Taking Healthcare by Storm: Industry Insights with Sheila Barnett, Kathy Wild, LaBasa Robinson, Tonda Devine & Sadiq Abdulai

In this captivating episode of Taking Healthcare by Storm, delve into the world of expert insights as Quality Insights Medical Director Dr. Jean Storm engages in a thought-provoking and informative discussion with Quality Insights' Sheila Barnett, Kathy Wild, LaBasa Robinson, Tonda Devine & Sadiq Abdulai about the upcoming long COVID virtual peer support series.

If you have any topics or guests you'd like to see on future episodes, reach out to us on our website. 

This material was prepared by Quality Insights, a Quality Innovation Network-Quality Improvement Organization under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services (HHS). Views expressed in this material do not necessarily reflect the official views or policy of CMS or HHS, and any reference to a specific product or entity herein does not constitute endorsement of that product or entity by CMS or HHS. Publication number 12SOW-QI-ARPA-011725-GK

Transcript

Welcome to "Taking Healthcare by Storm: Industry Insights," the podcast that delves into the captivating intersection of innovation, science, compassion, and care. 

In each episode, Quality Insights’ Medical Director Dr. Jean Storm will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys. 

Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania and the nation.

Subscribe now, and together, we can take healthcare by storm.

 Hello everyone and welcome to another episode of Taking Healthcare by Storm. I am Dr. Jean Storm, the Medical Director at Quality Insights, and today we're going to be talking about a topic that I have become very interested in, and I, I really think it is something that is very important right now. I know maybe it's a society where a little bit Fatigued in talking about COVID, but We're going to be talking about COVID in a different way and we're going to be bringing to light Some of the experiences individuals are having after they have an acute COVID infection so today we're going to be focusing on a Fantastic project here at Quality Insights, and it is aimed at supporting patients living with long COVID.

We are joined by five of my colleagues at Quality Insights. Um, I'm just going to say their names now, and after I finish the introduction, I'm going to let them introduce themselves. But today we're joined by Sadiq Abdullahi, Sheila Barnett, and Tonda Devine, Labasa Robinson, and Kathy Wilde. And like I said, I'm going to let them introduce themselves in just a moment.

But just to give a little background, long COVID is a condition that affects millions of individuals with lingering symptoms long after the initial infection has passed. And these individuals face a range of physical, emotional, and mental health challenges. And what we have found in the limited research that is going on that peer support can play a crucial role in these individuals recovery journeys.

So we're going to be talking today about This project that is starting at Quality Insights that's creating a virtual peer support group specifically designed for long COVID patients, which is, I'm super excited about. We're going to discuss the vision. The need, the process of launching this virtual support community.

We're going to be talking a little bit about stigma and how that kind of is worsening, uh, what these individuals are experiencing. So we're going to be letting our listeners know how participants can navigate their experiences with shared understanding, resources, and mutual encouragement. I'm so excited to get started.

So let's start by telling everyone What each of you do a quality insight. So Sadiq, why don't you start us off? Hi. Uh, thank you. Uh, happy to be here. Um, As you said, my name is Sadiq Abdullahi. Um, I'm a senior data analyst at Quality Insights. I conduct, uh, statistical analysis, uh, research, and, uh, I develop, uh, data applications.

That's basically it. Excellent. And, and Sheila. Hi, Dr. Storm. Thanks so much for having us on your podcast today. Um, my name is Sheila Barnett. I have been a registered nurse for 26 years. I've been with Quality Insights for approximately seven of those years. During that time, I've had the opportunity to take on many different roles, but currently I am serving as the Quality Improvement Specialist Lead for the Partnership for Community Health.

Excellent. And Tonda.

Hi, my name is Tonda Devine, and I am a community health worker here at Quality Insights. Awesome. And Labasa. Hi, my name is Labasa Robinson. I've been working with Quality Insights for the past three years as a community health worker, helping to improve health outcomes and connecting people to resources.

All right. And last but not least, Kathy. Hi, thank you, Jean, for having us all. Um, I am Kathy Wild. I'm a registered nurse. Also, I have been one for 43 years, and I've been here at Quality Insights for 38. I've worked on numerous contracts in both the hospital and physician office settings, and right now I'm excited because I'm also working on a project, um, dealing with COVID and flu vaccines.

