Do You Know What’s in Your Medical Record?
A stable of apps now promise to safeguard your medical records, providing a convenient place for you to reference and share your health data. That is, if you’re actually able to obtain a digital copy of your data. Some doctors’ offices require you to fax, mail, or hand-deliver a signed paper release if you request your records—and they may only give you paper copies, not digital. Other docs make it as simple as logging on to a patient portal to retrieve PDFs and machine-readable copies of your records, like .xml files.
Today, the first step to taking ownership of your medical data, experts say, is simply asking for it. Then it’s up to you how to share and store it. But tech giants and smaller start-ups are working to make that process even easier—by creating an ecosystem for securely shared files, where you don’t need to do any work at all to find your records. Health tech writer Christina Farr and Erin Mackay, a patient access advocate, talk about some of the pitfalls of requesting your records, what to do when you get them, and how to prevent your health data from ending up on the dark web.
Christina Farr is a senior writer at Fast Company, based in San Francisco, California.
Erin Mackay is coordinator of GetMyHealthData in Washington, D.C.
IRA FLATOW: This is Science Friday. I’m Ira Flatow. A bit later in the hour, the story of a man who sampled his microbiome everyday for a year and kept a diary. But first, if you’re a Seinfeld fan, chances are you’ve seen this memorable episode where Elaine happens to catch a glimpse of her medical record and then hatches a plot with Kramer to steal the chart from the doctor’s office– remember that– so that she can read everything that’s been scribbled on it.
[THEME MUSIC PLAYS]
ELAINE: Get in there, get the chart, and get out. You got it?
KRAMER: Yeah, no problem. One chart coming up.
ELAINE: OK. Where’s my chart? Did you get it?
ELAINE: What? What happened?
KRAMER: I don’t know. But now they got a chart on me.
IRA FLATOW: Well, in real life, thankfully, you don’t need to steal your chart, but it can be a challenge. Some doctors make you fill out a form, then fax it, or mail it, or hand-deliver it to the office just to request your own record. And they may not give it to you digitally either. Other times, though, it can be as easy as logging into a patient portal and downloading your records onto your device.
You want to give it a try? We’re going to give you some hints and how to do that. Here to talk about your rights and how you can get your records onto that health app on your phone and some of the innovations under way aimed at getting your digital records to you are Christina Farr, senior writer at Fast Company in San Francisco. She joins us from the TEDMED Conference in Palm Springs. Welcome to Science Friday.
CHRISTINA FARR: Thanks for having me. This is one of my favorite topics.
IRA FLATOW: Well, thank you. Erin Mackay is coordinator of Get My Health Data, an initiative that advocates for patients access to digital health records in Washington. Welcome to Science Friday. Thanks very much, Ira. I’m excited to chat with you.
IRA FLATOW: It’s good to have you too. Christina, you wrote a story about the CEO of a health IT company whose own wife had a terrible time getting her own medical records and sort of changed things for him.
CHRISTINA FARR: Yes, that was a fascinating story to write because this is someone who was the CEO of one of the largest health IT companies in America. And when his wife got sick– I guess everyone becomes a patient at some point– she had to carry around her medical information in paper bags.
And I had a very honest conversation with him last year when I read this story, and he was really taking a look and saying, you know, what more could I be doing to fix the situation, to make sure that all patients have easy access to their medical information, and that it’s digitized?
IRA FLATOW: And Erin Mackay, for most people, is it that much of a hassle? How far have we come from that Seinfeld episode?
ERIN MACKAY: Well, that Seinfeld episode actually aired the year that HIPAA took effect, and particularly, the law that gave patients access to their health information. But unfortunately, it continues to be quite difficult for patients to navigate the records request process, and particularly to obtain, as you say, digital copies of their health information. I think there’s a lack of understanding of the rights patients have to this information and providers’ responsibilities to make it available. And so that is what Get My Health Data, an initiative of the National Partnership for Women and Families, has been looking into for the last year. You know, what is it like for people on the ground to request their medical records and what barriers do they often encounter?
IRA FLATOW: I encountered one barrier when I wanted an x-ray from my doctor and he gave me a little disk and I brought it home and I couldn’t read it. I didn’t have a formal translator for it.
ERIN MACKAY: Yeah, unfortunately, most laptops and computers these days aren’t sold with disk drives and that is one of the ways that digital copies are often made available– burned onto a drive or perhaps in a PDF. And while that’s a great start in terms of getting electronic data to patients, it’s not available in the sort of structured file format that would make it possible to upload into a health app of a patient’s choice, for example, to make it easier to organize data and compile data from different doctors and hospital settings. Because many patients have their data sort of strewn about different institutions, and it would be great to give them a complete, consolidated view of their health history.
IRA FLATOW: Christina, are our big tech companies like Apple and Google working to make this easier for patients?
CHRISTINA FARR: Yes, I mean that’s been one of the sort of big areas of optimism in the past five years with various companies like Apple, which you wouldn’t really associate with healthcare, even a few years ago, have made a big push into trying to get this medical information to patients. They’ve released things like HealthKit, which is one of their sort of interfaces that aims to bring together the medical information that you might get from a provider, like your lab history, and so on, and combine that with the types of information that patients are now collecting themselves. So if you have an accelerometer on your iPhone or maybe you’re collecting your blood pressure or heart rate– all that information can now be combined together on a smart phone.
But, of course, the challenge remains. Much of this information has already been discussed. It’s just not machine readable. It can’t be read by a computer, and that continues to be a major source of frustration.
