From Surviving Cancer (twice) to Building Coalitions featuring Rachel Westlake
Rachel Westlake was a teenage kid with long, curly, red hair when she was diagnosed with large cell lymphoma at the age of 15. During more than a year of experimental treatment protocols, Rachel began to understand her own mortality, something none of her peers had any concerns about whatsoever. She beat the cancer and learned the importance of self-advocacy along the way. In 2015, she received another cancer diagnosis while living in a “healthcare desert.” Using her acquired self-advocacy skills, Rachel called on her old oncology team in NY. She got them on board, underwent a stem cell transplant, and beat cancer for the second time.
Today, Rachel is a dedicated health care advocate focused on creating compassionate, personalized, and inclusive care systems. As a self-advocacy expert and educator, she assists organizations in implementing patient-centered strategies to enhance care outcomes and foster collaborative cultures. She’s also an instrumental force behind CHCAO, the Coalition of Healthcare Advocacy Organizations.
Listen in as Rachel walks listeners through her highly personal medical and emotional journey that includes beating cancer twice and confronting the death of her father by suicide. Rachel’s life experiences gave her the courage and strength to identify others who needed help, and she was inspired to help as many as possible. Rachel discovered the profession of healthcare advocacy and dove in, realizing the impact she could have as a BCPA.
Through Rachel Westlake Consulting, LLC (RWC), she specializes in self-advocacy education, connecting patients, healthcare professionals, and industry stakeholders. Her background in coalition leadership, startup strategy, product development, and research informs her balanced, partnership-driven approach to addressing patient and healthcare community needs.
Transcript:
Host
Rachel Westlake. Thank you so much for being on the patient advocacy now podcast. Uh, Rachel, you have, uh, a pretty intense and amazing story of how you entered this world. And, uh, for those people who aren't familiar with you, who are hearing your name for the first time, I was wondering if you would kind of grace us with, you know, taking us back to when you were younger and kind of got into this, you know, kind of were forced into this space, if you will.
Rachel Westlake
Yeah, sure. Thanks for having me, John. I'm happy to be here and talk with you today. So my origin story into patient and healthcare advocacy definitely starts with an early cancer diagnosis when I was 15 years old. I was diagnosed with large cell lymphoma and went through a...
a 13 month experimental protocol clinical trial that was pretty intensive. I was in treatment every other week and sick the majority of the time. Obviously, this is a very challenging time of life to get sick as a early teen adolescent. And I learned a lot during that experience.
Host
And when you, if I could just clarify one thing for Mike, cause I don't know much about the treatment. When you say in treatment every other week, is that an inpatient hospital stay? Is it like a four hour chemo regimen? Like, what does that look like?
Rachel Westlake
Mm -hmm.
Rachel Westlake
It was in this protocol, it rotated. So every other treatment was inpatient and every other treatment was outpatient and those rotated. And then in between there was a lot of oral medicine that was impactful. Also.
Host
And were you just not able to go to school at all? Like, what did your life look like during those 13 months?
Rachel Westlake
Yeah, I did go to school. I stayed in school. I was somewhat part -time and my community was pretty supportive and the teachers in my high school were really supportive. So I had a couple teachers who actually would come to my home and I had my math teacher live nearby and she was willing to come and do lessons at home.
Host
Mm -hmm.
Rachel Westlake
Um, my French teacher, it was pretty amazing. Yeah.
Host
Wow. It's unfortunate to have some great teachers there. It sounds like not to get too sidetracked. I just wanted to kind of, I like painting the picture for myself of what it looks like. I mean, 15, 15 years old, I was like the most irresponsible person I ever met. So it's like, here you are thrusted with this. So, so continue on, on what it was like in the, in the hospital and the medical system.
Rachel Westlake
Yes, very privileged and very lucky. Yeah.
Rachel Westlake
Thank you.
Rachel Westlake
Um
Well, it took some learning. At first when I was diagnosed, I was a 15 -year -old kid with long curly red hair, and I was sad to lose my hair and sad to not run cross country and worried about how this would impact my social life. And then I grew up real fast, unfortunately.