Nation. Um, a lot of people don't realize they need to get an updated vaccine every year that specifically targets this year's virus strain. So what we're doing is reaching out to physician primary care clinicians, um, since patients trust and are more likely to follow their advice and trying to get them to help us promote the vaccinations.

I agree. Huge, huge topic right now, um, that a lot of people have a lot of strong opinions with. So it's good we're talking about it. So let's dive in. What was the initial inspiration for creating a virtual peer support group specifically for patients with long COVID? Well, Dr. Storm, the inspiration really came from recognizing unique challenges that people with long COVID face.

Many of them deal with the feelings of isolation, frustration, or even a lack of understanding, whether it's from their loved ones, employers, or even the healthcare system. Um, long COVID, like you said, is when people continue to experience their symptoms long after their initial COVID infection and it lasts sometimes for months or even years.

These symptoms can range from extreme fatigue, brain fog, shortness of breath, to things like joint pain, heart issues, and even changes in their taste and smell. Um, it's a big deal because it can affect anyone, even young healthy people who only had mild or asymptomatic cases of COVID. The condition is difficult to predict, diagnose, and treat, and that leaves a significant number of people struggling to manage their health while they are waiting for more research and better support.

We thought a virtual support group just felt like the perfect way to create a safe space where people could connect and share their experiences and provide emotional support to each other. It's also a great way to exchange practical tips on how individuals navigate their symptoms. Or just simple as accessing different resources, but for me personally, it was about building a community where people truly feel heard and supported.

I agree. I think that is one of the most important things. And, um, you know, if we're working towards this patient centered care model in healthcare, we need to do it with everything. Um, so definitely. So can you share? I know this is for Sadiq. Can you share any data that highlights the need for this kind of support?

Uh, sure. Um, yeah, for me, I, I think the, the data actually paints a sovereign picture of, of the state and impact of, uh, long COVID. Uh, if you look at the data, uh, nationally of the 134 million Americans that are indicated that they Uh, were affected by COVID or they had tested positive for COVID, uh, about 30 percent, uh, indicate that the party symptoms last for more than three months.

Uh, that is according to data from the household, uh, pulse survey. Which is a federal survey that, um, we would call a near real time survey because it's very current. So this is data from, uh, August to September, uh, of this year. If you look at the state of Pennsylvania, it's just around the average, which is, uh, 30%, uh, at the state level.

And then, uh, West Virginia is actually slightly higher, 34%. But then it's even more concerning when you look at the data a year before, uh, this period, which is, uh, August to September 2023. Uh, the national average basically increased by about two percentage points. So from 28 to 30 Uh, whilst virginia increased from 30 To 34 so that's a four percentage increase but in the state of pennsylvania Actually had a seven percent percentage point increase from 23 to 30 So it's basically saying that the situation has worsened in the last one year Uh, with about 10 to 15 percent reporting having these symptoms lasting six months to more than a year, right?

Uh, and then you look at how it affects, uh, the daily lives of Americans. Uh, national average, 80 percent of those, uh, with long COVID. Uh, say it affects their daily activities in some way slightly lower in Pennsylvania at 77 percent and much higher in the state of West Virginia at 96 percent. And then the subject of, uh, social isolation and needing support Uh, 51 percent of those surveyed indicated having feelings of, uh, depression and hopelessness, right?

Nationally, uh, the numbers in states, uh, the states of Pennsylvania and West Virginia are not, uh, significantly different. Uh, in terms of feeling lonely, at least, uh, 50%. Uh, nationally and in Pennsylvania and West Virginia, and then one in four nationally and in these two states indicate that they rarely or are they are never getting any social and emotional support that they need.

So in summary, the data, uh, paints a bleak picture, uh, and a situation that is, uh, getting worse over time. Uh, interestingly, earlier this year, uh, the Pew, uh, research conducted a survey that asked Americans About lung COVID and 50 percent said it was extremely or very important for health care providers, uh, to understand this problem, deal with it.

But then also, about 22 percent of responders indicated that they had never heard of the phrase lung COVID. So, it also points to the need to educate people, uh, about this, uh, uh, problem.

Yeah, I will say it's like a, it's a huge, huge, um, issue and you know, the data just really, really points to that. So, you know, just throwing this out to the group, how do you think this group, this peer support group will help alleviate the feelings of isolation and uncertainty that many patients experience?

