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Walk the Talk. Person-First and Co-Production.

By May 23, 2021February 21st, 2022Advocate, Consumer, Informaticist, Podcasts, Researcher
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Taking Person-First Safe Living in a Pandemic on the road with Health Communication students at The College of NJ leading to Care Against COVID on Instagram

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Episode Notes

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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings

to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Person-First Safe Living goes on the road 02:14. 2

Partnering with students 03:49. 2

Expectations 05:23. 3

Begin the Beguine 06:35. 3

Worry about family. Noticing depression. 07:26. 3

Stressed. Stay sane. 10:18. 4

Am I so different? 11:04. 4

Food insecurity 12:15. 5

Logo, Labels 13:59. 5

Convener, Content-Generator, Tracker – Working Together 15:43. 5

Choosing Instagram 17:40. 6

Professional polish on a dime or less 18:55. 7

Questions people ask 22:11. 7

Personal Growth? 23:11. 8

Data – Taking a pulse 25:28. 8

Inflection point – When to post 27:50. 9

Teamwork Ain’t Easy 29:08. 10

Learning new skills 31:31. 11

Lessons learned from outside the bubble 33:43. 11

Reflection 39:17  12

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The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee.

Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach Kayla Nelson @lifeoflesion

Inspired by and grateful to Michael Mittelman, Kelly Reeves, Natalka Slabyj, Sameemuddin Syed, Maria Michaels, Julia Skapick, Sharon Hibay, Cynthia LeRouge, June Levy, Victoria Lyon, Joy Mayer, Ellen Schultz, Judy Thomas, Mindy Hangsleben, Edwin Lomotan, Lacy Fabian, Kristin Delwo, Brian Alper, Kayla Nelson


The students’ campaign
TCNJ Twitter: @TCNJ_PubHealth
Communication Department Instagram

Related podcasts and blogs

Covid-19. People Living Safely.

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show


During my career, I served twice in the C-Suite (C means Chief or senior leader in an organization). At first, a heady experience – Jeesh, I’m a real boss! When the honeymoon was over, I noticed that I was mostly talking to the same people – other people in the C-suite, by its nature, a small group. We all knew how the others thought. We understood the pecking order.  There’s always a pecking order not necessarily related to titles. I craved bringing in new voices, shake things up. Perhaps we would make different decisions listening to other expertise, perspectives, and lived experiences? I never learned to sell that kind of inclusion.

Now, as a patient-caregiver activist, I strive to bring the voices of end-users (patients, caregivers, and point-of-care clinicians) to the table.  When successful, the conversation and the learning change. In the Person-First Safe Living in a Pandemic initiative I’ve spoken and written about on this podcast, we sought voices, expertise, and lived experience different from we privileged academics and professionals.

Person-First Safe Living goes on the road

For those of you new to Person-First Safe Living in a Pandemic let me fill you in. A small, mighty band of volunteers asked, how can regular people – our family, our neighbors, our coworkers, our cronies – find up-to-date, trustworthy answers to questions they have about living safely in a pandemic? Finding answers when they have questions in a manner useful to them.  Person-first means we start with understanding people and hearing their questions and concerns and then looking for the answers.  A two-legged cisgender, old white man of privilege with chronic conditions may have different questions, look for answers in different places, and trust different sources than an urban ICU nurse caring for COVID-19 patients while living with his mother with early dementia, or a 30-year-old Muslim mother with Sickle Cell Disease. We quickly found a gap, no, a chasm, between questions people ask and the evidence-informed guidance findable from sources – people, websites, popular, and social media – they sought for answers. Layer on the many continuums of trust issues – circumstances, experience, values, preferences; risk tolerance, and comfort with uncertainty and critical thinking – and you can feel the problem.

