A scan of Steven Keating’s brain eight years ago revealed a slight abnormality — nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.
But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be “smell seizures.”
He pushed doctors to conduct an M.R. I., and three weeks later, surgeons in Boston removed a cancerous tumor.[i]
In todays world of High Deductible Health Care Plans and Health Savings accounts individuals are taking more direct involvement in their health care. It is also easier than ever to obtain health information from the internet (more about that later).
The era of the authoritarian doctor who “knows best” is over. Being able to talk with one’s doctor is a cornerstone of successful health care and essential for making the best medical decisions. When people take an active role in their care, research shows they fare better.
Yet patients often don't speak up for themselves. Here are a few tips for how to be a better health advocate.
- Be prepared
Research accurate health information. There is a lot of great information and a lot of false information on the internet. When looking at a sites information ask the following questions:
Who said it?
How recent is it?
Can you find the original research sited?
Look for the HONcode – a certification noting reliable medical and health Web sites.
Arrive with a summary of your health since your last visit.
Take notes or better yet bring someone with you to take notes for you.
- Ask questions
You have the right to ask as many questions as often as you need until you fully understand.
Avoid "doorknob complaints." Those are things you suddenly remember, or pluck up the courage to mention as you're walking out the door.
Consider asking “What can I DO vs What can I TAKE.” This can prompt the doctor into thinking what can I advise versus what can I prescribe. This is certainly not to say you will never need medications. However, it is important to understand that positive results can often be achieved through lifestyle modifications, such as getting more sleep, reducing stress, quitting tobacco, eating nutritious foods and being physically active.
- Communicate concerns and desires
Assert yourself if you have a problem with the care you're getting, or if there's an issue you want your doctor to consider. Out-of-pocket costs are often a concern. Many are shy about bringing up financial concerns with a doctor.
"There are many barriers that prevent patients from raising concerns," says G. Caleb Alexander, MD, an assistant professor of medicine at the University of Chicago. Some are embarrassed, he says, while others don't bring it up because they think there's nothing doctors can do, or that they don't have enough time to talk about it. What's more, some people fear they will get substandard care if they mention money is an object.[ii]
The fact of the matter is that in almost all cases physicians have good options available to assist patients who are burdened by their out-of-pocket costs.
If your concerns are not addressed, consider finding another doctor.
- Review health records
You have a right to your medical records – they are yours. Under federal law, you can obtain copies of your medical information from virtually any place you receive health care services. Providers have 30 days to act and can charge for the cost of reproducing the records, but not searching for them or retrieving them.[iii]
The end result of advocacy is empowerment. Advocacy makes you more than just a number or statistic; you become a force to be reckoned with, a questioner. And there is great comfort in answers that make sense to you. [iv]
[i] Lohr, Steve (2015). The Healing Power of Your Own Medical Records. Wall Street Journal. Retrieved April 1, 2015 from http://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html?ref=health&_r=0
[ii] Web MD. Be Your Own Health Advocate. Retrieved July 20, 2015, from http://www.webmd.com/healthy-aging/features/be-your-own-health-advocate
[iii] Monday, Melinda Beck, (2015). How to Take Charge of Your Medical Records. Wall Street Journal. Retrieved July 21, 2015
[iv]Journeying Beyond Breast Cancer (blog, October 5, 2012) http://journeyingbeyondbreastcancer.com/2012/10/05/what-does-it-mean-to-be-your-own-health-advocate/ Renn