Getting Out More Than You Put In

It's a matter of return on investment. We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In love, in life, in our family, in our work, in our passions. There are the lucky ones for whom work — which brings the most concrete return on investment — also brings the esoteric returns: happiness, satisfaction, pride, accomplishment. And yet there are those for whom their passion brings these things while failing to bring in the necessary financial returns to continue doing them. How does one balance what one needs to do with what one loves to do?

A fellow health activist posed a question on Wego's forum — how could she translate her passion for being a health advocate and helping others into a paying gig? I had no answer for her, short of being hired on to a pre-existing health advocacy organization or starting her own organization. Either way, she would need to be willing to work another job for income or do without income until the organization was well established enough to both generate finances enough to cover necessary advocacy expenses and pay a salary. Neither option is an easy go, and, of course, neither option comes with a guarantee of success.

Why does it have to be so hard for those who are willing to help to be able to help? Good help is hard to find, yet there is a talented bank of health advocates that is underutilized, or worse taken advantage of, simply because these advocates are patients. Patients who are health advocates most often do not come with degrees in social work, psychology, nursing, or adult education that are typically required of professional healthcare advocates. This lack of training is not an indication of a lack of ability; rather it is a result of the fact that many patients come into advocacy later in life. Patient advocates are motivated by their personal experiences. What they have to offer is a special insight into the disease process that can not be taught by any degree program. Their skills, cliche as it may be, come from the school of life and are therefore uniquely genuine. What technical skills are required of professional advocates — HIPPA compliance, conflict resolution, team building, medical coding, active listening, redirection, and so forth — can be taught from the book. No one can teach how to be a patient. Having been a patient doesn't even necessarily mean that one is able to completely understand another patient's experience. Yet having been a patient, having dealt with a disease, endows one with a degree of compassion and empathy that simply is not felt by those who have not suffered the disease at all.

Our healthcare system must make better use of this wealth of untapped resources. Bring these passionate advocates into the medical office. Put them to work. Allow a human connection back into medicine. We connect and communicate with stories, and as we are permitted to tell our story to another, we are suddenly made to feel less afraid, less alone because in that moment comes recognition of a shared narrative, in that moment "I" becomes "me too," which is at least double the return on investment.

Keep Calm and ePatient On

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: create your own "keep calm and carry on" poster. 

Patient Privacy in the Age of Social Media

Every Sunday night, healthcare Tweeps from around the world come together for the #hcsm (healthcare and social media) chat. The chat moves at lightning pace — and often overwhelms those new to the conversations. However, the #hcsm chat is the place to jump in with both feet. This Sunday, the first topic addressed dealt with patient privacy and social media. I've excerpted my own comments and those directly in return. 

What does patient privacy mean in age of social media? And, does that mean patients have a right to broadcast their care?

@AfternoonNapper Pt privacy=I can share about my health & care. What I share makes me fair game to be contacted by like-patients.#hcsm

@AfternoonNapper Broadcasting care - good & bad - falls under the realm of free speech; therefore pts have the right whether HCPs like it or not.#hcsm

@AfternoonNapper However, what is of interest is where the line of slander/libel can be drawn in re: the "print" of SoMe re: docs/facilities. #hcsm

@RyanMadanickMD >> @AfternoonNapper T1 do you think that there are HCPs who don't agree or don't like it? #hcsm

@AfternoonNapper >> @RyanMadanickMD Absolutely. If an HCP is criticized via SoMe, that has greater reach than simple word-of-mouth per usual. #hcsm

@TaborF You can choose to share your personal information, but can't always control what others will do with it once it's out there #hcsm

@AfternoonNapper >> @TaborF Spot on. And THAT's a huge part of the problem. #hcsm

@AfternoonNapper Frankly, doctors are the least of my worries re: disclosure of private info. Worry more about facilities, other patients, nosy ppl. #hcsm

@crgonzalez >> @AfternoonNapper And what about the terms of use from FB which tried to "own" all the content shared on its platform. Remember that?#hcsm

@AfternoonNapper >> @crgonzalez Another great point and one that would be a fascinating legal battle when it comes to healthcare/HIPPA/etc. #hcsm

@schwartzbrown Seems as if people feel they need to protect "patients" from themselves. #hcsm

@AfternoonNapper >> @schwartzbrown Patients do need some protection from themselves re: SoMe simply due to confusing legalities/policies. #hcsm

@AfternoonNapper Just because my patient group is largely on FB, that doesn't mean that all our participants know the nitty gritty of FB rules. #hcsm


To keep the conversation going — what do you think about patient privacy in relation to social media (Twitter, Facebook, discussion forums, etc)? There are commonly referred to risks. Do you feel that you fully understand the risks? Do the pros outweigh the cons? Have you directly experienced discrimination as a result of health disclosures on the internet? What can patients and group leaders do to address privacy concerns?


This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: write about the best conversation had during the week.