Partnering with students

When my friend and colleague, Ileana Balcu, professor of the New Media and Health Communication course at The College of New Jersey (TCNJ), invited us to share our project with her undergraduate class, we eagerly accepted. Ileana and I have worked together on many informatics, health communication, and patient-caregiver activist projects.  She’s one of my most frequent go-to people. Professor Balcu is a Project Manager for Dulcian, a database systems company, a patient, mother, caregiver, digital health enthusiast, and medical practice back-office software developer. She helps her community use technology to live healthier lives and communicate better. Ileana is a Lifetime Member of The Society for Participatory Medicine. In the class New Media and Health Communication, the students get immersed in digital health technology. They explore and discuss sources of information, online support groups, telemedicine, mHealth, and advanced communication tools: Virtual Reality, Artificial Intelligence, Edutainment, and Games for Health. At the end of the course, the students are enthusiastic about the myriad of digital health technologies available and new media’s capacity to help people be healthier and more connected to their clinicians. They are also aware of the barriers and limitations created by the healthcare system’s context.

Laura Marcial, my partner in crime, and I introduced ourselves and Person-First Safe Living in a Pandemic to the entire class over two sessions. We asked students to seek answers to questions they had about safe living on the web and enter those resources into our database. Professor Balcu offered her students the choice of our initiative as a course project.  Four of the twenty students enrolled joined us. Those four designed and executed their project with minimal input from Laura and me. You’ll hear, Care Against COVID, that’s the Instagram channel the students created. You’ll also hear TCNJ. That’s The College of New Jersey.


Health Hats: Laura, what were you expecting when we entered working with the college students? What were you hoping for?

Laura Marcial: I was expecting that they might be interested. They might get engaged. I didn’t have high expectations about that, but just that we might express some of our enthusiasm, interests and spark some excitement in them. I didn’t have a good sense for what they would want to do, but I think the social media angle was in the back of my mind, just having 16- to 20-year-old kids in my own house right now.

Health Hats: I was hoping that our database would get populated with resources that college students might find interesting. That was it.

Laura Marcial: I was glad that they were enthusiastic about getting the resources populated. I think they thought of that as low-hanging fruit, easy to do, easy to get graded for. I was surprised about the level of enthusiasm and the direction they took—even those posts. But I was even more surprised that they went beyond that.

Begin the Beguine

Four weeks after the students began work and a week before the class ended, Professor Balcu invited us back to read, hear, and record their experience and reflections. Laura and I listened for several themes: Why did they choose this communication problem for their project? How did they land on their topics? What was their experience working together on this health communication journey? And how did they surprise themselves over their month’s immersion? Of course, we also listened for lessons we might learn from their experience. You’ll hear from students Thomas Lillja, Evan Scarduffa, Michelle Zeron, Joshua Simpson, and Professor Ileana Balcu.

Worry about family. Noticing depression.

Health Hats: How is it that you got to the place of, ‘Yes, I want to participate in this.’ You had other options; you chose this. Tom, you want to start?

Thomas Lillja: When I started living in quarantine, my folks had many preexisting conditions.  My dad suffers from diabetes, while my mom suffered from hypertension. They took living in quarantine very seriously, as did I, because I didn’t want to transmit the disease to my parents. And when I started living in quarantine, I noticed that I was having a lot of emotional struggles; I wasn’t officially diagnosed with it; I felt like I was suffering from depression because I just didn’t feel all that excited about just stuff anymore. After all, I consider myself a very extroverted guy. I thrive off human interaction. Because of the pandemic, this means that I’m not going to be going on campus to study and participate in campus activities and because I worked as a lifeguard, and I loved that job. And because of the pandemic that put me out of that job, that meant that I couldn’t go over to the pool to lifeguard and have a good time with my friends. Just given everything that I’ve dealt with over the past couple of months, I just really wanted to help other people if they were struggling with living in quarantine, too. So, I figured that partaking in the Safe Living During a Pandemic initiative, it could help make the most out of living in quarantine that means providing mental health apps, forms of telecommunication so that people aren’t physically going to their doctor during the pandemic, just small stuff like that.  I was just really hoping that by signing on to do this project and by promoting different forms of health communication to live during the pandemic safely, I can not only do my part to help stop the transmission of COVID-19 but also help people who might be emotionally struggling during the pandemic too.

