Where do veteran advocates point people new to advocacy for skills, resources, and research? What are trusted resources? 15 interviews from Healthe Voices 22.
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Episode Notes
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Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)
Proem
Podcast intro 03:27
Sue Rericha 04:00
Sharnae Smith 04:33
Christine Von Raesfeld
Hetlena Johnson 05:48
Brooke Abbott 06:22
Bethany Yeiser 07:41
Michele Nadeem-Baker 08:59
Jenna Green 10:50
Kara Beck 12:15
A word from our sponsor, Abridge 12:47
Jasmin Pierre 13:30
Alexis Newman 14:02
Ryan Williams 14:43
Andrew Schorr 16:04
Howard Chang 17:45
Rachel Star Withers 17:48
Reflection 18:22
Nuggets from the mine 19:55
Podcast Outro 20:55
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Credits
Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Proem and Reflection music, Moe's Blues, played by the Joey van Leeuwen Band
Photo by Shane Rounce on Unsplash
Web and Social Media Coach Kayla Nelson @lifeoflesion
The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
Sponsored by Abridge
Inspired by and grateful to Estela Mata, Sharnae 'Nae" Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaiser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang, Rachel Star Withers
Links
Raw, unedited transcript of all responses to question #2
Healthe Voices website
Bethany Yeiser CURESZ (Comprehensive Understanding via Research and Education in Schizophrenia). Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery Paperback – July 10, 2014
Lupus Foundation of America
(LFA)
Hetlena Johnson's thelupusliar.com
@thejennagreen Instagram
Kara Beck @karabear_rny Instagram
Schizophernia medication TAAR1 agonist
NAMI (National Association for Mental Illness)
Books on Alzheimer's by Ryan Williams
patient's story
Chronic Lymphocytic Leukemia
The CLL Society
CLL Women Strong
Kicking Cancer in Heels
National MS Society
Andrew Schorr Patient Power
Nuggets from the Mine
Knowledge for Caregivers podcast
Related podcasts
https://health-hats.com/pod180/
https://health-hats.com/pod182/
About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this.
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The Show
Proem
Whenever I go to conferences, I prepare two questions to ask people I meet. I don’t always ask those questions, but I like having them in my pocket. It ties the event together; I learn something, and I listen more than I might have without. Adding the feature of recording more strongly connects me to the interviewees. So, a pleasure to interview twenty-six people in five-minute interviews, although challenging to produce.
Welcome to the third and final episodes created from the Healthe Voices 2022 Conference. I asked where do you point people new to advocacy for skills, resources, and research, to understand trusted sources better. See the previous question episodes in the show notes. People commonly responded with knowing yourself and your skills and not biting off more than you can chew. I include fifteen of the twenty-six responses to reduce redundancy. I asked the fourth question, have you heard of PCORI? As a Patient-Centered Outcomes Research Institute Board member, I wondered if anyone would include PCORI as a trusted source. I don’t include those responses as 22 of 26 had never heard of PCORI, and only two had any familiarity. Listen through the next fifteen minutes to hear my Nuggets from the Mine feature.
Podcast intro
Welcome to health hats, the podcast. I'm Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.
Sue Rericha
First, I probably want to find out why they got into advocacy. I'd encourage them to find a platform that they feel comfortable with. Don't bite off more than they can chew. It's easy to get overwhelmed. You want to do all the platforms, all the things. You want to do the politics and policies. The pharmaceutical side, the patient story side. Just pick what you're most comfortable with and just focus on that for a while.
Sharnae Smith
I usually point him to point them to the Lupus Foundation of America (LFA). It's because they're well known. They have more resources and connections than I do, so I usually make sure people get my contact information. You may just need somebody to talk to. You may not want to jump into meeting by reaching out to the LFA. You may just want somebody to be a friend. And so I give them my contact information.
Christine Von Raesfeld 04:53
Funny enough, I would point them to LinkedIn. Yeah. And that's because I started out doing a lot of stuff on social media. Facebook was. I started doing Facebook Lives before Facebook Live was a real thing. But I found a lot of negativities, a lot of misinformation, disinformation, and all that stuff over time. And I find that LinkedIn is a good resource for me. These specific things, looking at what companies are working on and actual real facts, right? Are there, and so I tend to tell people, look, if you want to get into advocacy, you have to be on LinkedIn, not social media, but LinkedIn. And find out what these companies are working on, find out what's out there in the future, and just gear your thoughts towards what's there and the potential.
Hetlena Johnson
First, I would point them to, of course, I'm going to say me. My website, thelupusliar.com. The other main thing I would point them to is not to be reluctant to ask their medical provider or medical partner team for information. Don't hesitate because they don't know what you need unless you ask.
Brooke Abbott
Usually at other advocates. Also, I'm big on facts and myth-busting. And as a historian who does research, I will sit with someone and show them how to research something properly. And how to find the foundation on which they want to advocate. I think it's essential because when you first start advocating or when you first get diagnosed, and then you decide you want to advocate or you're a caregiver who wants to advocate, you just want to help, or you just want to find the information yourself. Usually, your advocacy comes from wanting to know how to help yourself. So, I try to help them, and this might sound like a little bit like branding, but I try to help them find their foundation and their platform. What exactly do they want to do? And it could be broad, but they must figure that out first. And then, they can go and find all the resources they need, research the information, and decide if they want to be someone who gives people social tips. Suppose they want to give people information on research and development or legislative recommendations. Like you must know what your lane is. And refine that day-to-day.
Bethany Yeiser
I love learning more about new clinical trials. Medications are coming out. One is called a TAAR1 agonist. To be specific, it's a different mechanism of action for antipsychotics. It's in clinical trials, and other brand-new medications are coming through. So, I think that's one of the most exciting advances in the schizophrenia field right now. But yeah, if I were to talk to a newbie advocate, I would tell them to share their story. Everybody has to choose if they want to keep it as something in the past or if they want to share it, and every person will make that choice. But as for the people who do want to share, I would encourage them to go for it. Contact your local university or your church, perhaps.
