The old adage “knowledge is power” is certainly true when it comes to navigating the health care system. I am an educated woman who happens to work in the field of health communication. I’ve written and edited hundreds of materials about diseases, treatment options, and prevention strategies. I understand a lot of medical terminology, and I’m savvy about where to search for credible answers to health questions.
Still, throughout this recent medical journey, I have found myself feeling unsure whether to call a nurse or sit tight at the appearance of some new symptom. I have been disappointed to learn that I misunderstood the order of things to happen and must wait, still longer, for some answers. And I have been frustrated to report something I thought was worrisome and out of the ordinary only to be told, “Oh, yes, that happens sometimes.”
Surely, there can be better communication in the health care system to clarify explanations and expectations.
How many unnecessary follow-up calls, urgent care visits, and stressful nights could be avoided if patients were given more complete and easier to understand information? I’m not saying we need laughably long lists of potential side effects like you hear on drug commercials–that doesn’t seem particularly helpful either. And, yes, every patient is unique. But having a list broken down by “These things happen to almost everyone,” “These things happen to some but not all people,” and “These things are uncommon but can also happen”–along with clear instructions for what to do if you experience those things–might give patients a better sense of when a situation is OK and when it is reason for action.
I have received many handouts and booklets about my condition and the types of doctors, tests, and treatments that I am likely to encounter. It’s not necessarily that there has been a lack of information, but rather that the information has come up lacking. One key element that’s often missing is the expected order in which various steps occur and the timing of those steps. When you plan a trip, you set an itinerary of where you will travel and how long each leg of the trip will take. Why can’t we have something similar for serious medical conditions? Patients might feel more in control if they had a better picture of what their health journey would look like.
If I’m having such a hard time with some aspects of my health journey, I can only imagine what it is like for someone with limited health literacy, someone who struggles to read or understand English, or someone who has to devote mental energy not only to figuring out what’s next for treatment but also how they will pay for that treatment, find transportation to get there, or secure dependable childcare so they can attend doctor or clinic visits.
We’ve come a long way, I realize. The push for plain language has improved patient education materials, and some health insurance companies even offer navigators or concierges to help patients find their way through the health care system. And it’s probably unrealistic to think we can ever take all the mystery and confusion out of medical care for patients and their families who, unlike the health care providers, haven’t devoted their life’s work to treating a given condition. But we can do better!
Better information presented more effectively can help improve patient outcomes, improve well-being for people dealing with acute or chronic health conditions, and contribute to efforts to close health gaps among vulnerable populations. All the advances in medicine can only go so far if patients don’t understand what is happening to them and how they can partner in their own health care.