And one of the ways that I grew up very quickly was to learn as much as I loved my team. And I also got very lucky and was very privileged with my team of healthcare supporters, my oncologist, my nurse. I'm still close with them, my pediatric oncologist and nurse. But in the hospital, things could go wrong. And I used to sleep with a beanie over my head.
Host
in the office.
Rachel Westlake
to block out noise and sound and light and keep my bald head warm. But I started sleeping with like one ear open because there were a lot of times when things went wrong and things went into my IV that weren't supposed to. And so I started to, as a young person, be a very strong self advocate and ask and understand what was happening with my care every step of the way.
Host
And how, how often would you say you caught mistakes or had to kind of, kind of reconfirm things?
Rachel Westlake
Um, not too many times, but the times that things went wrong and I didn't catch them were really, um, challenging. Um, and it was just, you know,
I don't want to say that there were huge mistakes and I necessarily saved my own life, but I definitely protected myself from having a couple of medications that didn't work well in my system. And, you know, was very active in learning how all of the contraptions in my room worked and things like that.
Host
So you're 15, you have over a year of, you know, your own version of a medical school kind of going into this world, at least in the oncology department. What did you find out about yourself other than, you know, you've learned how to be your own self advocate. Did you start kind of look, you know, looking into doing this for other people or what, you know, how did this kind of blossom into something else?
Rachel Westlake
You
Rachel Westlake
Yeah, I did have a moment when I was, I've always liked biology and my science classes and ended up going to school for for anthropology. But I was very interested in biology and was in higher level biology classes and just very curious about the science of what was happening and what was happening inside my body and that natural.
curiosity and part of my personality probably supported my ability to self -advocate, my curiosity and willingness to stay engaged with my care. So I think there was a lot of a confluence of things that sort of made that possible for me, including my privilege, my access to care, where I lived, who I was, what I looked like.
Host
Thank you.
Rachel Westlake
But I did consider all of that, but I also wanted to get away from it. I didn't, you know, when I was done, I wanted to go back to being a kid. But I, you can't really unlearn that. And I never quite felt aligned with my peers after that, to be honest. I had a sense of my own mortality that wasn't common in people my age.
Host
Thank you.
Host
And there was another incident that kind of opened up, you not just on a biological level, but a psychological level with your father. What happened there?
Rachel Westlake
Mm hmm. Yeah. Yeah. In 2011, my dad died by suicide. And between, so I was diagnosed for the first time in 1995 and between 1995 and 2010, 2011, I sort of was fumbling my way through finding my own purpose like many people are at that age or, you know, what I wanted to do with myself. But I was also struggling as a result of the
the many complications that arise from being a young person with cancer, being medical and emotional mental health stuff for myself, dealing with that early mortality awareness and where to put that in my world. And when my dad died, I still didn't know what to do about it, but I knew that the system wasn't set up to support and identify.
when people needed help. And that...
that I wanted to somehow help with that.
Host
So where did that journey start taking you?
Rachel Westlake
I started to work with a little bit even before my dad died, I was called upon by friends and family and then friends of friends and things like that with questions about how to navigate care or how to talk to doctors or things like that because folks knew I had personal experience, but then I started helping other people and then they knew I had experience helping other people.
So I continued to do that. And there were a couple of moments like helping a friend who had been in an accident and in a coma, helping him and his family communicate with doctors in the hospital. And I was just like, I love this stuff. For some reason, I'm comfortable in this zone. Well, I'm comfortable in this zone because I grew up in this zone. But I didn't know quite what to do with that or if that was a thing yet.
Host
Thank you.
Host
So how did you, how did you discover that it actually was a thing? How did, what was that process like? Cause a lot of people listening are in that discovery phase too, thinking of becoming advocates, even with medical backgrounds.
Rachel Westlake
I started digging.
Right. Yeah. Yeah. I started digging around and I found, you know, some of the organizations that exist now had newsletters that, you know, support independent professional patient and healthcare advocates. And I got on some, some newsletters. And so I started to understand what was out there as the profession was developing, starting around 2013 and just keeping an eye on it. And,
continuing to do a lot of other things for work in my life, but always on the side, providing a lot of educational, mostly materials for people as they navigate at their own care.
