My MG Sole Project

May 6, 2020 Janet Kennedy Comments Off

On Get Social Health. We’re talking about a project called My MG Sole. It’s a new collective art project designed specifically for people with Myasthenia Gravis, a rare autoimmune condition. The goal of the project is to help people in the MG community defy social distancing by uniting them as an online community in this time of intense social distancing. The separation of those with chronic illnesses like MG from their family, friends, and community who truly understand what they may be experiencing, can feel like extreme social isolation.

The project is sponsored by Argenx, Boston based biotechnology company. Developing treatments for severe autoimmune diseases. With me here today are Anneliese Hammerlund, an expressive arts therapist and mental health counselor from Grand Rapids, Michigan. Also joining the podcast is Susan Woolner. She is the neuroscience patient and caregiver support and community manager for Mercy Health Hauenstein Neurosciences, and now let’s find out more about My MG Sole on Get Social Health.

Announcer (01:10):

Welcome to Get Social Health. A conversation about social media and how it’s being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet Kennedy (01:36):

Welcome to the My MG Sole Project. This is such an exciting endeavor to support the MG community and I am thrilled to find out more about it. With me. Today is Annalise Hammerlund. She’s an expressive arts therapist and mental health counselor from grand Rapids, Michigan. She works with individuals and groups to process experiences through creative avenues such as art, dance, music, drama, play and writing. Also with me is my friend Susan Woolner. We are friends in the Mayo Clinic Social Media Network and she is heading up this project. Susan, tell everybody a little bit about yourself.

Susan Woolner (02:13):

I’m a neuroscience patient-support communicator for a neuroscience center in Michigan. but I’ve been serving on neuromuscular communities for the last 30 years and one of the things I love most about it is one that the people, there are so much expressive and creative people as part of that community. And this time, especially because many of them, because there is an immunocompromised portion of some of the community, but there’s also risk of breathing issues or other physical issues if they were to contract something like COVID-19, that is going on now.

Susan Woolner (02:53):

So the community is isolated, maybe isolated, as much or more than other communities. So this gave us a time to think how can we support the community with something that shows them the value and the fantastic energy that’s part of this community at a time when we can’t gather together. And so that’s why we thought of My MG Sole Project. Annalise, an expressive arts therapist. How do you go about designing a project like this?

Annalise Hammerlund (03:20):

What we want to reflect on is things that are accessible that hopefully everyone I could have some access to because as we’re all stuck in our homes, we know that sometimes it’s not easy to get out and get materials. And then something that is interesting and fun to explore and shoes are just full of so many great potential metaphors and avenues of exploration and things to talk about. It’s an item that we’re all at least familiar with. So it felt like a great way to start exploring something creative together at a distance.

Janet Kennedy (03:58):

What do you plan to do with these creative shoes once they’ve been done?

Susan Woolner (04:02):

Annalise made a great point about the shoes being a great metaphor. So you know, when you wear a pair of shoes, they kind of form to your feet and so your shoes are, are expressive to you, not to anybody else. So if anybody else were to stick their feet inside your shoe, they would not feel comfortable, not as comfortable as their own shoes. In addition to that, we choose shoes based on kind of what they look like, fit, the purpose, you know, so a sports shoe versus a boot versus a cleat. So those are all different for everybody. It allows them to choose something that’s specific to them in choosing one of their own shoes or choosing a new shoe that they have a blank canvas.

Susan Woolner (04:44):

And they did, they’re going to create on a blank canvas. What we’re going to do after this is, during the month of May, we’re using the internet and social media as a place to gather all of these expressive shoes that everybody’s created. So we’ll be using a hashtags, #MyMGSole, and hashtag #MoretomethanMG and posting them to Instagram or Facebook and gathering those along with an artist statement that, that each person will produce with that. So they’ll actually say why they’re there. Empty Sole represents them. What did they paint that represents them as a person represents their story with MG. So the idea is the left hand shoe would be their, their life and their story before MG and the right hand shoe would be their life and their story after being diagnosed with MG. Some of the things that are important before we have a chronic illness become really less important afterwards.

Susan Woolner (05:47):

And sometimes our friends change. Sometimes the fact that we have a chronic illness then just becomes more isolating. and our friends who are supporting us change. Sometimes our family that is supporting us change. And so those are the types of things we, we hope people will document, but any, in any event, we’d like them to do a shoe, that represents them and their inspiration about their MG story and who they are, inspiration to themselves.

Janet Kennedy (06:13):

It’s interesting that a lot of folks that have any kind of neuromuscular or chronic illness don’t look, and so there’s a, the metaphor of walk a mile in my shoes really is resonant here because so often we don’t know what’s going on on the inside with people. We don’t know what they’re thinking and what they’re feeling. They look okay. So this is a way for them to show through their shoe art really what’s going on inside and how they’re feeling. And I love the idea that, that this is the metaphor that you’re using.

Susan Woolner (06:49):

One of the things we see with MG is, and people talk about specifically this is extreme fatigue. So the fatigue is not fatigue. We think of, Oh, I tired. It’s, I can’t raise my hands above my head to put a shirt on or I can’t raise my hands to button my shirt or push up my glasses or chewing and eating. I’m swallowing. And sometimes a problem. So you could become tired in eating just because chewing it takes so much energy. So those are all things that go along with MG. And while every person with MG, they call it the “snowflake illness,” might be affected differently. Just like snowflakes are all different. They might be affected differently. We want to know how they’re affected and also what supports them. So not just the aspect of the disease of what they’re suffering with or they’re, they’re affected by, but really how that’s changed their life and really what also are the things that are exciting for them now.

Susan Woolner (07:51):

What are the things that they wish they did? What are the things that they thought were hard before and they don’t even think about. Now. An example of that is, you know, if I, if I had to travel, you know, three hours in a car, but now I don’t have to travel cause I get to work from home. Well that could be an advantage. Like I think all of us are, are seeing that as somewhat of an advantage now and also somewhat of a, not advantage, but I also think that those are the things that we hope that people capture.

Janet Kennedy (08:17):

The interesting thing about this project is that it is a solo expression of well, how you’re feeling and who you are now and who you were before, but you’re sharing it via community. How does community play into art expressiveness, Annalise? What do you see, as how people share, the work that they’ve done?

Annalise Hammerlund (08:40):

I think that art expression has been a part of human community since human communities were formed. As we look back in all of the historical records, there’s always some sort of artistic expression happening in every community. And right now we don’t have the ability to be in community physically. Like, maybe we’re used to, but we are really blessed to have all of these technological avenues to connect with one another. They’re not a perfect substitute for that physical community, but it’s the best thing that we have right now. And so I think any way that we can find two connect with other people right now is important and something that we need to be focusing on.

Susan Woolner (09:26):

I think community because what I’ve seen is support groups where you get with other people and you can share what you’re experiencing and there’s always support as community. Community by its very nature is supportive of people who are going through similar things. This is a way where we’re using art to essentially show how big this community is and the MG community is thought of as a rare disease. So, a very small illness community. My hope is that we’ll see this as hundreds, maybe thousands of shoes and show the value and in the size of this community and that everybody will feel supported as part of it. Not just people with MG, but maybe caregivers who are caring for somebody with MG. All of that’s important.

Annalise Hammerlund (10:13):

I think the size of communities and given the size of our global community is always really shocking. I’m a little bit of a math nerd on the inside and I like to think about the phrase one in a million. And if you are one in a million on this planet, there are at least 7,000 people exactly like you if you’re one in a million. Seven thousand is a lot of people, but one in a million feels really small. So it’s about the perspective that you’re taking

Janet Kennedy (10:43):

and a part of community is the sharing. So if you are currently active in the MG community, but you know other folks who aren’t, this is a great opportunity to engage with them, share your stories via art and bring them all together. I think that’s a really neat way for people to show I’m not alone and here are other people that are in the community.

Susan Woolner (11:06):

Exactly right.

Janet Kennedy (11:07):

The project is going to be going on in May. How will they find it?

Susan Woolner (11:12):

Well, they can visit my MG Sole, and be able to actually visit the website that actually walks them through this. There’ll be downloadable tools that they can choose that they can practice sign. if they want to do that. In fact, if they don’t want to use their own shoes and there aren’t shoes that are blank as their blank canvas, they can simply download one of the paper tools and create their shoe on that and actually share that.

Susan Woolner (11:39):

It doesn’t have to be a physical shoe if that’s something that people are comfortable with or they just don’t have that ability to be able to download this paper template and then listen to these interviews and the prompts. you can still do that in your own way. Even if you, I don’t want to follow the prompts that we’ve set out, that’s okay too. Simply download the paper template and create whatever art you want. For example, we had somebody who put dinosaurs, they actually were working on the project with their son and so dinosaurs are important to him and this was something that they did together. So then that was a great creative way to do it. While it didn’t tell his specific MG story, it really told the story of who he is now in working with his son and his wife was helping in that project as well.

Janet Kennedy (12:27):

A little off topic, but this reminds me so much of the Flat Stanley project.

Susan Woolner (12:36):

Yeah, I’ve done that for other people’s kids as well as my own. You know, it’s the kind of natural resource, you know, renewable resource that that teachers use.

Janet Kennedy (12:48):

Well and the interesting thing about Flat Stanley is he travels around, he gets passed from place to place and we’re talking about shoes and movement. And I think as people are sharing information, I hope they’re also sharing where they live so that you can actually show the growth of this community.

Susan Woolner (13:05):

Yeah, there’ll be a gallery and maybe one of the aspect of the gallery is being able to kind of see a map where everybody’s sharing from. That’d be great.

Janet Kennedy (13:14):

Annalise, if you want to give guidance to people, let’s, let’s go back to the expressive arts therapist concept here. A lot of times people are like, I don’t know how to express being tired. I don’t know how to express being sad. It isn’t just paint the shoe black, obviously, there are a lot of ways to do it, but maybe can you give some ideas to folks about how they might visualize some of these emotions?

Annalise Hammerlund (13:39):

Absolutely. One of the things that I like to encourage people to do is to just take a moment [inaudible] try to sit with that feeling, maybe close their eyes, take some deep breaths, notice where they might feel a feeling in their body. A lot of phrases that we use in the English language already have a lot of visual imagery built into them for the way that we described emotions. So the feeling of butterflies in your stomach or the weight of the world on your shoulders or getting news hit you like a ton of bricks.

Annalise Hammerlund (14:16):

All of those things are already visual imagery. So maybe the way that you describe your tiredness already has some visual imagery built into it. so that’s one of the things that I encourage people to do. And then also to think about, maybe does it have any particular colors or maybe there’s a quality of line for tired, maybe it’s bumpy or jaggedy or just flat, totally flat. So those are some of the things that we want to think about. And remember, there’s no wrong answer. My tired is different than your tired. My happy is different than your happy. Maybe for me, happy as blue and maybe for you, tired is blue and that’s not wrong. That’s just you and me being different and having different feelings and experiences.

Janet Kennedy (15:10):

I love that concept that, that this is a total personal expression of what you’re thinking and feeling and whatever you do, what it means to you.

Annalise Hammerlund (15:22):

I think for a lot of adults, especially getting involved in a creative process can feel really uncomfortable. Maybe you haven’t touched a paintbrush since elementary school and that is totally okay. We are not out here to create masterpieces. We are out here to show something of our own experience. That’s okay. Be gentle with yourself and remember that this is more about the process than the product. And any mistake is just an opportunity to explore your problem solving skills and how you respond to things when they don’t go as planned, which is how things often go in the real world.

