About the speaker:

Danny van Leeuwen is an E-patient, caregiver, registered nurse, and informaticist.

How does an individual figure out what works for them?

I think you learn what works by trying things. The life journey for an individual, for me, for you, is an experiment. The way I look at it is, that I’m trying to accomplish something with my health journey. I have multiple sclerosis, it’s a progressive disease and I want to progress as slowly as possible.
I’m also a pathologically optimistic person, and I don’t want to mess with that. It’s a real strength to be optimistic, I feel better having a positive attitude. I also play the baritone saxophone, and I don’t want to mess with that. Those are the three things that I want to accomplish, so I need to experiment with the things that are going to help me accomplish those health goals.
I can and I do go to research and try to learn what works for populations, or groups of people. Just because something works for groups of people or is likely to work for groups of people doesn’t mean it will work for me so I feel like I need to try stuff. If it doesn’t work then I need to adjust and try something else, so I think it’s experimentation.

Suggestions for improving empathy in health service delivery?

You don’t create empathy. Some people have no empathy, some people have lots of empathy, and then there are people in between. I think what you can do is foster a situation where empathy can exist and grow. It’s very challenging to be empathetic when you have 8 minutes as a clinician, to spend with someone when there’s this whole list of things to do.

You’ve been consumed with checking all the boxes and it’s hard because empathy requires listening and reflection, which means you have to pause and think about; what do I see here in front of me, what’s the story I’m hearing, what behind what they’re saying. That takes a moment, and when you’re rushed it’s really hard to do that.

Appeal to policymakers?

The cost of care needs to be more transparent, more predictable, and more reasonable. There is nothing like the fear of not being able to afford what you need, or going bankrupt. The next thing is the availability of information. My information about me is mine. Right now information is so silos, it’s so dependent on the platform, i.e electronic record, the setting. It’s very difficult to share that information amongst settings.

As a patient I want to have access to all the information there is about me, I’ll pick and choose what’s important and what’s not. But, I want to be able to have access. I also think that the way healthcare is set up is by episode and diagnosis. An episode is a snapshot, it’s a moment in time. A diagnosis is a label about some aspect of my dis-health. I think policymakers should focus on longitudinal care over time, thinking about me a person, rather than a diagnosis”.

Advice to clinicians that are new to the healthcare environment?

It would be good for people who go into the healthcare profession to spend a day in the shoes of people who are living in the setting they are in. If they’re a patient, spend the day in bed. When I was a young nurse I went to the Rusk Institute in New York City to learn about physical rehabilitation; I spent the day in a wheelchair.
That was a transformative experience, gaining some lived experience, I think that would be one thing. I would encourage networking as a young clinician. Finding people who care about the patients in this manner. Finding out who they are and then meeting with them regularly to share what works and what doesn’t. Having that support system outside of the work environment I think is important.

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