Host
One of the educational materials that you came up with is actually kind of close to my heart. My wife's a therapist. I see couples myself. It's how to choose a therapist. Is that right? So what was the impetus behind that? Why did you decide to make a guide like that?
Rachel Westlake
Yeah, yeah.
Rachel Westlake
Someone actually reached out to me who was concerned about another friend who was struggling with depression and didn't know how to support them in finding care. And I said at that point I had been writing some...
Host
No.
Rachel Westlake
some different guidance materials and I at that point said, well, I've wanted to write on this anyway. This is something that a lot of people that I know need. And I've done it for a couple other people and feel like I have a little bit of a way to approach that, at least one way to approach that. So I'll write that up and you can change the words and make it so it's digestible for that person because I wasn't directly, you know, no.
the person who needed it wasn't asking me directly. And so my friend knew that person better and how to not make that a, put that on the person instruction or like as an instruction. And so I was just like, just take this general information and use it how it works for you.
Host
Right.
Host
Yeah. And then it has kind of a broader appeal by nature because you don't even know who you're really necessarily writing it for. That's so interesting. Okay. So help me with the timeline. So 2010, 11 was when your dad passed you. You mentioned that you were already helping people maybe even before. And so is that when kind of the journey and getting on the newsletters kind of started happening and you started realizing maybe this is the thing and maybe, or did it take some more time?
Rachel Westlake
Mm -hmm.
Rachel Westlake
Yeah. Yeah, it was around 2008 when I went to my friend who was in a coma's bedside and just realized that everyone had different plans for him. And he was having a hard time communicating and what felt very necessary was to help him communicate what he wanted.
And that's when, and there were all of these relationship dynamics, you know, extended families, lots of different parents and doctors that weren't communicating very directly or personally. And so that's when I was like, oh, this is a very complex scene that requires a lot of different skills. And I think that I have some of them and I actually really liked helping make that situation better.
Host
So is that when you started working as an advocate kind of around 2008?
Rachel Westlake
It's when I started to do more work and started to build those like materials and started to offer guidance for folks or resource lists, or I've looked up these three providers in your area and you might want to have a call with them and ask them these four questions, things like that.
Host
And so 2008, 2010, 11 things are going well. Was it smooth sailing from there?
Rachel Westlake
Mm -hmm.
No, you know it wasn't. Yeah, right. No, unfortunately, yes, in 2015, I got sick again. So there was a 20 year gap between cancer diagnoses, but I did get sick again with cancer. I was diagnosed with DLBCL, presented in a very different way.
Host
I kind of have a cheat sheet of a few dates before before we spoke so. 2015 you got sick again.
Rachel Westlake
It was in the bone marrow of both of my legs. My initial cancer was a soft tumor wrapped around my spinal cord, about the size of a grapefruit. When I was diagnosed in 2015, I was diagnosed locally in a healthcare desert. And the oncologist who delivered my diagnosis almost didn't.
even deliver my diagnosis. It was an amazing, probably still the most profoundly amazing.
Rachel Westlake
strange healthcare interaction I've ever had. He skipped, you have cancer, we think it's this kind too. So the cancer is in the bone marrow of both of your legs. And yeah, it was pretty amazing. It was pretty amazing, pretty awful. I quickly got my old team in New York back on board and had all of...
Host
Wow, talk about bearing the lead. Wow.
Rachel Westlake
my scans and information sent to the people who had treated me when I was young. And this
Host
This was the oncologist and the nurse that you kind of stayed in touch with from 1995.
Rachel Westlake
Mm -hmm. Yeah. I quickly got my information because I realized that, I mean, I had to ask for specific scans from the oncologist who diagnosed me. And I realized I needed more help and probably wasn't going to with this complex case, especially with the 20 -year gap and who knows what was going on.
with the pathology get more support. And I didn't know where I wanted that support, but I wanted other eyes on the situation.
Host
And so what was that? What, what, what did life become in 2015? Was it another 13 month long kind of battle? Was it a different regimen? What did it look like?
Rachel Westlake
It was a different regimen. It was definitely different. There are a lot more and better side effect medications in 2015 than there were in 1995, but I also had a little bit of a, it was just a different protocol in general. So there were some of the same and some different medications.
