It is reasonable to believe Diabetes Awareness is bigger than a diabetes awareness “month”, right? Living this disease day in and day out for over 12 years speaks more than an arbitrary allotment in a calendar. Sometimes speaking with one collective voice makes a difference (like #DOCasksFDA), but individual stories, whenever and wherever they are told are just as impactful.
Julie Cerrone joins me this week to talk about things like avascular necrosis, psoriatic arthritis, complex regional pain syndrome, finding (and focusing on) positive thoughts when they are needed most, and how patient communities have made a significant difference in her life. We also sneak in some hockey trash talk, as one does. Enjoy.
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.
This is a post that discusses an egregious error of a seemly random pitch I received in my inbox. This one strikes close to home as planning for this year’s Medicine X is underway (I’m on the Advisory Board, remember?).
This April, the Cambridge Healthtech Institute and Bio-IT World will put on the second
annual Medical Informatics World Conference. They have an entire track devoted to “Coordinated Patient Care, Engagement, and Empowerment”.
This track will focus on “connected health, remote monitoring, personalized medicine and analytics to improve outcomes”.
Over the two days of the conference, there will be presenters and panels featuring some impressive job titles and backgrounds.
But none of the scheduled speakers are patients. None of the panelists are patients. As far as I can see, this two-day conference featuring a track dedicated to patients will not feature one patient perspective.