Janet Kennedy (16:06):

That makes perfect sense. So Annalise since you’ve now had to kind of work virtually, how has that changed how you do expressive arts therapy?

Annalise Hammerlund (16:15):

Well, I haven’t really done a lot of virtual IT, but I did my master’s program virtually [inaudible]. so we started exploring a lot of these concepts years ago, before this started happening. One of the things that you have to be more aware of is, especially if you’re doing a visual art visual arts project, is people’s access to materials. that’s really a huge thing, whether it’s visual arts or music, making sure that people have access to some sort of material and trying to think of different ways to have that. I did a little mini creative movement workshop a couple of weeks ago and I just went around my house and found all different sorts of props. Everything from my own silk scarves to pillow cases and tee shirts and even a piece of tissue paper and trying to help people. I see that there’s all sorts of things that you can play with and you don’t have to go to the store to get them. You just have to connect with that playful spirit in yourself.

Janet Kennedy (17:18):

You know, if anything that encourages the creative process. So while we can all be Fred Astaire and dance with a mop, or a hat rack, that was the best one. Was that. Yeah. but you know, it’s interesting when you think about, dancing with a stuffed animal or what a silk scarf does, totally changes. If you’re dancing with something that’s, you know, frim and round that you can’t drop.

Annalise Hammerlund (17:48):

Tissue is actually really fun. It does not get enough credit. If you just take a loose sheet of tissue paper, you can play that. Like, don’t let it touch the ground game that you would with a balloon and you can’t crush it. So, you know, it really takes, you have to be much more delicate. You can’t do what you would with a balloon.

Janet Kennedy (18:09):

That’s actually really great for kids learning control.

Annalise Hammerlund (18:13):

And while I was doing it, I had the thought quite, I do a lot of work within hospitals and it has to be latex free. So you can’t do any balloon game. But you kind of play with tissue paper cause that’s latex free.

Janet Kennedy (18:27):

You work with I imagine all ages.

Annalise Hammerlund (18:30):

Yes, I do. I prefer six and up just because early childhood takes a lot more specialized training that I don’t have.

Janet Kennedy (18:39):

And is this something that’s usually prescribed solo or is it while somebody is under care? So if you’re in a hospital, somebody is recovering from something and this is added to it, or do you actually have clients that this is really the only therapeutics they’re getting?

Annalise Hammerlund (18:59):

My individual work, because I am a licensed professional counselor, I’m able to bill through insurance that way. And so for those clients it really is the only mental health care that they’re getting. and then the clients that I work with in hospitals, it varies. There’s a group that I work with, not during the pandemic, but they are permanent residents of a unit where it’s assisted breathing so they’re all on ventilator units for various reasons. And we do a weekly one and a half hour group. It’s part of their socialization and just weekly routine. And then a lot of the groups that I’ve done with Susan are with people who are out in the community but have a particular neurological disorder. Parkinson’s, Alzheimer’s, epilepsy. We have a very large art space, epilepsy group in grand Rapids.

Janet Kennedy (20:06):

I don’t want to confuse using arts as physical therapy and arts as mental health therapy. But is there a crossover between the two?

Annalise Hammerlund (20:17):

Absolutely. My training is for the mental health aspects of it, but I’ve also worked with a lot of occupational therapists in the past who use very similar processes and techniques, especially with children to work on different physical skills. fine motor and gross motor skills. And that is something that I’m aware of and attend to in a lot of my groups, especially working with kids, one of the big things becomes crossing the midline of the body and that’s really great for brain development and getting both of the hemispheres to work at the same time.

Annalise Hammerlund (20:56):

So I try to design a lot of projects and activities that encourage that sort of motor activity.

Janet Kennedy (21:03):

You’re teaching me something here. So if I’m doing this and I’m waving in my right arm, the left side of my brain is busy. If I’m waving with my left arm, the right side of my brain is correct, but it’s actually a thing to make your hands cross over to the other sides, like touching your shoulders.

Annalise Hammerlund (21:21):

Yes. And so another one, I don’t know if you remember this from maybe like a gym class, but where you would stand with your feet wide apart and spread your arms out and then you would reach with your right hand to touch your left toe and your left hand to touch your right toe. So that’s a much bigger version of that. Sometimes I will have people put a drawing instrument in each hand and then we try to work on the page and draw with both hands, not making any particular shape or design, but just trying to keep both sides of the brain active.

Janet Kennedy (21:58):

That’s messing me up right now, trying to visualize that.

Annalise Hammerlund (22:03):

That activity actually has been shown to be very beneficial for people with trauma histories. Brain science isn’t entirely sure why, but it’s a thing that we found.

Janet Kennedy (22:13):

Fascinating. We’re going to point to everybody to MyMGSole.com for more information, for resources, for the downloadable paper template that you can use. If that’s what you want to design or if you want to practice on that first before you go to your actual shoe. And remember two important hashtags, My MG Sole, M Y M G, S, O, L, E and more to me than MG. So make sure whenever you post to Instagram or Facebook you are using those hashtags. Well ladies, thank you so much. I think this is going to be an incredible project. I’m really excited to have had just a small part of it. Is there anything you’d like to tell people before we wrap up?

Susan Woolner (22:58):

I’ll say there’s no right or wrong way to do this project. Just jump in and do it. I think that everybody has a creative part of them, but also everybody has a story of their life and this is just a small way of really being able to share on a canvas. The canvas might be different. It might be a paper tool or it might be a shoe, but essentially we’re creating a canvas of their life.

Annalise Hammerlund (23:23):

Yeah, and I’ll say to be gentle with yourself throughout the process as you’re doing these reflections, you may find that you start to really feel some of these heavy emotions over again and that’s okay. That’s what is expected. That’s part of this process and trying to find ways to give those emotions somewhere to live and that place to live is on this shoe and trust the process. Try not to be too critical of yourself. Try to get curious and be playful and overall, just be gentle.

Janet Kennedy (23:59):

I look forward to seeing some beautiful and crazy and expressive and fun shoes, coming up shortly on MyMGSole.com. Thank you so much for being here.

Announcer (24:12):

You’ve been listening to the Get Social Health podcast. The show notes are [email protected] to join our healthcare social media journey. Follow @GetSocialHealth on Twitter and start a conversation.

Announcer (01:10):

Janet Kennedy (01:36):

Susan Woolner (02:13):

Susan Woolner (02:53):

Annalise Hammerlund (03:20):

Janet Kennedy (03:58):

What do you plan to do with these creative shoes once they’ve been done?

Susan Woolner (04:02):

Susan Woolner (04:44):

Susan Woolner (05:47):

Janet Kennedy (06:13):

Susan Woolner (06:49):

Susan Woolner (07:51):

Janet Kennedy (08:17):

Annalise Hammerlund (08:40):

Susan Woolner (09:26):

Annalise Hammerlund (10:13):

Janet Kennedy (10:43):

Susan Woolner (11:06):

Exactly right.

Janet Kennedy (11:07):

The project is going to be going on in May. How will they find it?

Susan Woolner (11:12):

Susan Woolner (11:39):

Janet Kennedy (12:27):

A little off topic, but this reminds me so much of the Flat Stanley project.

Susan Woolner (12:36):

Yeah, I’ve done that for other people’s kids as well as my own. You know, it’s the kind of natural resource, you know, renewable resource that that teachers use.

Janet Kennedy (12:48):

Susan Woolner (13:05):

Yeah, there’ll be a gallery and maybe one of the aspect of the gallery is being able to kind of see a map where everybody’s sharing from. That’d be great.

Janet Kennedy (13:14):

Annalise Hammerlund (13:39):

Annalise Hammerlund (14:16):

Janet Kennedy (15:10):

I love that concept that, that this is a total personal expression of what you’re thinking and feeling and whatever you do, what it means to you.

Annalise Hammerlund (15:22):

Janet Kennedy (16:06):

That makes perfect sense. So Annalise since you’ve now had to kind of work virtually, how has that changed how you do expressive arts therapy?

Annalise Hammerlund (16:15):

Janet Kennedy (17:18):

Annalise Hammerlund (17:48):

Janet Kennedy (18:09):

That’s actually really great for kids learning control.

Annalise Hammerlund (18:13):

Janet Kennedy (18:27):

You work with I imagine all ages.

Annalise Hammerlund (18:30):

Yes, I do. I prefer six and up just because early childhood takes a lot more specialized training that I don’t have.

Janet Kennedy (18:39):

Annalise Hammerlund (18:59):

Janet Kennedy (20:06):

I don’t want to confuse using arts as physical therapy and arts as mental health therapy. But is there a crossover between the two?

Annalise Hammerlund (20:17):

Annalise Hammerlund (20:56):

So I try to design a lot of projects and activities that encourage that sort of motor activity.

Janet Kennedy (21:03):

Annalise Hammerlund (21:21):

Janet Kennedy (21:58):

That’s messing me up right now, trying to visualize that.

Annalise Hammerlund (22:03):

That activity actually has been shown to be very beneficial for people with trauma histories. Brain science isn’t entirely sure why, but it’s a thing that we found.

Janet Kennedy (22:13):

Susan Woolner (22:58):

Annalise Hammerlund (23:23):

Janet Kennedy (23:59):

I look forward to seeing some beautiful and crazy and expressive and fun shoes, coming up shortly on MyMGSole.com. Thank you so much for being here.

Announcer (24:12):

The Digital Medicine Society

December 9, 2019 Janet Kennedy 00:30:00 Comments Off

As the host of both Get Social Health and “People Always, Patients Sometimes” (a podcast for Spencer Health Solutions), I have even more opportunity to talk with some exceptional individuals and organizations. As such I get jealous of some of the guests on the other podcasts, which seems odd because I’m doing the interviews for each. Can I be jealous of myself?

For all my Digital Health listeners, I wanted to share this interview with Jen Goldsack of the DiMe Society from the “People Always, Patients Sometimes” podcast. This podcast is a production of Spencer Health Solutions (full disclosure: my day-job!). Our podcast focuses on the innovators, thought leaders and patient influencers who are demanding change now in clinical trials

The Digital Medicine Society is a group of individuals who are committed to innovating and transforming how digital apps, medical devices, software and processes can positively impact healthcare and clinical trials. Since Jen handles all my questions so well, it didn’t make sense to repeat the same interview for Get Social Health.

Here is the interview and transcript from my interview with Jen Goldsack about the DiMe Society on the “People Always, Patients Sometimes” podcast.

The DiMe Society – Jen Goldsack

It’s time to discuss the digitalization and democratization of medicine so we invited Jennifer Goldsack to join us on the “People Always, Patients Sometimes” podcast. Jennifer is the interim executive director of the DiMe Society, pronounced like the coin, an abbreviation of the Digital Medicine Society. In our discussion, Jennifer spoke about the “trans-disciplinary nature of digital medicine as a field” and how, without professionals from every field at the table, the healthcare community will make mistakes and under-deliver on possible treatments for the individual. As a nonprofit, Jennifer explained that “we do welcome all comers” at the DiMe Society – unlike other organizations, the DiMe Society charges individuals only $50 for membership, creating a low barrier of entry and ensuring accessibility to everyone.