And it also included a stem cell transplant. So in 2015, one of the things that I was 35, and one of the things that young adults diagnosed with cancer have to meet is this fertility issue, especially if they're going to go through a stem cell transplant, high dose chemotherapy and things like that. So the front end of that treatment was, thankfully, I had professionals who talked to me about that. And there are so many.
adolescent and young adult people who don't have that addressed early on in their care. But we had to address all of those things. And then I had about an eight month protocol stem cell transplant recovery.
Host
Wow. So when did you kind of, did that turn you off of advocacy for a little while in the hospital space? And you're like, I just need a break after that. I mean, it seems like it might be a reasonable.
Rachel Westlake
I mean, I think for a second I just...
Rachel Westlake
I, from a like philosophical and spiritual perspective, it was a very different experience than when I was young in the sense that I really started to think about what I wanted to do and what I wanted to change. And not that I wanted to be released from the pressures of life, but that I wanted to find my...
flow in life and what would make me feel like I was enjoying this opportunity and giving back because so many people had helped me so much and find what inspired me. And I turned definitely, you know, always in the back of my head was, can I be a patient or healthcare advocate? Is it time? Am I ready? And when I first got back,
Host
Thank you.
Rachel Westlake
because I moved, I went back to the original place where I was treated and then returned to California where I live now. And I took some time. I worked at a law firm and doing some social work and various things while I sort of got my footing over a couple of years. And then finally,
started to put together a portfolio of all of the work I had done for free for at that point, you know, 12 or 13 years or something. So that I could enter into at least some local organization or field or profession that was related to that free volunteer work I had been doing for so long and not necessarily just perpetuate this other career track but start to sort of like bring them together.
Host
And then in 2020, that's when you started your own private practice. Is that correct?
Rachel Westlake
Yes, yeah. Around 2019, I started to prepare and consider the BCPA. I was really, really excited that the certification had been formed. I wanted that credential not only for the letters and a little bit of credibility, but also to do like a self -check. I wanted to make sure that I was qualified to serve people in this way.
and had at least the general knowledge to be able to do that.
Host
How, you know, I, I've, we've talked about the BCPA, uh, the certification on the podcast and I don't think I've ever asked, you know, how much time do you think someone with little to no knowledge of the medical system, how much time would it take them to kind of get up to speed to be able to take the test and get certified? Do you have any idea?
Rachel Westlake
I don't know if I'm the best person to ask or answer that question. But I think with studying the materials, and there's so many helpful resources now and people who are studying together and things like that, I think if you were dedicated, you could within six months or a year, I think there's too many factors to really say. I think there's too many variables.
Host
Yeah, your background and how, you know, for sure.
Rachel Westlake
I think it's going to be different for everyone what kind of education you had an opportunity to have or didn't have. If you're a good test taker, if you know other people who are doing the work. So thankfully there are good resources on the packboard .org website and good ways to learn more about the certification and people. Okay.
Host
Didn't mean to put you on the spot. I just thought, you know, as someone who took the test, you know, how hard was it and all that stuff for people to encourage them.
Rachel Westlake
Oh yeah, for me it was actually kind of hard and mostly it was hard in the insurance and billing end of things. That was stuff that I always outsourced mostly in my own life for people that I cared about and for my clients when I opened my practice too. I am not an insurance and billing specialist. And so that was a hard part for me.
Host
Mm -hmm.
Host
Right.
Yeah, you just have to have a general enough knowledge to be able to point them in the right direction. Makes sense. So tell me about the kind of work you did when you started and kind of how it led to the kind of work you do now.
Rachel Westlake
Yeah.
Rachel Westlake
Sure. When I started, I was a generalist. I worked mostly locally. A lot of seniors and elders sought out support. And like many independent advocates, I got a lot of social work calls. I always provided free consultations and would do everything that I could if someone couldn't hire me to help find them.
someone who could help or the resources that could help them along the way. I think that independent patient and healthcare advocates as a whole are very dedicated to doing that. And I love that about our community. So I got those kinds of calls, but I worked with a lot of older folks here. Interestingly, there were a lot of neurodegenerative issues in my area. I'm not going to say that that is like a...
