NCC18 Presenter: Danny van Leeuwen


NCC18 Presenter: Danny van Leeuwen

Join Danny for his session during our Third Annual National Caregiving Conference:

Reading the Room and Yourself on Saturday, Nov. 10, at 4 p.m.
Do you ever feel like you're part of someone else's play. Just dropped in. You don't know your lines, you don't know the other characters. You think you're in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? You think your playing yourself, but you're not quite sure. On top of it, you feel like crap, you're exhausted, you're cranky. You exit, stage right, left, whichever? What just happened? What do you do now? Oh yes, time to live life again.

When I worked at Boston Children's Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There's tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension.

Being sick is often like being in someone else's play, a drama, a farce, with changing characters. Bewildering. Discombobulating. Often care partners serve as dresser and assistant director - caring and advocating. It depends on knowing your loved one, knowing yourself, knowing what you're trying to accomplish together in this scene, and reading the room. The most important part is knowing yourself and taking care of yourself. It takes strength and serenity to read the room and make something happen in minutes. Minutes may be all you have. After taking the Big Apple Circus class, I found that it only takes seconds to step back, be like a sponge, and read the room. In real life, reading the room happens over and over and over as new people enter and exit. This allows me to remember that it's our play, I'm here to accomplish something on behalf of my caree, and I can direct.

Let's explore this together.

Danny also will share perspectives as a male family caregiver during a panel discussion on Saturday, Nov. 10, at 9 a.m., and will join the Caregiving and the Workplace Summit on Friday, Nov. 9, at 10 a.m.

Danny, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with Multiple Sclerosis, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. As a patient and caregiver activist, Danny focuses on learning what works for people: informed decision-making, patient-centered research, communication at transitions of care & technology supporting solutions created by and for people. Danny has presented about caregiving at the National Caregiving Conference, HIMSS, and the Medical Informatics World Conference. Danny serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support (PCCDS) Learning Network and as patient expert for CDS Connect. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness and Decision Science (CEDS) Advisory Panel. Danny is active in the Society for Participatory Medicine and is editor of their newsletter. He is a technical expert for the CMS-funded Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Danny blogs weekly ( and was recently published in BMJ and JoPM.

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We are so grateful to the following sponsors for making our conference possible:

~ AARP ~

~ Seniors BlueBook ~ Seniorlink ~ Henry Ford Health System CARE Program ~

~ Society of Certified Senior Advisors ~ Mindlight ~