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Engaged with Sax

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’

OMG, I thought I’d died and gone to heaven. Turns out the two most important things to me are that my progressive MS progresses as slowly as possible and that no med threatens my pathological optimism.

Several years later, I’ve found that my neurologist works very hard to design his day so he has enough time for me. He’s under pressure to see more people for shorter periods of time. He says that the portal helps him avoid seeing people who just need him for a second and gives him time for longer visits.

When I read about Shared Decision Making (SDM), it sounds like one of the goals is to get me engaged. I don’t know anyone who isn’t engaged in their health…after all, it’s their health. We might not have the same medical goals as the clinicians, but we want optimal health as we define it. We’d like to have the knowledge and resources to fully engage together.

My health team includes at least 12 clinical professionals (PCP, neurologist, pediatric and adult neuro-ophthalmologists, PhD optometrist, dermatologist, neuro-urologist, physical therapist, chiropractor, massage therapist, acupuncturist, psychologist, and meditation coach). They are all engaged.

My neurologist tells me he never learned how to engage people in medical school. He’s learned mostly from other people whose team he’s on. He figures I’m in charge and I know the most about me. His expertise is fairly narrow.

He’s most fascinated that I play baritone sax. I can’t offer you anything better than that. It’s good for your lungs, your strength and dexterity, your mental health and creates new brain pathways all at the same time. What can I do to help you keep playing?  

When working with patients, identifying a passion or goal can serve as a destination or barometer to drive that person to wellness. Adjusting your treatment plan and language to that passion or goal also aligns you as partners. This has become part of how my doctor understands how I’m doing. The two standard questions he always asks me: ‘Have you fallen? And are you still playing the sax?’

I’ve learned to appreciate these barometers: safety/risk and meaning in my life. We are compatible partners. I’m blessed.

This was a guest blog post authored this week with Geri Lynn Baumblatt on the Association for Patient Engagement web site

Danny van Leeuwen is a patient (multiple sclerosis), caregiver, nurse, leader, informaticist, musician, Opa, and blogger ( He seeks to maximize the experience of people at the center of care (individuals, caregivers, clinicians, direct care and support staff). He consults, serves as co-chair for PCORI’s Communication and Dissemination Advisory Panel, has led the Patient Family Experience initiative at Boston Children’s Hospital and was Vice President for Quality Management at Advocates, Inc. He plays baritone saxophone in a blues funk combo. Follow Danny on Twitter @HealthHats

Geri Lynn Baumblatt, MA, is the Executive Director of Patient Engagement at Emmi where she oversees the creation of multimedia patient engagement, education, shared decision-making, and behavior change Emmi programs and interactive phone calls. She hosts an annual October Health Literacy Month blog series for Engaging the Patient. She serves as an Editorial Board member for the Journal of Patient Experience. Emmi Solutions works with decision scientists, behavior change experts, patients, and clinicians; they draw on their research and experience to create content that helps patients engage in their care. Follow Geri on Twitter@GeriLynn.