I think that people who are suffering from these effects of long COVID, they do feel isolated. And I think that it's important that they feel included. So I think that participation in the group activities would help to give them a sense of purpose and that as they're in these groups and they're hearing others talk about the similar challenges that they face, it can help them to realize that.

Number one, that their feelings are common, but number two, that they're also valid. And I think that fostering relationships with others that can truly empathize with their experiences will help them to combat those feelings of isolation and uncertainty. Absolutely. I think that's so very important. So, um, how do you all plan to ensure the group is a safe, inclusive, and supportive environment for participants from diverse backgrounds?

Well, um, when you first log on, there'll be rules posted before you can even join the group. Uh, we'll make sure that there are safe, confidential ways for people to report any concerns like discrimination or harassment. And if any issues do come up, we'll respond quickly and thoughtfully to make sure everyone feels heard and respected.

We'll also make sure that the group is easy to access so there's no lengthy registration process. Um, and if anyone needs extra support, like captions or translations, we can assist in that area as well. We want to make sure people feel comfortable sharing their experiences without worrying about being judged.

We know that long COVID has impacted certain groups like women, The elderly and marginalized communities at disproportionately high rates, and because of this, we want to make sure that the facilitators and members of the group reflect the diversity of those affected. We can create an environment where everyone is seen and heard, and we can learn from each other's unique experiences and perspectives.

Our main goal is really to make sure that everyone in the group feels safe, included, and heard, and supported. That's so very important. So I know that mental health is a big focus of this initiative, particularly in addressing anxiety and depression. So how do you anticipate the peer support for improving participants mental well being?

So if you think about it, our mental health is negatively impacted every time we get physically ill. Um, when you have long COVID, your mental health really doesn't have a chance to recover because you are really remaining physically ill. So this often results in. in difficulty working. And think about it, if you can't work, guess what?

You may not get paid. You can't get paid, you'll have financial worries. That often leads to depression, anxiety, and other problems. So joining the peer support group with the nurturing environment that we previously discussed, it can really help alleviate anxiety and depression by fostering a sense of community because Everyone in that group understands what you're going through because they're going through it themselves.

Um, they should feel safe to express their fears, their frustrations, and emotions without any type of judgment. We'll make sure of that. And just hearing someone else share similar experiences makes someone feel less isolated because it validates their struggles, reduces their self doubt. out and often normalizes feelings of sadness or worry, making them more manageable.

They also might have an opportunity to learn successes from other people, which can provide them some hope and hopefully go ahead and, um, improve their mental health. Discussing mental health openly within the group also breaks down a stigma and encourages participants to view mental health challenges as a normal response to prolonged illness.

not a personal failing. We're sure that resources will be able to be shared with everyone to maybe help them feel more equipped to handle stressors, go over relaxation techniques. And then it's important that celebrating the small wins, anything someone can share that's positive together fosters positivity and will help everyone improve their mental health.

Yeah, I love that idea. So can You walk us through the group. Can you walk us through the process of forming the planning committee and deciding on key elements for the support group like its frequency and structure? Absolutely. So initially we identified the need for this long COVID peer support group.

The first step was to gather a group of individuals Who are passionate about creating a supportive environment. We formed a planning committee that included healthcare professionals, people that have lived experiences with long COVID and individuals who specialize in community outreach. This mix was key to ensuring that this group would be both medically informed.

and emotionally supportive. As we started brainstorming, we discussed everything from the group structure to how often we should have these sessions. We decided on a virtual format to make it accessible to as many people as possible because long COVID affects individuals across all regions. Um, actually, our kickoff session will be on January 28th at noon, and then we are going to have them weekly.

We feel that this frequency will give people enough time to process our discussions and then connect with others without. Feeling overwhelmed, um, we want to keep the group flexible. Some of the sessions will be more focused on sharing each other's personal experiences while other sessions might feature guest speakers or discussions on coping strategies.

The main goal is to make this group adaptable to the needs of all of our participants, ensuring that everyone can find at least some value in each of our meetings. Most importantly, we made sure the environment will be one of openness and understanding. No one will be judged and everyone's experiences will be respected.

This is really about creating a space where people feel safe to talk and to know that they're not alone. Yeah, I love that. So why was the decision made to hold virtual sessions? And what are the benefits for of this format specifically for long COVID patients? Well, Dr. Storm, this project has, unfortunately, a short time frame, um, so it would really make it almost impossible to schedule in person sessions and have enough people attend at a specific location, date, and time to make the support group worthwhile.