That was just what happened in my practice. I don't have the data to support that that's a huge issue around here But I can say that because I live in a healthcare desert in a rural community with limited healthcare access that it was really hard to support folks and getting the care they need when when I'm in very northern, California in
Host
What area of California are you in?
Rachel Westlake
the coastal area of Humboldt County. So in between just a little bit south of the Oregon border. And at the time when I opened my practice, there were no independent advocates around for about 200 miles, I think I'm at. Yeah, radius.
Host
Oh, gotcha.
Host
Yeah, not so much.
Host
Wow. Wow.
Host
So continue, go on, tell me more about, you know, the, the type of work and, and where, and where it led you, you know, to where you are now.
Rachel Westlake
So yeah.
Rachel Westlake
Okay. So I worked as a generalist and then after a little bit, I realized that I really wanted to work with adolescent young adult cancer survivors, primarily young adult cancer survivors who were navigating all of the changes that people go through when they're young adults, in addition to the fact that they just survived.
Rachel Westlake
or got through a very difficult diagnosis or cancer treatment. So I had folks who I'd work with who mostly wanted to understand the resources available to them, but were also just meeting all of these challenges of being a young person in transition. And I really enjoyed providing primarily.
Rachel Westlake
self -advocacy education to them or resource support and providing this concept of being a care anchor, I called it, where they would go out and do their own self -advocacy. And sometimes I would support them or attend an appointment, but for the most part, we were coaching them through that. And that felt incredibly fundamental. Not only are those skills transferable, self -advocating is really important. It's...
It helps you build skills that you need in so many different aspects of your life. And these young people hopefully have a long life ahead of them. And I won't be able to support them through all of their health care navigation. So helping them build skills and finding the care team members that they wanted or having the fertility conversation that they needed to have before they started treatment was really important. And I learned.
I learned a lot about that through one of the first people that I helped, even before I started my practice, who was someone who was a young adult who was diagnosed with myeloid leukemia and died. And one of the things that was just incredibly impactful was that they did not at her center talk to her about fertility.
they rushed her into care. So just learning about what people's values are as they're diagnosed as a young person and how they can have patient agency, have agency in what they do. So I worked with them for a little while. I found my way through this amazing network of adolescent and young adult nonprofit organizations and these amazing clinical groups and people who supported this.
this great community that I didn't know was out there when I was sick and really, really grew during the pandemic, like a lot of peer support and sort of online support for people in rare disease and disease specific niche communities. So yeah, I did that for a while and realized that those folks for the most part,
Rachel Westlake
couldn't pay me and it didn't feel right to to charge them. Some could, but I wanted to reach more people and I got really excited to help grow the profession. And so I worked with a lot of the leaders in this industry to help form the coalition of healthcare advocacy organizations at that time and redirected some of my energy into that work.
I also started advising and supporting nonprofit and AI startup organizations that were working to create patient -centered tools. And so I was doing a lot of that. And then just recently started to kind of rebrand. I renamed my organization Rachel Wesley Consulting. And now I work mostly with groups. And I...
do self -advocacy education for patient groups, but also for medical professionals and healthcare professionals.
Host
Tell me about that, say more about what it's like to work with medical professionals. What are you teaching them? What kind of tools are you giving them? You know, we often hear about the patient centered side of things where we're like you with your young adults who were cancer survivors teaching them self -advocacy. What are you trying to install or instill in the medical professionals?
Rachel Westlake
Yeah, so by working with medical professionals, mostly in educational settings, my favorite service right now is, and one that I'm continuing to build, is to bring sort of a very robust data -driven, evidence -backed,
presentation into nursing and pre -med classrooms to teach people about what hasn't worked in terms of patient -centered care, what's missing in the literature, and what's needed, which is, I would say, for medical professionals and health care professionals to make room for the self -educating or the self -advocating patient.
We can teach people how to self advocate and build the confidence to self advocate. Because primarily it's meeting this invisible hierarchy of the medical system.
Host
What do you mean by making space? Why isn't there space for it now?
Rachel Westlake
Right, so it's very easy to be deemed a difficult patient when you ask a question. And patient agency and a self -advocating patient doesn't necessarily look one way.
