I have received a great deal of advice from well-meaning friends and colleagues regarding what one must do when speaking to doctors and specialists. Take a friend for support. Have your friend take notes, because you won’t remember everything said later on. Even if the doctor seems ready to move on to the next patient or bedside, be assertive and ask for clarification if you didn’t understand something. Take your records of appointments, medications, supplements with you to every appointment. Don’t assume the doctors all receive every report, or that they all talk to one another. Be prepared to look things up when you get home if you need to.

These are all fabulous tips. I do all of them. I am perhaps not a typical patient, however. I humbly submit that I am better informed and educated about healthcare and cancer, in particular, because I work in the field. I have a scientific background. I have spent a career on the watch for jargon in my own communications and those of others I work with when we are trying to tell others what we do. My mother and my husband have accompanied me to virtually every appointment and procedure I’ve ever had. It is my mom’s opinion that the specialists see that I am understanding what they are talking about, and are sometimes willing to give us more time or discussion. We joke that when we leave the office, my “support team” turns to me and says “so, what did he say, then?”. This is fine with me, because I need them for emotional support, to help me process and not go nutty, not to write down long words and convoluted options of next steps.

All of that being said, I see firsthand, time and again, how frightening this experience must be for people who don’t come equipped with the tools I have. For the most part, I understand what we are all talking about, and I am still upset and scared and most of the time. It did occur to me that it may be easier not to know, to be a little less informed. I did some digging on that idea, with others I know going through cancer treatments, and concluded that this is not so. We all want to know what’s happening, what will happen next, and what options are available, as simply as doctors can tell us. This is universal.

To me, this is an issue of “health literacy”, defined at Wikipedia as “the ability to obtain, read, understand and use healthcare information to make appropriate health decisions and follow instructions for treatment”. That sounds pretty important, no? Not just the ability to understand what we’re being told, but to use that information to make decisions. My question is how much health literacy is a responsibility of the patient, and how much it is the job of healthcare providers to ensure that you are able to understand information and use it to make decisions. I’m quite sure there is a balance to be struck in this patient/care provider relationship, and I can’t say precisely how much responsibility each bears. But I can say that, in my experience, healthcare providers could and should be putting forth a better effort to meet us in the middle.

What, specifically, could be done? I think a better coordinated care team effort should be in place. I know this various in different parts of the country and the world, but my experience in Saskatchewan has been that I had to ask, assertively, whether my four doctors would please speak to one another and come up with a single plan or ranked list of options, rather than each proposing his own opinion to me and leaving me to choose next steps. That was too much for me, would be too much for anyone, I would contend. An ideal patient-centered care team should include an advocate of sorts, who can help the patient navigate the system, and search for information if needed. And a dietician or nutritionist, perhaps someone with expertise in fitness and healthy living, who will advise on diet and exercise. No one, not one doctor, even brought this up with me, and I am a case of a healthy young woman on a watchful waiting program, monitoring my tumour for progression. I should be the ideal candidate for healthy lifestyle advice.

I have the sense that if we as a population suffer healthcare illiteracy, we are going to have to teach ourselves a little in order to get close enough to that balance point where we can at least ask the right questions. So, here are my additional tips to add to your mental file on how to step up your health literacy and advocacy skills:

• Don’t be afraid to ask if tests or appointments can be scheduled together or on the same day; the disconnect between different departments sending you for tests is astonishing, in my experience.
• If you haven’t heard results of a test, don’t be afraid to call your doctor’s office and ask about them.
• If your doctor uses a word you don’t understand, interrupt immediately and just say “I apologize, but I don’t know what that word means.” If you do it every time, you might see a change in how he or she communicates. Hopefully.
• Don’t be afraid to ask for a referral to another specialist if the one you’re dealing with consistently does not answer questions or talk to you in plain, simple language.
• If you have questions from your last appointment or something that has occurred since, write them down before you see the doctor; it’s easy to forget to ask when you get in the room and you feel like you’ve only got your allotted five minutes.
• Again, before an appointment, I write a list of things I expect to know at the end so that I can make sure to ask if they are not discussed. This can be something like – scan results, blood test results, diet discussion, prescription renewal, next scan timing. Think of this as YOUR meeting agenda.

On the topic of doing research after you leave an appointment, my best advice is that if you can find someone in your life who can do this for you, sometimes this is best. The Google world can be a scary thing, full of stuff that you don’t think bothers you, but will pop into your head the next time you’re sleepless at 3 am, guaranteed. And if you are doing your own online or library research, I could write another whole post specifically on scientific literacy. But I don’t have to, because it’s already been done, way better than I ever could write it. Read this. It is a guide to how to read and understand a scientific paper, for non-scientists. The number one frustration I think people have with science news in the media and online information is how to sift through it all to assess what is credible. If you aren’t already equipped with these skills, that link is the best I’ve ever seen at explaining what to do.

In the end, do we blame children for not being born with reading skills? No. We teach them.