The DiMe Society was created with the mission to facilitate interdisciplinary collaboration between professionals within the global healthcare and technology communities in their research, teaching, and promotion of best practices in medicine. The DiMe Society believes that everyone has something to contribute to the advancement of medicine, from white-hat hackers, engineers, and clinicians to citizen scientists. Founded earlier this year, the DiMe Society already has around 700 members from 24 countries after only 5 months of opening their doors.

To learn more about how Jennifer and the DiMe Society cultivate collaboration in the field of digital medicine, click on the link and listen to this week’s episode of People Always, Patients Sometimes, hosted by Janet Kennedy.

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Dave DeBronkart ePatient Dave Part 1

May 17, 2019 Janet Kennedy 00:32:19 Comments Off

ePatient Dave – Part I

I’m honored to have Dave deBronkart on the podcast today. He is the original “e-Patient” and has a lot of stories and interesting projects to share with us today. As a matter of fact, so many interesting projects that we’re going to break this into a two-part discussion, so join me for our conversation with e-Patient Dave on Get Social Health.

Podcast Transcript

Announcer: 00:22 Welcome to Get Social Health, a conversation about social media and how it’s being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy.

Janet: 00:48 Welcome to the Get Social Health podcast. What an honor for me to have Dave DeBronkart on the show today. He and I met through the Mayo Clinic Social Media Network and have run into each other a few times at healthcare conferences. It is such an honor to have him here. He’s known on the Internet as ePatient Dave. He’s the author of the highly rated “Let patients help patients” engagement handbook and he’s one of the world’s leading advocates for patient engagement. After beating stage four kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. Dave, welcome to the podcast.

Dave: 01:25 It’s an honor to be here. That’s what healthcare needs, so I’m really glad I’m quite, you do a good professional job of it.

Janet: 01:33 Thank you so much Dave, and I’m really thrilled to have you here. If anything, to give you an hour to sit down in a chair and just have a conversation because when I looked at your website and all your speaking engagements coming up, I was absolutely blown away with how active you are. You are talking to a lot of people these days.

Dave: 01:52 Well, do you know I can’t sit home and be an evangelist. You’ve got to carry it out into the field. And as it happens, through one of the strange quirks of the universe, when I accidentally found myself, it was actually 10 years ago this month, that I found myself on the front page of the Boston Globe because of a blog post I’d written. People started asking me to give speeches on the topic and I had learned how to do that when I worked in marketing. The last thing I ever would have expected coming out of cancer is that it would turn me into an international keynote speaker.

Janet: 02:26 I love that. I love that you felt that this is a mission worth all of your time, that you really wanted to commit to that. I know that we’re going to gloss over your early story because I think a lot of people know who you are, but what you represent an almost more than any other patients we’ve spoken with is that you’re a mature individual and you have a length of view that is longer than many of my guests. A lot of ePatients who are involved and engage these days tend to be in there like twenties and because they have always felt that social and digital was a way to tell their stories. You and I represent more of the boomer generation.

Dave: 03:07 Uh, we’re not so forthcoming.

Janet: 03:09 I’d love to get your perspective on this 2009 – 10 years ago when people first started you to speak as an engaged patient and an empowered patient. What’s happened since 2009 to today?

Dave: 03:23 Well, you know, I’ve just been reflecting on this because 12 years I got the diagnosis to nearly died, but God cured within a year. That was 2007 in some speeches. Now I customize every speech for the audience, depending on what they’re up to. Sometimes the best message is if you live long enough, things really change. And what’s important about that is people tend to achieve a certain level of seniority or accomplishment in their profession, whatever it may be. And they feel like, dude, I got this, I’m good at this. And then 10 years go by and all of a sudden what was important before isn’t important anymore. And you’ve got youngsters nipping at your heels and you got to think it all out again. So consider in the middle of my treatment, Apple introduced a product called the iPhone. You know, and you think that the world might have changed a bit since then.

Dave: 04:20 So, well, and that’s a, you know, apps and everything. And this is why in my career in business, I was involved in quality improvement projects, countless meetings over the years with different companies about rethinking how we go about doing things, what are our customer’s priorities and so on. So I naturally, when people started asking me to talk about how care, particularly patient engagement, I looked at it through that Lens. So what has changed in 10 years, 12 years and years since the front page article is, I’ve learned a lot more about what’s changed in the industry as a whole. A lot of people have been trying to do patient engagement, patient empowerment, and a whole lot of people have been pushing back. But it turns out that a lot of big reason for that, you can’t do patient empowerment and engagement with any sort of completeness unless the patient has access to the medical records. And there has been feeble lip service in the past because the technology didn’t support it. But you know, the biggest change in what it looks like if you look out to the horizon is the technology is coming along and the culture is finally coming along 10 years later to make it possible for us to get all of our information.

Janet: 05:50 And that is really the foundation of helping patients knowing and participate in their health journeys, right? They have to have access to what the doctors are saying about them and what the doctors are cataloging about them, correct?

Dave: 06:04 Well, in general, yes. Now, not everybody one flat. All right. Because the whole principle of patients that are care is that people are different and you can’t treat everybody the same. It’s, I’ve found it’s useful to point out to people, especially if it’s an audience that is in the younger parents category. Like my daughter is, I have a five-year-old granddaughter, excuse me, 5.8 years old.

Dave: 06:32 Her mother is a science teacher, she is 5.8 years old. Anyway, people who are recent parents, no, you can’t treat all little kids the same. Some of them wanted to take things slow and easy, somewhat excitement and so on. Some patients during my illness, the nurse practitioner over men, that’s just my case said that she used to work in pediatric oncology and sometimes the patient couldn’t articulate what was important to them. First of all, not everybody cares about seeing what’s in their health records. My parents are polar opposites on that. My father just said let them do their job. It’s my mom is just on top of everything checking to make sure they’ve got her allergies and medications right and everything. My point is it is perverse. Take, keep people like patient in the dark about something and then go around saying they wouldn’t understand. They don’t know anything about this.

Dave: 07:33 You see my point? It’s exactly, there’s so many parallels between the ePatient movement than the women’s movement. When I was a little kid, people were always making jokes on TV about women drivers. Well, women were not experienced drivers in the early 1950s generally, you know, the remedy was not to keep people in the dark. The remedy was to get them involved and make them experience. And that’s my point with patient access to the medical record. It’s really is unfair. It’s an unfair burden to expect the providers to be on top of everything because there’s so much stuff in a chart, it really is much better to let patients help.

Janet: 08:18 So are you saying that, and I agree with you totally, I love your analogy too. Hey, nobody’s going to get to be a better driver unless they get to drive. No one is going to appreciate their health records unless they see their health records. But are you saying that this is literally just having access to the EHR, whether you choose to engage with the electronic health record or not, is the point or is there a deeper level of information you think that patients need?

Dave: 08:42 That’s an excellent question. I have a lot of conversations on this subject and that’s a razor-sharp question. My goal is not to make people do anything a particular way. It’s to help healthcare achieve its potential. I am deeply grateful to the highly skilled, trained, educated doctors, nurses, assistants, everyone who took good care of me when I was dying and in my business troubleshooting mindset. When I hear all the stories about medical errors or somebody didn’t know about a side effect or just there are so many ways that the flood of information out there might not get to the point of need at the moment of need and what I want. First, we troubleshoot. We say, wow, there is too much information for anybody to know everything, so now what can we do? Some people say, well, it’s the doctor’s job to know everything.

Dave: 09:50 Well, well, I know you and I were immersed in this, but the general public has not had this OMG moment of realization yet. It’s funny if the ePatient expects the doctor to know everything, it’s a recipe for mischief. The same is true if the doctor expects to be treated like they know everything, you know? And that’s so this is why this is a culture change, you know, in the women’s movement. Well, what it taught to change mindsets and we thought we had it solved, but oh boy seems that it’s an ongoing project. What it took to change mindsets was not just changing men’s minds, but women’s minds. Also long ago, early in my career, I had a woman who worked for me, literally said she couldn’t do something. She said I’m just a girl. Like you see, you are a level three employee, which is a high level in a technical profession. Yeah. So it is a culture change.

Janet: 10:53 All right, so what are the things you talk about as, as a goal or a priority on a professional side is that you really want social change and I think that’s really the point that you were just making. But how do you envision social change helping healthcare and making healthcare easier for patients?

Dave: 11:14 Well, you know, just this morning, a patient blogger named Aaron Gilmer, Gilmer health law is her Twitter handle, posted something magnificent. One of the best achievements, I think in patient engagement with empowerment that I’ve ever seen. She has, an extreme mix of psychological and trauma and medical conditions and so on. She created two documents that are now in her chart that express what heart concerns are about being taken care of, how past traumas affect various things, what they should know, what she does in order to deal with it. And here’s how I express my worry if I’ve been triggered. And so on. The first hospitals she gave it to, they looked at it and canceled her surgery. They basically said, get outta here. And she didn’t bring it up again. She has a great blog post about it. We can link to it in the show notes.

Dave: 12:18 She didn’t bring it up again. And then several years later, just recently she got additional care that happened to be in part of the same system. They ran across this and they said, thank you so much. And they have been using what she had expressed. They’ve been using those methods of talking with her and are you okay with this? And so on. See that’s social change. In the old view, the doctor knows everything and those what you’re supposed to get economically. This can be a major issue because in US healthcare, so much of what care providers are allowed to do is tied to reimbursement issues and there can be financial pressures. It really takes commitment as a caring profession to overcome that and in the new view, it really is important what matters to the individual patient and people are committed to care as a separate issue from the science that’s being administered to the sick person.

Janet: 13:27 Alright Dave, I’m having an epiphany here and I don’t know why this never occurred to me. Although I will say I have the benefit of being a generally healthy person. I’ve never really had any serious health issues and a visit to the doctor will solve my problem. So I’m very, very fortunate in that regard. However, it never occurred to me that as a patient do I even have the right to add things to my own file and why we should allow patients to submit a patient statement. That kind of sets it up, especially if you’re going from physician to physician, you’d have a complicated thing. Wouldn’t you rather be able to say, here’s my – just what Aaron Gilmer did – here’s my story, here’s my whatever. So that as you get from a specialist, to specialist, to specialist, they actually read just a paragraph about who you are as a person, not who you are as a series of medical diagnoses.

Dave: 14:16 Absolutely. And I imagine that in your work, I mean will you manage client relationships and your business? You need to understand what’s important for them, right? You walk in, if you get on a first phone call with everyone and you just feel out the same thing you said to the last 12 people and here you go. Like it or not, I’m going to give you my off the shelf solution. Well, you don’t like that. What’s wrong with you? Right? You would think that the doctor knows what to do in every visit. But in today’s world, you’ve got to ask yourself what, so what’s the difference between what you do in service to your clients and what a physicians, MD, nurse practitioner – by the way, it was a nurse practitioner who first told Erin that he found that in her chart and he was so grateful for it.

Dave: 15:10 That’s a whole separate discussion of how nurse practitioners generally have more of a cultural license, so to speak. Figuratively speaking, to just plain be caring professionals. What are the cultural reasons why we – in healthcare – we wouldn’t start with finding out what’s important. I mean, my doctor, the famous doctor Danny Sands, he was the one who in 2007 when it turns out I was dying. He, was the one who you have a good patient community and he didn’t say stay off the Internet. He showed me where to go on the Internet.