Health Hats: I liked that. I also hear in what you say is that there were benefits for you personally as well, in terms of your satisfaction with life and your school experience. One of the reasons I podcast is that I’m a selfish guy, and it’s meaningful work for me. When you can combine the stuff that helps you personally and then helps the larger community and your family, that’s a win. So, thank you for that. Evan. How about you?

Stressed. Stay sane.

Evan Scarduffa: Personally, for me, this time during the pandemic was probably the most stressful time I’ve ever been in my entire life. Just pressure on pressure from school and family and just everything going on, having to find jobs, and getting out. Even managing relationships, I felt, was tough during COVID because you have people that don’t take it so seriously. And then you have people that take it seriously. So, I felt like I’ve lost some friendships from the pandemic, not seeing people as much. But then also you find out who’s close to you by connecting online.  So, it was a big adjustment, and also like with everybody else I’m sure I’m not the only one going through that. So, I think it’s very important to spread like the kind of awareness and tools to use, to stay sane during this time. It’s very difficult.

Am I so different?

Michelle Zeron:  So, my part in the care against COVID Instagram account was to get a better understanding of what others think as well and seeing if there’s anybody else that’s like me and wondering what can I do to help myself and what can I do to help my family? So, with that being the main idea for my part, I decided to base my experience and like everything I understood through the Instagram polls. So, I would make sure I put up that was interactive, seeing who could respond if anyone had questions or concerns that they would like to know more about. I was able to help respond, do some research as needed.

Health Hats:  Was there a specific topic that you were covering or was it general what do you want to know about COVID.

Michelle Zeron: Mine was what are you doing to help you’re like help yourself and your family? What precautions are you taking personally? Or what precautions can you take to help someone else? Just wear a mask to protect yourself. That was like my whole thing.

Food insecurity

Health Hats:  I asked Josh if food insecurity was an issue for him.

Health Hats:  I want to ask a different kind of question.  I’m interested in the food insecurity angle that you took. So, do you think that for students not going to class, meaning they’re not going to a cafeteria or something with more food insecurity in quarantine time, usually a student?

Joshua Simpson: I would say so. Yeah, I know that there’s a lot of students that depend on food pantries. It’s a different experience than when they’re back home from large family models, where they might be as one of seven children in the house. Or something people don’t necessarily have a secure living environment, going from house to house as possibly homeless. So, the resources provided on campus are huge for kids like that. Even for me back home, I’m not saying that I’m not living in a secure household, but I’m not like a chef even still. I don’t cook food that often. There’s a lot of healthy options here that aren’t readily available for me back home. For students on a large picture, I can see food security being a pertinent issue that they’re not necessarily thinking about. Like it’s not one of the more surface area issues, but it affects everybody in every sense.

Health Hats: Yeah. Especially if you have kids that go to school and they’re not going to school, and they don’t get their breakfast. That’s a big deal. That’s a lot of people. Interesting. Thank you.

Logo, Labels

Health Hats: The students chose to select a different name for their Instagram channel.  Not Person-First Safe Living in a Pandemic but rather Care Against COVID.

Thomas Lillja: I’m the person in the group who came up with the name Care Against COVID and the logo where the guy gave the thumbs up wearing the mask. That guy asset wasn’t created by me. It was an asset that I found on Canva. Coming up with Care Against COVID, I was brainstorming over the Recharge Week instead of spring break. An earlier name idea was Care Against Corona, but I didn’t go with that because it didn’t sound all that good, not to mention it could also cause copyright concerns with the people that make Corona beer. I decided to modify it to Care Against COVID. It was such a simple name, it’s memorable, and it gets the point across of what we’re trying to do.

Health Hats: I think the having against is a good bridge word. It’s got meat.

Thomas Lillja:  It’s funny, you do mention that because I made a conscious effort to pick against instead of for, because when you say care for COVID, it sounds like you’re for COVID-19, which is not the case. Care Against COVID does make a very clear and explicit statement that we are against the spread of COVID-19. And what we’re doing is to help promote that agenda.

