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

Sadly skipping the 4th

July 4, 2013

This is a barbecue holiday. Well, barbecue and fireworks. That’s what July 4th is known for. You stuff your face with friends and then watch colorful explosions in the sky.

Well, that’s what others are doing today. Not me. Thanks to my heat sensitivity and the ridiculously hot and humid weather, I am stuck indoors with air conditioning. My body is much happier this way, but my mind isn’t. I’m bored and lonely. I have a friend visiting from out of town. He and other friends are all going to a bbq. I would go if it was 10 degrees cooler and the dew point was 15 degrees lower. Unfortunately, I can’t control that. A bunch of other friends are a bbq in Boston. After they eat, they’re going to watch the fireworks from the roofdeck. Again, I wish I could go to that.

It’s not my fault. It’s not anyone’s fault. But it still sucks. Knowing it’s no one’s fault doesn’t change the level of suckiness. So I’ll try to make the best of it. I took a cool shower earlier. I ate a nice lunch. In a few minutes I’ll do my physical therapy exercises. Then I guess I’ll read. So it’ll be just like any other day. Except it shouldn’t be. This isn’t like any other day. It’s one of the few national holidays that isn’t all about family and religion and tradition. Everyone is off work and everyone is celebrating. And I’m sitting my living room trying not to overheat.

Yup, it definitely sucks.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Lessons in limitations

July 1, 2013

I’ve been trying to convince myself that, if need be, I could do some part time work. It wouldn’t be much, but maybe a few hours every day. It would be something I could do from home, something computer-based. And then I got a reality check.

The other day I started a new blog. I’d been thinking about it for a while and I finally took the leap. This blog is about 2 years old and I’d forgotten just how long it took to set this up. Also, I was in much better health when I set this up. Hell, I was even working full time!

I set aside lot of time and I got to work. I signed up a domain name, and got the basic site set up. I created an email account to use for the work associated with the site. I signed up for a Twitter account related to the blog. Every time I signed up for something new, I had to confirm it through email. I had to make sure it all connected. I spent some time finding just the right look for the blog. I chose an avatar to associate with the blog account, the email account, and the Twitter account. I wrote the “About” page. I really wanted to write my first post, but I just didn’t have the energy.

In the end, I spent more than 3 hours working on my new blog. I got it all set up and ready for my first post. Well, it was mostly ready. There are some security things I still need to do and some other small items to take care of. But it’s mostly done. And by the time I got to that point, after 3 hours of work on the computer, I was mentally and physically exhausted. I was worn out. I was in pain. I’d had it. All I wanted to do was lie down. My eyes hurt, so I figured it would be good to read a book for a bit. I only read 2 pages. I was too tired to read.

So I learned a lesson. As much as I want to think otherwise, I’m not ready for a job, even a part time one. Sure, I spend lots of time on the computer now, but it’s broken up into small bits and it’s mostly reading. Being more actively engaged and sitting for so long was just too much. I’m not ready.

I just wish the insurance company and social security would read this.

3 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

The little things really DO make a BIG difference

June 29, 2013

It’s amazing how a small thing change make a huge difference. I was just getting mentally ready to go to a friend’s house. Pills in purse? Yes. Food? Need to bring some. Clothing? Better make sure it’s all loose today. Cooling towel? Cool enough to work for the car ride. The routine is familiar, but annoying.

And then I got a text from my friend: “What room temperature is best for you?”

WOW! We hadn’t discussed that. I knew he had a/c, and I’d mentioned that I’d need him to turn it on, but that was it. But he remembered how sensitive I am to heat. He knows that often I don’t meet up with him for lunch because I can’t stand the humidity. I know he and his wife don’t love the heat, but unlike me they can certainly deal with it. And he thought to ask what temperature I want his a/c set to. He’s going to change the temperature of their apartment for me.

Now that’s a thoughtful friend!

2 Comments | Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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