Janet: 15:52 Oh wow. He’s unusual.

Dave: 15:52 Well that’s, that’s modern. That’s modern today. He wears, I just saw on my last clinical visit with him, he has a button on his wife coat that says what matters to you with a question mark, what matters to you? Because you know, you prescribed somebody, okay, you got to eat better.

Dave: 16:17 You gotta do this, you’ve got to do that. That’s all external shut up and do what I tell you. Unless it is grounded in me one thing, some form of a better life, to know that somebody really would love to live to see their grandchildren get married versus my bucket list has one big item. It’s a month in Hawaii. You know? Then any recommendation for exercise or behavior change or anything. And that’s, that’s the point these days. We have so many options, treatment options and so on. All proper respect and appreciation to physicians who in today’s economic environment, we’ll take that extra time because they don’t get paid any more for being that kind of a good physician.

Janet: 17:10 Hmm. Okay. Dave, I want to ask your perspective on something. The world I’m in where, again, as a fortunately healthy person and in my podcast, the work I do tends to be with startups, with new companies, with digital health folks, with young people who are inventing apps and it’s a very exciting world. However, I know you’ve spoken to physicians and healthcare practitioners in the hospital environment and one of the things that I feel is happening and I’m looking to you for clarification or validation is what’s up with the medical schools? Are they focusing on integrating some of these new ideas and changes or are still training physicians the same way they always did? Therefore, we’re just going to have one more generation of folks who want to say do as I say,

Dave: 17:57 Well, surprise, surprise. There’s a spectrum. Whoever would have thought that there would be, we know social change takes generations, right? The conventional wisdom that I’ve heard physicians express to each other is, you don’t want to be the first to do something new and you don’t want to be the last, just stay in the middle of the pack. Now, surprise, surprise. That turns out to also be exactly how the curve in high tech innovation; there’s to this curve where you have the early adopters, the innovators, then you have the early majority and so on, and then the laggards are the last ones to get into it. Some medical schools are primarily interested in preserving their reputation and their position. They want to do a good job of doing what’s well accepted. I don’t necessarily fault that. I do think it’s a good way to guarantee that you will never be in leadership.

Dave: 19:01 You know, you may be leadership and reputation, but you’ll never be leadership and turning out of the next generation of innovative, smartest, best future doctors. Others though new medical schools that come along and the best example that I know of is the Dell medical school at the University of Texas. That has just opened recently. An example of how they’re willing to conspicuously differ because there is this thing that some of us learned in high school, high school biology, the Krebs cycle, how energy gets generated. And I don’t remember a thing about it. And the important thing is it’s always been something that doctors have to master in order to become an MB and then they never ever use it. So why is it taught and why is it so important? Some people think it’s just to be obnoxious and make it difficult to get over that hump.

Dave: 20:01 Anyway, Dell medical school’s conspicuously said, we’re not teaching the Krebs Cycle. We’ve got better things to do with our time. And similarly there is a great social penalty within the medical community or going after something that is not well established with a larger body of published literature about it. So to get deeply into patient engagement today is risky in that context. People will say, where’s the evidence for that? And that’s good because once upon a time, you know, just within the last 50 years, it was discovered that doctors were doing a lot of things despite the that it doesn’t work.

Dave: 20:50 And that’s a whole separate subject. My point is it takes genuine vision and leadership to see that something is the new path forward, even if the literature doesn’t exist for it. And some schools are beginning to do that, but not enough. I have begun lecturing to some medical schools. Just as one final hint of that. I opened an email late 2014 and it was an invitation from the Mayo Clinic, from their chief residents to be there visiting professor in internal medicine in 2015 despite the absence of any curriculum or anything of the sort. So I went to, we talked a lot about the future of the role of the patient.

Janet: 21:41 Well, I love working with the team at Mayo Clinic. Now I haven’t been on the clinical side, obviously I’ve been on the social media side, but the embracing new ideas and at least let’s look at everything and what is it’s potential impact is just a phenomenal philosophy that you don’t turn your back on it till it’s, you know, so proved, it’s carved in stone. Dave, you’ve teamed up with probably one of the most well known medical futurists and medical device testers in the world. Dr Bertalan Mesko. What did you do with him and what is the digital health manifesto?

Dave: 22:16 Well, it’s an ongoing thing. You know, and it’s funny because this just freaks me out. One of the things that changed, I said if you live long enough, things change. Well, one thing that’s happened is I am 12 years older than I was 12 years ago. And that means for instance that my daughter who was just getting out of college when I was sick is now a mid-career science teacher. And I can’t believe this, but Bersi is younger than my daughter. And so there we are having these conversations and he’s showing me all his digital gadgets and we actually both spoke at a conference. A company had a, an important user group meeting in Chicago a few months ago. We both spoke one after the other and he and I both are thinking in terms of what could we be achieving and what’s holding it back. And we see, especially on LinkedIn, LinkedIn is a wonderful place for making connections and so on. But you’ll also see in the same way that Twitter became a sort of a festering swamp of rumors and illusions. On LinkedIn, you can see investor type people, Silicon Valley type people getting frothed up about a wrong concept and just the fact that other people are getting excited about it makes it seem like this must be the right thing. So we decided together to publish this manifesto saying, Whoa, step back you guys. Just because something is an amazing new technology. I like to think of it in terms of the Pharma concept, pharmacological concept of what’s the mechanism of action by which this new gadget is going to improve anything. You know, so many silicon valley inventions, as well, meaning as they were, turn out to not make any difference or they make a difference, but they don’t get commercial uptake and they die.

Dave: 24:26 So we wanted to point out, here are the principles that you need to think about if you want to understand what’s happening with digital health, because believe us, something real is happening. I used gadgets, for instance, to overcome prediabetes a few years ago, and everybody, I’m over 60 I’m well over 60 and a bunch of people said, look, people over 60 aren’t going to ever change their behavior. It’s a lost cause. Those people are ignorant. All right? So we said principals, it’s a cultural transformation, not a technological revolution. All right? It’s about behavior change. It’s not about – see when I, when I got this prediabetes diagnosis, I went out and bought a Garmin wristband and I collected lots of data about my activity and my weight went up. Well. So here’s the thing. Information enables behavior change, but it doesn’t cause it. What produced weight loss for me and a victory was that I got into the YMCA’s diabetes prevention program, which is a behavior change program. Okay? So it’s not about having the technology. What’s important about that from a business sense for a couple of years, cynics – so you have the enthusiasts on LinkedIn who are blabbing about how exciting this innovation is and then you always have the wave of cynics who come along and say, yeah, you know, where you go ahead and search, buy a Fitbit. You know what you find? You find ads for used ones that have been discarded on eBay. Those are stupid people who say that because somebody buys the Fitbit and they expect it to reverse their prediabetes stupid. And when I say stupid, I mean uninformed, right? It’s okay for me. If somebody is uninformed and they admit it, which I do a lot. But if they are uninformed and they go around with their chest puffed out acting like they’re smart, that’s ignorant.

Janet: 26:36 Well I know there’s been conversations about around ADHD; that ADHD with med and no behavior modification, you’re better off not taking the meds at all. So you have to understand how the medication or how the issue is impacting your body and be able to take action as well as work with the med.

Dave: 26:57 Well. And so now, to switch back to Erin Gilmer’s perspective, because all this stuff is interrelated as everything cultural is. One of the first things I did online before the Internet was back on Compuserve. I started out being a discussion leader in desktop publishing and then I became one of the forum managers on the ADD forum back when it was called ADD. And one of the things you found there was that when the people who have the problem, and I still pitch this in speeches today for certain audiences, when the people who have the problem get the ability to express themselves and choose among options, one of the things you find is they may pursue different objectives than the therapists or being told to follow what’s in the published literature, so as just one of many examples. We had one guy – and this was 1994 was when ADD was brand new – we had one guy who was a travel agent back in the days of travel agents. Did I mention that things change? And he was getting occupational therapy so he could tolerate sitting at his desk and the other patients in the community said, dude, get a job you enjoy, and he ended up becoming a UPS driver, which was a great job for our hyperactive person. Drive, drive, drive and run to the door, drive, drive, drive, run to the door at Christmas time you get bonuses for productivity. That’s rethinking the issue. Anyway, my point is this really is like a seismic shift because if you shift to where you’re giving the person who has the problem, permission and information and tools, what they come up with may be different than what was on offer at the hospital. That can be bad news for the hospital, but since the hospital only exists to improve health in the community, it’s good for society.

Janet: 29:13 No, that’s an excellent point, Dave, and I definitely think it’s one that hospitals need to hear just because you have a perspective that this, you’re going to do this program, you’re going to initiate this special effort or this patient initiative. It doesn’t mean that the results are expected and you have to be willing to be flexible and learn from what you’re doing as well as the patient learning from it.

Dave: 29:39 Well, and what I really hope, I don’t want to sound like I’m rejecting doctors. That’s the last thing. When I was sick, I did not reject doctors and go read up on herbal remedies. That might work. I went to the doctor, I still go to the doctor, but my doctor welcomes all of my doctors. Welcome me wanting to learn more and ask questions. That’s the point. And now you want to know what’s really ironic. So I have all these different apps. I have a wifi bathroom scale, I have my diet tracker or I’m counting fat grams, steps, and all of that stuff. My doctor can’t see that data because there’s big fancy hospital computer doesn’t have an interface. So now we’re in a world where all of a sudden I have access to a ton of data that he doesn’t have. That is an inversion.

Janet: 30:40 And so we have to figure out how to get those two things married up.

Dave: 30:43 Perhaps. It may be that he can do his job as well as he needs to without seeing all my data. But we were just approaching, there’s a new it technology called FHIR – F H I R – which is just really maturing now after six or seven years of software development that will, for the first time, let people develop products that blend the hospital information, hospitals, plural. And my information from my devices. So there is a world coming where we can truly be partners in the same way that my tax accountant and I can both look at my Quickbooks data. Why as medicine not figured out that that’s the best way. Now my tax accountant can coach me to stop doing this. See this over here? That number’s too big. Why can’t my doctor do that? My whole thing is helping healthcare achieve the available potential.

Janet: 31:47 Oh, that’s excellent.

Announcer: 31:49 You’ve been listening to the Get Social Health podcast. The show notes are located @getsocialhealth.com to join our healthcare social media journey, follow @getsocialhealth on Twitter and start a conversation.

Janet: 32:04 I hope you enjoyed today’s podcast with Dave deBronkart. We’re going to be talking about some of the projects he’s working on and some exciting new things happening in his life in the next episode. So make sure you tune in for part two of our conversation with e-Patient Dave.

Find Dave online:

LinkedIn profile: http://LinkedIn.com/in/ePatientDave

Twitter: @ePatientDave

Podcast: Play in new window | Download

Lilly Stairs – Patient Advocate

April 22, 2019 Janet Kennedy 00:42:06 Comments Off

Have you heard the term Patient Advocate?

How about the expression “not about me without me” in the patient space? So often over the past decades, if not hundreds and thousands of years, the patients have sometimes the least consideration when healthcare decisions have been made. Well, that’s changing due to empowered patients who are using social media, online resources and the ability to connect with other people of like situations. Patients now are finding that they not only have a voice, but that voice is starting to be respected and drawn into the healthcare community.