Convener, Content-Generator, Tracker – Working Together

Health Hats: Yeah. That’s great. Ileana, what about you? What do you want to ask?

Ileana Balcu:  I want to ask how you guys worked together. So, did you guys run into any problems, or it just went smoothly, as opposed to any other project?

Evan Scarduffa: At first, one problem we had was deciding when to post and what hours our viewers were active the most. We posted it a couple of times in an afternoon, and it wouldn’t get the most likes or views. But then we figured out that from six o’clock to midnight was our largest audience shift. When we posted, then our posts started getting more interactions.

Health Hats: Wow. Interesting.

Thomas Lillja: Yeah. To piggyback off that, one of the things we encountered during the project was figuring out who is doing what. I was under the impression that we were all going to be making regular Instagram posts.  It was hard to coordinate when we would be posting what? We decided to assign roles where I would be making the regular posts. Joshua would be handling the analytical side of things. Michelle and Evan would be handling the story posts. I also did struggle to figure out what would be a good frequency of posts? During the first week, I was making regular posts daily. We had the concern that we might get old to our audience. We decided for the second week to focus more on story posts instead of regular posts. That was a huge detriment to our interactions. Eventually, we decided for the third and fourth weeks. We would be doing a mix of normal posts and story posts every other day. There would be a story post that focused on giving a poll for our audience. It took a while, but we eventually got there. I’m glad we were able to figure out a schedule that worked best for us.

Choosing Instagram

Health Hats: So, you guys set up this Instagram account? You started populating it. How did you get to the place of deciding that was the channel that you were going to develop to communicate?

Evan Scarduffa: My focus was more on college-age students.  I think that’s the best thing for me to focus on right now. Most college students have an Instagram account and just say if I want to focus on an older population, I go on Facebook or Twitter. Still, Instagram really was able to reach out to the TCNJ community and specific and also college-age students. Not having anybody heard about it even before, and it’s not like we’re on campus to spread awareness of the page. Thomas, I don’t know if you want to add to that.

Thomas Lillja: I originally wanted to aim for an older audience, as far as the campaign went. But I was also perfectly fine with doing Instagram, too, because even though a heavy amount of college students uses Instagram, of course, there’s still middle-aged and elderly folk who also use the platform.  While there is the bias towards college students, I still think it’s essential that we get the message out, regardless, because COVID-19 has affected the lives of so many different people of so many other age groups.

Professional polish on a dime or less

Health Hats:  The posts you did are engaging. Frankly, I was surprised how polished it looked. When you like described the amount of time, you spent on it. I thought that the polish and the quantity of what you were able to include pleasantly surprised me. Did you already know how to do all this? How did you get how did they get to look so polished?

Thomas Lillja: You’re talking about the normal posts, not the story posts, right? This social media campaign was a natural learning curve for me because when working on campaigns beforehand, I used either Google Drawings or the publishing tool that comes with Mac computers, Apple Pages.  The funny thing about both apps is that they represent two X, two vastly different sides of the graphic design spectrum. Like with Google drawings, it represents the side of the spectrum that’s incredibly primitive and doesn’t have a lot of power. Meanwhile, with Apple Pages, the program is so powerful with what you can do with it. It isn’t worth wasting your time using this program on making something like Instagram posts.  One of our classmates who was also running a campaign told me about this great little website called Canva, where you can pick pre-made templates for Instagram posts, and you can modify them to your liking. I found an Instagram post template. I changed it to fit with the campaign design that fit Care against COVID just simply modified it—and then added information about health apps that I would find via research into these posts, templates. And then after that, it’s just a matter of showing it to a couple of other people to see what they think, downloading said posts, and then airdropping them into my phone, which I would then post onto Instagram.

Health Hats: Great. How about you, Evan?

Evan Scarduffa: Yeah, Tom did a great job with that. I’ve only heard of Canva one other time, and I wasn’t the best user, but I mainly focused on reposting stuff through our stories. Either from the CDC or the World Health Organization, just for a quick little read because their information is great. And since I’m not the best with creating posts, I figured that would be a great way to spread information.

