Patient Advocacy

(This post was originally posted on the Baptist Health Kentucky Blog)

In online healthcare forums, community boardrooms and hospital C-suites these days the conversation is centered on “patient engagement”. The problem is, our medical system is not set up for engaging patients and if you have the misfortune of needing treatment, ofttimes 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. Fact is, the best patient advocate is the patient (or their immediate caregiver) themselves. But how does one approach a system with no cost transparency, poor internet accessibility of providers and medical records, hospitals 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.

Screenshot 2014-02-02 12.42.34The 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 roll–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:

  • Partner
  • Understand
  • Try
  • Track

Partnership begins the process of advocacy. It is foremost that the individuals you trust your health with 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 like MayoClinic.com  Cleveland Clinic 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.
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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 like 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.
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Tracking is multilevel. There is a huge self-tracking movement today utilizing tools like the Fitbit  nd Nike’s Fuelband  Diabetics track carb intake or blood sugar levels using smartphone apps. A pen and paper work 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.

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