Today on Get Social Health I’m very proud to be speaking to Lilly Stairs. She is a leading voice in the rapidly growing patient engagement field. This will be the first of a number of podcasts that I’ll be covering where we’ll be talking with patients or about patients and their engagement in healthcare. So join me for a discussion with Lilly Stairs on Get Social Health.

Connect with Lilly:

Follow the conversation or drop in at the timestamps below:

Janet: 00:00

Announcer: 01:07 Welcome to Get Social Health, a conversation about social media and how it’s being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

New Speaker: 01:33 Hey everybody, this is Janet Kennedy. Welcome to Get Social Health. On today’s podcast, I am thrilled to be finally talking with Lilly Stairs. She is head of growth and partnerships at the Savvy Cooperative. We’re going to hear a lot more about that in just a little bit, but first I want to set the stage. Lilly and I have known each other through social media for quite a while and one of the things that she brings to the table is the importance of including patients in the discussion online and in the work of healthcare. So whether it’s the work she’s doing as a speaker or the company that she’s with, she really has a fascinating perspective on getting patients involved. And why is she such a strong patient advocate? Because she has battled a couple of very serious chronic health issues and I think you’re going to find that really interesting to hear about. So without any further ado, welcome to the podcast. Lilly.

Lilly: 02:31 Thank you for that lovely introduction, Janet.

Janet: 02:35 You know, it’s tough when you’re really representing well, every part of healthcare. Which hat you put on must be kind of confusing.

Lilly: 02:42 It is. You know, I always, I do joke all the time about how I wear so many different hats and now I have to take them on and off and sometimes they wear them all at once. They’ve even done a post on Instagram ones where I put a bunch of different emojis on my head representing all the different hats that I wear.

Janet: 02:59 No, that actually makes perfect sense. I appreciate that you’re with a company called Savvy Cooperative, and I think it’s a fascinating concept. I love the idea of how it came about and I want to hear more about that. But first, why don’t we set the stage? Can you tell us all a little bit more about your personal health journey and really how you got to the place you are today in some ways, patient number one, and how you were able to translate that into a life worth living and a career.

Lilly: Oh my goodness. So I never thought that I would end up in health care, to be honest with you. I didn’t even know what the term biotech meant. And here I am working hand in hand with the industry, but when I was 19 I actually started having this pain in my left knee and we weren’t really sure what it was.

Lilly: 03:51 I had just wrapped up my freshman year of college at Northeastern University in Boston. I absolutely loved it, couldn’t wait to get back. I was home for the summer with my family and we went on vacation and I started to wake up every day and my body was achy and I was like, ah, you know, maybe it’s the beds. But then I thought, Huh, well I’m in college. I could really sleep anywhere and I, I’d be fine. I ended up getting home from vacation and all of a sudden I woke up one morning and I couldn’t move. I was paralyzed with pain literally throughout my entire body, unlike anything I had ever felt before. And My mother ended up having to dress me and feed me because that pain was so severe. And so I started going in and out of doctor’s appointments. They were not sure what was going on. They thought potentially it could be Lyme disease or Parvovirus. Finally, we had a doctor who said, and then they told my parents at the time, first that we think Lilly has psoriatic arthritis. And I remember my parents communicated this information to me and I just stood there, speechless, devastated, heartbroken. You know you hear arthritis and you think of your grandmother who just gets arthritis in her hip or her knee. You don’t think that as a young, vibrant, 19-year-old woman that you’re going to receive such a life-changing diagnosis. And so I decided against the doctor’s wishes at that point to go back to school. And I was waking up every morning having to take a hot shower to warm up my joints. Hours before class. I tried to find seats on public transportation and when I was sitting down, but an elderly person got on the train, people would look at me like, why isn’t this young millennial getting up for this elderly woman? But little do they know that I’m probably in more pain than that, that elderly woman and so on and so forth.

Lilly: 05:42 And six months after I received that psoriatic arthritis diagnosis, I ended up in the hospital. I was in and out of the ER three times in one weekend with excruciating stomach pain. The doctors didn’t believe me. They thought I was faking it, which is, unfortunately, something that happens often in our healthcare system to women. And after I was admitted, they ran a number of different tests. Over the course of a week, I lost 30 pounds, was on 90 milligrams of morphine, and the doctor said, listen, we’ve got one more test that we can try and if this doesn’t show anything we don’t know what’s going on. And so I, I took this pill that actually took pictures as it moved through my body every three seconds. And it was at that point that they discovered I had bleeding ulcers in my small intestine and they diagnosed me with Crohn’s disease.

Lilly: 06:31 And so within the course of six months, I had received two life-changing diagnoses that I would live with forever. I remember pulling up my computer and while I was sitting in the hospital bed and I started typing in Crohn’s disease and psoriatic arthritis and what comes up, but the term autoimmune diseases, turns out there are 50 million Americans who are living with autoimmune diseases for point of reference. That’s about twice as many as people with cancer. I just remember her being so angry because I had never heard the term autoimmune disease before, but here I was living with two of them and there are 50 million Americans who are in during this unbearable pain and suffering that I’ve been through and I was just so angry and knew I had to make a change. So I like to say that my truest self was really unearthed in the hospital bed and it was at that point that I decided I’m going to do something about this.

Lilly: 07:22 I’m going to raise awareness for people battling autoimmune diseases. I’m going to help find new treatments. And so I ended up going through over the next couple of years, went through a number of different treatments because it’s as an autoimmune disease patient, it’s really hard to find one that works. I am very fortunate to say that I’ve been in medically controlled remission for five years now thanks to the amazing work of the biotech and pharmaceutical just strain. And that led me into my transition into healthcare. I basically was diagnosed at 19 so that was around when I was starting to do ops at an internship and jumped right into healthcare, started working at mass bio, the Trade Association for Biotech and Pharma companies and learned about patient advocacy as a career track when I joined them. And from that moment on, knew that I had to, had to be in patient advocacy. And so that was my transition into the space.

Janet: 08:14 What a fascinating story. Now, these two issues are not related, right? It was just horrible luck that they both happened to you.

Lilly: 08:23 So they actually are related. They’re both considered autoimmune diseases and it’s, I, I have a friend who says autoimmune diseases are like chips. You can’t have just one. And that is the case for many. It’s that you’ll feel, and there’s over a hundred different autoimmune diseases. So lupus, MS, Psoriasis, those are all considered autoimmune diseases and many people who get one often end up getting a second or a third as well.

Janet: 08:49 Oh, well there’s something I’ve learned today. So you’ve already done your job for the day. Excellent.

Lilly: 08:56 Raising awareness. That’s my big goal in life.

Janet: 08:59 When you serve as a patient advocate for a company, what does that really mean?

Lilly: 09:03 Yeah, it’s an interesting question. It means something different depending on the company. I think there’s an important distinction because there are some companies who truly embody this patient-centric mindset and I really hate the word patient-centric and I think a lot of people do in the industry but its sort of what we’re stuck with. If you don’t say your patient-centric then people think you’re a bad company. It means that you are the person within the company who is championing the patient voice. You are working across teams to ensure that the patient voice is being infused into the work that you’re doing and you are fighting at the table. You ideally at a company, you’re in a leadership position as a patient advocacy person and you are fighting to ensure that business decisions that are made are what’s in the best interest of patients. And so that’s really the primary role of somebody who sits in a patient advocacy position. But there are also doing a number of other things. They’re managing relationships with the patient advocacy organizations and patient communities and they are helping develop disease education awareness materials to educate on the different medication medicines that they might be developing or supporting, helping offer grants to different advocacy organizations. So there’s a lot of different ways that a patient advocacy function within the industry.

Janet: 10:31 So when you were working with Clara Health, you are working with a company that was trying to match up Pharma and clinical trial participants, is that right?

Lilly: 10:41 Yes. It was a multi-sided marketplace there. We were working to, or we are working because I am still a lead patient advisor with them and love the work that Claire is doing, but we’re working to connect patients directly with clinical trials and making it easy for patients to connect, which means we’re helping them search for the clinical trials. We hold their hand through the process, we call the clinical trial sites on their behalf. We coordinate their travel handle, all of those administrative burdens that a patient would typically be tasked with. And then on the other side, we work with companies to help them recruit for their clinical trials and retain patients. It’s in their clinical trials and we take a very patient-centric approach through that because we actually work with patient advocates to help companies think about what their clinical trial protocol looks like and actually help support like have live patients to help support other patients through the process.

Janet: 11:38 All right, and then tell me about making the transition over to Savvy Cooperative. How did that come about?

Lilly: 11:44 It was an incredible opportunity. I’ve admired Jen and Ronnie who are the co-founders for quite a while now. Jen and Ronnie are notable patient advocates in the space. Ronnie is a cystic fibrosis advocate who developed the largest online community for cystic fibrosis patients and Jen is a juvenile idiopathic arthritis patient. And she has spent her life really dedicated to patient advocacy. She works with the FDA. She got her Ph.D. in human factors research so that she could really bring her perspective and to industry. What they’ve created is something so special that I am really honored to be a part of because it is a patient-owned cooperative. As these advocates, they were constantly being asked by companies to give their perspective, but what they realized was that yes, we love giving our perspective and it’s great that they’re asking us, but you know what? We can’t offer a diverse perspective. There should be more patients who are giving their perspective and just because there may be not public about their disease on social media, they’re a little harder to find, but that doesn’t mean that companies shouldn’t be actively trying to reach out and get those diverse perspectives. And so that’s why Jen and Ronnie founded Savvy Cooperative, and they made the decision to make it a cooperative model, which means that patients actually own shares in the company and share in our profits at the end of the year because they believe that the business model should benefit the patient and patient should be fairly and equitably compensated for the work that they do. And so I couldn’t have imagined more of a perfect fit for me as somebody who, you know, my priority is to ensure that we are infusing the patient voice across every aspect of the industry, from Pharma to startups to health insurance. We want to make sure that that patient voice is incorporated early and often. And that’s ultimately Savvy’s goal. So I, I’m living the dream, getting to work with all of these different companies and, and learning about all of them, all of the incredible work that these companies are innovating on and being able to bring patient experts into to give feedback on that and so that they can iterate and make a product that truly fits an unmet need.

Janet: 14:06 Oh man, that’s fascinating. And sometimes I think a lot of people don’t realize or I don’t know, maybe we should realize that patients traditionally really don’t have a lot of money. And yet these companies, Pharma companies, in particular, they’re going to be making millions and billions of dollars through selling all the way through to the patient. Yes, via a provider, a physician, a nurse practitioner. But ultimately it’s coming out of the patient’s pocket in some way. And yet they’ve had very little economic say and how these businesses and medications have been developed.

Lilly: 14:40 Absolutely. And I mean, and it’s, it’s crazy to me because in every other industry we consult the end user. If you look at consumer-facing products, they’re constantly running focus groups. And I actually wrote a piece on this called challenging healthcare to engage in a Pepsi Challenge. The idea for this story came from a book I was reading called Blink by Malcolm Gladwell. And in it, there’s this whole section on Pepsi and Coca Cola. And he talks about how they were really had to have, I mean they still go head to head, but how they were trying to figure out what they could do to get consumers to buy more of their product. And so coke even went to such lengths that they ended up altering their secret formula based on feedback from consumers. They have this really secret formula that they are used for years and they altered it to try to sell our product.