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Questions people ask

Health Hats: Laura and I asked about the questions students asked about COVID.

Michelle Zeron: What are the ways I can work towards protecting other people, even though I’m already vaccinated? What research has begun to see if children will eventually be eligible to receive vaccines? How do you feel that you’re taking the step in getting vaccinated? I got responses for being that it makes my family feel safer, eventually. The quicker everyone gets vaccinated, the faster we can return to normalcy.

Health Hats: Did you have any fun doing it?

Michelle Zeron: I did. I liked being able to see how everyone felt. I did even ask questions about if you aren’t vaccinating, what is your reason for not getting vaccinated? I enjoyed getting a different point of view, even though I may not have agreed with it. It still allowed me to understand why people think the way they think.

Personal Growth?

Ileana Balcu: What was your personal growth in this? Are you happy that you participated? Do you feel a purpose from this?

Evan Scarduffa: Sharing resources with other students or even friends because I know if you’re going through something. Then you don’t know who else is going through it because people usually hide that pretty well. So even just like putting the information out there, I think it is a great thing to do.

Thomas Lillja:  I learned how to synergize with a team when running a campaign. I’m not sure if I mentioned this, but I’ve done a social media campaign before for a social media class that I took as part of my communication degree. That was done entirely by me.  By doing this campaign with other people, I learned how to do a project of this caliber, where it’s a commitment over a long period. I learned how to run social media campaigns, where the topics are a lot more serious. The previous campaign that I ran for my social media class was about my pets. That’s all good and fun but doesn’t seem all that serious, and it doesn’t seem good for a portfolio to show to a potential employer.  By doing Care Against COVID, I came up with great content that looks professional and is serious and could be beneficial to someone who is struggling with something serious.

Laura Marcial: Did you feel that any of the work helped bridge generational gaps questions or responses, the way you posted anything like that?

Michelle Zeron: Yes, I did, because I realized that most people who responded had been people in college and were concerned for their families, even their grandparents, aunts concerned for their nieces and nephews. It seemed to be helpful and understanding everyone from different age groups. Even generations have the same idea of what they want, and what they’re doing is to protect everyone, not just themselves.

Data – Taking a pulse

Health Hats: Josh showed us graphics that 80% women following the account, proportionate to TCNJ demographics of 60/40 woman to male ratio. Women perhaps are more interested in COVID relating issues. About 120 people followed the account in a week. I’m interested in the data because, as a podcaster or somebody on social media, I mostly find the data helps me almost not at all. I never know what it means. Why should I care? What was it you were looking at? What were the things that make sense to you to look at?

Joshua Simpson: Instagram provides a set amount of free data metrics. Three of which are very important, to assess your engagement rate and what audience you’re reaching. The one I was most interested in was Reach, which is like another data metric called Impressions. An impression is if a viewer looks at an Instagram post. If they swipe down, scroll at it, that’s an impression. While reach is if someone sits on a post. It doesn’t give you another reach metric of the same person looks at a post, unique identifiers. The greater your reach means, the more people have seen it. Impressions are if anybody has seen it, the same person can scroll up and down that same post. For a smaller campaign like ours, it’s pretty good to see who exactly is accounting for the reach to understand what audience we should be looking to target more.

Laura Marcial: Were there any other data surprises you want to call out for us, things that you didn’t expect to see or we’re pleased to see?

Joshua Simpson: You can see that there’s one post that reached a considerable amount of people April 13th post.

Health Hats: That was which one, the April 13th posts. What was that one about?

Joshua Simpson:  It was about the Johnson and Johnson vaccine and how it got canceled.

Health Hats: Yeah. I can remember seeing that one. Yeah.

Joshua Simpson: Yeah. I’m pretty sure it’s Thomas who posted that. And it was interesting because it was current news, all the other ones are more just like resources and all these other relevant issues. But this was like a huge current news event. And that’s probably why it spiked so much because it was such a large event, and a lot of people could relate to it.

