Category

Advocate

Not one transition. Many.

By | Advocate, Caregiver, ePatient | No Comments

Alexis Snyder, a parent of a teenager with chronic complex health issues since birth, shares her journey. She speaks about accepting what is, helping her daughter prepare to manage the many transitions in medical care from infancy to adulthood, the challenges of a siloed medical system, and a fear of losing control of her daughter’s health as she let’s go of responsibility. Loving, determined, vulnerable. The third interview in a series on Young Adults with Complex Conditions Transitioning from Pediatric to Adults Medical Care. Read More

Three Young Adults. 22 Years.

By | Advocate, Caregiver, Podcasts, Uncategorized | No Comments

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold, primary physician,  autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More

Get along. Get it done. Governance

By | Advocate, Consumer, Leader | 3 Comments

If your team, organization, the project doesn’t seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how. Activists, professional people, community folks – anyone who’s part of a team knows the difference between a well-run team, an effective meeting, and the duds. Read More

Special edition for blog subscribers only

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader, Musician, Researcher | One Comment

Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing.  I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.

You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind.  I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time.  I’m amazed.

The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.

I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.

But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.

  • How do you like this transition and change I’m making?
  • Do you listen to the podcast? Read the show notes?
  • Do you still find the blog posts, show notes, written stuff valuable?
  • What do you think about the topics, the guests, the music, the quality of sound, the noise?
  • How about the length? It’s ranged from 20 to 68 minutes.
  • I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?

I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?

Talk to me, please. Email me at danny@health-hats.com!

And thank you for your loyalty.  Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!

 

State of Inclusion. Ame Sanders, Equity Warrior

By | Advocate, Consumer, ePatient | No Comments

It’s everywhere, it’s everywhere. I can’t help but see almost everything I do in my advocacy through the lens of health equity.  Whether it’s making decisions about our health and medical care, managing pain, young adults with complex medical issues transitioning from pediatric to adult medicine, men in caregiving, data sharing, patient access to data. Everywhere. I’m defining equity as people having the same opportunity to achieve best physical, mental and spiritual health no matter their social circumstances, biology, genetics, or physical environment. I wanted to take a look at bias, inclusion and equity from outside healthcare. So, I interviewed Ame Sanders and we talked about our own biases, inclusion or lack thereof in our communities, measuring bias, and taking action to reduce inequities.

Ame Sanders and I met at Seth Godin’s Podcasting Fellowship, 350 or so people from around the world learning to be podcasters. Ame caught my eye with her podcast, Equity Warriors, and her company www.stateofinclusion.com. See the show notes for further information. We decided to interview each other. You can hear Ame’s interview of me at the link above. Being a practical person, I look for what works and what we can learn from other people’s experiences.  While Ame doesn’t work in the health care space, she has much to teach us about the state of inclusion in communities. Read More

Equity: more to achieve the same

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Podcasts | No Comments

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More

First, We Listen

By | Advocate, Clinician, ePatient, Leader | No Comments

As a blogger, I talk. Every week, I talk. I talk about what I experience, what I think, and what I think I know. As my web/social media coach says, “You’re a content machine.” Now that I’ve started podcasting, I realize that I know enough to be dangerous. Podcasting is an opportunity for me to listen and learn. Listening has always been a challenge for me. Read More

Healthy Homes Advocacy

By | Advocate, Podcasts | No Comments

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Episode Summary

Something is wrong here.

I feel like crap.

This isn’t fair.

I don’t want anyone else to ever experience what my kid experienced.

At some point, when we feel strong enough or mad enough, we want to take action to improve health. This is advocacy. Many of us advocate for someone, sometime. Or we want to. Ourselves, our family members, our cronies, our community. What lessons can we learn from a master at advocacy? I interview Mary Sue Schottenfels, Director of ClearCorps Detroit, a seasoned community organizer, a master advocate.

The lessons I heard from Mary Sue were:

  • Don’t go it alone-join, network, and collaborate.
  • Keep your word, follow through.

Read More