Someone asked me for my pearls of wisdom from my journey as a patient/caregiver activist. Pearls? Wisdom? Well, here goes:
- Show up, listen, then speak up.
- Do your homework – prep for calls and meetings.
- Keep asking questions until you understand what the group, the research, the treatment, the service is trying to accomplish for whom. Then think, “So what? Why should we care? How does this affect us?”
- The people around the table who don’t identify as patients or caregivers don’t know as much about life as you do. They specialize in whatever. You specialize in the journey – in the impact of the policy, the technology, the service, the setting on real people. You are as much of an expert as anyone else.
- Open doors for more patient/caregiver experts. As expert as you are, you’re one voice.
- Deliver on your commitments. Under commit, over deliver.
- Build your network – Google or LinkedIn attendees and add them to your network/contact list.
- Leverage your network – they understand asking for help.
- Feed your network – support others as much as you’re able, whenever you’re able. You’ll learn something, create goodwill, and release endorphins.
- If it feels like wasted time, it is. Vote with your feet. You only have so much gas in your tank.
- Failure is precious. Learn from it.
- Have a blast.
I’m only pretty good at this stuff. What are your pearls?