Inflection point – When to post

Health Hats: I’ve never thought about what time to post. I post what’s convenient to me. And so now you got me thinking about that. Okay.

Michelle Zeron: Timing was so important because that’s when we received like a certain amount; even when I was putting my polls out, I made sure that it was by 6:00 PM on a certain day, because that’s when you notice you’d have the most views or when people are most active on the social media.

Health Hats: Interesting.

Joshua Simpson: Also, to add onto that point of timing. I felt like it was tedious to do necessarily what I want to say implement originally. But in addition to the timing of when to post, the timing of what to post as well. Certain things bring certain intensity throughout the day. I remember reading an article saying specifically social justice issues. So, like food security, for some reason, had blown up on Saturday at 3:00 AM. It’s crazy how people have done this huge data metric analysis of all the different sorts of topics. And like when they get the most attention. I find it interesting to see that people have, for some reason, some set form of more attention towards different topics at different times of the day. So larger accounts, if you’re trying to get that retention, I’d say focusing on when to post and what to post at certain times of the day.

Teamwork Ain’t Easy

Ileana Balcu:  So how did working on this project together? How was it difficult, and also, how was it rewarding that you guys worked together?

Michelle Zeron: It was difficult in the aspect where we couldn’t meet together, and we couldn’t brainstorm and put our posts together and our thoughts. It was hard because everyone now has such different schedules, and being that we’re so far apart, it just conflicted in like our ideas. I think that we could have done even better if we were together and in person.

Ileana Balcu: So how did you guys communicate?

Michelle Zeron: We communicated through GroupMe. Some people met on Zoom. Most of the time, we texted on GroupMe, whether it was like, hey, I’m throwing a post-up today or make sure no one posts anything. Cause I want to post something on the Instagram story because we wanted to make sure when we put our posts out for the day, it would attract the most viewers. So, we made sure it was like not too much, going back-to-back.

Health Hats: Great.  How could, how do you think you might use this experience in a year?

Michelle Zeron: I think with this understanding or experience, it’s using it more towards posting media. Suppose I decide to do an internship with like media aspect or even a health aspect. In that case, I’ll have a better understanding of how to conduct research, like after seeing the forms that we would fill out and giving us resources on how to understand, like whether we trust this source. And if it’s reliable to us, that’s something that I can bring with me later. Even, not just even next year, but like for my career and when researching something

Health Hats: You made my day. Josh, what about you?

Joshua Simpson: Learning from the difficulties of getting an audience was the hardest part. People that already have audiences in place can easily start side projects and get a huge following immediately. If Nike were to do something on the side and they immediately get a million people interested, but for us, people don’t know about us; we’re starting from nothing. They are learning how it’s a gauge audience retention and attraction. I feel like that’d be helpful in any sort of landing doing in the future with getting people to get involved and interested.

Learning new skills

Ileana Balcu: This is awesome. Especially with what Joshua just said, that it was my idea to throw you guys, my students, in the water and have you published things because I’m sure you were scared when you tried to do this, but then you notice that things are very slow and they it takes a while, and you need to make changes. And I hope that by now you are more prepared to start doing something like this. And I’m sure each one of you learned at least one new skill, how to use Canva or Analytics on Instagram or anything else I heard each of you learn something new, so I’m very happy. And I’m also happy to have had Danny and Laura worked with us this semester. Did we help you?

Laura Marcial: It was great to hear about your process. We shared some of your thoughts and your experiences with the broader group. We’ve been trying to create some surface area in the tools we’ve built. This extended that and gave us a chance to say to other organizations doing something similar. Hey, look, this can be done. It could look like this.  It can be powerful, even with a small intervention. So not too heavy lift. I think we’ve reached the point where we’re thinking about what the future holds for this kind of safe living and Care Against COVID. And it allows us to show a portfolio of work that. That touches many different aspects of where we were going with this trust label and this concept that people have trouble assessing resources and trying to prioritize them for use as it applies to them individually. So, it just seems like a significant extension of the work and it’s nice to reach out into this into a group or a generation that this directly affected in so many ways, but maybe not as directly impacted by the complications of COVID. So, it’s important to say and appreciate it.