Um, also, since we are now upon the winter season, we never know what the weather will be like that might force a meeting cancellation. And as Sheila just mentioned we want to help as many people as we can, so holding virtual sessions makes the most sense. There's several benefits, including a wider reach by inviting individuals from all over our states of Pennsylvania and West Virginia.

Since people with long COVID often experience symptoms like fatigue, brain fog, difficulty breathing, and mobility issues, we can hopefully increase attendees in our group sessions by allowing everyone to stay in their home. They won't have any travel expenses and best yet, they won't have the risk of more exposure to COVID and other diseases because they're already immunocompromised individuals.

Also, shy people who are hesitant to attend a support group, they may feel less intimidated because they may have the option to not show their face, give their full name in a virtual session where it would be different if it was in person. Yeah, I will say I, um, I'm on the Great Lakes if you got hit with, um, two, five and six feet of snow, uh, right after Thanksgiving, so I can understand in the I think people would appreciate, you know, having a virtual session.

So how will success be measured for the support group and what metrics are you most excited to track as you move forward? So, um, success for our support group would be measured in a few different ways. Um, we'll look at how engaged and active the group is. Are people showing up to the meetings? Are they participating in discussions?

We want to see that everyone feels comfortable enough to share their experiences or that they're listening and learning from others. Another way we'll measure success is by support, how supported our participants feel. We'll ask for feedback like surveys or check ins to see if people feel the group was helpful for them.

Um, a big win would be if they're getting emotional support, helpful information, and have a sense of community. We're also excited to track how participants confidence and well being improve over time. Maybe they feel less isolated, or maybe they've learned new strategies to manage their symptoms. If we can see that people are feeling better, they feel more connected, they feel more empowered in their lives, journey with Long COVID.

We'll know the group is making a positive impact. So our main metrics will track our participation, satisfaction, and personal growth. Those will help us make sure that we're creating the kind of space that truly supports and helps everyone in the group. Yeah, very important to track those things. So if anyone listening out there is, wants to find out more information, how can these individuals find out more about Long COVID?

So we know that there's already a plethora of misinformation out there, uh, surrounding long COVID, um, we want to steer, uh, the members in the right direction of some trusted information sources. So the first place we suggest they go would be to their state or local health departments. Um, for specific resources in their, um, communities.

Um, there's a ton of information online, so we want to give them some trusted sources. Um, the CDC, which is the Center for Disease Control and Prevention, Their website is cdc. gov, and they can go there to get detailed information about symptoms, uh, different diagnoses, as well as treatment options. Uh, another really reputable source on the internet is the National Institute of Health.

Their website is nih.gov and the the NIH provides, um, some comprehensive information, um, that relates to long covid and it, this, uh, website includes publications and data from recent studies as well as summaries of current and ongoing research. So those are just a few of the places where our members can go to get reputable, trusted information, um, surrounding long covid and their symptoms.

Yeah, I think reputable, uh, truthful is very important, and I think people need to know what the right sources are, so I really appreciate you sharing that. So I last question, Sheila. You mentioned that the first session is January 28th, I believe at noon. Um, if somebody is interested in finding out more about maybe joining that session, can they email you?

Would that be okay? Oh, absolutely. Please, please email me pass my email around and along to anyone you know that would benefit from joining this peer support group. Um, my email is. S Barnett, B A R N E T T at qualityinsights. org. That's Q. Oh, I'm sorry. Go ahead. No, go ahead. Okay. I was just going to spell it out.

Make sure that there is an S. It's qualityinsights. org. Okay. And we'll link, and we'll link, um, Sheila's email in the, in the podcast. Thank you all so very much for joining. This is such an important topic and so important that people, individuals out there who are suffering, know that they aren't alone and that there is support available.

Thank you for tuning in to Taking Healthcare by Storm: Industry Insights with Quality Insights Medical Director Dr. Jean Storm. We hope that you enjoyed this episode. If you found value in what you heard, please consider subscribing to our podcast on your favorite platform.

If you have any topics or guests you'd like to see on future episodes, you can reach out to us on our website. We would love to hear from you.

So, until next time, stay curious, stay compassionate, and keep taking healthcare by storm.