
Nia Rodgers: If you're listening to SHHS and the White House and Congress.
John Aughenbaugh: The Congress.
Nia Rodgers: We have some ideas about tweaking, about how to clean up a few concerns here, and we don't have ideas about some of them, but they still need to be cleaned up. Anyway.
John Aughenbaugh: How cool will that be?
Nia Rodgers: Thank you, [inaudible]. If we got the call from the White House, we'd like you to work on our task force for updating HIPAA.
John Aughenbaugh: Who's the Secretary of SHHS? It's Xavier Becerra, right?
Nia Rodgers: Yeah. If you get a call from him, I want to know about it. If I get a call from [inaudible] I'll let you know. Cool. Thanks, Aughie.
John Aughenbaugh: All right. Have a good day.
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