Looking for Answers in the Medical Library

Medicine has come a long way since 1942, when this was taken,
but what about communication between doctor and patient?

I work in an academic medical library, but at a public institution, so while our main mission is serving our students, faculty, and staff, we do also serve the general public to the extent that we can.  This means that occasionally, a patient will come in or call the reference desk and want to talk to us in detail about their medical condition.  Mostly I think they just need to talk; it’s not even so much about looking for information as it is just getting someone to listen.

Now that I don’t work out at the reference desk, I don’t deal as much with these patrons, but there has been one recently who was becoming too much for my student desk staff to handle, so they referred her to me twice.  The first time, she called while I was at a conference, and I got back to a screaming message about why did I never answer my phone, why don’t my staff even know where I am (they totally did and told her more than once I was away and when I’d be back), and how she was elderly and dying of cancer and didn’t have internet access and I HAD to help her.  When I called her, I got some more screaming and then we got down to the question.  With all the urgency she’d had when she left the message and the demands she’d made on my staff, I expected it to be something like “I need more information about this potentially life-saving cancer treatment that could bring me back from the brink of death!”  No.  In fact, it had to do with what doctors would have written in medical records in the 1950s and how certain diseases of infants were diagnosed at that time.

I told her that was going to be extremely difficult information to find and that I would need a few days, if I could get it at all.  She said she needed it right then.  I told her I’d call her back in a few days and that was the best I could do.  When I did finally get it, I called her and left several messages saying I’d found the information, but she never called back.  That was kind of annoying, after I’d gone to the trouble of finding all of this out for her, but what really struck me was how desperate she was to find this information that, as far as I could tell, didn’t really matter.  I could be wrong, but I’m guessing she had gotten a hold of her own medical records and was trying to place some sort of blame on a doctor all these years later for something that he missed.  I’m sure the statute of limitations for a malpractice suit would be up by now, not to mention I doubt the doctor would still be practicing or even alive. So why was she so desperate for this information?

This was back in November.  For awhile, I actually kind of worried that she had been as close to the brink of death as she claimed and that she had passed away before I could get the information to her.  I felt really bad about it.  However, she called back again this week and my staff referred her to me again.  She had more questions about medical records and basically wanted to read me her entire medical record and have me decipher it for her.  I told her that I couldn’t do that and that she should talk to her doctor.  Then she would say, “but what about this one thing – what does this mean?” and I’d tell her again, please, ask your doctor.  I ended up giving her a few definitions, but told her I wasn’t comfortable doing more than that, as I’m a librarian, not a doctor. She seemed somewhat satisfied when we hung up, which is good, but I wonder how long it will be before I hear from her again.  When I think about this consuming need she has to find out what these records mean, I feel bad for her, and I wonder what will change for her if she finds out the answers to her questions.

What really strikes me here, and the reason I’m writing this post, is how strange people’s interactions with doctors are.  I’m not sure what this woman’s reasons were, but many of the patient patrons I’ve dealt with seem unwilling to “bother” their doctor with questions and instead come to the library for answers.  That’s part of the doctor’s job! Doctors are of course very busy and pressed for time, but if a patient leaves a doctor’s office with questions, I feel like the doctor hasn’t fully done their job.  Of course the onus is also on the patient to ask questions, as doctors are not mind-readers, but I think there are many doctors who discourage that either outright or through their demeanor.  That’s not to say that I don’t think people should educate themselves and seek out information about their health, and as a medical librarian, I’m more than happy to point them to some good sources for doing that.  However, people should leave the office with fewer, not more, questions than they had when they came in, in my opinion.

I think part of this comes from the fact that we as a society seem to hold doctors in such a high esteem, as though they’re not people but some sort of minor gods.  They’re not.  The more I work with doctors, the more I see that they are just as fallible as the rest of us.  They say stuff with certainty – pronouncements on diagnoses and treatments seem like 100% fact, but more often than you’d think, it’s all really sort of a best guess.  For all that we know about medicine today, there’s still so much that we just don’t understand, and I don’t think patients realize that.  If you want a book that exemplifies this beautifully and is also quite a pleasure to read, I recommend Atul Gawande’s Complications: A Surgeon’s Notes on an Imperfect Science.

I don’t think the mystique of the doctor will fade anytime soon, but I think in an ideal world, patients would have more of an open relationship with their doctors.  Sure, they’re smart and very educated and have worked very hard, but they’re not gods.  If you aren’t comfortable asking your doctor questions about your care, you might want to think about finding a new doctor with whom you have a better relationship.  In the meantime, the medical librarians (well, speaking for myself at least) are here to help.

