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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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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.
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
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
Kara Beck @karabear_rny Instagram
Books on Alzheimer’s by Ryan Williams
Andrew Schorr Patient Power
Nuggets from the Mine
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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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.
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.
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.
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.
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.
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.
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.
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. Contact NAMI (National Association for Mental Illness) chapters or other nonprofit organizations. Make yourself available. If this is something you want to do, then create a PowerPoint. I have a PowerPoint presentation I probably used at least a hundred times. And I would also tell them that choosing to advocate is rewarding. And I’m so glad I’ve done it over the years.
I report for two places I consider the most. They have high credibility when it comes to cancers, which is patient power, an online resource patientpower.info, and the patient’s story. And that is also online. I know they’re very credible because I followed them. I’ve tested them. And the people who started them are also broadcast journalists and were trained to be credible, and at least we were, in telling the truth about things. But also, they do this very compassionately. I’ve been blessed to do this with them, with each of them, and for people with CLL Chronic Lymphocytic Leukemia. The CLL Society is an excellent resource as well. And that is leukemia that I live with. And they’re both very good as well as there are support groups online. You must test and see which one is for you. But when online, social media, for instance, for CLL patients, there’s one called the CLL Support Group. Easy to use, very intuitive. And also, I’ve started a woman’s community. And it’s called we have one for virtual meetings called CLL Women Strong. The community that’s on top of that we started is called Kicking Cancer in Heels. And we found that there are similarities between women, how they feel in their lives, and how they’re changed with any cancer diagnosis. And we, it’s about living like in quotes with cancer and living your best life with cancer. So, it’s everything around your cancer other than we certainly talk about it, but it’s like everything else that happens to you. And we have specialists on about that. We have frank conversations.
I would tell them to check depending on what they want to advocate for primarily. Many of us have comorbidities as I do, but I primarily do my public policy volunteer work with the Multiple Sclerosis Society, the National MS Society. So, if it’s another person with MS, I tell them go to the MS Society website. There’s an advocacy section and even just something as simple as getting started to receive the email updates, and they’ll send you an email when there’s information or a legislative bill that they’re trying to get, gather support for, and you can just fill out your support with the click of a couple of buttons. You don’t have to go to the State House and testify to be an advocate. You can do it from your couch or from your bed, or from your hospital room. And that, for me, is fantastic, and most organizations have something like that now. So, I recommend going to your main organization and at least signing up for those emails or checking out what resources they have. Of course, Healthe Voices is a fabulous resource. I always recommend they have years of data and information. So the Healthevoices.com. And you can view past conferences as well as this conference that we are currently at, which is very exciting.
Probably within their own like community, other people who have been advocating I, that’s what I do. I watch other people who are advocating and take notes, I say, I like what they’re doing, or I see them having success with something. And so, if a new advocate would to ask, I would say Watch other people that you admire and try to do something similar or spin it for your own advocacy. You can always spin it and tailor it to what you are advocating for if you like what someone else is doing.
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So, the first thing that I found when I was researching was NAMI, the National Alliance of Mental Illness. And I honestly feel like that’s a really good place to start because there’s a lot of information about mental illness that people don’t know about. And a lot of people don’t even know that there’s probably a NAMI in your city that you can go to and find more resources. So that was one of the first times I felt like I was getting somewhere. So, I feel like I would tell a new advocate, like start there. It’s important to research.
To other advocates? Just so that they don’t feel like they’re added by themselves. Because when you’re first new at something, you often can feel isolated, or you may not quite belong. So, I like to point them to other advocates within the realm that I’m advocating, which is the diabetes sector. So my platform is Instagram and also, and I’ve been on many different podcasts, and interviews. I’m also a registered dietician, so I write articles in a sense of reporters reach out to me. I give them the information and write articles to get it. And what’s your Instagram handle? @ladielex.
I would honestly just try and point them to influencers, not in the same space as them, that are doing something big and significant. So, like following Mr. Beast or other big YouTubers and seeing what they do. And then, research how they do what they do, and then apply that to your own specific category that you want to focus on. So, if your category is rheumatoid arthritis, that’s cool, but you should see what is working for other people potentially, and then see if that inspires you to make content that would then resonate with those with rheumatoid arthritis. My platform of choice right now is Facebook groups. I absolutely love Facebook groups. I think they’re such an important tool to let anybody ask questions. It’s not a one-way street; it’s a two-way street for information. So, I run the Alzheimer’s and Dementia Support group on Facebook. I think it’s like the second or third largest, with 30,000 members. And so, you can join that. You can see how the group is run. It’s very hands-off. I hardly do anything on that group. I just help make sure it’s a safe place for communication to take place. And I let everybody else ask whatever questions they need.
I have a website, patientpower.info. Helps, and I recommend some others. What I try to do also is help them identify who the providers that are knowledgeable in what they have are. Because a key source, obviously, for health information for people is a knowledgeable healthcare team. Because you want to get well, you need treatment. Now there are lots of other issues. Affordability, living with quality of life, side effect management, a million things. But first, I try to help people identify who the doctors primarily, who are leaders for what they’ve got are, and ideally to connect with them even as a second opinion. So even if you live in a very rural area, remote area, can somehow you be in contact with the leaders for what you have so that your treatment plan, your diagnosis is accurate, and your treatment plan is on track with hopefully state-of-the-art medicine? Then the next step, of course, is affordability, which is a big thing now related to treatment is what are the resources to help you depending upon your personal financial situation. Are there foundations? Is there an advocacy group? if you’re in the clinical trial, is there assistance to be in the clinical trial? So, it varies, but I think it starts with who’s knowledgeable in treating you or advising your doctor on what treatment you should have.
When it’s tech, I don’t understand I go to my kids.
Rachel Star Withers
I always say start with what you know If you’re good at writing blogging, writing books might be something that’s good for you. If you’re like just good at speaking and connecting with people, maybe you want to volunteer work and go to like different centers. If you’re someone who’s already, always on TikTok Instagram and you’re good with tech stuff and video might be your option. Too many people try and dive into the deep end and they get overwhelmed. Just trying to cover all the bases. Just start with what you know and branch out. Thank you.
Fun, eh? I love the passion and diversity of people with lived experience. I especially liked Ryan’s outside-your-bubble response to find good examples of advocacy in arenas in which you are unfamiliar. I resonate with Brooke’s comment about showing newbies how to research. Bethany’s suggestion about creating a PowerPoint for yourself worked for me. I have evolving resources as I keep clarifying what I’m about and what I offer. I think mission statement. Mine is learn with people on the journey toward best health. I appreciate that people offer themselves as resources. I often talk with newbies about trust – how to create trust in yourself. I mention creating, documenting, and feeding your network. Feeding a network means responding when asked to help and replying in social media. People are more likely to respond to you if you’ve responded to them. I introduce people to PCORI and the Society for Participatory Medicine. Howard’s statement, when it’s tech I go to my kids is spot on. For me, it’s my grandkids.
Nuggets from the mine
I recommend following Knowledge for Caregivers podcast, practical tips from Kathy, a geriatric nurse, on how to help your aged loved one. Practical tips that I use with my own family to help navigate the caregiving role. Ten to fifteen minutes episodes range from activities of daily living (dental, showering, cooking, home modifications, driving), assisted living, power of attorney, conflict, pain management, case managers, and medical marijuana. Quite a broad spectrum. Practical, practical, practical. Check it out.
I host write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation, and we both create video trailers. Joey van Leeuwen supplies musical support, especially for the podcast intro and out. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com and my YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block