Lilly: 15:40 And as I was reading it, and this was right around when I started at Savvy, just thought, oh my God, if we could get health care to engage patients. For the way that consumer-facing industries engage patient, engage their customers. We would be golden. I mean health care would actually be innovating in making things that matter to patients because right now part of the problem is so much money is being wasted on products that patients don’t want or that aren’t the right fit or that don’t even end up being successful. And so not only is it really d quote unquote right thing to do when you engage patients, it’s actually a really smart business decision that helps save money and earn more money because your end user is happy. They want the product.

Janet: 16:38 You know, I’ve been involved in the startup community for a while and a lot of Startup Weekends are about young people coming in with an idea and I’ll give them credit. They’re thinking through challenges that people unlike themselves or having predominantly their grandparents, for instance, their Nana or their grandfather, and they’ve got this really cool idea that they may be figured out at Thanksgiving, I could solve this problem. The problem is I wonder if they’ve actually researched it and talked with not just their grandparent, other people in the industry. So how exciting it is that they seem to be getting startup funds and get support for an idea that really hasn’t drawn in the patient’s perspective and that generationally it hasn’t really been vetted out by a true need.

Lilly: 17:25 Yeah. And you bring up such a great point because the young tech entrepreneurs are, while they mean well and I think that some of them are doing it right. Okay. They are doing their research to actually really yeah, boots on the ground and talk to the patients who this matters too. And I had the opportunity now to work with a number of different companies who have made the decision to talk to patients and are actively working with them and it makes a major difference in the development of the products in a way that it’s iterated on. I mean, I have to give the hats off and a shout out to Clara Health for bringing me on as their patient advocate as one of the first hires. That’s really unheard of at most small health tech companies and but, but that made a big difference because I was able to come in and share my perspective and then say, Hey, you know what?

Lilly: 18:20 I’m going to give you this perspective, but we need to bring in a lot more other patient perspectives. If we want to actually develop a product that’s going to meet a diverse set of needs because one patient, much like in a consumer-facing industry, you can’t talk to one person and build an entire product off of that. That’s crazy. People would not do that. It would not be allowed. And in the consumer-facing industry, you would not get to move forward with that product. It just wouldn’t be an option. How tap? Because it has not been and in healthcare in general, because it has not been the status quo to talk to the patients. Nobody’s doing it and you’re not expected to. And VC firms aren’t forcing these companies to talk to patients because again, it’s just not what’s expected. And I think that it’s resulting in a lot of products that are not making it to market or are startups that are failing.

Janet: 19:12 And you know, there’s a limited supply of cash out there and every time we see something fail, that limits the pool of cash for other maybe more on focus ideas that have maybe a little bit deeper research or a better validation. I love that everybody’s trying to solve problems and I’m sure that that was a good thing they were trying to do, but really how many diabetes apps do we really need? I think it would be very cool, you know if we could figure out how to get the patients involved in doing this kind of development.

Lilly: 19:43 Yeah, I mean certainly. And so really our plea at Savvy is that you get out there and, and you talk to patients and we’ve also made a real effort to be startup friendly. I think another big part of the problem here is that it can often feel cost restrictive to some of these small startups to be able to say, hey, we need to allocate the money to go talk to patients. And so what we’ve done is we’ve created a pricing model that does accommodate some of these smaller startups that they still have the ability to talk to patients but not break the bank because we understand that every dollar really counts when you’re at that stage. And so I really encourage companies, help small tech companies to spend the money. It will be worth it. I know every dollar counts, but it’s so critical that you spend that money there.

Speaker 1: 20:32 You know, one of the things you mentioned is that diversity in your community is really important, but when I think about the number of conditions and disease states out there, holy cow, your community could end up being millions and millions of patients.

Lilly: 20:48 Absolutely, and what’s interesting about our co-op model is that we already have a very large reach. So because our patients are owners, many of them are owners and our platform rights, they own a share and again, they share in our profits at the end of the year. This means that let you know if we’re recruiting for a company that really wants to talk to a thousand patients, a thousand patients in Crohn’s disease, let’s take Crohn’s disease because that’s what I have and it’s an easy one to go to. And let’s say we have 500 Crohn’s disease patients on our platform. We could reach out to those 500 patients and they’d all find us enough to get us to that 1000 and sent the company and they would all do that because they’re all highly motivated in Savvy success because when we are successful, they’re successful. And so it’s a really, really unique model unlike anything else that exists. And so we’re able, we have this really special reach into private Facebook communities and support groups and boots on the ground because our members are, are the conduit. There are salespeople of Savvy, of spreading the good word about patient feedback and bringing their fellow patients into the fold.

Janet: 22:05 Okay. So what I’m imagining is that there are a lot of groups that patients may be involved with, ones that are, say specifically about their disease state or condition where they’re talking to patients. So that’s not really what you’re trying to do out there, but they can on your behalf, recruit more people with like conditions into your projects.

Lilly: 22:28 Exactly. And that’s how we get a more diverse range of folks on our platform as well. Because not every patient works with an advocacy group or shares their story on Twitter or regularly it goes out to companies. So that’s sort of the low hanging fruit if you will, or the patients who are easily accessible. But there are a lot of patients who, you know, maybe live in the middle of the country and the way that they’re expressing their patient journey or they’re learning more about being a patient is through a local support group. And so we’re able to reach those patients because we have folks on our platform who are connected everywhere, which is really, really special. And just unlike anything I’ve ever seen working in this industry.

Janet: 23:18 You know, and that’s a really big issue for hospital systems. I know for instance, in the state of North Carolina, we’ve had some rural hospitals close, well those patients still live in the rural parts of North Carolina where those hospitals formerly were, and they’re losing all kinds of resources, not the least of which is the ability to connect to other like-minded patients. So as we look at critical clinical trials, mostly taking place in major cities or even midsize cities, there are a lot of patients that are falling through the cracks, are not getting to participate because of this limited geographic viewpoint.

Lilly: 23:55 Right. On the money. I don’t even have anything to add to that because that’s exactly what we’re always talking about.

Janet: 24:02 Excellent. And I’m glad we’re on the same page. So tell me about the kinds of things that as patients they can get involved with. And I’m assuming that of course, this is all going to be Phi protected health information, or are they participating in anonymously? Are there times when they would actually block their identities from being known?

Lilly: 24:22 Yeah. So it all depends on the gig. So when we call them gigs, because what we like to say is we’ve created a gig economy for patients. So patients can log onto our platform and they can see different opportunities that are open to them and they can raise their hand if they feel there are fit. So some of them involve maybe an anonymous survey where you provide your feedback online via a survey. Some could be sharing your story via a blog post with a company, um, in which case you would be talking more publicly about your story. There are gates that allow you to stay in anonymous, but there are also games that allow you to get out there and share your story. And, and I think we certainly have a mix of patients on our platforms, some who really want to be out there and some who still want to contribute but want to do so in an anonymous way. So there are options really for everyone.

Janet: 25:09 Oh, well that’s excellent. And I think you’re gonna find that you probably have already found that there are patients who are just tired of being in the dark and they’re learning to embrace, you know, where they’re coming from. And of course, we get to the question of stigma and while they might be ready in their own groups to come out and talk to other health professionals that don’t necessarily always translate to their own neighborhoods or even inside their own home, you know, talking about their conditions with friends and family.

Lilly: 25:38 Certainly. Yeah. And, and that’s something that we’re very sensitive to because we know that unfortunately there is still a stigma for patients within their kind of everyday communities and in the workplace. And some people would like to keep that private. But it is my hope that we can continue pushing to raise awareness, especially about some of these invisible illnesses where people, you know, in your workplace, they may not fully understand and you might not feel comfortable sharing with them that you living with an invisible illness. But I want it to become more commonplace, that that’s what people are doing so that we can raise more awareness and people can understand that, you know, if you’re living with an autoimmune disease, when you’d say you’re tired, you can’t come into work because you’re tired. That’s not a normal tire that’s on a tired, that healthy person feels, that is crippling fatigue that forces you to be in bed all day. You just, you barely even feel like you can take a shower because you’re so tired. And so I think that we need to actually keep pushing. And I do encourage people when they comfortable to share their stories, wherever they can with their workplace, with their family, with their friends, and with their communities to help raise that level of awareness that we can have better support services in place where people living with invisible illnesses or autoimmune diseases.

Janet: 27:03 Oh, that’s excellent. Probably have already found that there are patients who are just tired of being in the dark and they’re learning to embrace, you know, where they’re coming from. And of course they, we get to the question of stigma. And while they might be ready in their own groups to come out and talk to other health professionals that doesn’t necessarily always translate to their own neighborhoods or even inside their own home. You know, talking about their conditions with friends and family.

Lilly: 27:30 Certainly in it is, and you know, we’ll get there. It’s taken time. But if you look at cancer, cancer, something, something like the American Cancer Society, that advocacy group has been around for, I think it’s over a hundred years and anybody says, you know, so and so, and my family was diagnosed with cancer. There’s really this automatic empathy that strikes I think between a peep. People get it, they understand how difficult that is and if you were to communicate that at the workplace, it would be understood, oh, this so and so needs to take time off because they have to care for their family member who has cancer. We lack that same sense of empathy when we’re talking about invisible illnesses, autoimmune diseases, mental health issues are another big one. And I believe the only way that we can really push forward in that is by people coming out and sharing their experiences and telling their story.

Lilly: 28:29 Whether it be at companies or just at your, in your local community center is at Church, at a place of worship at the local YMCAs. It needs to be happening everywhere. It really is a grassroots movement. It’s amazing what all of these patient influencers have done and the movements and changes they are helping make in shifts in mindset. But a lot of work can be done on a grassroots level as well. And so it’s my hope that you know, we can continue to inspire patients to, to get out and feel comfortable to share their experiences and their stories.

Janet: 29:02 Now you just got back from a conference that was very patient-focused, didn’t you?

Lilly: 29:07 Yes, I was at a Patients as Partners in Philadelphia and it was my first time there. I spoke with a number of folks who said, oh my gosh, you’re going to love this conference. It’s one of my favorites. And what’s really special about it is that on almost every panel they have patient representatives who speak on behalf of patients and advocates alongside industry professionals. And that’s really unique because typically at a conference you’ll see a handful of panels, maybe sometimes no panels that include the patient voice. And so this is really unique in that the patient really is present throughout the entire conference. I think it makes a massive difference in the strength of the content, the value of the contents. And I only wish that we could scale it up to see this happening at more conferences, not just patient-focused ones, but really across the board and in every nook and cranny of industry.

Janet: 30:09 I really challenge every single health conference, not just to make a place for patients to actively engage, but to fund their presence through scholarships because let’s face it, so many patients are facing huge financial burdens. Therefore, it isn’t just a question of time and even money and the hotel, it’s like money for food or for care for their families at home while they’re away at a conference. I’d love to see more of this happening.

Lilly: 30:39 Yeah, Janet, you couldn’t be more right. And, and that is something that patients face. It’s like, okay, now we have a seat at the table, but what about the fact that we have to take off work to go to this conference? You know, maybe not all of us work in the industry and, and so for us to have to leave work and take time off, and find childcare, daycare and who’s going to go check on elderly parents? There’s just so many factors that we need to think about. And then this kind of goes back to the clinical trials as well. This idea that we need to be designing experiences around the patient’s life. We can’t expect patients to just plug into what we want them to plug into. That’s not fair. That’s not right. So I do, I challenge people to really think about how we can design around the patient instead of, you know, trying to get them to just plug into what we’ve already developed.

