What is so hard about sharing medical records?

July 11, 2013

I put a file into Dropbox on my computer, and suddenly I can access it on my phone or on another computer’s browser, as long as I have the password. The technology is there, so why can’t we share medical records?

My last rheumatology appointment was good, but it could have been better. It would have been nice if she knew what blood tests I’d had done lately. Unfortunately, she had zero information on that. I have some info, but it was at home. I hadn’t thought to bring it. Digitalization of medical records has been spreading and I love it. Unfortunately, at best it has been happening within individual medical practices and hospital systems, but not across them. This means that if you see 5 doctors at Beth Israel, they can all see each other’s tests, notes, comments, etc. However, if you see 4 doctors at Beth Israel and 1 doctor at Mass General, the Mass General doctor can’t see anything from the others. And this is what happened to me at my rheum appointment. She had just switched to a new hospital. The old hospital was supposed to send my records over months ago, but they’re backlogged and hadn’t gotten to it. Even worse, none of my other doctors are in this hospital system, so she can’t see their notes, either. We were stuck.

As for me, I can only see certain things from one hospital. Thankfully, that hospital realizes how useful it is for patients to see their own medical info. I can’t see everything, but I can see most test results. That’s fantastic! Unfortunately, I can’t see any other information, and the other hospital networks I’m using don’t have this option as far as I know.

I’m certain it doesn’t have to be this way. Yes, it’s important to have security measures in place. I definitely don’t want random people seeing my medical information! But should I be able to access my records whenever I want? Why must I make multiple phone calls, pay a fee (paying a fee to see my own records is absurd!) and wait for weeks or even months just to see my own records? Why can’t my doctors all see each other’s notes and labs? It would improve my healthcare greatly!

It is unrealistic to assume a patient will only see doctors in one hospital network. In fact, that’s one reason my original diagnosis was delayed for so many years – my PCP refused to refer me outside of his network, and they didn’t have the right specialist. If I’d been sent to the right specialist, I could have potentially been diagnosed many years earlier and had very different outcomes.

I have been going to the trouble of getting copies of all of my labs over the last several months. It’s a big effort, bigger than it should be, so far, it’s been worth it. And that’s why later today, I’m going to head over to the library to copy those labs (yes, I know photocopiers save images, but what choice do I have?) I’m seeing a new doctor in a new network in a few weeks. I’ve been waiting for months to get into this particular practice and I finally have an appointment. Unfortunately, he won’t have access to any of my medical records, so it’s up to me to bring them. I will spend time, energy, and money to make copy after copy. Then I will bring the large stack of papers with me, and it will be up to the doctor to find the relevant ones, since there won’t be any easy sort or filter options as there would, or at least should, be on a computer.

This system is harder than it needs to be and it’s hurting patients. It needs to change. If the goal in seeing doctors and other medical professionals is to get healthy, then shouldn’t this be considered a priority?

1 Comment | Educating, Expectations, Frustration, Healthcare, Limitations, Politics, Rants | Permalink
Posted by chronicrants

A day to celebrate! DOMA is dead!

June 26, 2013

Obviously I was upset yesterday. And sure, I should probably write about the pain flare I had last night while I was sleeping. But I just can’t. Today is too great a day to dwell on anything bad!

For those who don’t know. The U.S. Supreme Court ruled today that DOMA is unconstitutional, and it also ruled that Prop 8 had no standing. In English, the Defense of Marriage Act is dead, which means the federal government will now recognize same-sex marriages performed in the states where they are legal. The Proposition 8 ruling means that same-sex marriage is now legal in CA.

When I was younger, I just assumed that if I grew up and fell in love with a man then I’d get married, and if I fell in love with a woman we’d live together. That was it. Then in 2004, same-sex marriages started taking place in my home state of Massachusetts and everything changed. Suddenly, I could marry a woman! For some people this had an immediate affect. Since I was single, I wasn’t about to get married, but it still changed my attitude and also others’ perceptions of me. After all, if we’re equal enough to get married, maybe we’re just plain equal.

Even with more and more states recognizing same-sex marriages, the federal government did not. This affected taxes, inheritances, hospital visitation rights, health insurance, immigration, and so many other issues. I felt the inequality myself. I saw it affecting my married friends.

Today that changed. After days, months, years of waiting, we finally had the answer: the Supreme Court ruled that the federal government must recognize all marriages equally, just like it had before DOMA was created. I felt the initial excitement: WE WON! And then it started to sink in. I started to feel it. We won equality. We won rights. We were going to be treated the same as everyone else. I watched my Facebook and Twitter feeds fill up with the excitement. I saw the occasional detractor and dismissed them entirely. They’re falling behind the times. I have no doubt that one day soon, same-sex marriage will be legal throughout the country. The dominoes are falling. The objectors are realizing they have no valid points. The general public is realizing that if they’re straight, this really doesn’t affect them directly at all. And soon this will just be another embarrassing part of history.

I usually make an effort to write only about chronic illness-related issues but, well, this is my blog so I can write whatever the hell I want, right? And today I really can’t write about anything else. It’s too great a day.

7 Comments | Educating, Expectations, Milestones, Politics, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

I’m tired of defending myself against bigots

June 25, 2013

The disability insurance company is trying to prove I’m not really too sick to work. Social security is trying to prove the same thing. My sister apparently has similar thoughts. Medicaid is doing the same thing. And many doctors over the years have thought it was all in my head or that I was exaggerating.

So many people, more than I want to think about, seem to think that I’m not doing enough to get better. They think I should be seeing different doctors and taking magic pills so that I’ll be perfectly healthy.

The Supreme Court is due to hand down decisions on Prop 8 and DOMA this week. These two cases regarding same-sex marriage will change the lives of many people close to me. They will change my life too. If same-sex marriage becomes more commonplace in the US, people will become more accepting of it. I have no doubt of that. And that would make things so much easier.

Even within the LGBT community, so many people say that bisexuality doesn’t exist. Bisexuals aren’t real. They talk about “gay marriage” as if same-sex marriage only affects the gay and lesbian communities.

For the first time in a long time, someone said an anti-semitic slur to me today.

Strangers seem to think it’s ok to call me “honey” or “sweetie” in a diminutive way. People often assume I’m not good with math or with computers. They assume I can figure things out in logical ways. When I get upset, people have suggested that it’s “just my hormones.” They make it clear that my thoughts, feelings, and abilities are less valid to them because I am a woman.

I’m so tired of defending who I am. I am me. That’s it. End of story. So if you have a problem with people with chronic illnesses, or with bisexuals or Jews or women, or with a member of any other minority group, you should think about what’s wrong with you that you think you have to be better than everyone else. Then take your nasty thoughts and keep them to yourself.

4 Comments | Educating, Expectations, Frustration, Insensitive, Rants | Permalink
Posted by chronicrants

Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.

2 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Milestones, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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