It's not clean and tidy. It's people engaging in their care, however they know how. I very much, one of the pillars of my work is agency before literacy. And I really believe that an active patient could become a more health literate patient, but health literacy is a little bit of a pie in the sky sustainability kind of concept where we're always working to achieve it. The, the, um,
goalposts are always moving and there's always more to learn. So if a patient is engaged truly and an agent of their care, they need to be received by the medical professionals that they work with as someone trying to engage their care rather than branded as a difficult patient or someone who isn't...
an easy case. So I try to...
Host
Right. Or someone even non -compliant, for example.
Rachel Westlake
Yes, and non -compliant, I work with young adults with intellectual disabilities and the risks for advocating for oneself depending on the population that you're a part of or how you look or how you're perceived or who has legal guardianship over you varies. And sometimes it's very, very risky. So if you're non -compliant, that can mean a lot.
to different groups of people who try to self advocate for themselves. So what I'm trying to convey and help people who are in training to be medical professionals learn is this is gonna look a lot of different ways. And these are some of the ways that you can make room for it and also work with them on kind of the, what are the small changes that you can do right now? And they think about that.
Host
No.
Rachel Westlake
And then we have a patient panel that comes after the presentation. And the patient group are my partners. So in my recent project, they're young adults with intellectual disabilities, a service provider, and a parent. And they're also in this nursing classroom. And they're going to teach the nursing students.
what it's like when they self -advocate and what some of the barriers to self -advocacy are. That project is really special because it was not in this case funded by the educational institution who gets to receive this amazing education, but it was actually funded by RISE, which is a client leadership group at my local regional center. So they're just an amazing
organization and client group that's working really hard to make sure that adults with intellectual and developmental disabilities have access to what they need and the services that they need in this area.
Host
And I mean, it sounds like correct me if I'm wrong. It sounds like a lot of what is probably taught as a version of patients or compassion with, with, with patients who are, um, trying to self advocate. Am I wrong? Am I off base there? Patience and compassion. Like if you're, if your patient is asking all these questions to take an extra 30 seconds as the nurse or the doctor to go.
Rachel Westlake
Compassion?
Rachel Westlake
Oh yes!
Host
Yes, you're correct. This is what this is. I mean, is that what a lot of it is in terms of educating the medical professionals?
Rachel Westlake
A lot of it is, I think a lot of it is very much that. And I think it's, it is indeed simply that. And because these are academics learning a skill in a system that is data backed and.
Rachel Westlake
structured in such a way, I also really inform through a evidence -backed literature -supported lens so that I can show how in what's happening right now, what's missing, and teach some of the fundamental reasons why some of those basic things like what you just said, like compassion and caring, active listening,
not doing motivational interviewing that's one -sided, but rather actually engage with someone about how you're talking through what's important to them and their values, rather than doing patronizing sort of engagement with patients.
Host
Yeah. And I, is there, I think, you know, I have some friends who are doctors and there's a lot of pressure on them to see so many patients every hour and kind of get through their rotations. And there's this weird balancing act of being patient centered while also kind of, for lack of a better term, meeting the quota of what they have to do for the hospital as, as a, as a professional doctor on, you know, on payroll.
Rachel Westlake
Indeed. There's a good body of, well, there was one really great review that I recently read about some of the paradoxes of patient -centered care, and there's that one. And there's also like empathy burnout and empathy fatigue. So what is it?
Host
therapists feel that pretty acutely where it's like psychotherapists feel that pretty acutely where like, you know, if you're seeing more than 25, 30 patients in a week or clients in a week as a psychotherapist where you're practicing lots of empathy, that's you, you, it's, it takes a toll. I can only imagine as a, as a medical professional where you're making life and death decisions and on your feet all the time to also hear the sad stories, how it would really kind of be a pretty heavy weight to carry.
Rachel Westlake
What did you say?
Rachel Westlake
Yeah.
Rachel Westlake
Yeah.
Rachel Westlake
Yeah, I mean, the system is not set up because of its pace to allow people to do this easily. And that's why I think, you know, and I get into this in my education sessions for both patients and medical professionals, the fundamental skills actually go a really long way, whether it's compassion or...
working through the fear of self advocating. So,
I think that some of the, a lot of the solutions in healthcare, whether they're about, you know, health literacy and really informing a patient as much as possible about what's going on for them, or, you know, these complex solutions, whether they're technology, which, you know, sometimes can be really helpful for medical professionals. Sometimes they just compound complexity on complexity.
