Ask the Doctor: Personal Patient Advocacy
In online healthcare forums, community boardrooms and hospital corporate offices these days the conversation is centered on “patient engagement.” The problem is, our country’s medical system is not set up for engaging patients and, if you have the misfortune of needing treatment, oftentimes it is all about disease management as opposed to maintenance of health. There is even a Patient Advocate* medical career, someone who helps patients with insurance billing, explaining difficult and complicated medical options for treatment, tracking medical records, etc. The fact is, the best patient advocate is the patient (or his/her immediate caregiver). But how does one approach a system with no cost transparency, poor internet accessibility of providers and medical records, healthcare facilities more concerned about provider convenience or facility appearance than the effect their care has on patients? Frankly, it’s a mess. Things are changing for the better but it is a long time coming.
The redesign of care will occur as more patients push the system for it. Becoming your own advocate (or your family member’s advocate) is paramount to excellent care. There are many patient advocacy websites assisting individuals in this new role — The Society for Participatory Medicine*, Inspire.com*, and Healthunlocked.com* to name just a few. However, to start, you have to accept the idea that YOU are in charge of your health.
Personal patient advocacy begins by PUTTing yourself first:
The partnership begins the process of advocacy. It is foremost that the individuals to whom you trust your health are willing to be partners with you in the journey. You should never feel threatened or dismissed by a physician when you present your research during an office visit. You should expect to be questioned about where you found any medical information. There is much rumor and poorly researched, non-evidenced based poppycock in the media. In my practice I expect patients to understand as much about their disease states or their health as they are capable of. I expect them to bring questions from reputable sites such as MayoClinic.com* or specialty sites like Inspire.com*. People who passively accept my recommendations without understanding are not engaged and are less likely to live healthy lives.
Understanding means taking the time to find resources necessary to grasp how to be as healthy as possible wherever you are in life. If you have diabetes you should be an expert in the disease. There should be no one more involved in your healthcare than you are. In this day and age of information access, there is no excuse for patients not to deeply understand their own health issues.
Try to make lifestyle changes, using the understanding you have developed from research and the recommendations you have agreed upon with your partnering physician. This is not saying “OK I’ll lose weight” in the exam room then promptly forgetting about it until the next visit because you have no skin in the game. Try involves active movement toward healthy goals, putting systems in place that drive change whether that is utilizing apps such as LoseIt* or MyFitnessPal*, joining a gym, or putting aside time to plan meals every week. In the context of illness, it may mean monitoring your blood pressure and graphing it using online tools or paper, keeping a food diary or exercise journal, which leads us to Tracking.
Tracking is multi-level. There is a huge self-tracking movement today utilizing tools such as the Fitbit*. Diabetics track carb intake or blood sugar levels using smartphone apps. A pen and paperwork just as well. But the other tracking imperative is keeping a Personal Health Record so that YOU know when your last tetanus shot was, what surgeries you’ve had and why you had them, and most importantly, what medicines and supplements you take, their doses, and what you are taking them for.
Together we can build a healthcare system that works for every patient, every time. And this will happen when patients are PUTTing themselves first and insisting that providers, physicians, hospitals, ERs, etc. do the same.
*Disclaimer: These websites may be helpful but Baptist Health does not endorse them as a product. The purpose of citing them is to illustrate the plethora of patient-centric sites available on the web.
Kathy Nieder, MD
Board-certified in Family Medicine