Janet: 31:37 You know, you mentioned to me earlier about the administrative burden that gets put onto a patient file or in a specialty Pharma situation. Can you describe that a little bit more?

Lilly: 31:47 I’ll talk about it a little bit from a, from a personal point of view and something that I’ve been experiencing over the past couple of months and really have been quite infuriated with the burden that I has been placed on me when it comes to dealing with insurance and some of the specialty medications that I need to be on. And I’ll preface this by saying I’m in medically controlled permission. So I function remarkably day to day, kind of like an average person, which is again, remarkable and, and all the credit in the world to this industry that has developed these, these life-changing medications. But there are a lot of patients who are dealing with administrative burdens on top of being incredibly sick and being so sick that, you know, as I was talking about that they can barely take shower without feeling exhausted. So keep that in mind.

Lilly: 32:42 Is that, as I kind of talked through all this frustration, there are a lot of people who are dealing it with, with it while they’re actively sick. And I just can’t imagine that. So lack of specialty medication is something I need every two months and it costs $20,000 every two months. So it’s a hefty price tag. I am very fortunate that I’d have an insurance that covers it. But for years now I have had major issues with ordering and delivering this specialty drug. I spend all of this time coordinating hours with my physician who needs to write the prior authorization, which goes to the specialty pharmacy and my insurance. And then it gets, you know, most recently I was told, oh it’s, it’s approved, it’s approved. Okay, excellent. It’s approved. Great. I get a letter in the mail saying it’s approved. I called to schedule the delivery. Oh No, it’s not approved. I’m not sure why. I said, well, I have a handwritten letter from, from you that says this, this medication has been approved. So, oh no, I don’t know what’s happened with our system. That’s, that’s not the case. So then it’s up, got to go back to my physician who my physician then has to call the specialty pharmacy and then I call the specialty pharmacy again to check in and you get the picture. I mean this is this, it’s a constant frustration and this is one time and so finally we get it all set up. The delivery is supposed to happen. We get to the day, I stay in my apartment all day. I do not leave my apartment, I do not take a shower. I did not do anything because I don’t want to miss the ups truck that delivers my medication.

Lilly: 34:21 And so it’s 3:00 PM and I receive a notification on my phone that the medication has been delivered. And I say, well that’s interesting because I’m supposed to sign for the medication and I had no bell ring. And then I pop outside. I’m like, Oh, they left this $20,000 medication outside. Somebody is in trouble, but the medication isn’t even there. So now I’m left, you know, in a frenzy trying to call ups to try to figure out what’s going on. I am. Nobody’s being helpful. I kept, I keep getting kicked out to an international helpline. And so I go to Twitter and I started tweeting about it and I, the patient community totally rallied around me and it ends up that I get the phone number, the direct line to the San Francisco office. Then you need to speak to again on the phone with them.

Lilly: 35:08 They tell me that it was delivered to the restaurant next door. Oh my gosh. So my $20,000 medication is sitting in a restaurant next door that I was supposed to sign for. So I first opened my door, run downstairs to the restaurant and they have it miraculously and they put it in refrigeration because it says perishable on it, but at, so I get the medication. But it was only because the only reason I got my medication that day was because I am on Twitter actively and how to following within the patient community. If I was kind of, you know, an everyday person who didn’t really, you know, have the wherewithal to like navigate all this and put it on Twitter. And I mean, I don’t think I would have had my medication. And that is upsetting to me because Twitter shouldn’t be a privilege to get your medication.

Lilly: 36:03 And so that’s just one example. I’ve got a million more examples of, of instances like this that happened. And I know that this is, this is the struggle of countless patients who are on some of these specialty medications that they deal with. And so there is a massive administrative burden being placed on the patient to be coordinating appointments, to be coordinating medication, to be calling insurance and fighting insurance bills. And I, I mean, I feel like I spent half my life on the phone fighting with insurance about charges. So this is just the reality that patients are living with. And I, and, and I don’t think this administrative burden is fair and I think there’s a lot of work that needs to be done in that space and I’m eager to see more people come into disrupted. I’m, I’m encouraged by some of the insurance companies that I’ve seen coming into the space like Oscar health. They’re a startup insurance company and I’m actually a member of theirs right now and I’ve been really impressed by air communicative nature and how easy they make everything and the on-boarding and so I’m really thrilled to see some innovation happening in this space and I hope we can continue to move the needle because it’s a big issue.

Janet: 37:18 You’ve raised so many good ideas here for startups and to inform them about issues being faced by patients, but I do want to clarify one thing. The Savvy Cooperative is not a place for patients to come and share stories with each other. Right? It’s not a support forum. It’s about getting the patients from a business perspective, engaged with the health care companies, the Pharma companies, people who need to better understand what the patients are going through. They need to reach those folks, which sometimes is very difficult to do. Is that right?

Lilly: 37:50 Yeah, that’s a great point. And I’m glad you brought that up. And, and the reason that Savvy isn’t necessarily a place where patients can talk and share their stories is that there are already so many people out there who are doing that. A lot of advocacy organizations have offered that platform and we see a number of different people who have taken the initiative on that. But we really haven’t seen people coming in and, and giving patients an opportunity to monetize and to really actively get connected to companies and, and transform the space. And so I, that being said, I think that Savvy really is a wonderful community of patients and a community has sort grown organically if you will be, all the patients who have been involved. And we do share the stories of some of our members, but it’s not really a place for that pure peer support. It’s more of a place for, hey, how can, how can I share my experiences too and get paid for doing so.

Janet: 38:54 Okay. Awesome. Now you do, I know, embrace social media and I know that you have a Savvy chat on Sundays. What’s that all about?

Lilly: 39:02 Yeah, so Savvy chat is where we actually chat with folks for really like across the industry, which we chat with patient advocates as well, but we chat with people who are doing really cool things in the patient experience and patient innovation and patient feedback space. So we try to bring that to light so that we can spread the good word and share ideas so that we can start to see this movement happening across the industry.

Janet: 39:33 Oh, that’s exciting. All right folks, now you know where to go to get involved and let’s direct people how to find them.

Lilly: 39:39 Yes, so if you go to Savvy.co op, that is really all you need. You can go right there and our social media is there. We’re on Twitter, Instagram and Facebook, and YouTube. But you can sign up very easily. You can create a profile. You also don’t even have to sign up to see the gigs. You can go in just as we, because we want it to be accessible to everyone. So if you don’t want to sign up, you don’t have to, you can just sign up for the gigs that you’re interested in. But of course we do hope you sign up and we do hope you become a cone or it costs $34 it’s a one time fee to become a co-owner. And we do have financial aid available for those who are unable to afford the $34. So again, it’s a very accessible platform and we’re looking to bring diverse perspectives. And so patients, caregivers, healthy participants, all are welcome.

Janet: 40:34 Oh well that’s awesome. I hadn’t thought about healthy people.

Lilly: 40:37 Yes, well they’re important to write for sewer and it’s, and it’s interesting because you know, at some point, unfortunately in our lives, most of us or all of us will become patients. And so getting actively involved in research, we certainly have a number of people on our platform who maybe are healthy participants because they’ve seen loved ones who have been through something and they all still want to be able to give back.

Janet: 41:00 Okay, great. Well, I’m thrilled to have finally had the chance to talk with you, Lilly. And I am sure to put all of your LinkedIn and social links in the show notes for this podcast so people can find out more about the Savvy Cooperative and folks. Of course, it’s Get Social Health.com if you happen to be listening on a podcast APP, you can come on over to the website and get all of this information.

Lilly: 41:22 Well, thank you so much for having me, Janet. I love the work that you guys are doing. You’ve brought together, you really created such a vibrant community of health care professionals and I am honored to be a part of it and look forward to continued collaboration.

Janet: 41:39 Thank you, Lilly.

Announcer: 41:41 You’ve been listening to the Get Social Health podcast. This show notes are located at getsocialhealth.com to join our healthcare social media journey. Follow at, Get Social Health on Twitter and start a conversation.

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Launching The Savvy Scribe Podcast

February 26, 2019 Janet Kennedy 00:20:06 Comments Off

Announcing The Savvy Scribe Podcast!

The Healthcare Marketing Network is proud to add a new podcast to its list of healthcare podcasts. Hosts Carol Bush, Managing Editor of the HMN and Janine Kelbach, Operations Manager of the HMN invite you to tune in to a new podcast celebrating and supporting the life of a freelance healthcare writer. As the host of the Get Social Health Podcast, I was thrilled to have my Healthcare Marketing Network colleagues join me in the podcast universe.

To kick off their first episode I interviewed them to find out why they decided to launch a podcast and what they plan to cover. Give a listen or drop in at the timestamps in the transcript below.

Interview Transcript

Janet: 00:00 Welcome to The Savvy Scribe, a podcast for freelance healthcare and medical writers and creatives who want to grow their businesses. Your hosts, Carol Bush, and Janine Kelbach will cover a wide range of topics on writing, sales and managing your freelance practice. Podcast episodes will feature interviews, inspiration, laughter, and important information to help healthcare freelance writers. The Savvy Scribe is a production of the Healthcare Marketing Network. Now, let’s join the conversation.

Janet: 00:31 Well, this is exciting. It’s the very first episode of The Savvy Scribe podcast and I want to be very clear. I’m not The Savvy Scribes in this situation. It is my partner’s Carol and Janine Kelbach. They are my partners in the Healthcare Marketing Network. They are the writers in our organization and I’ve been bugging them for a really long time about sharing their expertise. They know so much, so I finally talked them into doing a podcast. You are listening to the inaugural episode of The Savvy Scribe podcasts, and I guess I should say welcome to me to your podcast.

Carol: 01:12 I love that Janet. Oh my gosh, this is Carol. For those of you who don’t know me, I’m the managing editor and as Janet said, partner with the Healthcare Marketing Network and I’m beyond excited that we have you in our back pocket all your podcasting skills, tips and tricks. Definitely, you have been coaching for a long time and we finally took your advice.

Janet: 01:35 Janine, what do you think about starting your very first podcast?

Janine: 01:38 I am so excited. A little nervous because we all are new at this except you, Janet, you are the expert in this field for sure. Carol and I have been practicing, scripting, and thinking of topics and it even makes us more excited.

Janet: 01:53 We know what I work with you in the Healthcare Marketing Network. One of the things that amaze me as you are both nurses and you taught me the true meaning of the word “workflow”. My background comes from “wing it” and you all are not that way at all and so everything is scripted and planned and organized and it’s interesting because I have very much the idea of, oh, let’s just jump in there and see, but that’s not the way you guys operate at all.

Carol: 02:23 I think it’s that preparation favors the prepared… but definitely it does come from our nursing background and workflow. Probably the whole care plan where we’re assessing, diagnosing, making the interventions. Yes, definitely we want it to be a conversation and bring our community and our colleagues, healthcare, freelance writers across the globe actually resources that are going to take their business and their craft to the next level.