So a lot of this education, while evidence and data backed is about these fundamental simple approaches to meeting some of those things, like I only have so much time. I can't just get burnout, you know, like it can't just be compassion. So we talk about some, some fundamentals and navigating those kinds of complexities through simple solutions rather than more.
more complex solutions on top of a complex system.
Host
Sounds like really interesting and important work and I am excited to hear more as time passes on how it progresses. I do want to shift gears and hear a little bit more about your involvement with Jakao and hear about the work that it's doing now. If you have some extra time, I know we're kind of coming up on time for you.
Rachel Westlake
Sure. Yeah. I'm happy to talk a little bit about CHCOW, which is the Coalition of Healthcare Advocacy Organizations, which is a coalition of a few leadership organizations. So Greater National Advocates, the Patient Advocacy Certification Board, the National Association of Healthcare Advocates, and Health Advocate X.
So those four organizations are members of Chacao and they have member representatives that come in and since 2020 have been in conversation with me about how we can create a cohesive profession, build awareness about the profession and support some of the larger...
Host
Thank you.
Rachel Westlake
high level projects that the profession needs so that it can sustain and grow.
Host
What do you mean by high level projects? Give me a couple examples.
Rachel Westlake
Yeah, so for example, one of the things that we've known for a really long time is that to build credibility and awareness, we needed data. We needed data about how professional advocates were part of.
I was about to keep talking and drinking at the same time. So we knew that we needed data about how advocates were working, as well as how successful and impactful that work was with their clients so that we could reflect that. So we ran the study, the impact of patient and health care advocates. We got a really great.
Host
Bit dangerous there.
Rachel Westlake
response rate of about 500 and pulled all of that together in an amazing white paper and created a social media campaign using some of that data. That's something that we're really proud of. We just announced Chick -House sort of formation in 2021 and to between 2021 and now do just that.
with a volunteer -based organization feels pretty amazing. But we've also worked on trying to collaborate with the Healthcare Advocates Summit, and we ran an education track at the Healthcare Advocates Summit. So advocates had a conference to...
go to and learn that and also so that they could network with other people who identify as advocates and the greater industry, which we felt like would really advance awareness around the profession and help us build relationships.
Host
So it's so if I'm hearing it right, it's the goal is to spread awareness about the profession, but also to have a bit of a cohesive structure on what exactly it is and to collaborate with the other organizations in the in the industry to make sure that you guys are somewhat on the same page. Is that right?
Rachel Westlake
Yeah, yeah, we work under something called shared voice. That is one of the kind of tenants of what we do. So the organizations involved try to make sure that we're thinking hard about what we are aligned in and speak from that place. So, you know, access.
raising awareness, building the profession, building the numbers, building the diversity of the profession and reach are things that we have shared values and shared voice around. We're working on some educational outreach and other ways to sort of get the word out and involve more advocates too. So that's around that.
Host
Amazing. Well, how can people support all the amazing work you're part of? What's something they can do to kind of help further the cause?
Rachel Westlake
Yeah, I'm going to have to look at my notes. But we recently did launch a fundraising opportunity. It's through Give Butter, which is a nonprofit fundraising platform. So it would be really, really helpful for us to be able to continue to do things like participate and partner for the Health Care Advocate Summit to get.
to get folks there and to continue some of the vital work, like around the data, the data work that we want to continue to do and bringing more advocates into this work. It would be really great to have folks donate even a little bit would be helpful. You can go to give butter pages, give butter and dot com backslash explore and then search for Chacao and Chacao is C H C A O.
And yeah, so that would be really, really helpful and we appreciate any support that you can give.
Host
Rachel Westlake, thank you so much for being here and sharing your story and your journey. And I know it's inspiring to me and inspiring to a lot of the listeners to hear the perseverance and the, uh, the Hills and the mountains you've kind of climbed over to help other people kind of dealing with similar struggles. Thank you so much.
Rachel Westlake
Well, thank you, John. Thanks for having me.