The Human Genome – What It Means to You (If You Want to Know, That Is)

DNA double helix*

Lately I’ve had the great honor to work with a researcher who is involved in the development of what will likely develop into a major weapon against disease: personalized medicine. My extremely simplistic explanation of what that means goes like this: many diseases, particularly cancers, are genetically based.  That is, mutations on a certain gene can cause you to be predisposed to develop a certain kind of cancer.  For example, genetic researchers have identified BRCA-1 and BRCA-2, breast cancer suppressor genes that prevent tumor development.  Genetic mutations in these two genes have been linked to the development of breast and ovarian cancer.

The practical application of this is that which gene is affected, and the way it is affected, can influence the way that you respond to medications and treatments for the condition.  That is, if you had a mutation on BRCA-1 as opposed to BRCA-2, you might respond better to Drug A than Drug B.  This science is very preliminary, but we’re learning more and more about how genetic factors relate to which treatments will be effective and which diagnostic tests will be accurate.  The researcher I know has told me that we’re a good ten years away from this becoming a part of regular medical practice, but at some point, it’s theoretically possible that you could receive targeted drugs designed to treat your specific illness.  Incidentally, Steve Jobs had his pancreatic cancer sequenced, but it was too late for him.

There’s still a lot we don’t know about how the human genome really works, but we have a lot of data.  This is part of the reason that it’s so exciting for me as a librarian to be involved in data curation.  In library school, I took a class in the biomedical engineering department called Medical Knowledge Representation.  For me, what it really boiled down to is this: right now, we have a lot of data, but we don’t quite know how to tease out real knowledge from that.  We can look at two different patients and see that one responds well to a given treatment and the other does not.  We have their tissue samples and their genetic info, but at this point, we haven’t quite got the know-how to get to the correlations between the genetic factors and the treatment successes.  In a way, the answers are there, but we don’t quite know how to read them yet.  As a librarian, I can help scientists preserve their data in a way that will facilitate it being used in ways that will aid in the discovery of cancer cures, once we have a greater understanding of how exactly the human genome works.  That’s pretty awesome.

As I’ve said, we’re still several steps away from having personalized cancer cures. However, there is a lot we do know, and there’s a lot that anyone with 99 bucks to spare can find out about his or her own genetic secrets, through a service called 23andMe.  It goes a little something like this: you spit in a tube and mail it back with your $99, and then in 6 to 8 weeks, you get to learn all about your genome.  You can find out more about your genetic ancestry and learn what percentage Neanderthal you are.  You can learn which diseases you’re at risk for out of a list of 116, including Alzheimer’s, a handful of cancers, Creutzfeldt-Jakob Disease (aka Mad Cow Disease), and even the dreaded Restless Leg Syndrome.  You can find out whether you’re likely to respond to 20 different drugs for everything from hypertension to depression.  You can find out what eye color you’re likely to have, in case you don’t have a mirror, I suppose.

I’ve looked at what the site can offer, and I guess at this point in time, I’m unsure whether I’d want this service.  I’ve known about 23andMe for awhile, but I came across some marketing they’re doing for the holiday season, I guess – 23 reasons to give their service as a gift.  My question is, would I want this as a gift?  Okay, so doing this can tell me that I’m at increased risk for, say, breast cancer or cirrhosis of the liver.  However, at this point in time, as far as I know, there’s absolutely nothing that I can gain from this information.  We haven’t come far enough that I could say, aha, I’m going to develop breast cancer – here’s what I can do to stop it!  Plus, just because I have the gene doesn’t mean I’m guaranteed to develop the disease – it might happen tomorrow, in ten years, or never.  So would I really want to know?  And also, would you want to give someone the gift of knowing that they could develop some horrific disease at any time?

I’m not in any way trying to downplay the importance of 23andMe.  For one thing, the samples they get from their subscribers get incorporated into research on the human genome, so in some ways, you’re adding to the scientific endeavor of curing human ills if you pony up the $99 for this, in addition to getting some good info for yourself.  There are some practical applications to this, like knowing you are likely to respond to caffeine or, more importantly, certain prescription medications.  However, would I want this as an unsolicited gift?  Probably not.  Do I want to know myself about my chances for developing whatever disease?  Honestly?  I don’t really think so.  Unless this warning came with some sort of practical advice – my god, you’re going to get Mad Cow Disease unless you start eating an orange every day! – I just see this as something else to worry about pointlessly.  And I already have plenty of those things.

Whether you want to know or not, of course, chances are good personalized medicine will be part of your future, given the trends in research right now.  Remember, you heard it here first. 🙂

*By Spiffistan (Own work) [Public domain], via Wikimedia Commons