Part of my new role with Stanford Medicine X is to come up with the initial questions and prompts for the weekly hangout (every Tuesday from 6-7pm Pacific). I’m not sure if I’ll give away the questions ahead of schedule every week, but I think this week’s topic is something worth pondering for all of you – as I assume because you’re reading this, patient advocacy is important to you.
This week the topic is “ePatient Leadership – Making a Career”. As you continue to evolve as a patient advocate and constantly redefine your goals and objectives in all of this (because patient advocacy is a fluid, time-based metaphor that made more sense before I started typing this parenthetical), my hope is that you’re setting achievable, yet challenge goals for yourself. That said, here are some of the prompts.
- How do you define “making a career” out of patient advocacy? Does money have to be included?
- How do you balance the potential financial side of advocacy (like paid speaking appearances) with pro-bono or passion projects? Are there any concerns with respect to disclosure, biases, or reception among peers?
I don’t necessarily think that money has to be the defining characteristic that turns a patient advocate into a Patient Advocate, but it’s an easy distinction to make for the sake of conversation. Regardless of how you define “career”, there’s often going to be a tipping point that sort of signals a no-turning-back moment.
You know that moment: when you redesign your social media presences to present a (slightly) more coherent and possibly professional first impression. When your grammar becomes a higher priority with your communication outlets. When you start deleting more drafted tweets because, if you want to be taken seriously, sometimes a little self-censorship is a good thing. When you stopped obsessing about blog stats and started engaging new people inside (and outside) of your disease community.
What I want to know from you is, what was that moment that you realized that you’re in this for the long haul? What do you hope to accomplish out of all this – whatever “this” is in your eyes?
A Consequence of Hypoglycemia. 
The unstated issue here is, there is a big difference between patient advocacy as we practice it in social media, and the licensed health-and-social-work profession of Patient Advocate. Patient Advocates work in hospitals to make sure patients’ rights are respected; they are the go-betweens who explain a lot of the medical and hospital mumbo-jumbo to patients and their families; they receive and document patient (and family) complaints and (in theory) bring them up the appropriate chain of command. They are also the people who know about all the charity funding available for patients who would otherwise be unable to pay for care.
This is a whole lot different than being a political, outpatient, and e-patient activist for better and more accurate devices, more effective medicines and premarket pharmaceutical testing, better psychological treatment (as people, not problems).
To avoid confusion with the licensed in-hospital social workers, perhaps the more appropriate title for us is “Patient Activist”
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