Lessons learned from outside the bubble

Health Hats: Now we’ve done this, and what do you think we should take away from this experience? How do you think this informs first our safe living project, but also, the work you and I do is about person-first clinical decision support, which is only like a little playground for. So, what do you think have you learned for us immediately and for the larger picture?

Laura Marcial: I guess I’ll answer from a usability standpoint; they answered some questions about how user-friendly our form is, how we approached the trust label, how we’re capturing that metadata that we think is crucial to logging and managing these resources. That was interesting to me in a very discreet way.  I think they also answered the question that this problem had touched every age, every generation. That COVID is a hyper example of that. But it drew, I think, our attention back to the fact that we’re onto something. That there’s a big gap here and that it needs to be filled. Their desire and enthusiasm probably responded to our enthusiasm, but they could also see the connections they have had to make between generations, looking out for their parents or their grandparents. Trying to think about ways to live in their social bubble right now and how to get outside of it. I think those were all great pieces of information for us. Often, they reinforced that this is something important.

Health Hats: And so in the larger, this whole idea of person-first clinical decision support. What do you think? What’s the lesson for that?

Laura Marcial: We keep trying to bite off little pieces of this problem because the problem is so unwieldy. And one thing that we were able to do and connect on is that this idea of trust and this idea of critical thinking skills that people bring to the table or don’t need to be refined and changed over time. And that they might be more accessible from a computable standpoint than most of us assume they are. We close the loop on some of those things where COVID’s concerned using it as a hyper example. It draws us back to what we learned when we asked the question: Can we accelerate the movement from evidence to guideline to implemented CDS? I think we’ve continued to think about that.  We’ve learned more about how to communicate in a way, which ordinary people can relate to. I believe that experience with the students helped us see that from the outside, this group of young people. I think our reflection now is what struck a nerve. What struck a chord with them, hit a nerve, and made them feel that they could play a role that they could express their own concerns or interests that they could follow through on those and reach out to a broader community with what they’ve learned. Those are amazing steps we took with them. So, I guess I’m just saying that it’s still an unwieldy problem. It still needs to be compartmentalized so we can figure out how to communicate. What is this thing that we call person first CDS? What does it look like? How does it work? But we made some steps in trying to understand the problem better.

Health Hats:  I wish we could take 30 microcosms, just be as varied as we can imagine, even if we just think about the personas and trying to find small groups of people who would get a reward- like credits and see where they would go with this.  You and I were smart, and we are thinking outside the box. And I also believe we don’t know crap. At the end of the day, we don’t know crap. And I feel like would I have predicted that these kids in four weeks could put together some polished thing that in a grant might’ve cost a hundred thousand. Exactly. Did it like four people in a week on zoom or whatever platform they used?

Laura Marcial: I agree. I think they were also so excited about how they could use this experience, where they have applied themselves to a real-world problem for their growth and development, putting it on resumes, selling it to potential employers.

Health Hats: What was it that Tom said it wasn’t about pets. Exactly. Which is what he’d done before. As he said, this is real. This is important. It wasn’t just fun, even though it was fun. Yeah.

Laura Marcial: They found themselves engaged for reasons that mattered to them, which I think is great.


I’m delighted that we can walk the talk. Our student partners listened and then followed their own noses. Different voices, different approaches. I’m proud of us all.

So, what’s our ask? What’s next? We, small, mighty band of volunteers offer a gift to someone ready to take over from here. Find funding, replicate, or modify the person-first approach, develop a mechanism for crowd-sourced building of findable, trusted resources, test an automated algorithm for generating trust labels. Perhaps our work rings a bell, and you can use it to augment whatever you’re working on to help regular people find answers to their questions about safe living when the need them, where they look, in a manner they can use. We also welcome invitations to tell you more about our work and our process. Contact us at Onward. See you around the block.

Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health

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