Janine: 02:57 But in nursing, it’s easy to get distracted and pulled into different situations, so prioritizing is always the top of our list. That’s why we do the scripting to prioritize what’s important are actionable steps and whatnot.

Janet: 03:11 Well, believe me, it’s not a criticism and I think I can do a lot better if I organize my own podcast with bullet points and the topic. Tell me a little bit about starting a podcast. What is it that you actually want to share with your audience?

Carol: 03:28 As I alluded to a little bit earlier, we want to share that actionable information that’s going to help our healthcare freelance colleagues take their business and their craft to the next level. and I think action of bold as Janine related to is really what we want to come across….. real information from our experience building our businesses as healthcare professionals who are also launching a freelance business. We want to also source the wonderful knowledge and experience of our vibrant community. We have a community of over 600 healthcare professionals who are also freelance writers and creatives, so we’re really looking for practical information, tips, tricks, and a lot of humor too!. We were in it to have fun, so we want it to be actionable in every episode. We want folks to be able to take something away and apply it into their own freelance practice.

Janet: 04:38 I know you’ve planned some very specific topics to address on your podcast, so what kinds of things will you be talking about?

Janine: 04:45 We’re going to talk about online presence, building your website or portfolio tips and showcasing your skills, productivity, and organization, which is personally my favorite topic. Social media tips, and tools that we use in our business and scheduling platforms. The craft of writing, like how to write and the business of writing where you start your own freelance business.

Janet: 05:07 Why did you pick those specific topics to focus on?

Janine: 05:11 I think because those are the questions that we usually get from people. With over 600 people in our community, we’re constantly getting questions from different people and usually, I should say the most health care professional questions we get are about starting a business. But, everything else wraps around that so well first to even start a business on writing. Do you even know how to write? So, yes. It really goes back to the basics and then building from that point how to build your website, your portfolio and things like that. I’ll go around the business of writing.

Carol: 05:44 One thing I think is interesting that Janine pointed out, regardless of experience level, we can have new writers who are interested in starting a business, but we also a lot of questions about managing business negotiation, networking, how to raise your rates, how to hire and fire. Yes, fire clients from those freelancers who have been in business for several years so it doesn’t really matter. Um, the topics are really important whether you are a brand new freelance writer or someone who has been in business for many years. People that are looking at ways to take their experience and expertise to the next level

Janine: 06:33 And, everybody, the work is there. There is no competition because there’s enough work out there for everybody, which is always, I think the newbies fear is, well, these people have so much experience. Will I ever get a job? Absolutely. You will.

Janet: 06:46 No. That was one of the things I was going to ask you is what makes a healthcare writer unique from just a writer?

Janine: 07:03 Being a nurse has helped me build my writing, not only because of the content expertise where I come from, but that I can speak in the language that patients understand, so unlike somebody who’s a very elite scientist that doesn’t have patient connections, I’m constantly teaching patients, constantly educating co-workers, and even you know, my mom on different medical conditions that when we speak in a layman’s term for patients and for readers, it’s an easier way to write.

Carol: 07:39 And I’m just going to wrap it in a bow by seconding that and it really relates to every discipline that are in the healthcare professions typically are really good at teaching and educating really good at telling the story that narrative. Since we all are healthcare professionals, we love science. We love evidence. Clients are begging for people who can craft a story, relate to patients, educate the general public, and it’s wrapped up in facts and evidence, not fake news.

Janet: 08:19 Well, let’s talk a little bit about the format of your podcast and I will say, based on my own experience and the fact that it’s my own podcast, I can do whatever I want whenever I want, but generally speaking, what kinds of things will you be in including in your podcast?

Carol: 08:33 Here’s where I think it’ll be a tenant were both very upbeat people and our favorite thing to do while we’re listening to a podcast is walk, so we really have picked something very energetic and I hope our tone comes across as being energetic because as healthcare professionals, we want you to be healthy and get up and walk, stimulate your brain function. I’m very excited because we’re going to be asking our community to participate. We’re going to feature them as guests, but they also get to be featured by leaving us some voicemail messages on our website, Healthcare Marketing Network.com. They’re going to be asking questions and we’ll be able to feature those in our podcast as well as every single episode. We’re going to, at the very beginning, give particular shouts out to successes that our tribe have experienced in the last week,

Janet: 09:35 So it sounds like an opportunity for some members of the Healthcare Marketing Network to get a little spotlight shone on them.

Carol: 09:43 Exactly, and that’s what we’re all about as well. Within our community and the podcast, we’re about giving support, resources, action to take one another to the next level or one another’s businesses to the next level. As Janine said, we’re not about the negative. We’re all about supporting and one of our motto’s is “Rising tides lifts all boats”, so we’re definitely looking to amplify our community and the profession of healthcare, freelance writers.

Janet: 10:19 I think that’s incredibly exciting. I think that one of the voids that you feel is helping people who have one career, one level of expertise, expand that and be able to share that out. A lot of folks in healthcare really want to share their stories. They’re just not sure how to go about it and I’m curious about the skill of writing. Do I need to have an English degree before I got my medical degree? How much knowledge about the craft of writing do I need to consider myself a writer?

Carol: 10:58 Janine, Do you want to tackle that one first?

Janine: 11:02 I do not have an English degree or a journalism degree. I just have a nursing degree, not just in nursing school. You learn to write a lot. I think that prepped me for writing, but truly writing is a craft that you build yourself, so it’s a learning process. Just like when you’re in nursing, you have to do continuing education hours. You have to always build yourself in your profession of a writer as well. As a writer who’s been writing since 2015 in my business, I’m still always learning different ways to structure in different ways to make my writing better and personally I still use an editor to look at some of my work because I’m not an English major so I always want somebody to look at it and there are so many different types of writing. From copywriting to sales writing and plain ol’ blog writing. So it’s definitely a craft that you always need to keep working on. That doesn’t mean you can’t get started though as a beginner.

Janet: 12:04 I think the community aspect of the Healthcare Marketing Network and what you’re doing here is probably the most important thing that you’re offering and that is the opportunity to learn, to share and get support from others.

Carol: 12:19 That is exactly right. That even could be, I think, Janet, the mission actually is the mission of our community, but secondarily, the podcast gives us that opportunity to just reinforce it and put together some resources as well because obviously, our podcast is going to be hosted on our website, but those actionable items, every episode, we want to have it packed with either resources we have used or are tribe members have used or a downloadable that folks who listened to our podcast can take away and apply immediately in their daily business.

Janet: 13:02 I love that idea that you are actually giving people tips, tools, checklists, whatever, that they can start to use in their own business. I think that’s really cool.

Carol: 13:13 Yes.

Janet: 13:15 All right. I know one of your sections in your future podcasts will be giving shout-outs to the community, so I’m going to set you up here so I know you have a few shout-outs ready to go. So why don’t you tell everybody about the great things happening in the community?

Janine: 13:32 I just posted, hey, we’re going to be doing our first podcast. Does anybody have some amazing things they’ve done this year and the responses were amazing? This is why I love our community so much, but I just picked three random ones and please go to our website and leave a voicemail because we can definitely feature you on the next one. But let’s start with an Anne Llewellyn. She finished up her fourth book titled “Second Acts”. She invited 20 plus nurse case managers to share how and why they got into nursing and the impact they have made on the profession. That’s pretty cool. And then it’s going to be released late February, early March. She says “stay tuned”. Allison Flynn, she got her first article published about postpartum warning signs. So that’s definitely what I read because being the OB nurse in me, I loved it. Good job, Allison, and keep going. I mean the first is that that just opens up your mind and oh my gosh, I just got paid for something or even if you didn’t get paid for it and you just got published, it just feels amazing. And then our friend Deanna Gillingham, she finished up her, foundations of case management course and she laughed because she said it only took me a year. But that’s an amazing thing that she’s been doing too. She helped me publish my first book this past year. So shout out to Deanna because she’s, she’s great. She really is!

Janet: 14:57 That is also a good example of the breadth of the community from an experience both life experience and work experience. We do have everyone in the community from a first time published to fourth book to developing a full online course. And Deanna in particular, who we have featured in some sessions inside the community, she actually went from zero to 100 percent freelancer based on the work that she did in writing. And her story is amazing and I know you plan to talk to her in a future podcast episode. So tell me a little bit. We’re going to do a teaser here. What kind of people are you going to bring on as guests in future podcasts?

Carol: 15:44 Yes. Well, I’m very excited because not only are we going to interviews some of the folks within our community, so this would be, for example, Annie Beth Donahue, who is our Writer Support Specialist and does a lot of coaching for healthcare, freelance writers on the craft of writing and one of her specialties is keying in on a creative brief from a client and identifying or finding your writer voice or I following as the case might be your client’s voice. Also, we’re going to be interviewing some of our previous clients individually as well as with the Healthcare Marketing Network. So for example, my managing editor friend Lauren Green, we’re going to have her on and she’s going to be sharing with us some secrets that she wishes freelancers knew about healthcare specific managing editors and how to pitch elements like that. So were. Those are just a couple of the examples of people that we have lined up for the next several months.

Janet: 17:00 Oh, I’m looking forward to that. I always learn every time I hear you all have conversations. Now before we wrap up, there’s a couple of things that we do want to do and that’s one is tell those folks who are not a member of the healthcare providers community yet, how they can join us. So who wants to tell people what they can do to become a part of this community?

Carol: 17:23 If you’re a healthcare freelancer or you’re a healthcare professional and you’re curious about freelancing, all you have to do is go to Healthcare Marketing Network, that there’s an information button just for writers. You can click join now, tells you a little bit about our community. Join now will take you right to our Facebook group and we’ll get you started sharing, learning and connecting there.

Janine: 17:51 It is a closed group so you will have to answer a few questions just to get in the doors. If you give us your email address, you’ll be on our email list and we periodically send out information in that to give you job opportunities and shout-outs and whatnot. So stay tuned to that as well!

Janet: 18:10 Alright, and I have a couple of tips. Number one is making sure you fill those questions out because otherwise, you are going to go into the, “you didn’t care enough to tell us about yourself, so you must not care enough to be in this group” bucket. And the second thing is this is a group intended for healthcare writers, a place where they can ask questions in a safe environment, some of which are going to be about clients and working with clients. Therefore, if you look like a client, you’re probably not going to be brought into the group because we really wanted to support writers. If that’s the case, if you have a little bit of a, I know you right, but you also potentially could hire writers. That’s when I’ll be reaching out to you because that’s my role, so we don’t mean for you not to feel welcome in our group, but our group is specifically for healthcare writers who want to improve their craft and build a community. So if you are interested in hiring writers, just reached out to me directly to me, [email protected]. Alright, and then one last thing before we go, Janine, I know you’ve got a little teaser on what the next episode is going to be about. What are you going to be talking about next time?

Janine: 19:19 All right. And our next episode you’ll learn about setting goals and taking action throughout 2019. We look forward to sharing strategies to rise above the crowd and make your writing more visible, more desirable, and more enjoyable to readers and healthcare clients. We really appreciate you guys taking the time to join us today and we’ll see you next time. Now, go get your write on!

Janet: 19:42 Thanks for listening to The Savvy Scribe, a podcast for freelance healthcare and medical writers. For more tips and links mentioned in the podcast, go to Healthcare Marketing Network.com, and don’t forget to join Carol and Janine for future power episodes and great conversations here at The Savvy Scribe.

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