Careful what you wish for. Health equity and participatory medicine depend on the widespread meaningful use of patient family advisors. The trickle of such advisors should be a stream. Unfortunately, even if the supply could meet demand, health care administrators, researchers, entrepreneurs lack skill in making good use of patient family advisors. Libby Hoy leads Patient Family-Centered Care Partners, a small organization with a large vision for improving the quality, safety, and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom.
What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you’re there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children’s and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to the Doctor’s Office. Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More
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?
I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy. Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said. No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time. It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!
A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying. Same with learning to talk. As an adult, I find failure a motivator to try again. As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.
For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.
Failure flavors humility and empathy. My best stories are of failure – my failures. People laugh with me. We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next? What did you learn? What did you try? What eventually worked?
So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well. Persist and laugh. Eventually, who knows?