IRA FLATOW: Are there small startups that know this and see that there’s money to be made by getting an app that will read all these different things that you can download into it?
CHRISTINA FARR: Absolutely. I actually tried one recently called PicnicHealth. You pay them a fee, and they will go out and try to get all of your medical records from all of the different hospitals and health systems that you’ve ever been to you throughout your life. But that doesn’t mean it’s going to be perfectly aggregated information because they still might claim that they’ve lost your record or they can’t find it.
But it’s just– on one level, it’s great these startups exist. On another level, this information, we have the right to have it. You shouldn’t have to pay someone else to go out and find it for you. But, you know, we’re still at that point, and we certainly haven’t reached this holy grail of true interoperability or data sharing yet.
IRA FLATOW: But let me ask both of you this general question then. Do you have a right– should your doctor– I mean– is he or she forced to give you your records if you demand them?
ERIN MACKAY: Absolutely. Patients unequivocally have a right to a copy of their medical record and other health data and that now includes a digital copy of that information if the doctor has the capability to produce it electronically. So patients aren’t necessarily asking their doctor for a favor for copies of these medical records. They’re no longer difficult patients as in the Seinfeld episode.
They are simply asking for what they have a right to. And also I would note that empowering patients with this kind of information to help them make decisions, to set and track goals, to share information, as Christina says, that they have about their health status and their symptoms is particularly important.
IRA FLATOW: I’ve had doctors tell me, you know, I think it’s a great idea to share information, but I’m fearful of putting your records out on the internet.
CHRISTINA FARR: Yeah, I’ve heard that too. And, you know, there was a great program a number of years ago called OpenNotes, which is still ongoing– this idea that we should be sharing clinician’s notes with patients or maybe you can even find out if you are a difficult patient or if there is something wrong in your medical record. And one of the fears that I heard from doctors early on around that is how is a patient going to react if they read that I’ve written that they are obese or they might confuse a medical term like SOB. And once the pilot and the trial was rolled out, it turned out that that was really a rare occurrence if at all. Patients seem to be very receptive to this kind of information and they didn’t see much push back around it.
IRA FLATOW: So Erin, what should a patient do? Let’s say you’re starting from zero and you want to get your medical records. What steps should I or anybody take?
ERIN MACKAY: I think first and most important it’s important to have an understanding of what your rights are, and we offer a lot of tools and resources on getmyhealthdata.org to help you understand what your rights to your medical records are, how to navigate the request process. And then I think very importantly, what to do once you get that data. I think that’s another important piece– is once you understand your rights once you make the request and hopefully successfully receive your data, you need to be thinking about a safe and secure place to store it.
There are a lot of apps on the market that either will go out and make the request for you or provide a place for you to store and organize your data, but there’s a lot of variation in how apps or medical devices use, share, and protect health information. And so I think it’s important that we start doing a better job telling patients about these apps, data-sharing policies and practices, in a transparent and understandable way so that consumers can make these decisions and feel confident that they have easy and secure access to their data when they need it.
IRA FLATOW: Well, let’s talk about that a bit, Christina. I mean, there are people, I’m sure, who are going to feel insecure that hackers are going to go get my information and either sell it to someone else or to hold it for ransom or blackmail me or whatever.
CHRISTINA FARR: Yeah, and this was a serious consideration. I was recently invited by IBM security team to take a tour of the dark web, which is a place that hackers can go into not very legal things, in a lot of cases, and I saw a lot of medical records up for sale. These medical records are the new credit cards. So hospitals have not been rated particularly highly in the past for their security practices and I think in the next five years, we’re going to see increasing pressure for them to be as secure as, say, other industries that manage sensitive information like the financial sector.
IRA FLATOW: That’s what hackers have told me– that we don’t have to hack into the hospital because it’s so insecure within the hospital itself. It will leak out.
CHRISTINA FARR: Yeah, I mean I’ve even heard of cases where some of this information get faxed, gets left there for a while, and anyone could just walk past and pick it up. And that’s pretty scary that something like that could happen
IRA FLATOW: Erin, any idea if the whole healthcare technology space might change much under this new administration?
ERIN MACKAY: Well, I think the good news is there is a great amount of tension to the role that health data plays in, as I said previously, empowering consumers to take a greater role in their health and in their healthcare. And I think that’s a goal that is agreed upon by both the old administration and the incoming administration. Luckily the issue of health IT, health information technology, has long enjoyed bipartisan support. And recently, actually, just yesterday, the House of Representatives approved a sweeping medical innovation bill that included some provisions related to health data and interoperability, and particularly around increasing patient access to their data to longitudinal records, so a more holistic, comprehensive view of your health information. And also in a commutable format, which as Christina mentioned, is really critical to making the data that we have more actionable and useful in both the daily lives of patients, but also for providers.
And a good place to start might be at getmyhealthdata.com.
ERIN MACKAY: Absolutely. We would love for you to take advantage of our resources and request your medical records and share your experience so that we can work with the system overall to seek improvement.
IRA FLATOW: Erin Mackay, coordinator of Get My Health Data and initiative advocate for patient access. Also Christina Farr, senior writer at Fast Company, San Francisco.
Thank you both for taking time to be with us today. Have a great weekend. We’re going to take a break, and coming up, ever looked at a dead squirrel and thought, gee, this is my next art project? We’re going to talk about taxidermy, the stuff of museums– get it– and something you can do at home. Stay with us. We’ll be right back.